I have a similar story to yours..I actually had to have emergency surgery to remove a massive cyst from my endo. I didn’t even know I had it. When I had my follow up appt they told me I should try to have a baby now if I want kids. I was only 20 at that time. It took us 2 years & we were actually told we would need IVF because the endo blocked my tubes but one month after we were told that I got pregnant. I’m now 34 weeks with my baby boy 💙
Almost 40, I have endometriosis, stage 4...in my uterus, ovaries, bladder, intestines...(they cut about 50 cm, ileostomy for 18 months 🤬) That’s a huge mess, a f****** disease. I just had my 34th surgery early november. It’s very difficult, a real nightmare... My MRI is the 27th of november to control its growth. I really wanted to thank you for talking about it on your channel, it's a "taboo disease" that must be managed to emerge from the shadows. NO this is NOT NORMAL to have pain during your periods. The struggle is real. I’m not sure if you’re going to read my message (excuse my english, I’m french 😂)... By the way, I really love OTT...! Daisy is such a wonderful little girl, damn she’s sooooooo cute and lovely..! I send you a lot of courage... Endogirls are Warriors 🎗(..the yellow ribbon is our sign of recognition around the world...)
@@holls.nina2002 YES - right you are !! 25 years of endometriosis, in very good shape, life is good even though I couldn't have kids. Endo warriors are the strongest.
Bloody hell, you’ve really like really been through it. I’m so sorry you’ve suffered so much - this disease is such an injustice to women. The lack of understanding amongst the medical professionals and GP’s who are reluctant to acknowledge the severity of women’s suffering is just so unfair. I’ve recently seen the number of women suffering Endometriosis, is equivalent to asthma sufferers, yet we’re still in the dark ages with periods and talking about what’s normal, and what isn’t. We shouldn’t be brushed under the rug anymore! I hope you find some relief soon sister💪🏼🎗
I’m 22. And I’ve had endo and ovarian cysts since I was 13. I’ve had two surgeries for it. At 16, They wanted to take my ovaries. But I said no. I was always told it would be hard for me conceive, or I just wouldn’t be able to. And I’m now almost 9 weeks pregnant!
Hi Ebony! I love how you share your story with us. I also have endometriosis and have had it since I was 16, but it took 3 years and lots of doctors telling me it was in my head before I found a doctor that diagnosed me. I was 19 then, got my operation at 20 because I couldn’t have a normal life anymore I could not get out of bed, not go to school, I failed everything. I’m 21 now and since that operation last year I’ve accomplished so much, graduated from school, started uni, I live with my fiancé. He also has type 1 diabetes like David, so when I watch your videos it reminds me of us and also gives me hope to have babies ! Doctors told me to start trying like next year if possible but I’m still 21 just started uni don’t know if I’m ready, but also don’t want to miss the chance of becoming a mother, which I’ve always wanted to be. Anyways thank you for sharing this update with us and being so open about it ! Love from France Xx
@@verucasalt5033 Il semble que l'age recommandé pour tomber enceinte dépende de l'endroit où se trouve l'endo parce que moi mon médecin ne me presse pas et j'ai bien dépassé la vingtaine... es tu sous traitement depuis ton opération ?
Hanna Louise &Tea, je ne suis plus aucun traitement. L’expérience « ménopause artificielle » a été un véritable cauchemar qui n’a servi à rien si ce n’est permettre à la maladie de gagner du terrain. Après je ne pense pas qu’il y ait un âge pré-requis pour essayer d’avoir un enfant. La maladie est extrêmement complexe, et chaque cas d’endométriose est « unique ».... Je te souhaite de tomber enceinte, naturellement (ou avec un coup de pouce..) et n’oublions jamais que nous sommes des guerrières...!!! 🎗🎗🎗
Hanna Louise &Tea je pense que ça dépend aussi de l’avancement de la maladie, moi je sais que mon médecin m’a dit que c’était profond et très étendu et que du coup il fallait pas tarder
So much love you Ebony ❤️ we have a street here in South Africa called Ebony as every time we drive past it I think of you ! So special you are your little tiny tribe !! Sending lots of love
I have so much respect for you as you are comfortable to talk about it. I hated it when the doctors turned round and said "everything's fine periods are like that for everyone" when I was young I listened and just assumed I was being a wimp only to find out there is something wrong. Have been very curious about how you felt and I'm so glad that you uploaded this. When you first announced it was when I found out too glad I have you there along the way xx
I am currently lying in bed recovering from an exploratory surgery to confirm that I do in fact have endometriosis. It has taken too many years to finally get to the bottom of my pain and heaviness but I feel so relieved that I have an answer! Thank you for sharing your story as it gives me hope for the future. Xx
Hi ebony, I have endometriosis have been diagnosed for 2 years too. Suffering for a long time with the worst pain. We started trying for a baby 6 years ago when we got married without any luck. However we have just done our 2nd round of ivf and we are pregnant! Yay. I just wanted to say I had an op to remove my endo 2 years ago but because we still couldn't get pregnant was referred for ivf. I'm hoping I have no endo pain too during my pregnancy it would be a blessing. I personally wouldn't do the op again but I had different circumstances, but you had yours and managed to conceive Daisy so I would say do it again before you try for your second. I hope all works out for you. I feel your pain! Xx
I was diagnosed with endometriosis in July and had my surgery, this was after 2 years of everyone telling me it was just period pain. I found your first video before I was diagnosed and knew something wasn’t right. I love how you can talk so openly about it and have managed to have Daisy, it makes me feel more positive about the future! Wishing you all the best ❤️
Thanks for speaking out! I have endo too. Took them 12 years to diagnose and operate. What others are saying on here resonates where you get told it’s in your head. I just had my first baby, and like you, feel completely blessed. People think we got pregnant fast because we conceived a month after our wedding but what they don’t realise was that it was a long, hard journey to get to the point where I was fertile that began long before our wedding day. I haven’t had a second operation yet - we also want to wait until we’re ready for baby number two but you’re a couple of steps ahead. So I will wait, watch and follow your story. All the best ❤️
