I just got results back that I now how another endometrioma from my endometriosis on my remaining ovary. They just removed at 17cm along with my right ovary and tube ten months ago. It is so frustrating to have stage 4 endometriosis as I do, my heart goes out to anyone else suffering from this awful condition.
I send you my best wishes 💜 It's been two months since my laparoscopy (I had a huge chocolate cyst and 8 myomas), and my surgeon emphasized the importance of regular check-ups every six months. I share your curiosity about others' experiences with their doctors. The frustration of misunderstood medical conditions resonates with me deeply. It took years for me to receive a proper diagnosis, facing similar challenges both in Italy and the USA.
So sorry you’re also going through this. I’m also stage 4. Lost a significant part of my right ovary due to endometrioma. Went for ivf and thought that part ovary would be useless and was relying on my left. Turns out that my part of an ovary did twice the amount of work that my full left ovary did and I’ve ended up with 5 embryos. So if people want kids and have to have part of an ovary removed if can still happen! I may need a bowel resection in future as my cervix is attached to my bowel still.
@@joonbug1313have u tried serrapeptase?it is Soo helpful.i was also stage 4 endometriosis and my bowel is also attached to my uterus laparoscopy done 3 years ago.
3:15 painful periods 7:25 Recurrent digestive issues (like bloating, constipation, diarrhea, IBS symptoms, etc) 9:00 Chronic pelvic pain on a regular basis 10:10 Unidentified or random aches and pains (like sciatica, back pain, etc.) 11:00 Painful urination and/or bowel movements 11:30 Painful intercourse (deep throbbing or sharp shooting pain during or after sex)
I have all symptoms, in mri report I have I have endometriotic cyst in ovary , but docter are saying that , this small cyst shouldn't give this much pain
@@ammary4456I read that endometriomas on the ovaries indicate stages 3& 4 of the disease and indicate it will be elsewhere. These cysts only happen at the higher stages. The other tissue may not show up on mri. The cysts alone could absolutely be causing a tonne of pain but it may also be the case that it’s a sign you have it elsewhere too and that’s why you have so much pain.
This video was so helpful. I cried a little watching it because all my life I couldn’t understand my body. I never spoke about my pain with my doctor because I felt like it was just something I had to deal with. I remember begging my mom to not go to school because the pain and discomfort was so hard. Thank you so much!
Now I’m going to cry too! I’m so sorry you had to go through that! It’s so upsetting that there isn’t more said or shared about endometriosis and it’s impact on the body or that doctors are doing their due diligence to speak with their patients about this disease and the many others that cause serious pain and complications. All this does is create shame and stigma about periods and makes us feel scared to speak up when we’re in pain because we feel weak or like something is wrong. But you’re not and you shouldn’t have had to go through that. I hope you’ve been able to get properly treated. 💛
Than you for your help. I have had alot of the sytomes before I got pregnant and after I got my baby ,I took the merina and it misplace and grew to my left uterus,thy had to cut it out. So I had the hormonal breakdown. And the signs got worse and they pain got daily. I to a gynecologist,she said I have no endometriosis,it's my bowl syndrome. But they say dome doctors misplace it for bowl syndrome. Cause endometriosis can also grow to the bowl area. The pain is mostly around the pelvic area and lower back.
I developed chronic diverticulitis. And I had chronic symptoms like IBS. Had to have a colon resection for the diverticulitis and they found my uterus fused into my colon. Undiagnosed endometriosis. That caused me to have a temporary illeostomy and now I have an incisional hernia from the illeostomy reversal. If you have problems like this, don't take medical gaslighting. Keep getting in their face until they actually do something to help you.
@@cakesferdays They did a CT scan each time. That will see the infection/inflammation. It was happening 2 to 4 times a year, and the antibiotics weren't working anymore.
Just you saying to so many of these symptoms - "these are not normal" - made me cry, for 6 years I had doctors telling me its normal and getting brushed off. Finding one doctor who listened, 3 ovarian cysts and a gynaecologist appointment later, they strongly suspect its endometriosis and I will be having surgery soon. Keep fighting to be listened too.
My periods have always been so painful I think after a while I've normalized the pain so it's hard for me to look at as a chronic severe pain . I recently convinced myself that I just have a low pain tolerance.
I believed for so long that I was dramatic and my pain really wasn't that bad. It wasn't til after my surgery and learning all that was going on in my body that I realized I wasn't dramatic and my pain was valid.
I've had several different surgeries over the years and have a high pain tolerance. I told my obgyn that the pain from this is worse than the pain from my last 3 joint surgeries combined. This leaves me curled up in bed.
i’m literally about to cry rn i thought i was crazy. i had no idea how much of my issues could be endo related. it just recently got really bad but i’ve had a lot of these symptoms forever
I've been being treated for chronic back pain for ten years now and finally after a visit to my gynecologist we are starting to connect the dots. Thanks for this.
i just had endo surgery yesterday. i've always told doctors about the sharp pain while urinating and they always dismissed it. Thank you so much for validating it.
I have all the symptoms and will be having diagnostic surgery right before Christmas. Also, getting my tubes removed and anything else he sees needs to be done. My cysts were gone last month according to the ultrasound, but I still have the small fibroids.
i just turned 18, have had chronic stomach issues since 13. periods are debilitating, to the point i go blind and cant move. i was always told i was just sensitive to the "normal" pain that comes when on your period. ive been doing some research on endometriosis and have related with every single symptom. finally went to see a gynecologist recently! so validating to hear that my pain isnt normal and that the pain isnt in my head. thank you for making this video!
I read the comments as I was watchihg and realize how much someone speaking up validates people and sometimes validation is all that is needed to change someone's world. Suffering is never ever normal if someone is in pain and somehow sees this - you might be the only person that can fight for help speak up you dont deserve the pain. It isnt in your head speak up make them listen. In standing up for ourselves now will mean a better future for those that come after us. You matter and you helping you is important. Sitting here pre-op hearing I am not alone and neither are you. You deserve health. Thank you for making this video - this is amazing. For me one day my period bloating did not go away and then I couldn't walk. I hope we can make endo education so mainstream that we can help people before it advances to the extreme stages.
Thank you so much for this video!!! My daughter is really struggling with endo and getting dismissed regularly. She feels like she’s exaggerating and I’ve been trying to validate her and all her symptoms. You’re beautiful and a good woman for sharing your story. ❤️🙌🏽❤️
The sharp pain in my bottom and prolonged constipation and chronic pain in my back and hips has me terrified I have bowel cancer but this seems so much more like what I have. I’m going for blood tests etc but getting diagnosed for endo here in U.K. is almost impossible
It is such a perfect and tragic example of generational trauma causing us to not seek help because the previous generations were ignored and tell us there is no help. Also period pain that lasts for more than a week even if it isn't as severe as Nancy describes. I have been told for 2 decades that I probably have endometriosis but since birth control pills control my symptoms there is not reason to have the surgery. I have been ok with this because I didn't have periods and therefor no debilitating weeks of pain. However, I have had digestive issues, and just general chronic abdominal and pelvic pain my whole life. These have always been unexplained but now as I enter perimenopause everything is just more of a mess and so pissed off as my hormones go nuts. I recognize that when I was asked if anything hurt I said no unless it was something other than the chronic 3-4 level pain I experienced all the time somewhere between my chest and knees. It is making me really angry that these things had an explanation but it has been brushed off by every doctor for decades because clearly they didn't think I was in enough discomfort to justify surgery. No one has ever asked me about all of these things at once and you have hit them all in one video. This is so terribly frustrating.
You’re absolutely correct. These symptoms are normalized and the only way to treat them is via birth control which in man cases does more harm than good. And we’re so conditioned to not seem dramatic about pain that we often downplay our discomfort because we think we’re overreacting. It’s a horrendous cycle.
My pain got horrific after I turned 40, not just a few days but weeks at a time screaming and crying in a fetal position, worst pain I have ever experienced. I couldn't work.
Primary Umbilical Endometriosis - the struggle of trying to explain to the docs that it's a thing is REAL! I need help. This video is the pep talk I needed to continue speaking up for myself.
Watching this on my period after realizing not eating for 3 days on my period is not normal 😂. I have a super debilitating pain on my lower belly between my belly button and the top of my vulva. It feels like there’s some massive swelling that hurts when I’m bleeding and when I have some digestive movement happening. I also went from being super flexible to not being able to bend down or touch my toes because my lower back is hurting so badly. I scream with every bowel movement too. I thought everyone had that
I have non-invasive diagnostic surgery next month. This video was super informative, and I plan to better advocate for myself. My gynaecologist knows I have all the symptoms for Endo, but wants concrete proof for documentation. Took me 27 years to get this diagnosis, and I have been gaslighted all my life about these painful periods. Thank so much and bless your healing!!
@@InnerBloomEnergy Am finally a mother today , because of fibroids my tubes was block for 6years I and my husband was having issue because of my situation no child when I was Searching online on TH-cam about fibroids I saw a testimony about dr Omo so I write him and place order for his herbal today I have 2weeks old baby now he can help you too Herb's work like magic. Both on Endometriosis x
@innerBloom: sister would you mind sharing what non invasive diagnostics surgery for endo mean? Did it take time for you to recover from it? Was it painful? Hope you are doing well 🙏
I will pray for you as well! It’s such a struggle to get properly diagnosed and treated with endometriosis despite it being such a common condition. So prayers 🙏🏾 sent!
I was just diagnosed with endometriosis. It’s so frustrating doctors push bcps like their lives depend on it. I suggest doing your own research on a facility or doctor that specialize in the disease and ask your primary care doctor to give you a referral to the facility or doctor of your choice. Your health insurance might not cover it but your health depends on it. If you can pay out of pocket then please do so. If not, look into Care Credit. It’s a type of credit card that covers medical care for people and pets. They give you a certain amount of time to pay off medical bills. If you pay monthly bills on time there’s no interest.
I'm currently waiting on my CT scan to get my diagnosis!!!! I was told its eaither endometriosis or chrons. I'm feeling all these symptoms 😫 and have been struggling way worse in the past 2 years so much so I am broken down. 💔 broken emotionally and just exausted. I have downplayed way to long to the point I live in my bed with a heat pad. Can't hardly leave house bc it makes the pains more. Thank you so much for telling your journey and giving me some hope. Hope your life is amazing and you are doing well. Sending hellos from Wasilla Alaska, Tschandra
I never heard of painful intercourse described like that! I’ve always assumed it was a stabbing only pain but I definitely relate to the throbbing. I’ll have to check the yes box next time
I have all of those symptoms. I’ve been looking for answers for almost 2 years now. And my pain is getting worse over with each period. My cycle is quite long as well. Those symptoms started to appear when I started to have really really irregular periods.. like i had periods after 4 5 months.. there was a year I had them 8 months apart.. I even got cramps but no period.. this is when I started to notice pain And now it’s getting even worse.. I think it’s time for me to get a diagnosis. Thank you so much for your help You helped me a lot
I have been having these symptoms ever since I was 11 years old now I am 22 and the pain is just unbearable. And private doctors this side are quite expensive and public hospital doctors give me birth controls to stop my cycle all together. Thiis whole thing is becoming stressful to me because I am not working and the pain keeps getting worse with time. Unemployment is high in South Africa.