I've been struggling with rlly terrible period pain for a while now and I went to the highest endo specialist and had the operation a few weeks ago. I was expecting the worse but luckily they didnt find any endo, they only found a massive fibroid which they removed. My doctor said he was shocked bc my symptoms are exactly like endo symptoms but I guess u just never know until physically going in there and looking. I'm happy that I dont have endo but I'm just terrified that after this I'll still feel the same pain and I wouldnt know what to do at that point. I hope I'll feel better from now on. If anyone else has been through a similar experience please let me know. Wishing you all the best ebony! I was so happy when u were pregnant bc I knew u were worried about that. and shes such a beautiful and sweet girl! Thanks for the update💖
I'm not sure how big your fibroid was but I got diagnosed with Fibroids and Cysts and a 3cm nodule in my uterus (my OBGYN was really surprised at how many fibroids she had to remove, non were cancerous luckily). I normally have always had a really heavy period with intense cramping but I told myself to be a woman and deal with it. All these other girls have to deal with it too, if you (anyone) have the slightest feeling it might not be normal GO GET CHECKED. It is worth it. I wish I had been checked 6 years earlier... My period got worse, going from 6/7 days to lasting 11 days and having to change my super + tampons every hour instead of every 4hrs, I was also in so much pain I couldn't work. After less than a week my OBGYN was sure I needed surgery so I had a Hysteroscopy D and C using the Myosure Procedure because I wanted to have kids. At this pt. I had been trying for 6 yrs and was 37. After surgery the relief was instant and I became pregnant 2 months after my surgery, currently I'm 15wks and 5 days pregnant :)
I really needed this video. Im currently being diagnosed with Endometriosis. I think it's something that needs more awareness and people need to speak more about. Thank you for talking about your experience :) x
Im 21 and have endometriosis, I found out thanks to you Ebony - I had no idea endo even existed before your posts and video so I am so thankful. You helped me realise my symptoms weren't normal and convinced me to get to a doctor (I literally experience everything the same as you ). Its taken 2 years of hundreds of doctors telling me to "man up" and that I'm "just a woman - its life" ! But I knew something was wrong. Keep spreading the word, and your story. You're helping more people than you realise. Thank you x
I was literally diagnosed with Endo a couple of days ago after being passed from doctor to doctor for years. I've just started university so its a really scary time. I hope that I can manage it as well as you have and that everything turns out ok! Thank you for the video Ebony xx
I remember I suspected my endo and TH-camd it to see if anyone had the same. At the time I found you and have been watching your videos ever since. I showed my then fiancé now husband and he watches your videos with me. I have endo & I plucked up the courage to make a video about it. During my surgery they discovered that I was born with only one Fallopian on the left side which is blocked and my left ovary isn’t functioning well. The pain is awful still and I had surgery in Late July this year. It affects my mental health a lot. I decided to make it more known and talk about my story to help other young girls and women. Thank you for posting the first one. It brought light to the condition itself and made me push to get help. 💛
I recently had my 2 surgery for endometriosis on 2/12/20. This time I went to an Endo Specialist who performed the surgery using Excision. He removed a bunch of endo along with blisters on my bowel and bladder. I’m awaiting my post op appointment to find out more details. At my initial appointment before surgery, I had brought pictures of my first surgery back in 6/30/2017. That surgery was performed by a different doctor (who was not a specialist) and was adamant that I had no sign of endometriosis. She told me the pain was in my head. Dr. Yeung, my current endo specialist, saw stage 1 endo from looking at those surgical photos from 3 years ago. I decided to seek help after my pain became increasingly worse and started to effect my bowel, bladder and GI issues in general. I wish you all of the luck through your endo journey. I highly recommend joining Nancy’s Nook on Facebook and also reading The Doctor Will See You Now by Tamer Seckin.
You're not a wuss, thank you for educating us. I've never heard of it and as a guy I thought it was really informative and helpful to understand. David is the kindest guy ever and I love that you're both open to the idea of adoption. Daisy is sooo cute and getting so big!
thankyou for putting this video up on your channel, i’m 17 and fought with my doctors to do surgery to look for it for 2 1/2 years and am finally having surgery on the 24th of April. this is the only thing i’ve been able to compare to my pain.
Hi Ebony! First of all, I want to say that this video is so important. You described the feelings and pains of living with endometriosis perfectly! I was dealing with the same symptoms a few years ago when I came across your videos. That is this the moment I knew that I was not alone and this is a real and common thing. After having my operation, they found that I, luckily, did not have any endometriosis, by a deep retraction pocket on my ovary which is usually linked with endo. It is called Allen Masters Syndrome and has the same symptoms as endo! I am from Prince Edward Island, Canada and I feel as though I was led by God to a surgeon in the United States. His name is Dr. Patrick Yeung and he operates specifically on endo out of St. Louis Missouri. He is practicing new techniques resulting in patients only needing a single operation and it is not growing back!! I had constant symptoms for 2.5 years and I am now approaching 1 year of being completely symptom free and I feel amazing!! Please look him up! Sending lots of love your way :)
glad you share your story and updates!! i’m almost 17 and i’ve been struggling with endometriosis since 12/13. for the longest time i felt soo alone. glad i’m not and people like you openly talk about it.
Hey Ebony! I'm 21 and have pretty bad endometriosis, adenomyosis, and pelvic congestion syndrome. I had my first operation this year in march and my second in September. The first operation was ablation and the second was excision. Sadly, I don't feel any better. The endo is deep infiltrating and has basically destroyed my bladder to the point where it is inoperable. I decided to have the second surgery when I was in daily pain. I was taking large amounts of ibuprofen daily and could barely manage day to day activities. Trust me you're not making up this pain. Multiple doctors told me, that the pain was all in my head and that endo doesn't grow back that quickly. they were so wrong! There is a reason why you're in pain! Have you read the book the doctor will see you now by Tamer Seckin? It's really worth a read! I wish you only the best my fellow endo sister
Hi Ebony, i am 23 and I got diagnosed with stage 4 Endometriosis 4 years ago. I have had 3 excision surgeries and in my most recent in May my right ovary and fallopian tube were damaged by endo so had to be removed. It had spread like wildfire since my previous op 9 months prior. I'm now back to square one. Periods are heavier than ever and still in agony day in day out. It's so deflating to keep going through treatments and surgeries for it to just come back again. My surgeon has tried all that he physically can to relieve me of my symptoms but it just keeps coming back. I really hope the next surgery goes well for you. I totally get what you mean by doubting yourself but don't. You know your body and know what endo feels like. It would be nice to see more videos like this as endo isn't really spoken about much and there isn't much awareness out there. Chin up hunni, we are all here for eachother 💛
Such an informative video Ebony, well done for sharing. The internet should be used for this kind of thing, rather than spreading hate and shame. I have a chronic illness that few understand and have been asked whether the pain could be in my head and not as bad as I’m making out, I sometimes struggle with that and doubt myself. Growing up, if I said to my mam I was unwell or not well enough to attend school. She would constantly question me, saying no one knows another persons pain. I’m a parent myself, I know when my children are unwell. Sending gentle hugs Ebony, you know when you can’t take it anymore. You will know when the time comes to face surgery again. Xx
After 9 years of painful and heavy periods I was diagnosed with endo and polycystic ovaries last year after bleeding non stop for 6 months! (however my cysts are on the inside of my ovaries meaning they can’t take them away. I’m only 20 so it’s too risky) all I can say to anyone is not to wait to see a doctor about it! I had my operation in October and was fine for 3 months. I also had the coil fitted while under to try and stop anymore Bleeding. Then the pain came back and now as it’s so bad I’ve had to have hormone shots to try to stop it all. These shots will put me through early menopause for 6 months. So I have weight gain and night sweats to look forward to😂 I love seeing these videos because I wish there was more when I first started going through it. My chances of having a baby is significantly low than most girls ... but I’m not giving up hope! Sending my love to you and everyone else going through this! We can do this!💕💕
Hi Lovely, please do not let them burn your endo. Excision is the best way to remove the growths and will hopefully minimise the amount of surgeries you'll need to help. I have endo myself and that is the advice I have received from professionals and fellow girls with endo. Thank you for speaking about your experience and raising awareness. You are incredibly strong 😙
Ebony you are so amazing to speak so openly about your Endo journey. Endo sucks for sure, I was diagnosed with Endo when I was 21yrs old, like you I just thought I had just very severe painful periods compared to everyone else, but when I got diagnosed (I had to pay privately as at the time none of my doctors believed there was anything wrong), I paid nearly £1,400 for my surgery back in 2003 & although I was unhappy paying this money as I should have got this surgery on the nhs, it was the best money I’ve spent as I have my diagnosis. I’m now under Poole Hospital under Mr Tyrone Carpenter (you may know him as I know you moved to Bournemouth recently), I too love in Bournemouth lol 😆 and have been told they won’t do any further surgeries for me as it causes further complications like scar tissue, adhesions on bowel that cause further issues etc. Life with Endo is excruciating and I am so happy you have spoken to us so openly and honest about your own personal experience. I’m 37yrs old, I so want a baby and now you’ve said that labour pain was like Endo pain and you thought it was Endo pain you were experiencing and not contractions, this made me shocked as it just shows how bloody excruciating life with Endometriosis is. We are all Endo warriors and together we can fight this awful disease. You are awesome Ebony 💖
I'm 26 with endometriosis. Just had my 4th surgery for it following the birth of my son (born early Jan) who took us over 4 years to conceive. I totally understand what you go through. It's horrific. I'm glad you're using your platform to spread awareness, keep up the positive influence!!
A bit more details. I was diagnosed at 19 after years of issues. Multiple operations with the 3rd one finding my left hand side covered in adhesions and endo. After that surgery I did some fertility treatment and about 8 months later we finally got pregnant with our boy. That's how I found you, I wanted mummy vloggers with kids the same age. I had a horrendous birth especially with my pain and no pain relief. 6 months post partum my cycle came back properly (I breastfed until 8 months) and every second month I was in agony all month. Went back to the specialist and ended up booking in my next surgery which happened almost 2 weeks ago. They found my ovary and tube on that side stuck down really badly but managed to free it and it looks healthy thank goodness. I got to it at a good time. But that's why I got so much pain because everytime my ovary tried to have it's month ovulating it was struggling. We're officially ttc #2 now and will start meds in January, although I'm really hoping it will happen naturally but who knows! My hubby and I have been together 10 years (4 married) and own our house etc so for us it was a no brainer to try and have kids whilst I'm as healthy as possible then we'll try and suppress my symptoms somehow.
I just wanted to tell you my endo story. I suddenly got very sick at 15 and surgery was advised, so we went ahead with it. The surgeon told us afterwards that he'd dealt with the problem he was looking for and discovered endo. He didn't know what would be the best way to remove it, so he left it to be professionally done. Time jump 5 years. I found an amazing gyno and he said he was going to go in and remove it. He went in and physically cut out the endo instead of lazering it (his preference) and got all of it out. I went and saw him a month or two ago and he told me that he considers me stable! (Huge news because I have other conditions) I still don't know if any future fertility will be effected, but he doesn't believe it will be. I had horrendous pain from the very first one, now by choice I don't even bleed anymore (controlled by medication). Everyone with endo has such incredible, good or bad, stories and it's a wonderful feeling to be able to tell other sufferers that you actually can become stable!
I'm 21, 22 in March, and I just got "official" word that endometriosis was the cause of all my pain legit a week ago, so no surgeries yet. I've had a heavy period since I started at age eleven. At first it was super easy, but the older I got the worse it got. I've known in the back of my mind that it was endo for at least a year or two because of the intense pains I would have during my period AND during ovulation, but the last few months it has exceeded to the point of having those intense period pains randomly during my cycle as well as when it can be expected. Also, I've recently been having pains when stretching or twisting oddly and I honestly didn't even think about it being from endo until you mentioned it. I appreciate you being so open about all this so much because it has helped me so much!