I almost forgot. Please ask your doctor to write you and order for a HSG test after six months of using this treatment and see if you are clear to go for a baby or to see if you are better if you are not trying for a family. Also taking pre natal vitamins help too. Don’t use them after you become pregnant, use them only when he or she says you need them. Makes sure to follow up with me later.✌🏾
I had 2 doctors refuse to help Me. I was finally diagnosed at 18 years old and I had been fighting for 5 years and I had tried 8 different kinds of birth control. Things are much better but not perfect. I am greatful my new dr was willing to help me
I am so happy for you to be able to share your story, I grew up the same way. 5 years ago my sister was able to find a surgeon for endo. At that time i had spent at least 4 months finding any dr to take me seriously and not think I was a pill popper. Now 5 years later I am going back to the same surgeon even now I moved out of state and I think it is worse. My husband and I will try 1 year to have a child but after that I will have to take some hornones so it doesn't come back again. Thank you for sharing your story, its very special and encouraging for many women.
I have had years of experiencing endo symptoms. It's recently got so bad that I've been in and out the doctors and hospital with UTI, kidney issues, severe abdominal pain, back problems, and long heavy periods. I saw a doctor yesterday that finally believed me. I am now on the waiting list for surgery and have finally felt like there is hope. Although my new doctor does fear it has been left for too long and I could have long-term damage to my organs due to my severe problems over the last 6 months. I can't believe I'm saying this, but I am really looking forward to my surgery. Here is what I have been told by medical professionals over the years, and yes, I remember every word: • I have been told, "It's not possible to bleed for this long." •"The pill will fix it" after years of trying different pills. •"The coil will fix it" after having two different one which don't work. •"It's just IBS, you need to change your diet" even though I have cut out everything that could cause problems and just live on rice and veg. •"It's normal to experience pain in sex just try different positions." Me and my fiancée have just given up as it's too painful for me. • "Your UTI is cause by sex" like I said I have given up. Ladies, don't let these people tell you it's all in your head when you know your body. Don't leave it as long as me who will now potentially suffer with long-term damage. Take Endo seriously and keep fighting for your diagnosis.
One thing I never experienced before I was diagnosed with endometriosis was the painful periods. I hardly ever had any cramps or if I did it was rare. It wasn't until last year when I started to have constant lower abdominal pain that I looked into endometriosis and got a laproscopy that diagnosed it. Unfortunately only a year after surgery I am possibly seeking another surgery.
I do tell people LP is not the way out.. have you ever tried herbal medications it worked for me permanently cleared out everything with no side effects whatsoever with the help of DR MABOSA HERBAL on TH-cam
Thank you for your reply! I've also never had very painful periods and question whether I have endometriosis. I wasn't very hopeful for a diagnosis after my laparoscopic surgery coming this Thursday. Your reply has given me hope of finally having a diagnosis after 10 years of abdominal pain
Oh my goodness, this is soooo me!! I don't have painful or heavy periods. But I suffer from pelvic pain, constipation and a distended stomach full of gas 7-10 Days before my period every month. I saw a doctor who suggested a laparascopy to check for endometriosis and I just dismissed her coz I thought I had to have painful debilitating periods, fibroid etc to have endometriosis. I think I'll book for the procedure now
This video has been very helpful I wish this video was here years ago, I'm 25 years old and I've experienced all these symptoms and when I go to the hospital the doctors just tell me it's normal pains. Thank you so much for this information
I was just diagnosed with moderate endometriosis three weeks ago. I cried watching this video because I downplayed and ignored most of these symptoms. Painful periods Horrible sciatica for no reason Irregular periods on and off birth control Always experienced painful sex Developed ulcerative colitis and had painful/excruciating bowel movements regardless of diet. I just thought it was normal. That was my body. Worse yet, three doctors made me feel like it was in my head and I was not dealing with stress well. Finally I became my own health advocate and found a doctor that was compassionate. We figured out what was happening. It’s been hard. I mourning it a bit. But thank you so much for this video. It makes me feel like I’m not alone in this. I wish I had found this video early and saved myself a lot of heart ache/confusion.
Huge hugs. I went through a mourning period after my surgery and diagnosis as well. It gets better although I still have my moments of anger and frustration. It’s not right for anyone to have to go through this at all.
Thank you for sharing your journey, it will help many. Yeas ur right, the back pain is often not connected with women from endo to fibroids, lower back pain especially can be an issue, our hormone levels during that time, can irritate sciatica and arthritis. Bowel habits too, pain, tingling,constipation don't ignore them
I’ve been in severe pain the last 6-7 months, my doctor prescribed me something for endometriosis today though I haven’t officially been diagnosis. I really pray it helps.
You're so beautiful, love your vibe. Glad I found your video, I've always had painful periods but recently it's a whole new level. Recently, on day 2 of my period I got an insane contraction that would not let go for 30 mins+. It was so bad that I could barely walk and felt like I would pass out. Now my pelvic region feels heavy and like its going to fall out. Thanks for the great video
Thank you so much. It is now going into 3 years of waiting for a laproscopy in the UK. Let's see what happens. Just listening to you and crying also along with remembering my pain, just want to say how much I appreciate all of this and you sharing your experience xxxxxxxxxx
Thank you for this video. It's great to see awareness being raised and just listening to someone who can really empathise is somewhat comforting. I've been pursuing a diagnosis for 12 years now and I'm 2 years into a 4 year waiting list for a scan. This is even considering my mum had it. I've had symptoms since I was 13, dismissed them until I was 17 and then allowed doctors to dismiss them for a further 10 years. I do urge anyone experiencing these symptoms to seek an answer immediately. My symptoms have worsened over the years and it's been a long wait for help. Please also do not be disheartened by doctors who are ignorant to your woes. Keep going until you find the right person to listen. Don't be shy on calling out failures too, emphasise how it impacts your life and mood, point out the poor stats for diagnosis and make them think about it more.
If you have some very uncommon symptoms that do match up to your cycle you could have a more rare version of endometriosis. As a person that has it in their pelvis, inside my bellybutton (umbilical endometriosis), and my chest (diaphragmatic endometriosis), I've had some uncommon symptoms like cyclical debilitating bellybutton pain that progressed to pain 24/7 to chest pain and right shoulder pain.
I have pain in my pelvis, hernias are around my belly button, I have severe pain between my rib cage, a severe pain is in my right shoulder during the painful cramp. My doctors gave pain killers which dont work.
I personally feel sorry hear about this I was diagnosed with endometriosis in 1998.had several tests and symptoms that were described in this post at this time I was 25y old first encounter with Obgyn told by here that I didn't have that diseases call endometriosis. Was white women disease career working putting off child bearing to long. I had the surgery 1998 after I was told by the same Obgyn I'm sorry you do have Endometriosis you should start I sex at The 0f 16 if dream life wad to be come a mother. We did have to remove your left tube and ovary. You should be able to have kids but Is gone be hard. Flash back 🔙 I was born in 1966 black female child who in those days would even think about the word sex and especially bringing up that topic in a black family members with 7 siblings and single black woman. Those really time to get out that black belt are get out of my House if you want be a Woman are due female things. Fast forward until 2014 I gave up 👆 on trying Become a beautiful mother a child. I had hysterectomy 39yrs old all female organs removed accept cervix in was told that I would have deal with pain for rest my life. The symptoms I was explaining to my Obgyn was stage1 but when they went inside it was actually stage 4 so they had to call in Oncologist to remove all scar tissue and adhesions first before the Obgyn and could do his job of removal of the female organs and perform surgery of a hysterectomy Now 2022 There is Know Cure for the Disease ENDOMETRIOSIS All of the procedure and birth control pills surgery varies of opioid pain meds was different medical treatment. Not A Cure for disease ENDOMETRIOSIS. And know I'm 56yrs old fighting suffering with Society label on opioid pain meds That have been used for getting high on addict addiction abuse children who helped perform overdose and Die. Has made hard for me as ENDOMETRIOSIS suffer with chronic pain to be able to function are perform daily life duties and responsibilities. Having so much personal experience journey struggles lifetime with the know Cure Disease ENDOMETRIOSIS. Fighting to get pain clinic for relief and help too feel somewhat comfortable to enjoy the rest of my life. On Earth.
Thank you for posting this video and being a support in this rare chronic disease that it feels like NO on talks about. I have so many of these symptoms I am convinced I have endo. Going to a specialist in New York right now and I can’t wait ❤️
I saw Dr. Seckin and Dr. Chu. All went well. They found 26 pieces of Endometriosis in multiple places in my body. We know our bodies best thats for sure! @@jenpierce2385
Yes just like you when I started my menstrual at the age of 13 and my family use to tell me I was being over dramatic and it was normal. When I got to high school it got event worse with fever, diarrhea, nausea and very bad cramping! But still just thought it was something normal, I never even heard of endometriosis while in high school. Things as gotten so much better now in my 30’s but I still don’t know if my experience had anything to do with endometriosis.
Am finally a mother today , because of fibroids my tubes was block for 6years I and my husband was having issue because of my situation no child when I was Searching online on TH-cam about fibroids I saw a testimony about dr Omo so I write him and place order for his herbal today I have 2weeks old baby now he can help you too Herb's work like magic. Both on Endometriosis x
My Mom had to pick me up from school (started in 6th grade) often because of them. She's come into me whiter than paper, green, unable to walk, etc... the school refused to keep a bottle of ibuprofen on hand. They wanted her to bring in the Adderall though. :/
I cried at this video. I definitely have the first two symptoms - chronic debilitating painful periods and chronic digestive issues. I really want to have a diagnosis but I am too scared of having a laparoscopy :( what do I do?
The most important thing you can do right now is find a doctor that specializes in diagnosing and treating endometriosis. I was terrified of having surgery too I’d never had major surgery before however knowing that I was in good hands and my doctor did a fabulous job explaining everything to me made it a little bit better. And not having to live in pain everyday has made it worthwhile. Good luck to you on your journey keeping you in my prayers and sending you love ❤️
Girl, we need to advocate for your own health because no one else will. If we are suffering, we need to get desperate to find a solution. My symptoms are currently affecting my everyday life and I am so over it! I am also super scared for the laparoscopy as I have never had surgery. Just know that the surgery is what it takes and once we have an answer to why we are in so much pain- we will have instant relief (at least I know I will) hang in there sister ❤️
Thank you so much. After this video I decided to get a second opinion. My sister has endometriosis at the worst stage, and mom had ovarian cysts and endometriosis.
@@Femmepower well I have a dominant ovarian cyst and they did find some endometriosis. I'm meeting with a surgeon on the 24th to discuss my options for a hysterectomy. Bless you!
I have a scan this week. My dr thinks I have pcos but I’m convinced I have endometriosis. I have one symptom of pcos vs 5-6 symptoms of endometriosis. I’m praying I don’t get misdiagnosed!😭
unfortunately it can be both. Ive had both for a long time but was mostly attributing my symptoms to the PCOS only. (they are slightly different) but its only recently that the endo has worsened
It's so crazy to me that only in this last year did anyone even consider endometriosis as a possibility for me. I've been to zillions of doctors. So many specialists hospitals all over the country. Emergency rooms everywhere and this was never brought up until this last year when I finally ended up with a gynecologist that had a side specialty in endometriosis. Just had my laparoscopy and it has completely taken over organs and my abdominal cavity. I've had horrible violent periods and terrible symptoms that check every box of every video I've watched in the last year. That should have been red flags all along. It started with my period at 9 years old. I am 36 and just now like a week ago. Got an official diagnosis. So insane.