I had my second surgery last January '17 and was similarly told to try for a baby asap as they found a lot of growth on my bowels etc. Was lucky enough to get pregnant twice in 6 months (1 miscarriage and my now 8 month old daughter) New it was time for second surgery as I was back to being completely out of action for the first half of each period and it was affecting work etc. Starting to get bad again now so keeping an eye on it! It sucks and sending love to you and everyone else who deals with this crap every month 💕
Kinda familiar topic. Endometriosis. My sister has them and she was also told that having kids could be difficult. BUT now she's one awesome 15yr old son. So, bless him and bless Daisy. And of course bless their mums ;)
Your are awesome to share the different paths of your life. I wish the best for you and family. Positive attitude really helps so much, so keep going. And remember, everyone needs that time when you can't hold anymore and have a really good cry and let it out and gone. Hugs
Dear Ebony, thank you so much for sharing and talking about this. It is so important. I have endo as well. Had severe cramps last year during menstruation and doctors thought it was my appendix, so they took it out and I asked them to look for endometriosis while they were at it. They discovered endo scarring directly under my appendix, and removed my appendix even though results later showed there was nothing wrong with it. Last Monday I had my laparoscopic surgery. They removed scarring and cysts on both of my ovaries. I’m healing well and my endo pain is already so much better. Also had a IUD put in, will stop the pill soon. I’m not interested in children right now, or ever, and feel that stopping my cycle through using hormones is my best choice, had to try five different pills until I found the correct one. Endo and opera singing is not a great combination, but Im hoping that I now have a long(er) term solution that won’t get in the way of my career, education and practicing. Sending lots of strength and light your way, you are not alone. All my best from Reykjavík 😘
I love your so open about it because I will be getting tested for endometriosis and I ain’t going to lie i am terrified. I am going to university next year so it is a scary time as it is. I have such a similar story I’ve been suffering with passing out and being sick for years about my periods. Your amazing and thank you Ebony! Ps. Daisy is adorable xxx
It's scary before you know for sure but it'll be worth it afterwards! I hope you dont have it but if you do, then you will find ways to cope and make it better:) good luck at uni :)
So good of you to share this. I have friends who suffer with this and my cousin had very bad endometriosis when she was younger too but went on to have beautiful twin boys. Really hope this helps others and that you get some answers to your questions too. Big hugs 🤗 xxx
Hey doll, I feel your pain! Quite literally. Just got diagnosed with endo after putting up with this for over 12y. Crazy pain from when my period is done till the day after I ovutale, the sweats, the stabbing... On my scan they saw I have endometriomas in both ovaries which is quite scary as we just got married and were planning on Ttc and been told I would need surgery and maybe some fertility help. For years I though I was just crazy and making the pain and tiredness up, but finally got my answers! Waiting for a meeting to discuss my surgery and hoping it’ll be all ok in the end. Seeing your video after the surgery and then the baby announcement made me cry! So happy you were able to have Daisy and gave me lots of hope 🙂 get that checked soon as that stabbing pain is something very familiar and book the surgery before the scar tissue and adhesions get to much and may block the tubes making bb2 very difficult in the future... Good luck And keep us updated!!!! Love your vlogs and your super cute family 💞💞
I just tried to write this but it was a bunch of blubber😂 I started when I was 14 and from day one I was heavy and in a lotttt of pain every single time. My doctor suspected endo but we never found out, but my mum had it and I was told to not be surprised if I ended up with it in the future. My sister is going through the same pain I went through, except she is getting cramps that are really horrid but she isn’t actually bleeding loads which is a huge worry, but your videos are so so educational and I really appreciate you talking about it to understand what it is and how it works, thank you ❤️
The video that made me aware of endometriosis ! Went to the doc about it, took me 2 years after the appointment with the doc to have my surgery but found out 2 weeks ago that I do have endometriosis. Thank u for uploading this or I’d probably still be trying to find out what tf was up with me 🥲
Hi :) I have endo got diagnosed and had surgery in 2015, have been trying for a baby for 17 months but no such luck instead I’ve been hot with pain that is indescribable instead worsening by the month. I am finally due to have my 2nd surgery on 20th December to cut it all out and free up my organs and possibly have part of my bowel removed ( not exaggerating when I say I’m 10000% shitting it) it may mean I’m in hospital on Christmas Day and over the Christmas period due to the large extend of my surgery but right now I would go through hell and back to give me even the smallest chance of getting pregnant and having some relief from this pain. This condition is truley life changing and really tests you as a person but also proves how amazingly strong we all are. Good luck with your second surgery fingers toes and everything else crossable it gets rid of that pain for you. Xxx
Hi Ebony. Mine has always started outside of my period too. I never used an app so not sure if it has anything to do with ovulation in my case, but I would be fine the week after my period, then pain would begin in the second week of my cycle and increase every week until my period finally came which is when I'd have the full brunt of it. Unfortunately, before I tried to stop my periods all together, I was really irregular so this pain could sometimes be continuous for over a month which is why my doctor suggested that I take the mini pill which usually stops your periods. For three months, I had no periods or pain at all (life changing!) but the periods started up again and lasted a few weeks at a time but were not at all heavy. This went on from May until October when they finally ended, and now I have a few bits of blood about once a week but not enough to notice. The pain is also really infrequent and nothing at all like it was before I was on the pill. It's uncomfortable enough to notice but I grit my teeth and bear with it, and it's fine to deal with. Life has really changed. That being said, it was never all roses. Before finding this pill, a lot of other pills I took made my symptoms worse. It took five months and six pills for my doctors to figure out that I have a sensitivity to oestrogen (very common with PCSO and endo) that was making me feel like (sorry if this is TMI) my womb was falling out of me. Thankfully, my progesterone-only pill has taken that particular pain away completely! Thank you for talking about this. It can be such a taboo subject, but the numbers don't lie. So many of us have it and it's so important to have that support network around each other. I'm terrified to stop taking this pill when I'm ready to start trying to get pregnant, so it's stories like this and knowing that I'm not alone that help me through (so cheesy I know, sorry!). Best of luck with it all xxx
Abi Davis-Fletcher what’s the pill that your on because I’m on the 28 day pill and I have nothing but bother with my periods. I bleed so irregularly and for weeks at a time and I have endometriosis, they found traces when I was 16 then diagnosed me with ibs 18 months later, although I’m not sure if it is ibs or my endometriosis because i know they misdiagnose a lot of people. The pains unbearable when it does flare up x
@@ClaireLouiseHedley So sorry I've only just see this! I'm on Desogestrel. It's progesterone only so has helped me so much since my body just seems to go to extreme lengths to reject oestrogen!! I hope you find something that works for you. Wishing you the best of luck xxx
Hi Ebony, thank you so much for sharing your story. I got diagnosed when I was 18 (I’m now 23) and it’s the worst. It takes over your life completely and I’m so sorry to hear you’ve been so unwell. I hope you find a treatment that works for you. I’m on a medical menopause treatment which isn’t without its side effects but it is the only thing that has worked for me. It also might be helpful to see a pain specialist? They can refer you for physiotherapy, cbt, acupuncture and it’s all around mindfulness. I had my second surgery 2 years after the first and I had to have it because the pain got so unbearable I couldn’t work or do anything anymore.
I have endo too I’ve had two laps the first they took out my appendix, and said I didn’t have endo (now I know I did I’ve had issues for years) then I was diagnosed the second time in August 2017. I think I’m ready for my next op but my surgeon doesn’t think so xxx
I have just turned 16 and have been suffering with endometriosis since I was 7 nearly 8 I had my first surgery 6 weeks ago! I absolutely love your channel your such an inspiration 💛
I'm so glad you got a diagnosis and managed to have Daisy. So sorry you have to suffer every month doesn't sound like fun at all and I'm hoping your video helps more women realise that extreme pain during periods is not normal x
Thank you for bringing awareness. I have suffered terribly too. I am desperate for another child, but Im having to have ops every 3 monthsand now I've been diagnosed with uterine cancer. I would recommend op asap to keep on top of it as I have been made to and yet it still turned into cancer. Good luck hun xxx
Firstly sending all the hugs! Second I know having surgery is a big deal but damn ebony you dont have to just suffer and be in crazy amounts of pain!?!?! Like that's hella not something your required to just have to do! Sending all the love 💕💕💕💕💕💕💕
I had my second op for endometriosis 2 years after my first. The second operation showed minimal endometriosis regrowth (I was in a medical menopause for one of those years to help stop regrowth) but my bowel had stuck itself to my pelvic wall and my right fallopian tube was covered in scar tissue. I also had a tubal patency test at the same time and found out that unfortunately that right tube is useless. I definitely felt like I was making my pain up before both my ops too. I’m back in medical menopause again now and I’ve been told when I’m ready I’ll need IVF. Horrible x
Thank you so much for making this video! Any helpful tips on doctor visits? I've been going to my doctors for years about my periods, the excruciating pains which made me have days off school, and I've been sick and often pass out or feel extremely faint with them. However, every time I go I get told periods are painful and its normal...but it doesn't feel normal at all! Really struggling to get my voice heard but everything you've said is true for me too. Hoping soon something can change! Good luck with everything xx
Amy Wallace my advice is to just keep pushing, keep mentioning endo, i fought with my doctors for 2 1/2 years and am finally having surgery in april, because my mum and i continued to push for it and insist that my gynaecologist check for it
I suffered from the age of 12. Was diagnosed at age 28. For 16 years I was told to toughen up. Endometriosis is a nightmare. I’m yet to have surgery (had emergency cyst removal which resulted in the diagnosis)
Love that you’re so open. I also have really painful periods to the point where I’m in a fetal position crying. The first 3 days are the worst. I wonder if I have endo. I would have to speak with my doctor
Hi, I'm really pleased I've seen this video. I have endo and have had it for over ten year's. I'm 14 weeks pregnant and ready for this journey. So pleased that you said about child birth being like endo because that fills me with hope. If I can handle endo each month then giving birth hopefully with be ok Ish! 🤞🏾 Here's hoping! 😂 X
Thanks for sharing your story the more than share the better the understanding . I’ve had 20 surgeries for endo , couldn’t have any children and have had to have a full hysterectomy. Endo is pure hell and it’s normal to think it’s all in your head but it’s not . The only thing I would say is don’t let it get to bad before the second surgery because you could end up with severe complications . Have you tried the monthly injections that put you into fake menopause that may give your body a break and calm things down especially if your having ovulation pain . Have you been scanned because also maybe you have a cyst on your ovary that’s causing you extra pain . I’m not a dr or anything lol just going off my personal experience but if it’s pain that’s making you faint etc then I personally wouldn’t leave that xxx
I basically have all the symptoms that you have. Went to the doctors, and she said "if we had to operate everyone with bad period pains, we wouldn't be doing anything else", and said that period just are painful. She did a gyno-examination and said everything looked fine. And the she scheduled an appointment for monday to talk about getting on the pill. I usually get a feeling if something doesn't feel right, about a certain situation and I have that feeling now.. And it usually always turns out that I'm right. I think I'll ask for her to referrer me to a specialist. Your video's has helped me out so much. So thank you so much for making an update
Ugh this makes me so upset. Doctors talking to women like we’re a burden!😒 lack of empathy and understanding amongst doctors is crippling for women and doesn’t help any women trying to find relief and treatment. I understand it’s hard to differentiate between someone who is having a bad period, vs someone with endo. However, if you’re suffering every month with long heavy periods, painful sex, pain when peeing and painful poops, extreme fatigue etc.. this is evidently more than a bad period. Please push a laparoscopic exploration, and seek a second opinion- you shouldn’t be suffering this way❤️
I’m so sorry that she made you feel like you were being difficult. It so so sad that the people who are meant to be able to help so often make us feel like we’re being over dramatic! Keep pushing! I also had that gut feeling that something wasn’t right. You know your body and you know when something is up! Xxx
So rubbish isn’t it!! I have a question, I’ve never hear anyone say about tiredness with endo, is that a symptom?? I’ve literally been going in for the past few months saying I’m exhausted beyond belief but they’ve never linked the two. If it’s a symptom then that make so much sense haha!
Our Tiny Tribe I have heard alot of women talking about tiredness being a symptom. Or that they struggle with being tired as one of their everyday struggles. I’m also constantly tired. So I Think it is linked to endo
I’m having my second laparoscopy a week today! I’m having to have it at an endometriosis specialist centre in hull because I was admitted back into hospital 2 months after my first op but I would definitely recommend looking for an Endo specialist centre near you when you’re ready for your second op. They’re so understanding, take everything into consideration and I just feel so much safer and secure going into this second operation than I did going in for my first at my local hospital if you get what I mean? Hoping you get some resolutions soon 💖
I discovered your channel after your first video about endometriosis and am so glad you are continuing to talk about it! It’s so common and it’s so crazy how women and people with vaginas have such difficulty being diagnosed due to the lack of research about endometriosis.
Hello! Thank you for this video. I have had endometriosis for 15 years now and I was diagnosed 5 years ago. I had my first surgery 2 years ago but the surgeon had to stop because it would have led to more complications and told me to wait to have my second surgery until i really want to get pregnant. The difference is that I have to take medicines (androcur) 20 days straight, then pause for 7 days and then back again... until my next surgery. The reason is that (in France, at least) we talk about 5 stages of endometriosis (the fifth means you can't get the surgery anymore) and i'm on the fourth. So the androcur stops my cycles (it's been 5 years now... which is really scary) and stops the endometriosis to grow too much (or at all, i don't really know). I was really curious about your situation because i was wondering if in other countries other than France you have other ways to deal with it. I would like to stop taking any medicine after my second surgery and try to deal with it in a more natural way. For the pain, for me it was more like i was stabbed in my ovaries. I couldn't do anything for a week every month, and fainted A LOT! Thank you so much for making this video.
Have you tried Mirena? It is a hormonal IUD that gets placed in the uterus as a form of contraception. It's been shown to help endometriosis pain and symptoms and in a lot of people, it stops their periods all together. It lasts 5 years, but as soon as you take it out, you can start trying for a baby again. Not sure if you've considered it before, but it could be worth a shot if you're not ready to have another surgery yet.