I'm on the birth control shot that stops my period. No one understands that when I had the periods that they hurt so bad for years. I bleed so bad, that I will bleed through a super plus tampon within half an hour. I would get so many clots and every tried to say I was over reacting. Tried to show people the clots through photos and I was told I'm the grossest person for taking photos of it. They have been huge and really painful coming out. No pain meds help, ever. I will get sick all the time when I would bleed. No one wants to find out what's wrong with me. My dad thinks I'm over reacting, my sister who is a nurse claims I'm a liar and don't know anything. The doctor I saw doesn't believe me because I'm adopted and don't know family history. He really asked me how I didn't know family history even though I told him I'm adopted. You don't get that stuff when you are removed from a abusive home at 14 months old. You don't get health history when you are adopted, ever. I have no one to turn to.
I understand what you’ve been through and how frustrating it feels when no one listens and thinks you’re lying or exaggerating. Keep advocating for yourself and researching doctors that specialize in disorders like endometriosis, adenomyosis and fibroids. Even without medical history your personal Menstrual history of symptoms should be enough to prove there’s something going on that needs to be addressed. I hope it gets better for you and you get the answers you need.
Hi, I have my diagnostic laprascopy Monday. I just finished the book "Beating Endo" written by an Endo doctor and pelvic PT. I found it very helpful and am transitioning my diet. Keeping you in my prayers. ❤️
i sure do have a lot of irregular periods a lot lately and I never had this irregular period before Usually I have a regular period and track my period but the pain I'm going through my back and everything. now it makes me want to get diagnosed.
This was so informative I appreciate it so much. I always suspected that I have endo but no doctor I have ever had has really listened to me or done more then send me for blood work. I set an appointment for this week with a new doctor and I intend to advocate for myself going forward- going on 3 weeks of consecutive pain and I’ve finally have had enough of just hoping it goes away.
Thank you… I have been having pain similar to labor pain since I was 14… I’m 42! I’m now having digestive issues and didn’t know why. Thank you!!! I’m in pain all month long wow
I am so unsure but i have so many of these symptoms just not in the worst version. I feel like I am not in enough pain to have endometriosis... I have a history of smaller health problems and just feel embarrassed when talking about multiple problems with my doctor. So I often just mention one and leave.... Thank you though for this video❤ - it really helped knowing what other symptoms can be🙈
With Endometriosis the pain varies, some people don't experience pain at all. They only find out when they try to conceive. Don't let embarrassment stop you from getting the help you need.
My symptoms started off small as well and grew into larger ones. Don’t hesitate and talk to your doctor about everything that’s bothering you! There’s no need to be ashamed or embarrassed you’re doing what you need to do to take care of your health and well-being. Praying you get the courage to share this information with your doctor and get answers.
@@armanirone3354 my pain can be dulled by a mild painkiller so I've been dismissing all my other symptoms too thinking it's not too bad coz I can function with a painkiller
Thank you for sharing this. I am currently going through this. I have been in pain for a week. It’s debilitating and they’ve always said they believe I have endometriosis. My birth control won’t work for me anymore so they recommended an IUD. The placement of the IUD alone made my cramps worse. I left the office in tears. I asked for stronger pain meds but I was told to keep taking Tylenol and use a warm towel or heating pad. I’m in my 30s but I am so over it. It’s been this way since I was 11.
When you said a pulling or ripping sensation I literally started crying Ive been having horrible pains since the age of 12 and I used to pass out because of it I’m 22 now and was diagnosed when I was 21 who should I go to because my female gyno just tells me it’s my body changing when I told her medications don’t really help
i have my first gyno appointment on the 19th!! hopefully i can get my pain figured out!! thank you for this video!! it was well put together and very educational!!
I’ve had awful periods since it started. I occasionally get cramps outside of my period, I missed school/work during my period, i get nausea and diarrhea, i can barely walk while i have cramps, NSAIDS barely work for me anymore, every time my uterus cramps my bowel does as well. I’ve been to the OBGYN and she just adjusts my birth control every time , it never helps. I feel like i’m not being taken seriously since I’m young (I’m 19), and it’s quite frustrating.
I’m so sorry you have to deal with this I completely understand and no birth control is NOT a solution. Hopefully you will find a doctor sooner rather than later that can properly help and treat you. 💕
I have the worst periods ever but I never tell my Gynecologist. Whenever he asks me I always say I have no pain (from early I have had debilitating periods, nausea, vomiting, extreme weak, ...) but I don't like medicine so I lie about my symptoms and I definitely don't want birth control or anything that changes my hormones cause I'm extremely sensitive to hormonal changes. My mom has never had painful period just heavy
Have you considered looking into a gynecologist that specializes in diagnosing and treating endometriosis? I know they’re hard to find and the majority of gynos see the pill as the cure for everything but finding and working with the right doctor is really helpful at least in my experience. And have you looked into holistic approaches to improving periods with nutrition? This was another game changer for me and reduced my period pain.
I never knew this till I was diagnosed, but this tends to affect women that haven’t had kids, I always thought the opposite was true. I am the only woman in my family full of women to have been diagnosed with this. I thought other women in my family might have this, as it seems to be genetic, but my mom brought up the point that I am the only woman in my family that never had kids. I wound up in the ER with this last week, passed out cold from the pain. Lately it seems to get worse every month. I am scared to death of next month, as I can’t imagine what could be worse than last month. Get a dr you feel comfortable with, but don’t ignore this. It will get worse. It can affect your fertility. I never wanted to have kids, but if you do, it’s really not something to ignore. It doesn’t go away or get better, like I was hoping it would. Trust me, you don’t want to wind up in the ER for 12 hours, alone, in pain, and getting tested then. If you thought it hurt before, wait till they start doing invasive tests at 3am while your pain is at an all time high. I’ve always avoided DRs, but after that er visit, I am a firm believer in prevention. Tell your DR, grrl! I’m 43 by the way, but been dealing with this for years. In the last couple of years, it’s really gotten bad. Now it’s chronic, I’m either uncomfortable or in pain all the time. I don’t like meds either, but I have to eat Advil all the time now. It’s the only thing that works. I have an appt tomorrow, so I’m hoping for a solution. I’m seriously considering a hysterectomy. Wish me luck tomorrow, and tell your Dr!!!! This is not in your head! Some women have said endo pain rivals the pain of giving birth. I wouldn’t know, as I haven’t had kids, but I broke my arm, and that pain was nothing compared to this. I could take a broken bone any day over endo pain. This affects many aspects of life, and now that I know what I’m dealing with, I can connect the dots, and hopefully come up with a plan. There is no cure for this. Dont take this lightly, it’s no joke. I’m hoping help is out there. I guess I’m about to find out. Wish me luck!
@@crazybird1619 ok I'm really contemplating what you just said if it gets worse overtime. I'll probably have to tell me gynecologist next visit then. Sorry about the pain. Hope you get proper treatment that helps. Good luck
I do have endometriosis and I have terrible IBS like symptoms, I’ve yet to find a doctor who will get to the root cause. Rather they give me a new birth control pill every other couple of weeks, and I have adverse reactions to them every time, I have a long history of adverse reactions to birth control. And don’t get me started on digestive issues, they just keep pushing the IBS and possible UTIs (without proof of presence of UTI) it’s been absolutely ridiculous on this journey 😭😭😭
I completely understand and it's something I'm worry, especially with the journey of dismissive doctors or just want to put a Band-Aid on it to masked those symptoms and not caring enough to look into it more. I believe, I may have combination of PCOS (I been diagnosed with PCOS approximately almost year) and endometriosis. I experience digestive issues, unbearable pains or pains in general for a 1-2 weeks before and during it gets worse, irregular menstrual cycle (bleeding two months for example, skipped x amount of months, bleeding heavy, sometimes light or medium bleeding), I urinate alot even more during period and etc. I want to discuss this with the endocrinologist.
I'm sorry you're having this problem. I had IBS like symptoms as well and my doctors kept pushing me on the pill but it just masked the symptoms and caused other complications. I wish there were more doctors that were endometriosis experts. There's a few out there but they're hard to find and are far away.
This happened to me too. Ever since my first period, no validation for these debilitating symptoms. Finally got excision surgery at 32 years old and confirmed endo all over the back of my uterus. I almost couldn't believe it even though I suspected endo my whole life. I was always told no, just go on the pill.
I think I have it I have many symptoms but always thought it was just normal but now with 2 years of infertility and they can't find what's wrong with me but I think it's endo.
@@SM41790 definitely see an endo specialized gyno if you can! I think that infertility makes them more likely to suspect endo than just pain as sad as that is
You are right! I was misdiagnosed for uears until my belly grew to what seemed a 6month pregnancy. Still a doctor denied anything was wrong even though he stuck his hand in. I insisted with another doctor and was taken into surgery to find a large uterine fibroid & ovarian cyst. My mom unaware of anything of the sort ignored my pain. Evetually fibroid & ovarian cyst came back along with a buddy endomitriosis. Today managing the symptoms.
Yours was the first helpful piece of content that actually mentioned something related to what I'm trying to find out. I'm diagnosed already. My endometriosis appeared in the ultrasound before I noticed any symptoms. Or did it? Cause, see... I had everything, besides the intense cramps. I had cramps in the past , when I was a teenager, but it stopped. Maybe because I started taking counterceptive, I'm not sure cause no one answers my questions about the endo. But I had the pain during sex, I had so intense bleeding that I would have to use the night pads on the day. The urgency to pee, and peeing too frequently. Strongly constipated for days in a roll, having to take laxatives, fiber supplement, etc, to be able to poop. And the pain, in the year that the endometriosis showed in the routine ultrasound, I started having debilitating pain flares all over my body, but specially on my legs, abdomen, backs and neck. But yes, everything hurts. And no one can tell me why. So they referred me to a rheumatologist, who thinks it can be fibromialgia, but today I was in the toilet with my stabbing cramp and my poop pain, and my legs started hurting and my feet hurt just the way it does when I go to the ER in an healthy anxiety attack (yes, I'm bipolar and I got several specific anxiety comorbid) thinking "my legs hurts too much, it's a clot, it's gonna travel to my lungs and I'm gonna die"... And the Doctors, because I'm bipolar and anxious, says, it's psychological... See... I'm examining... There's nothing... Here's a benzo.... Some of them sometimes give me something for the pain. I'm taking notes of which ones work to tell the rheumatologist. But anyways. Yes, I know I may have both conditions... But I'm sick of being told my pain is from my "mind" just because I have a psychiatric history. Back to the beginning of this comment... It's been very hard to find anything related to pain that is not in the pelvis, lower back or legs, and is related to endometriosis. Does anyone know if endometriosis pain can irradiate to other areas of the body?