Hey Ebony, I had my first surgery on April 27th 2015, I always knew there was something wrong but just believed it was in my head. When I had surgery I was diagnosed with stage 2 and I had the coil inserted. It was my life saver for 18 months and in August 2017 we decided to remove it to allow my body normalise for ttc. Unfortunately like yourself, as the months went by, I was in crippling agressive pain, no baby was happening. In January 2018 I decided it was time for another surgery - i was missing work, sick all the time in pain 24/7. I had surgery 9th July 2018, Endo had covered my ovaries and my bowel, my tubes were completely blocked (no chance of getting pregnant) This was all cleared and we have been trying (1 mc last month). I am heartbroken over it but I now know I can get pregnant. My boyfriend had testicular cancer 4 years ago and thankfully made a full recovery but with both our medical issues we will struggle. I wish more people talked about Endometriosis. Love from Ireland xx
Ebony i am virtually sending you all my love. I can't pretend to understand what you're going through but I know you can make it. You are such an inspiring person . I don't really have a lot of words sooo.... All my love hun. ❤️❤️❤️❤️❤️
Hey Ebony, I have endo too and got diagnosed the same time as you. I’m currently waiting for op number 2 which should be in the next couple of months. I knew it was time as all my symptoms just seem to have stepped up a gear about a year after op number one. Hoping to start trying for a baby after op number two and it’s lovely to see a success story with you having Daisy to keep me hopeful!! The struggle is real for us girls eh! Take care xx
Are you nervous about having the op and then saying there’s none there?? That’s my biggest fear! I had the exact same thoughts the first time but I’m curious if that’s just me who thinks that? Xxx
Our Tiny Tribe I was really nervous yeah, and it took me a while to go back to my GP wondering if it was all in my head and also not wanting to have to go through the recovery again because it took a good 6-9 months to feel myself again after op number one. This time around my GP referred me for an MRI scan and they found a big endometrioma (endo cyst) on my ovary so even tho that was rubbish to find out, it made me feel better if that makes sense knowing that the pain has been justified! But I know that’s so silly because the pain I’ve been getting should speak for itself but it took the scan to really prove that yeah it is real and for me to know that the op is the only way forward. P.s I love your vlogs/videos/covers 😘 xxx
Thank you so much for doing this video I’m 21 and had very painful periods nausea and in regular periods for 5 years and I gonna book to see my doctor now that I watched this video thank you ebony xx
It took 20 years to get my endometriosis diagnosis. I have had painful periods and other issues since I was 13, finally got my diagnosis 1 day after my 33rd birthday. 20 years of being told it's just normal period pain and that the problems I have every day were just in my head. My 2nd operation is in 3 weeks. We knew it was time again as one day I couldn't even stand up straight as something was pulling on my right ovary. To be truthful though I only really got 6-8 months relief after the first surgery before a lot of pain and symptoms started coming back. The pill even stopped working for me and I bled for 35 days straight. We have been trying for a baby for 4 months now with no luck, I am worried about my 2nd surgery but hoping it will help. My 2nd surgery was scheduled for 15 months after my first but I postponed it so makes it 18 months between surgeries.
Glad you are talking about this. I was recently diagnosed during surgery for an ectopic pregnancy :( had been struggling monthly since age 12, I'm now 25. I haven't had any ablation or excision surgery, have been told to try the pill first!
I got diagnosed with endo at the age of 19. The doctor told me that my best chance of having kids is within the next 4 years. It’s already been 1 and a half years. I’m still to find someone. Praying that a miracle will happen within these 4 years
I have always had painful periods but only sometimes I would sweat, vomit and shake bc of the extreme pain. But because I don't feel that way EVERY period (I take meds) I dont think I have endo. What you described sounds worse idk... but wow you're really strong! Daisy is a blessing
Hi Ebony, I am sorry you are suffering that pain every month. I had a lap operation to remove endometriomas from my ovaries back in september (I was so scared). I was told excision of endometriosis(cutting it out) was the best way rather than burning it off. I think its important to find a really good surgeon who you trust. Everything went well with my op but I am concerned the cysts could go grow back and have been advised to take the combined pill to help control the endo.
This was literally like hearing myself talk! I was diagnosed 6 weeks ago and am currently having all those mind games about the future and children. Watching your old videos is a big reason for why I got my diagnosis so thank you! How long after your op did you feel better? My pain is worse so far but hoping just because my body hasn't fully settled down yet. Also I was told that I could only have a maximum of 3 operations for endo as the more ops you have the more likely scar tissue is to form. This was my first endo op but i had major surgery to remove an ovary and tube 4 years ago too. Did they tell you about an endo diet? They told me to look it up.
Also I've always explained the pain as if wolverine was in my stomach punching and trying to pull my organs out lol... That's similar to the fork thing right?
Hi, I’ve never commented on a video before but I just wanted to say don’t suffer with the pain for long. I left my endo thinking I would just get it burnt away and try for a baby again but unfortunately it had incapsulated my left ovary and tube and ended up waking from surgery to be told they had to remove it and my right side was still a mess as it was attached to my bowel. They would have performed a hysterectomy but they needed a bowel surgeon to help but no one was available. I’ve been trying in hope to still conceive but had 2 miscarriages. I was told that the miscarriages most likely happen because the egg is having to get through so much scar tissue that by the time it reaches where it needs to be it is too damaged to progress. Sorry for the ramble and I hope it all made sense. Good luck for the future. X
Diagnosed stage IV endo at 23. I’m now 30 and in so much pain. Surgery coming up in February I can’t wait. This is a horrible condition I wouldn’t wish on my worst enemy. I’ve had two kids since my first surgery. I couldn’t push either of them out I felt my pelvic muscles were so weak. I almost lost my second child and I strongly believe it’s because of the endo. I’m scared to even try to have another baby.
I dont have endo, but i do have pcos and feel the same way about the infertility, doing my a levels right now and just worried about the future, thanks for opening up about this, it will help a lot of women xx
This has really opened my eyes, i went on the contraceptive pill when I was 14 because i had VERY painful periods. I would faint on the first day without fail, sweating, insane cramps and my period would last for 10 days. I would have paid all through my period, the week before my period and the week I was ovulating. Im now 20 soon to be 21 and the pill has helped with all my pain but everything you have said sounds like me. Is it worth asking? I've heard from friends diagnosis for endometriosis in the UK is very very slow and can take years and I'm worried if i do have it by the time they find it it will be too late 😭
Get to your GP and begin the journey for a diagnosis. Currently, on average it takes 7 years for a women with Endometriosis to get diagnosed - which is ridiculous! If your doctor is palming you off with ‘it’s in your head’ or its IBS (commonly told to women) continue to go back, and demand a referral to a gynaecologist. The only definitive way to diagnose Endometriosis via laparoscopic surgery, which is costly to the NHS, so for this reason and lack of knowledge is why endo is so poorly diagnosed. Start this process, and get to the bottom of your pain, you shouldn’t be suffering the way you are, fingers crossed for you!❤️
I'm 16 and I have Crohn's Disease and as having really really painful periods so my doctor did laparoscopy and found I had endo so they operated right then and it was stage 3 all on my left side this was three weeks ago so I am still recovering and I have my period atm and it has been a bit better but still in a lot of pain. Thank you for making this video to spreed awareness. My doctor also said I should have kids while I am young as it will have a higher chance of being able to fall pregnant.