I get nausea and painful bowel movements ,my cramps are moderately severe and I don't bleed a lot ,but I REALLY feel awful ,I also urinate a lot during period ,and feel so tired
I have been having painful periods from the time i got my period, I have been experiencing most of the symtoms including digestive issues such as bloating which was soo bad that people used to think that i was pregnant, it happened wirh and without my menses, sharp pain in my lower back up to a point when at three different occations i was unable to move when it struck me, pins and needles in my extremities, pain in the soles of my feet, constipation as well as pelvic and inner thigh pain, sometimes i wonder if endo is the culprit, have a sister with fibroids and it is nothing easy for her.
So… I’m convinced something is really wrong. I have back and pelvic pain and pain during intercourse. I went to the doctor and he put the speculum in and I swear it was the worst pain ever… and the pain after was so bad. It’s starting to get a little better but I can’t believe it how much it hurts. It’s never felt like that before ever!!!!! I am glad you said that in your video. The doctors solution was to go on birth control and recommended the iud. I don’t know if I want to do it. I just want a doctor to listen to me.
I also have pain during intercourse to the point where i need few seconds for the burning and "feels tearing" inside of me to subside. I suffer from extreme bloating to the point where I always look like I'm pregnant like my friends are always shocked looking how my belly goes big. Stomach issues before and during period and back pain. Abdominal pain during period to the point where I cant stand too long and needs to slightly bend my back forward. But I didn't go to the doctor yet because I'm afraid.
If you feel your doctor isn't listening to you and you're questioning his reccommendations it doesn't hurt to get a second opinion. And while I'm not a medical professional I do know from personal experience that hormonal birth control can mask symptoms of endometriosis. So, it's better to get an accurate diagnosis and then decide if you want to utilize hormonal birth control to manage your symptoms.
I found one who listens to me and my pain they help me a lots I found out I had endometriosis in 2009 when I come back home to New Orleans after hurricane Katrina in 2005 I have stage 4
for me the pain was so bad that i was unable to work. I couldn't even put my finger on the pain it was all in one area my lower stomch the problem was I had gained weight close to fifty when it had worsened so everything on and round my belly felt soft to the touch but on my end i could feel the knot near my lower "abs" the pain was so bad i was in and out of the emergency room they even labeled me a drug addict and placed me in a drug rehab which just made the pain worse. at the time i had never even heard of endometriosis its been 7 years since my surgery, my only fare now is the pain in my lower back and the small knot in my belly.
I’m so sorry they didn’t believe your pain and went as far to send you to drug rehab! How upsetting that must have been for you. I’m glad you found some relief post surgery. Currently I’m 2 years post surgery and still experience low back pain on my left side and radiating leg pain. This mostly occurs before and during my period. But still talk to your doctor about it especially if those symptoms began recently.
Thank you so much for taking the time to make this. After experiencing a miscarriage and having a hard time getting pregnant again during a talk with the dr as to next steps he mentioned endometriosis which I always had an inkling in the back of my mind. I’m just at the beginning of this diagnostic journey and more tests and such are in the future I’m sure but this video was SO informative and I’ve never felt more seen!! Sending all my love to everyone here dealing with endo pain 💗
I have all these symptoms and the reason why it's gone so long for me to follow up is because my mum and sister all have the same experiences so we all say "it's normal" finally started to do some investigation now.
Thank you so much! I started have random pelvic pain in the second half of the cycle about 3 years ago, have brought it up with 4 different ob/gyns and all of them except one just told me "it's probably due to ovulation". Totally agree that seeing a Dr. is one thing, but something else is to manage to advocate for yourself and have them take you seriously. The last Dr. I found finally suggested it could be endometriosis but that it's very difficult to diagnose. So unresolved yet but your video is inspiring in terms of how to move forward!
I also really appreciate you remind us we shouldn't just accept the pill. I find it wild that it's the "magic solution" that all ob/gyn Drs. preach without consideration for what it does to your body or without giving other alternative options. I don't want to put hormones in my body on a regular basis so no I wont!
THANK YOU for saying we don’t have to accept birth control. every time i complain about my pain there’ll always be someone to say “if it’s that bad just go on birth control”. like hello?? the side effects are crazy
I will add that for sciatic endometriosis which can cause the hip or leg pain and numbness and tingling should not be ignored. There are case reports where it has led to paralysis. Personally i use OCP to control the symptoms such as paralysis, numbness and tingling. The pain has reduced but is still there but i apply ice compresses to my waist to also help with the symptoms. Surgery around the nerve to remove the endometriosis is available, but it is expensive and there are only a few experts on it and surgery around nerves comes with risks too. Hang in there. Try to deal with the pain and try to keep walking to make use of your muscles.
I have been going to the GP for 5 years with symptoms: very painful and heavy periods that last 7 days, back and pelvic pain, ovulation pain, thigh pain during menstruation, constipation or diarrhea, I often have anemia, spotting before menstruation or 4 days before, dizziness and fainting.
It's been beyond frustrating. The last two years I've been to 2 different primary drs, and neither could give me a reason behind my pain. I was told to go see a GI dr you might need a colonoscopy. Went to a GI dr only to be told you probably have ibs, so do this diet and just watch what what you eat. Of course, I've also been to my gyn, and she told me it's completely normal having pelvic pain, but I guess she was nice enough to send me for a vaginal ultrasound. That came back clear, so back to square one for advocating for myself. Was studying and researching pcos and now I truly think this is what I've been struggling with all along. I cannot imagine the women who didn't find out until many years later. This pain is debilitating and miserable!
My long distance girlfriend just fell very sick on her period (second time in february this year) very suddenly out of nowhere, she went to the hospital and turns out after the CT scan she had inflamed ovarys, bowel, uterus and appendix with symptoms suggesting appendicitis. To add ontop of that, during the laproscopic surgery for her appendix they found a cyst on her right ovary (hopefully not endometrioma), confirmed appendicitis so her appendix was cut out, ahernia and also was diagonosed with endo... this has been very painful for me and especially her that I cant be there with her on such short notice, I also didnt even know what endo was until now, and im trying to educate myself as much as possible to try and understand what she will have to go through on a monthly basis for the rest of her life until menopause, hopefully the pain wont be as bad as the most recent of her period because of all the other problems she had at the same time, and hopefully it wont cause infertility problems. She had a family history of endo with her grandmother, mother, sister and her so it was expected. She had her surgery yesterday night and is recovering safely at home, but still has really bad pain, not really sure if the surgeons did anything with the lining outside of the uterus (that is still being confirmed). Me and her are quite shaken from the sudden amount of problems that she developed OVERNIGHT might I add, and me not being able to be there for her hurt me mentally. Shes a very strong girl for being able to tough it out and i know I wouldve just died on the spot if I had all that. Luckily we live in Australia where free health care exists, so it wont be taking too much a toll on money as other contries like America would.
I relate to every symptom as well, except vomiting, i just dont vomit in general. But ive seen several gynecologists and they've been extremely unhelpful...mocking me and telling me to just take painkillers. Not even a combination of strong painkillers works anymore, and my experience with doctors so far has been so horrendous im so scared of going again....
Yes go get it checked out! Spotting is a symptom of endometriosis but it's also a symptom of so many other things so it's better to be safe and find out what's going on. Good luck and I hope all is well!
I've been to several doctors because my abdominal pain has gotten so bad it's debilitating. They told me it's just IBS and I need to lower my stress levels and do yoga and eat more fiber. But I'm suspecting it's actually endometriosis because I have all these same symptoms you described with the long heavy and very painful periods in addition to the digestive issues that go with it. It's not just a digestive problem. But since they can't see anything on the ultrasound they keep saying it's just IBS. 😔
It’s common for endometriosis to be misdiagnosed as IBS. And unfortunately, endometriosis can't be seen or diagnosed via ultrasound. If possible, try to find a doctor that specializes in endometriosis. They are hard to come by and cost a pretty penny but working with someone that understands how this horrible disease affects the body is helpful. I'm hoping you're able to find a good doctor that can help you identify what's causing your symptoms and get you treatment.
A colonoscopy is a bit of an easier procedure than the exploratory laparoscopy. I thought I had IBS but my colonoscopy was completely clear which ruled out digestive issues. Xxx
Happy to share after 10+ years I'm finally getting my laparoscopic procedure on Wednesday!! 🎉🎉🎉
how was it?
When you said we shouldn't have to accept birth control...I started crying...I don't cry!
Sending you hugs ❤️
💕💕💕💕💕💕
My mom thought I was a retart lol I'm not getting on that without seeing other options
I just got results back that I now how another endometrioma from my endometriosis on my remaining ovary. They just removed at 17cm along with my right ovary and tube ten months ago. It is so frustrating to have stage 4 endometriosis as I do, my heart goes out to anyone else suffering from this awful condition.
I send you my best wishes 💜 It's been two months since my laparoscopy (I had a huge chocolate cyst and 8 myomas), and my surgeon emphasized the importance of regular check-ups every six months. I share your curiosity about others' experiences with their doctors. The frustration of misunderstood medical conditions resonates with me deeply. It took years for me to receive a proper diagnosis, facing similar challenges both in Italy and the USA.
See a Traditional Chinese Medicine doctor. They can cure you.
So sorry you’re also going through this. I’m also stage 4. Lost a significant part of my right ovary due to endometrioma. Went for ivf and thought that part ovary would be useless and was relying on my left. Turns out that my part of an ovary did twice the amount of work that my full left ovary did and I’ve ended up with 5 embryos. So if people want kids and have to have part of an ovary removed if can still happen! I may need a bowel resection in future as my cervix is attached to my bowel still.
@@mindyourspirituality570they can maybe help in the management but there is no cure for endo
@@joonbug1313have u tried serrapeptase?it is Soo helpful.i was also stage 4 endometriosis and my bowel is also attached to my uterus laparoscopy done 3 years ago.
3:15 painful periods
7:25 Recurrent digestive issues (like bloating, constipation, diarrhea, IBS symptoms, etc)
9:00 Chronic pelvic pain on a regular basis
10:10 Unidentified or random aches and pains (like sciatica, back pain, etc.)
11:00 Painful urination and/or bowel movements
11:30 Painful intercourse (deep throbbing or sharp shooting pain during or after sex)
Hiiii
The back pain is for sure.Had my surgery and not getting it again
I have all the symptoms except painful urination and bowel movements
I have all symptoms, in mri report I have I have endometriotic cyst in ovary , but docter are saying that , this small cyst shouldn't give this much pain
@@ammary4456I read that endometriomas on the ovaries indicate stages 3& 4 of the disease and indicate it will be elsewhere. These cysts only happen at the higher stages. The other tissue may not show up on mri. The cysts alone could absolutely be causing a tonne of pain but it may also be the case that it’s a sign you have it elsewhere too and that’s why you have so much pain.
This video was so helpful. I cried a little watching it because all my life I couldn’t understand my body. I never spoke about my pain with my doctor because I felt like it was just something I had to deal with. I remember begging my mom to not go to school because the pain and discomfort was so hard. Thank you so much!
Now I’m going to cry too! I’m so sorry you had to go through that! It’s so upsetting that there isn’t more said or shared about endometriosis and it’s impact on the body or that doctors are doing their due diligence to speak with their patients about this disease and the many others that cause serious pain and complications. All this does is create shame and stigma about periods and makes us feel scared to speak up when we’re in pain because we feel weak or like something is wrong. But you’re not and you shouldn’t have had to go through that. I hope you’ve been able to get properly treated. 💛
@@Femmepower thank you so much for your kind words! I’m looking into finding a doctor and focusing on myself and my health!