I’m only 23 and I had my 2nd operation earlier this year , I feel as if I had to listen to my body and when I felt I needed it :) I had the same feeling nearly cancelled mine the day before felt as if it was in my head , hope yours goes well xx
I started to watch this and my husband heard it from across the room. He got so upset for you that I had to turn it off. He has seen me go through my horrible endo journey and it broke his heart to think of someone else having to go through that. I had a benign tumor on one ovary and had to get the whole ovary removed when I was in high school (what a way to start your last high school semester!? Fast forward to 2016 when my doc said I was misdiagnoses with PCOS, but actually hand evdometriosis. I had my first surgery in February of 2017 and a second one in November of the same year. He sees me have to slow down or sit off to the side at times because I am having bad pains. And every month, when I am about to start a period and I have a couple days of excrutiating pain, he is right there with the Tylenol and heating pad. And when I am having painful ovulation, he is holding my hand as we hope and pray this will be the one that brings us a baby. So far, no baby, but the love and kindness that he shows me fills my heart. Endo sucks. But when you have a wonderful peraon in your life to help support you on your journey, it makes it a little bit easier to get through each day. It is so great to see you and David supporting each other in everything that you do and the love and care that you have for each other.
Thank you for being so open. I was diagnosed with PCOS when I was 15 (2 years ago) and now am doing test for suspected Endometriosis. Definitely hard times as having both conditions is a very scary thought. Thanks for sharing your personal story ❤
I am waiting for my first operation! I feel the same as you! I’m worried there’s going to be nothing there as my doctors said for years that period pain is normal! X
You could have an endometrioma which is a blood filled cyst on your ovary which is causing the tearing pain. That’s exactly how I felt when I had it. That’s how I knew I needed my second surgery. It was only 8 month after my first sadly.
There's no reason you should have to put up with the pain, you're not a wuss at all, you're a freaking legend!! I knew absolutely nothing about endometriosis until you started talking about it, and I actually have one slightly stupid question... Is there any way that if you took a pill to stop your period, it could help? Or does it not work like that? Again, I'm sure that you've looked at every solution possible, I'm just curious about it, and I wish you didn't have to go through it :'( I wish you all the very best, you're an angel and you deserve the best xxx
Chllloe 777 Stopping periods can help actually! Some doctors will tell you to take your pill continuously, or place you on contraception that tends to stop periods altogether. However, Endometriosis is hormone dependent - the adhesions will grow as long as female hormones are present. So, one way to help stop this is to be put into a medically induced menopause. The side affects are awful, but some women would rather this than the hell of Endometriosis. So far there is no cure, but this is one of the only ‘treatments’ out there! It’s a really shitty disease to have😞
I think i have it, but here in Sweden, it is not spoken about, so not many doctors know about it. I have gone in to the hospital so many times, even in the night. But i get sent home because they cannot see anything. But without operation they cannot see, so i am soooo frustrated. Sorry if my english is bad...I want the operation, but it is very hard in Sweden..
So after you explained pain during ovulation, I am thinking I may have endometriosis. I never had painful periods(or cycles in general) and after I had my son I still didn’t, but I started having extreme pain during ovulation after I gave birth. It does feel similar to contractions or almost like a knife stabbing me as well and I can’t stand or walk. I’ve also bled clots multiple times and tissue has come out but I never thought much of it. I’m 3 years postpartum but nothing has changed so thank you for making this video because now I think I need to get checked out.
I have a similar story to yours..I actually had to have emergency surgery to remove a massive cyst from my endo. I didn’t even know I had it. When I had my follow up appt they told me I should try to have a baby now if I want kids. I was only 20 at that time. It took us 2 years & we were actually told we would need IVF because the endo blocked my tubes but one month after we were told that I got pregnant. I’m now 34 weeks with my baby boy 💙
Holly Burch congratulations 🎉❤️
I’m really late (he’s probably been born now) but congratulations, I’m so happy for you !! ❤️
Emma Carmel thank you! He’s a month old now 😊❤️
@@hollymeeks5860 that's so lovely !! I wish your family the best💖hope you had a safe delivery xx
Almost 40, I have endometriosis, stage 4...in my uterus, ovaries, bladder, intestines...(they cut about 50 cm, ileostomy for 18 months 🤬)
That’s a huge mess, a f****** disease.
I just had my 34th surgery early november.
It’s very difficult, a real nightmare... My MRI is the 27th of november to control its growth.
I really wanted to thank you for talking about it on your channel, it's a "taboo disease" that must be managed to emerge from the shadows. NO this is NOT NORMAL to have pain during your periods.
The struggle is real.
I’m not sure if you’re going to read my message (excuse my english, I’m french 😂)... By the way, I really love OTT...! Daisy is such a wonderful little girl, damn she’s sooooooo cute and lovely..!
I send you a lot of courage...
Endogirls are Warriors 🎗(..the yellow ribbon is our sign of recognition around the world...)
Nawel Benzina endo warriors are the strongest 🎗
@@holls.nina2002 YES - right you are !! 25 years of endometriosis, in very good shape, life is good even though I couldn't have kids. Endo warriors are the strongest.
Nawel Benzina 🎗
Bloody hell, you’ve really like really been through it. I’m so sorry you’ve suffered so much - this disease is such an injustice to women. The lack of understanding amongst the medical professionals and GP’s who are reluctant to acknowledge the severity of women’s suffering is just so unfair. I’ve recently seen the number of women suffering Endometriosis, is equivalent to asthma sufferers, yet we’re still in the dark ages with periods and talking about what’s normal, and what isn’t. We shouldn’t be brushed under the rug anymore! I hope you find some relief soon sister💪🏼🎗
I’m 22. And I’ve had endo and ovarian cysts since I was 13. I’ve had two surgeries for it. At 16, They wanted to take my ovaries. But I said no. I was always told it would be hard for me conceive, or I just wouldn’t be able to. And I’m now almost 9 weeks pregnant!
Hi Ebony! I love how you share your story with us. I also have endometriosis and have had it since I was 16, but it took 3 years and lots of doctors telling me it was in my head before I found a doctor that diagnosed me. I was 19 then, got my operation at 20 because I couldn’t have a normal life anymore I could not get out of bed, not go to school, I failed everything. I’m 21 now and since that operation last year I’ve accomplished so much, graduated from school, started uni, I live with my fiancé. He also has type 1 diabetes like David, so when I watch your videos it reminds me of us and also gives me hope to have babies ! Doctors told me to start trying like next year if possible but I’m still 21 just started uni don’t know if I’m ready, but also don’t want to miss the chance of becoming a mother, which I’ve always wanted to be. Anyways thank you for sharing this update with us and being so open about it ! Love from France Xx
Caroline Trintignac, ehh ben courage à toi aussi...!