@@francescamaina5297 Have you found a good doc now? How are you feeling now? What treatment did you get?
Than you for your help.
I have had alot of the sytomes before I got pregnant and after I got my baby ,I took the merina and it misplace and grew to my left uterus,thy had to cut it out. So I had the hormonal breakdown. And the signs got worse and they pain got daily. I to a gynecologist,she said I have no endometriosis,it's my bowl syndrome. But they say dome doctors misplace it for bowl syndrome. Cause endometriosis can also grow to the bowl area. The pain is mostly around the pelvic area and lower back.
Honestly I cried too.
I developed chronic diverticulitis. And I had chronic symptoms like IBS. Had to have a colon resection for the diverticulitis and they found my uterus fused into my colon. Undiagnosed endometriosis. That caused me to have a temporary illeostomy and now I have an incisional hernia from the illeostomy reversal. If you have problems like this, don't take medical gaslighting. Keep getting in their face until they actually do something to help you.
Big hugs to you, that's a lot to go through, I hope you're doing well today ❤
So sorry :( how did they diagnose you for diverticulitis?
@@cakesferdays They did a CT scan each time. That will see the infection/inflammation. It was happening 2 to 4 times a year, and the antibiotics weren't working anymore.
Just you saying to so many of these symptoms - "these are not normal" - made me cry, for 6 years I had doctors telling me its normal and getting brushed off. Finding one doctor who listened, 3 ovarian cysts and a gynaecologist appointment later, they strongly suspect its endometriosis and I will be having surgery soon.
Keep fighting to be listened too.
My periods have always been so painful I think after a while I've normalized the pain so it's hard for me to look at as a chronic severe pain . I recently convinced myself that I just have a low pain tolerance.
I believed for so long that I was dramatic and my pain really wasn't that bad. It wasn't til after my surgery and learning all that was going on in my body that I realized I wasn't dramatic and my pain was valid.
I've had several different surgeries over the years and have a high pain tolerance. I told my obgyn that the pain from this is worse than the pain from my last 3 joint surgeries combined. This leaves me curled up in bed.
i’m literally about to cry rn i thought i was crazy. i had no idea how much of my issues could be endo related. it just recently got really bad but i’ve had a lot of these symptoms forever
After reading about it made sense how eating beets helped after my p. I told my doctor many times but they said it was normal
I've been being treated for chronic back pain for ten years now and finally after a visit to my gynecologist we are starting to connect the dots. Thanks for this.
You’re so welcome! Glad your doctor listened and is helping you get to the root cause of your pain.
I think I have endo but I keep putting off to get the test done 🤦🏾♀️
i just had endo surgery yesterday. i've always told doctors about the sharp pain while urinating and they always dismissed it. Thank you so much for validating it.
Same here
I have all the symptoms and will be having diagnostic surgery right before Christmas. Also, getting my tubes removed and anything else he sees needs to be done. My cysts were gone last month according to the ultrasound, but I still have the small fibroids.
i just turned 18, have had chronic stomach issues since 13. periods are debilitating, to the point i go blind and cant move. i was always told i was just sensitive to the "normal" pain that comes when on your period. ive been doing some research on endometriosis and have related with every single symptom. finally went to see a gynecologist recently! so validating to hear that my pain isnt normal and that the pain isnt in my head. thank you for making this video!
I'm so sorry you were invalidated like that! I don't know why it's ok for people to normalize extreme period pain.
I’m literally crying. I feel so seen, finally.
I read the comments as I was watchihg and realize how much someone speaking up validates people and sometimes validation is all that is needed to change someone's world. Suffering is never ever normal if someone is in pain and somehow sees this - you might be the only person that can fight for help speak up you dont deserve the pain. It isnt in your head speak up make them listen. In standing up for ourselves now will mean a better future for those that come after us. You matter and you helping you is important.
Sitting here pre-op hearing I am not alone and neither are you. You deserve health.
Thank you for making this video - this is amazing.
For me one day my period bloating did not go away and then I couldn't walk. I hope we can make endo education so mainstream that we can help people before it advances to the extreme stages.
Thank you so much for this video!!! My daughter is really struggling with endo and getting dismissed regularly. She feels like she’s exaggerating and I’ve been trying to validate her and all her symptoms. You’re beautiful and a good woman for sharing your story. ❤️🙌🏽❤️
Please get her help.
The sharp pain in my bottom and prolonged constipation and chronic pain in my back and hips has me terrified I have bowel cancer but this seems so much more like what I have. I’m going for blood tests etc but getting diagnosed for endo here in U.K. is almost impossible
Dr.Andrew Baxter Thornbury hospital Sheffield can diagnose endometriosis on laparoscopy ,is a private gynecologist
This is sooo accurate to what I'm experiencing! And you're soo right about the diagnosis in the UK they just don't listen
It is such a perfect and tragic example of generational trauma causing us to not seek help because the previous generations were ignored and tell us there is no help. Also period pain that lasts for more than a week even if it isn't as severe as Nancy describes. I have been told for 2 decades that I probably have endometriosis but since birth control pills control my symptoms there is not reason to have the surgery. I have been ok with this because I didn't have periods and therefor no debilitating weeks of pain. However, I have had digestive issues, and just general chronic abdominal and pelvic pain my whole life. These have always been unexplained but now as I enter perimenopause everything is just more of a mess and so pissed off as my hormones go nuts. I recognize that when I was asked if anything hurt I said no unless it was something other than the chronic 3-4 level pain I experienced all the time somewhere between my chest and knees. It is making me really angry that these things had an explanation but it has been brushed off by every doctor for decades because clearly they didn't think I was in enough discomfort to justify surgery. No one has ever asked me about all of these things at once and you have hit them all in one video. This is so terribly frustrating.
You’re absolutely correct. These symptoms are normalized and the only way to treat them is via birth control which in man cases does more harm than good. And we’re so conditioned to not seem dramatic about pain that we often downplay our discomfort because we think we’re overreacting. It’s a horrendous cycle.
Exactly!
My pain got horrific after I turned 40, not just a few days but weeks at a time screaming and crying in a fetal position, worst pain I have ever experienced. I couldn't work.
Primary Umbilical Endometriosis - the struggle of trying to explain to the docs that it's a thing is REAL! I need help. This video is the pep talk I needed to continue speaking up for myself.
Watching this on my period after realizing not eating for 3 days on my period is not normal 😂. I have a super debilitating pain on my lower belly between my belly button and the top of my vulva. It feels like there’s some massive swelling that hurts when I’m bleeding and when I have some digestive movement happening. I also went from being super flexible to not being able to bend down or touch my toes because my lower back is hurting so badly. I scream with every bowel movement too. I thought everyone had that
I have non-invasive diagnostic surgery next month. This video was super informative, and I plan to better advocate for myself. My gynaecologist knows I have all the symptoms for Endo, but wants concrete proof for documentation. Took me 27 years to get this diagnosis, and I have been gaslighted all my life about these painful periods. Thank so much and bless your healing!!
I will keep you in my prayers and wish you a speedy recovery from your surgery!
@@Femmepower Thank you so much 🙏🏾✨
@@InnerBloomEnergy Am finally a mother today , because of fibroids my tubes was block for 6years I and my husband was having issue because of my situation no child when I was Searching online on TH-cam about fibroids I saw a testimony about dr Omo so I write him and place order for his herbal today I have 2weeks old baby now he can help you too Herb's work like magic. Both on Endometriosis x
@innerBloom: sister would you mind sharing what non invasive diagnostics surgery for endo mean? Did it take time for you to recover from it? Was it painful? Hope you are doing well 🙏
Been fighting for the past year to get tested, Dr. Keeps just wanting me to take birth control. Just moved, so praying my new doctor will help me.
I will pray for you as well! It’s such a struggle to get properly diagnosed and treated with endometriosis despite it being such a common condition. So prayers 🙏🏾 sent!
@@Femmepower thank you very much
I was just diagnosed with endometriosis. It’s so frustrating doctors push bcps like their lives depend on it. I suggest doing your own research on a facility or doctor that specialize in the disease and ask your primary care doctor to give you a referral to the facility or doctor of your choice. Your health insurance might not cover it but your health depends on it. If you can pay out of pocket then please do so. If not, look into Care Credit. It’s a type of credit card that covers medical care for people and pets. They give you a certain amount of time to pay off medical bills. If you pay monthly bills on time there’s no interest.
@@neiya8862 thank you. I am currently looking into getting my own doctor. And I will look into care credit.
I went through the same thing as a young woman. Thank you for highlighting this issue!
I'm currently waiting on my CT scan to get my diagnosis!!!! I was told its eaither endometriosis or chrons. I'm feeling all these symptoms 😫 and have been struggling way worse in the past 2 years so much so I am broken down. 💔 broken emotionally and just exausted. I have downplayed way to long to the point I live in my bed with a heat pad. Can't hardly leave house bc it makes the pains more. Thank you so much for telling your journey and giving me some hope. Hope your life is amazing and you are doing well. Sending hellos from Wasilla Alaska, Tschandra
I never heard of painful intercourse described like that! I’ve always assumed it was a stabbing only pain but I definitely relate to the throbbing. I’ll have to check the yes box next time
I have all of those symptoms. I’ve been looking for answers for almost 2 years now. And my pain is getting worse over with each period.
My cycle is quite long as well.
Those symptoms started to appear when I started to have really really irregular periods.. like i had periods after 4 5 months.. there was a year I had them 8 months apart.. I even got cramps but no period.. this is when I started to notice pain
And now it’s getting even worse.. I think it’s time for me to get a diagnosis.
Thank you so much for your help
You helped me a lot
Praying you get answers!
Thank you so much. It can be such a lonely journey but I'm so grateful for the other women to speak to and relate with. And I'm just trusting in God
I have been having these symptoms ever since I was 11 years old now I am 22 and the pain is just unbearable. And private doctors this side are quite expensive and public hospital doctors give me birth controls to stop my cycle all together. Thiis whole thing is becoming stressful to me because I am not working and the pain keeps getting worse with time. Unemployment is high in South Africa.
I almost forgot. Please ask your doctor to write you and order for a HSG test after six months of using this treatment and see if you are clear to go for a baby or to see if you are better if you are not trying for a family. Also taking pre natal vitamins help too. Don’t use them after you become pregnant, use them only when he or she says you need them. Makes sure to follow up with me later.✌🏾
I had 2 doctors refuse to help Me. I was finally diagnosed at 18 years old and I had been fighting for 5 years and I had tried 8 different kinds of birth control. Things are much better but not perfect. I am greatful my new dr was willing to help me
I am so happy for you to be able to share your story, I grew up the same way. 5 years ago my sister was able to find a surgeon for endo. At that time i had spent at least 4 months finding any dr to take me seriously and not think I was a pill popper. Now 5 years later I am going back to the same surgeon even now I moved out of state and I think it is worse. My husband and I will try 1 year to have a child but after that I will have to take some hornones so it doesn't come back again. Thank you for sharing your story, its very special and encouraging for many women.
I have had years of experiencing endo symptoms. It's recently got so bad that I've been in and out the doctors and hospital with UTI, kidney issues, severe abdominal pain, back problems, and long heavy periods. I saw a doctor yesterday that finally believed me. I am now on the waiting list for surgery and have finally felt like there is hope. Although my new doctor does fear it has been left for too long and I could have long-term damage to my organs due to my severe problems over the last 6 months. I can't believe I'm saying this, but I am really looking forward to my surgery.
Here is what I have been told by medical professionals over the years, and yes, I remember every word:
• I have been told, "It's not possible to bleed for this long."
•"The pill will fix it" after years of trying different pills.
•"The coil will fix it" after having two different one which don't work.
•"It's just IBS, you need to change your diet" even though I have cut out everything that could cause problems and just live on rice and veg.
•"It's normal to experience pain in sex just try different positions." Me and my fiancée have just given up as it's too painful for me.
• "Your UTI is cause by sex" like I said I have given up.
Ladies, don't let these people tell you it's all in your head when you know your body. Don't leave it as long as me who will now potentially suffer with long-term damage. Take Endo seriously and keep fighting for your diagnosis.
One thing I never experienced before I was diagnosed with endometriosis was the painful periods. I hardly ever had any cramps or if I did it was rare. It wasn't until last year when I started to have constant lower abdominal pain that I looked into endometriosis and got a laproscopy that diagnosed it. Unfortunately only a year after surgery I am possibly seeking another surgery.
Oh no I’m so sorry you have to have another surgery. Was your first surgery ablation or excision?
I do tell people LP is not the way out.. have you ever tried herbal medications it worked for me permanently cleared out everything with no side effects whatsoever with the help of DR MABOSA HERBAL on TH-cam
You Ned's an antiflamatory diet. Search for it... it have solution
Thank you for your reply! I've also never had very painful periods and question whether I have endometriosis. I wasn't very hopeful for a diagnosis after my laparoscopic surgery coming this Thursday. Your reply has given me hope of finally having a diagnosis after 10 years of abdominal pain
Oh my goodness, this is soooo me!! I don't have painful or heavy periods. But I suffer from pelvic pain, constipation and a distended stomach full of gas 7-10 Days before my period every month. I saw a doctor who suggested a laparascopy to check for endometriosis and I just dismissed her coz I thought I had to have painful debilitating periods, fibroid etc to have endometriosis. I think I'll book for the procedure now
This video has been very helpful I wish this video was here years ago, I'm 25 years old and I've experienced all these symptoms and when I go to the hospital the doctors just tell me it's normal pains. Thank you so much for this information
I was just diagnosed with moderate endometriosis three weeks ago. I cried watching this video because I downplayed and ignored most of these symptoms.
Painful periods
Horrible sciatica for no reason
Irregular periods on and off birth control
Always experienced painful sex
Developed ulcerative colitis and had painful/excruciating bowel movements regardless of diet.
I just thought it was normal. That was my body. Worse yet, three doctors made me feel like it was in my head and I was not dealing with stress well. Finally I became my own health advocate and found a doctor that was compassionate. We figured out what was happening.
It’s been hard. I mourning it a bit. But thank you so much for this video. It makes me feel like I’m not alone in this. I wish I had found this video early and saved myself a lot of heart ache/confusion.
Huge hugs. I went through a mourning period after my surgery and diagnosis as well. It gets better although I still have my moments of anger and frustration. It’s not right for anyone to have to go through this at all.
@@kathleenhaagenson thank you so so much for your kindness. It’s so good not to feel alone in this. ❤️ sending my love and support.
Thank you for sharing your journey, it will help many. Yeas ur right, the back pain is often not connected with women from endo to fibroids, lower back pain especially can be an issue, our hormone levels during that time, can irritate sciatica and arthritis. Bowel habits too, pain, tingling,constipation don't ignore them
I’ve been in severe pain the last 6-7 months, my doctor prescribed me something for endometriosis today though I haven’t officially been diagnosis. I really pray it helps.
Praying it helps too 🙏🏾
You're so beautiful, love your vibe. Glad I found your video, I've always had painful periods but recently it's a whole new level. Recently, on day 2 of my period I got an insane contraction that would not let go for 30 mins+. It was so bad that I could barely walk and felt like I would pass out. Now my pelvic region feels heavy and like its going to fall out. Thanks for the great video
Thank you for being descriptive with the pain types because it’s helpful!
thank you! so many things i’ve been experiencing but thought it was food allergies or gluten. now im learning that it’s all linked!
Yea it is! Endo is so inflammatory and triggers so many other complications.
I’ve never felt so cal out before! You hit the nail on the head in every aspect! Thank you for this video!
You are welcome!
Have you ever tried out herbal medications it worked for me with no side effects whatsoever with the help of DR MABOSA HERBAL on TH-cam
Thank you so much. It is now going into 3 years of waiting for a laproscopy in the UK. Let's see what happens. Just listening to you and crying also along with remembering my pain, just want to say how much I appreciate all of this and you sharing your experience xxxxxxxxxx
Wow so sorry you’re having to wait so long for your surgery that’s absolute madness. Keeping you in my thoughts and prayers.
Hiii how r u now... How was the surgery do cnfrm me.. I am also suffering the same
Thank you for this video. It's great to see awareness being raised and just listening to someone who can really empathise is somewhat comforting. I've been pursuing a diagnosis for 12 years now and I'm 2 years into a 4 year waiting list for a scan. This is even considering my mum had it. I've had symptoms since I was 13, dismissed them until I was 17 and then allowed doctors to dismiss them for a further 10 years. I do urge anyone experiencing these symptoms to seek an answer immediately. My symptoms have worsened over the years and it's been a long wait for help. Please also do not be disheartened by doctors who are ignorant to your woes. Keep going until you find the right person to listen. Don't be shy on calling out failures too, emphasise how it impacts your life and mood, point out the poor stats for diagnosis and make them think about it more.
I can relate to debilitating period pain and digestive issues.
If you have some very uncommon symptoms that do match up to your cycle you could have a more rare version of endometriosis. As a person that has it in their pelvis, inside my bellybutton (umbilical endometriosis), and my chest (diaphragmatic endometriosis), I've had some uncommon symptoms like cyclical debilitating bellybutton pain that progressed to pain 24/7 to chest pain and right shoulder pain.
I have pain in my pelvis, hernias are around my belly button, I have severe pain between my rib cage, a severe pain is in my right shoulder during the painful cramp. My doctors gave pain killers which dont work.
I think l have it breast tissue also
I personally feel sorry hear about this I was diagnosed with endometriosis in 1998.had several tests and symptoms that were described in this post at this time I was 25y old first encounter with Obgyn told by here that I didn't have that diseases call endometriosis. Was white women disease career working putting off child bearing to long. I had the surgery 1998 after I was told by the same Obgyn I'm sorry you do have Endometriosis you should start I sex at
The 0f 16 if dream life wad to be come a mother. We did have to remove your left tube and ovary. You should be able to have kids but Is gone be hard. Flash back 🔙 I was born in 1966 black female child who in those days would even think about the word sex and especially bringing up that topic in a black family members with 7 siblings and single black woman. Those really time to get out that black belt are get out of my House if you want be a Woman are due female things. Fast forward until 2014 I gave up 👆 on trying
Become a beautiful mother a child. I had hysterectomy 39yrs old all female organs removed accept cervix in was told that I would have deal with pain for rest my life. The symptoms I was explaining to my Obgyn was stage1 but when they went inside it was actually stage 4 so they had to call in Oncologist to remove all scar tissue and adhesions first before the Obgyn and could do his job of removal of the female organs and perform surgery of a hysterectomy
Now 2022 There is Know Cure for the Disease ENDOMETRIOSIS All of the procedure and birth control pills surgery varies of opioid pain meds was different medical treatment. Not A Cure for disease ENDOMETRIOSIS. And know I'm 56yrs old fighting suffering with Society label on opioid pain meds That have been used for getting high on addict addiction abuse children who helped perform overdose and Die. Has made hard for me as ENDOMETRIOSIS suffer with chronic pain to be able to function are perform daily life duties and responsibilities. Having so much personal experience journey struggles lifetime with the know Cure Disease ENDOMETRIOSIS. Fighting to get pain clinic for relief and help too feel somewhat comfortable to enjoy the rest of my life. On Earth.
I have debilitating pain in my stomach
Thank you for posting this video and being a support in this rare chronic disease that it feels like NO on talks about. I have so many of these symptoms I am convinced I have endo. Going to a specialist in New York right now and I can’t wait ❤️
I'll keep you in my thoughts and prayers hope it goes well!
Did you see Dr Andrea Vidali .. I would love to see him for my next surgery.. and I hope you are doing better
I saw Dr. Seckin and Dr. Chu. All went well. They found 26 pieces of Endometriosis in multiple places in my body. We know our bodies best thats for sure! @@jenpierce2385
Yes just like you when I started my menstrual
at the age of 13 and my family use to tell me I was being over dramatic and it was normal. When I got to high school it got event worse with fever, diarrhea, nausea and very bad cramping! But still just thought it was something normal, I never even heard of endometriosis while in high school. Things as gotten so much better now in my 30’s but I still don’t know if my experience had anything to do with endometriosis.
Am finally a mother today , because of fibroids my tubes was block for 6years I and my husband was having issue because of my situation no child when I was Searching online on TH-cam about fibroids I saw a testimony about dr Omo so I write him and place order for his herbal today I have 2weeks old baby now he can help you too Herb's work like magic. Both on Endometriosis x
My Mom had to pick me up from school (started in 6th grade) often because of them. She's come into me whiter than paper, green, unable to walk, etc... the school refused to keep a bottle of ibuprofen on hand.
They wanted her to bring in the Adderall though. :/
Could also be primary dysmenorrhea. Endo tends to get worse and worse.
Thank you so much for this video. Makes me not feel alone. 🥺
I cried at this video. I definitely have the first two symptoms - chronic debilitating painful periods and chronic digestive issues.
I really want to have a diagnosis but I am too scared of having a laparoscopy :( what do I do?
The most important thing you can do right now is find a doctor that specializes in diagnosing and treating endometriosis. I was terrified of having surgery too I’d never had major surgery before however knowing that I was in good hands and my doctor did a fabulous job explaining everything to me made it a little bit better. And not having to live in pain everyday has made it worthwhile. Good luck to you on your journey keeping you in my prayers and sending you love ❤️
Girl, we need to advocate for your own health because no one else will. If we are suffering, we need to get desperate to find a solution. My symptoms are currently affecting my everyday life and I am so over it! I am also super scared for the laparoscopy as I have never had surgery. Just know that the surgery is what it takes and once we have an answer to why we are in so much pain- we will have instant relief (at least I know I will) hang in there sister ❤️
I am going to Dr. Tamer Seckin right now and would recommend making an appointment. He does virtual appointments.
Thank you so much. After this video I decided to get a second opinion. My sister has endometriosis at the worst stage, and mom had ovarian cysts and endometriosis.
I'm so glad you're getting a second opinion and I'm praying that you get answers.
@@Femmepower well I have a dominant ovarian cyst and they did find some endometriosis. I'm meeting with a surgeon on the 24th to discuss my options for a hysterectomy. Bless you!
I have a scan this week. My dr thinks I have pcos but I’m convinced I have endometriosis. I have one symptom of pcos vs 5-6 symptoms of endometriosis. I’m praying I don’t get misdiagnosed!😭
Keeping you in my thoughts and prayers! 💕
unfortunately it can be both. Ive had both for a long time but was mostly attributing my symptoms to the PCOS only. (they are slightly different) but its only recently that the endo has worsened
It's so crazy to me that only in this last year did anyone even consider endometriosis as a possibility for me.
I've been to zillions of doctors. So many specialists hospitals all over the country. Emergency rooms everywhere and this was never brought up until this last year when I finally ended up with a gynecologist that had a side specialty in endometriosis. Just had my laparoscopy and it has completely taken over organs and my abdominal cavity.
I've had horrible violent periods and terrible symptoms that check every box of every video I've watched in the last year. That should have been red flags all along. It started with my period at 9 years old. I am 36 and just now like a week ago. Got an official diagnosis. So insane.
I'm on the birth control shot that stops my period. No one understands that when I had the periods that they hurt so bad for years. I bleed so bad, that I will bleed through a super plus tampon within half an hour. I would get so many clots and every tried to say I was over reacting. Tried to show people the clots through photos and I was told I'm the grossest person for taking photos of it. They have been huge and really painful coming out. No pain meds help, ever. I will get sick all the time when I would bleed. No one wants to find out what's wrong with me. My dad thinks I'm over reacting, my sister who is a nurse claims I'm a liar and don't know anything. The doctor I saw doesn't believe me because I'm adopted and don't know family history. He really asked me how I didn't know family history even though I told him I'm adopted. You don't get that stuff when you are removed from a abusive home at 14 months old. You don't get health history when you are adopted, ever. I have no one to turn to.
I understand what you’ve been through and how frustrating it feels when no one listens and thinks you’re lying or exaggerating. Keep advocating for yourself and researching doctors that specialize in disorders like endometriosis, adenomyosis and fibroids. Even without medical history your personal Menstrual history of symptoms should be enough to prove there’s something going on that needs to be addressed. I hope it gets better for you and you get the answers you need.
Hi, I have my diagnostic laprascopy Monday. I just finished the book "Beating Endo" written by an Endo doctor and pelvic PT. I found it very helpful and am transitioning my diet. Keeping you in my prayers. ❤️
i sure do have a lot of irregular periods a lot lately and I never had this irregular period before Usually I have a regular period and track my period but the pain I'm going through my back and everything. now it makes me want to get diagnosed.
This video was so helpful and spot on with everything I’ve been experiencing. I’m so glad to know that I’m not alone in this battle!
This was so informative I appreciate it so much. I always suspected that I have endo but no doctor I have ever had has really listened to me or done more then send me for blood work. I set an appointment for this week with a new doctor and I intend to advocate for myself going forward- going on 3 weeks of consecutive pain and I’ve finally have had enough of just hoping it goes away.
Thank you… I have been having pain similar to labor pain since I was 14… I’m 42! I’m now having digestive issues and didn’t know why. Thank you!!! I’m in pain all month long wow
Thank you for this video, I have horrible rectal pain even before or after my period :/
rectal pain is the worst!
Omg yes it is
I am so unsure but i have so many of these symptoms just not in the worst version. I feel like I am not in enough pain to have endometriosis...
I have a history of smaller health problems and just feel embarrassed when talking about multiple problems with my doctor. So I often just mention one and leave....
Thank you though for this video❤ - it really helped knowing what other symptoms can be🙈
With Endometriosis the pain varies, some people don't experience pain at all. They only find out when they try to conceive. Don't let embarrassment stop you from getting the help you need.
My symptoms started off small as well and grew into larger ones. Don’t hesitate and talk to your doctor about everything that’s bothering you! There’s no need to be ashamed or embarrassed you’re doing what you need to do to take care of your health and well-being. Praying you get the courage to share this information with your doctor and get answers.
the “i feel like i dont have enough pain” is me exactly!! i feel like i just complain too much so nothing is really wrong with me lmao
@@armanirone3354 my pain can be dulled by a mild painkiller so I've been dismissing all my other symptoms too thinking it's not too bad coz I can function with a painkiller
Thank you for sharing this. I am currently going through this. I have been in pain for a week. It’s debilitating and they’ve always said they believe I have endometriosis. My birth control won’t work for me anymore so they recommended an IUD. The placement of the IUD alone made my cramps worse. I left the office in tears. I asked for stronger pain meds but I was told to keep taking Tylenol and use a warm towel or heating pad. I’m in my 30s but I am so over it. It’s been this way since I was 11.
When you said a pulling or ripping sensation I literally started crying Ive been having horrible pains since the age of 12 and I used to pass out because of it I’m 22 now and was diagnosed when I was 21 who should I go to because my female gyno just tells me it’s my body changing when I told her medications don’t really help
Thank you for this. Literally have every symptom. Made an appointment with doctor. ❤
I hope you get answers and find relief!
i have my first gyno appointment on the 19th!! hopefully i can get my pain figured out!! thank you for this video!! it was well put together and very educational!!
I’ve had awful periods since it started. I occasionally get cramps outside of my period, I missed school/work during my period, i get nausea and diarrhea, i can barely walk while i have cramps, NSAIDS barely work for me anymore, every time my uterus cramps my bowel does as well. I’ve been to the OBGYN and she just adjusts my birth control every time , it never helps. I feel like i’m not being taken seriously since I’m young (I’m 19), and it’s quite frustrating.
I’m so sorry you have to deal with this I completely understand and no birth control is NOT a solution. Hopefully you will find a doctor sooner rather than later that can properly help and treat you. 💕
Have you ever tried herbal medications it worked for me with no side effects whatsoever
Omg my bowel cramps also with my uterus ,crazy ,I have painful pooping from cramps
@@Србомбоница86 Dr Mabosa herbal on TH-cam can help you same way he helped me
I have the worst periods ever but I never tell my Gynecologist. Whenever he asks me I always say I have no pain (from early I have had debilitating periods, nausea, vomiting, extreme weak, ...) but I don't like medicine so I lie about my symptoms and I definitely don't want birth control or anything that changes my hormones cause I'm extremely sensitive to hormonal changes. My mom has never had painful period just heavy
Have you considered looking into a gynecologist that specializes in diagnosing and treating endometriosis? I know they’re hard to find and the majority of gynos see the pill as the cure for everything but finding and working with the right doctor is really helpful at least in my experience. And have you looked into holistic approaches to improving periods with nutrition? This was another game changer for me and reduced my period pain.
@@Femmepower I'm looking into holistic nutrition for body now. Hopefully it'll ease the discomfort a little.
I never knew this till I was diagnosed, but this tends to affect women that haven’t had kids, I always thought the opposite was true. I am the only woman in my family full of women to have been diagnosed with this. I thought other women in my family might have this, as it seems to be genetic, but my mom brought up the point that I am the only woman in my family that never had kids. I wound up in the ER with this last week, passed out cold from the pain. Lately it seems to get worse every month. I am scared to death of next month, as I can’t imagine what could be worse than last month. Get a dr you feel comfortable with, but don’t ignore this. It will get worse. It can affect your fertility. I never wanted to have kids, but if you do, it’s really not something to ignore. It doesn’t go away or get better, like I was hoping it would. Trust me, you don’t want to wind up in the ER for 12 hours, alone, in pain, and getting tested then. If you thought it hurt before, wait till they start doing invasive tests at 3am while your pain is at an all time high. I’ve always avoided DRs, but after that er visit, I am a firm believer in prevention. Tell your DR, grrl! I’m 43 by the way, but been dealing with this for years. In the last couple of years, it’s really gotten bad. Now it’s chronic, I’m either uncomfortable or in pain all the time. I don’t like meds either, but I have to eat Advil all the time now. It’s the only thing that works. I have an appt tomorrow, so I’m hoping for a solution. I’m seriously considering a hysterectomy. Wish me luck tomorrow, and tell your Dr!!!! This is not in your head! Some women have said endo pain rivals the pain of giving birth. I wouldn’t know, as I haven’t had kids, but I broke my arm, and that pain was nothing compared to this. I could take a broken bone any day over endo pain. This affects many aspects of life, and now that I know what I’m dealing with, I can connect the dots, and hopefully come up with a plan. There is no cure for this. Dont take this lightly, it’s no joke. I’m hoping help is out there. I guess I’m about to find out. Wish me luck!
@@crazybird1619 ok I'm really contemplating what you just said if it gets worse overtime. I'll probably have to tell me gynecologist next visit then. Sorry about the pain. Hope you get proper treatment that helps. Good luck
I do have endometriosis and I have terrible IBS like symptoms, I’ve yet to find a doctor who will get to the root cause. Rather they give me a new birth control pill every other couple of weeks, and I have adverse reactions to them every time, I have a long history of adverse reactions to birth control. And don’t get me started on digestive issues, they just keep pushing the IBS and possible UTIs (without proof of presence of UTI) it’s been absolutely ridiculous on this journey 😭😭😭
I completely understand and it's something I'm worry, especially with the journey of dismissive doctors or just want to put a Band-Aid on it to masked those symptoms and not caring enough to look into it more. I believe, I may have combination of PCOS (I been diagnosed with PCOS approximately almost year) and endometriosis. I experience digestive issues, unbearable pains or pains in general for a 1-2 weeks before and during it gets worse, irregular menstrual cycle (bleeding two months for example, skipped x amount of months, bleeding heavy, sometimes light or medium bleeding), I urinate alot even more during period and etc. I want to discuss this with the endocrinologist.
I'm sorry you're having this problem. I had IBS like symptoms as well and my doctors kept pushing me on the pill but it just masked the symptoms and caused other complications. I wish there were more doctors that were endometriosis experts. There's a few out there but they're hard to find and are far away.
Wow so sorry you're going through all this. Hopefully the endocrinologist can give you some answers so you can get some relief.
This happened to me too. Ever since my first period, no validation for these debilitating symptoms. Finally got excision surgery at 32 years old and confirmed endo all over the back of my uterus. I almost couldn't believe it even though I suspected endo my whole life. I was always told no, just go on the pill.
Were you able to have children?
@@sofiablack8408 yes! i had excision surgery and got pregnant the next month!
I think I have it I have many symptoms but always thought it was just normal but now with 2 years of infertility and they can't find what's wrong with me but I think it's endo.
@@SM41790 definitely see an endo specialized gyno if you can! I think that infertility makes them more likely to suspect endo than just pain as sad as that is
You are right! I was misdiagnosed for uears until my belly grew to what seemed a 6month pregnancy. Still a doctor denied anything was wrong even though he stuck his hand in. I insisted with another doctor and was taken into surgery to find a large uterine fibroid & ovarian cyst.
My mom unaware of anything of the sort ignored my pain. Evetually fibroid & ovarian cyst came back along with a buddy endomitriosis. Today managing the symptoms.
Yours was the first helpful piece of content that actually mentioned something related to what I'm trying to find out.
I'm diagnosed already. My endometriosis appeared in the ultrasound before I noticed any symptoms. Or did it?
Cause, see... I had everything, besides the intense cramps. I had cramps in the past , when I was a teenager, but it stopped. Maybe because I started taking counterceptive, I'm not sure cause no one answers my questions about the endo. But I had the pain during sex, I had so intense bleeding that I would have to use the night pads on the day. The urgency to pee, and peeing too frequently. Strongly constipated for days in a roll, having to take laxatives, fiber supplement, etc, to be able to poop. And the pain, in the year that the endometriosis showed in the routine ultrasound, I started having debilitating pain flares all over my body, but specially on my legs, abdomen, backs and neck. But yes, everything hurts. And no one can tell me why. So they referred me to a rheumatologist, who thinks it can be fibromialgia, but today I was in the toilet with my stabbing cramp and my poop pain, and my legs started hurting and my feet hurt just the way it does when I go to the ER in an healthy anxiety attack (yes, I'm bipolar and I got several specific anxiety comorbid) thinking "my legs hurts too much, it's a clot, it's gonna travel to my lungs and I'm gonna die"... And the Doctors, because I'm bipolar and anxious, says, it's psychological... See... I'm examining... There's nothing... Here's a benzo....
Some of them sometimes give me something for the pain. I'm taking notes of which ones work to tell the rheumatologist.
But anyways. Yes, I know I may have both conditions... But I'm sick of being told my pain is from my "mind" just because I have a psychiatric history.
Back to the beginning of this comment... It's been very hard to find anything related to pain that is not in the pelvis, lower back or legs, and is related to endometriosis.
Does anyone know if endometriosis pain can irradiate to other areas of the body?
I get nausea and painful bowel movements ,my cramps are moderately severe and I don't bleed a lot ,but I REALLY feel awful ,I also urinate a lot during period ,and feel so tired
I also urinated a lot on my period too. It was annoying especially at night since I kept waking up to use the bathroom. 😩
Me too!!!
I have been having painful periods from the time i got my period, I have been experiencing most of the symtoms including digestive issues such as bloating which was soo bad that people used to think that i was pregnant, it happened wirh and without my menses, sharp pain in my lower back up to a point when at three different occations i was unable to move when it struck me, pins and needles in my extremities, pain in the soles of my feet, constipation as well as pelvic and inner thigh pain, sometimes i wonder if endo is the culprit, have a sister with fibroids and it is nothing easy for her.
This was really empowering, thank you for this!
You're welcome!
So… I’m convinced something is really wrong. I have back and pelvic pain and pain during intercourse. I went to the doctor and he put the speculum in and I swear it was the worst pain ever… and the pain after was so bad. It’s starting to get a little better but I can’t believe it how much it hurts. It’s never felt like that before ever!!!!! I am glad you said that in your video. The doctors solution was to go on birth control and recommended the iud. I don’t know if I want to do it. I just want a doctor to listen to me.
I also have pain during intercourse to the point where i need few seconds for the burning and "feels tearing" inside of me to subside. I suffer from extreme bloating to the point where I always look like I'm pregnant like my friends are always shocked looking how my belly goes big. Stomach issues before and during period and back pain. Abdominal pain during period to the point where I cant stand too long and needs to slightly bend my back forward. But I didn't go to the doctor yet because I'm afraid.
If you feel your doctor isn't listening to you and you're questioning his reccommendations it doesn't hurt to get a second opinion. And while I'm not a medical professional I do know from personal experience that hormonal birth control can mask symptoms of endometriosis. So, it's better to get an accurate diagnosis and then decide if you want to utilize hormonal birth control to manage your symptoms.
Thank you for this video & information! I've been struggling so badly over here & being ignored by the doctors
Finally someone that gets it. Thank you!
This is great info. I'm going to take some of these to my doctor tomorrow
I found one who listens to me and my pain they help me a lots I found out I had endometriosis in 2009 when I come back home to New Orleans after hurricane Katrina in 2005 I have stage 4
for me the pain was so bad that i was unable to work. I couldn't even put my finger on the pain it was all in one area my lower stomch the problem was I had gained weight close to fifty when it had worsened so everything on and round my belly felt soft to the touch but on my end i could feel the knot near my lower "abs" the pain was so bad i was in and out of the emergency room they even labeled me a drug addict and placed me in a drug rehab which just made the pain worse. at the time i had never even heard of endometriosis its been 7 years since my surgery, my only fare now is the pain in my lower back and the small knot in my belly.
I’m so sorry they didn’t believe your pain and went as far to send you to drug rehab! How upsetting that must have been for you. I’m glad you found some relief post surgery. Currently I’m 2 years post surgery and still experience low back pain on my left side and radiating leg pain. This mostly occurs before and during my period. But still talk to your doctor about it especially if those symptoms began recently.
This was extremely helpful - thank you for your medical advocacy!
Thank you so much for taking the time to make this. After experiencing a miscarriage and having a hard time getting pregnant again during a talk with the dr as to next steps he mentioned endometriosis which I always had an inkling in the back of my mind. I’m just at the beginning of this diagnostic journey and more tests and such are in the future I’m sure but this video was SO informative and I’ve never felt more seen!! Sending all my love to everyone here dealing with endo pain 💗
This is validating. Thank you
When you experienced the nausea was it only during period because I am experiencing it everyday with endometriosis even with no pain.
In the beginning it was only during my period then as my endo progressed it became more often almost everyday.
Same. My nausea started around my period then progressed to every day.
I have all these symptoms and the reason why it's gone so long for me to follow up is because my mum and sister all have the same experiences so we all say "it's normal" finally started to do some investigation now.
Definitely look into it and get to the root cause of why it’s happening.
Thank you so much! I started have random pelvic pain in the second half of the cycle about 3 years ago, have brought it up with 4 different ob/gyns and all of them except one just told me "it's probably due to ovulation". Totally agree that seeing a Dr. is one thing, but something else is to manage to advocate for yourself and have them take you seriously. The last Dr. I found finally suggested it could be endometriosis but that it's very difficult to diagnose. So unresolved yet but your video is inspiring in terms of how to move forward!
I also really appreciate you remind us we shouldn't just accept the pill. I find it wild that it's the "magic solution" that all ob/gyn Drs. preach without consideration for what it does to your body or without giving other alternative options. I don't want to put hormones in my body on a regular basis so no I wont!
Thank you so much! This video was so helpful
This was so thorough and well done. I wish I had this information twenty years ago. Thank you for creating this!
Can endometriosis be something that’s developed, or something you would experience since puberty/ menstruation?
Both. Some people have it and never show significant symptoms like pain periods.
THANK YOU for saying we don’t have to accept birth control. every time i complain about my pain there’ll always be someone to say “if it’s that bad just go on birth control”. like hello?? the side effects are crazy
Thank you. This video was very helpful, take care!
I'm glad you found it helpful!
I will add that for sciatic endometriosis which can cause the hip or leg pain and numbness and tingling should not be ignored. There are case reports where it has led to paralysis. Personally i use OCP to control the symptoms such as paralysis, numbness and tingling. The pain has reduced but is still there but i apply ice compresses to my waist to also help with the symptoms. Surgery around the nerve to remove the endometriosis is available, but it is expensive and there are only a few experts on it and surgery around nerves comes with risks too.
Hang in there. Try to deal with the pain and try to keep walking to make use of your muscles.
Kat, thank you so much for this video and sharing your own personal experiences with us
I have been going to the GP for 5 years with symptoms: very painful and heavy periods that last 7 days, back and pelvic pain, ovulation pain, thigh pain during menstruation, constipation or diarrhea, I often have anemia, spotting before menstruation or 4 days before, dizziness and fainting.
Thanks
It's been beyond frustrating. The last two years I've been to 2 different primary drs, and neither could give me a reason behind my pain. I was told to go see a GI dr you might need a colonoscopy. Went to a GI dr only to be told you probably have ibs, so do this diet and just watch what what you eat. Of course, I've also been to my gyn, and she told me it's completely normal having pelvic pain, but I guess she was nice enough to send me for a vaginal ultrasound. That came back clear, so back to square one for advocating for myself. Was studying and researching pcos and now I truly think this is what I've been struggling with all along. I cannot imagine the women who didn't find out until many years later. This pain is debilitating and miserable!
My long distance girlfriend just fell very sick on her period (second time in february this year) very suddenly out of nowhere, she went to the hospital and turns out after the CT scan she had inflamed ovarys, bowel, uterus and appendix with symptoms suggesting appendicitis. To add ontop of that, during the laproscopic surgery for her appendix they found a cyst on her right ovary (hopefully not endometrioma), confirmed appendicitis so her appendix was cut out, ahernia and also was diagonosed with endo... this has been very painful for me and especially her that I cant be there with her on such short notice, I also didnt even know what endo was until now, and im trying to educate myself as much as possible to try and understand what she will have to go through on a monthly basis for the rest of her life until menopause, hopefully the pain wont be as bad as the most recent of her period because of all the other problems she had at the same time, and hopefully it wont cause infertility problems. She had a family history of endo with her grandmother, mother, sister and her so it was expected. She had her surgery yesterday night and is recovering safely at home, but still has really bad pain, not really sure if the surgeons did anything with the lining outside of the uterus (that is still being confirmed). Me and her are quite shaken from the sudden amount of problems that she developed OVERNIGHT might I add, and me not being able to be there for her hurt me mentally. Shes a very strong girl for being able to tough it out and i know I wouldve just died on the spot if I had all that.
Luckily we live in Australia where free health care exists, so it wont be taking too much a toll on money as other contries like America would.
Might I ask around what age she is
So sorry she had to go through that my thoughts and prayers are with her!
wow this is exactly my experience!!! every single point i feel so seen thank you so much for this video!!
I relate to every symptom as well, except vomiting, i just dont vomit in general. But ive seen several gynecologists and they've been extremely unhelpful...mocking me and telling me to just take painkillers. Not even a combination of strong painkillers works anymore, and my experience with doctors so far has been so horrendous im so scared of going again....
Thank you for this ❤ I'm dealing with spotting for a week before my period I'm not sure if this is a symptom. I'm going to get checked out.
Yes go get it checked out! Spotting is a symptom of endometriosis but it's also a symptom of so many other things so it's better to be safe and find out what's going on. Good luck and I hope all is well!
Mine was chronic before, as ir is again. no matter my cycle or lifestyle. My sisters was worse during her cycle before both our surgeries
I've been to several doctors because my abdominal pain has gotten so bad it's debilitating. They told me it's just IBS and I need to lower my stress levels and do yoga and eat more fiber. But I'm suspecting it's actually endometriosis because I have all these same symptoms you described with the long heavy and very painful periods in addition to the digestive issues that go with it. It's not just a digestive problem. But since they can't see anything on the ultrasound they keep saying it's just IBS. 😔
It’s common for endometriosis to be misdiagnosed as IBS. And unfortunately, endometriosis can't be seen or diagnosed via ultrasound. If possible, try to find a doctor that specializes in endometriosis. They are hard to come by and cost a pretty penny but working with someone that understands how this horrible disease affects the body is helpful. I'm hoping you're able to find a good doctor that can help you identify what's causing your symptoms and get you treatment.
A colonoscopy is a bit of an easier procedure than the exploratory laparoscopy. I thought I had IBS but my colonoscopy was completely clear which ruled out digestive issues. Xxx
Wish I had information like this as a little girl. Thank you.
Thank you! Amazing Video & so helpful getting the help I deserve
You’re welcome gals you found it helpful!