Ensemble on vaincra en faisant sortir la maladie de l’ombre.
@@verucasalt5033 Il semble que l'age recommandé pour tomber enceinte dépende de l'endroit où se trouve l'endo parce que moi mon médecin ne me presse pas et j'ai bien dépassé la vingtaine... es tu sous traitement depuis ton opération ?
Hanna Louise &Tea, je ne suis plus aucun traitement. L’expérience « ménopause artificielle » a été un véritable cauchemar qui n’a servi à rien si ce n’est permettre à la maladie de gagner du terrain.
Après je ne pense pas qu’il y ait un âge pré-requis pour essayer d’avoir un enfant. La maladie est extrêmement complexe, et chaque cas d’endométriose est « unique ».... Je te souhaite de tomber enceinte, naturellement (ou avec un coup de pouce..) et n’oublions jamais que nous sommes des guerrières...!!! 🎗🎗🎗
Hanna Louise &Tea je pense que ça dépend aussi de l’avancement de la maladie, moi je sais que mon médecin m’a dit que c’était profond et très étendu et que du coup il fallait pas tarder
So much love you Ebony ❤️ we have a street here in South Africa called Ebony as every time we drive past it I think of you ! So special you are your little tiny tribe !! Sending lots of love
I have so much respect for you as you are comfortable to talk about it. I hated it when the doctors turned round and said "everything's fine periods are like that for everyone" when I was young I listened and just assumed I was being a wimp only to find out there is something wrong. Have been very curious about how you felt and I'm so glad that you uploaded this. When you first announced it was when I found out too glad I have you there along the way xx
I am currently lying in bed recovering from an exploratory surgery to confirm that I do in fact have endometriosis. It has taken too many years to finally get to the bottom of my pain and heaviness but I feel so relieved that I have an answer! Thank you for sharing your story as it gives me hope for the future. Xx
Alessia Cesario I hope you’re okay :( xx
Hi ebony, I have endometriosis have been diagnosed for 2 years too. Suffering for a long time with the worst pain. We started trying for a baby 6 years ago when we got married without any luck. However we have just done our 2nd round of ivf and we are pregnant! Yay. I just wanted to say I had an op to remove my endo 2 years ago but because we still couldn't get pregnant was referred for ivf. I'm hoping I have no endo pain too during my pregnancy it would be a blessing. I personally wouldn't do the op again but I had different circumstances, but you had yours and managed to conceive Daisy so I would say do it again before you try for your second. I hope all works out for you. I feel your pain! Xx
Congratulations! I wish you all the best for your pregnancy 💛
I was diagnosed with endometriosis in July and had my surgery, this was after 2 years of everyone telling me it was just period pain. I found your first video before I was diagnosed and knew something wasn’t right. I love how you can talk so openly about it and have managed to have Daisy, it makes me feel more positive about the future! Wishing you all the best ❤️
Thanks for speaking out! I have endo too. Took them 12 years to diagnose and operate. What others are saying on here resonates where you get told it’s in your head. I just had my first baby, and like you, feel completely blessed. People think we got pregnant fast because we conceived a month after our wedding but what they don’t realise was that it was a long, hard journey to get to the point where I was fertile that began long before our wedding day. I haven’t had a second operation yet - we also want to wait until we’re ready for baby number two but you’re a couple of steps ahead. So I will wait, watch and follow your story. All the best ❤️
I've been struggling with rlly terrible period pain for a while now and I went to the highest endo specialist and had the operation a few weeks ago.
I was expecting the worse but luckily they didnt find any endo, they only found a massive fibroid which they removed. My doctor said he was shocked bc my symptoms are exactly like endo symptoms but I guess u just never know until physically going in there and looking.
I'm happy that I dont have endo but I'm just terrified that after this I'll still feel the same pain and I wouldnt know what to do at that point. I hope I'll feel better from now on. If anyone else has been through a similar experience please let me know.
Wishing you all the best ebony! I was so happy when u were pregnant bc I knew u were worried about that. and shes such a beautiful and sweet girl! Thanks for the update💖
I'm not sure how big your fibroid was but I got diagnosed with Fibroids and Cysts and a 3cm nodule in my uterus (my OBGYN was really surprised at how many fibroids she had to remove, non were cancerous luckily).
I normally have always had a really heavy period with intense cramping but I told myself to be a woman and deal with it. All these other girls have to deal with it too, if you (anyone) have the slightest feeling it might not be normal GO GET CHECKED.
It is worth it. I wish I had been checked 6 years earlier...
My period got worse, going from 6/7 days to lasting 11 days and having to change my super + tampons every hour instead of every 4hrs, I was also in so much pain I couldn't work.
After less than a week my OBGYN was sure I needed surgery so I had a Hysteroscopy D and C using the Myosure Procedure because I wanted to have kids. At this pt. I had been trying for 6 yrs and was 37. After surgery the relief was instant and I became pregnant 2 months after my surgery, currently I'm 15wks and 5 days pregnant :)
Stay strong Ebony! I love how you are raising awareness about the condition and being so open about this.Xx
i am so sorry for anyone who has to go through this. you are so strong. keep fighting.
I really needed this video. Im currently being diagnosed with Endometriosis. I think it's something that needs more awareness and people need to speak more about.
Thank you for talking about your experience :) x
Im 21 and have endometriosis, I found out thanks to you Ebony - I had no idea endo even existed before your posts and video so I am so thankful. You helped me realise my symptoms weren't normal and convinced me to get to a doctor (I literally experience everything the same as you ). Its taken 2 years of hundreds of doctors telling me to "man up" and that I'm "just a woman - its life" ! But I knew something was wrong. Keep spreading the word, and your story. You're helping more people than you realise. Thank you x
I was literally diagnosed with Endo a couple of days ago after being passed from doctor to doctor for years. I've just started university so its a really scary time. I hope that I can manage it as well as you have and that everything turns out ok! Thank you for the video Ebony xx
I remember I suspected my endo and TH-camd it to see if anyone had the same. At the time I found you and have been watching your videos ever since. I showed my then fiancé now husband and he watches your videos with me.
I have endo & I plucked up the courage to make a video about it. During my surgery they discovered that I was born with only one Fallopian on the left side which is blocked and my left ovary isn’t functioning well.
The pain is awful still and I had surgery in Late July this year.
It affects my mental health a lot.
I decided to make it more known and talk about my story to help other young girls and women.
Thank you for posting the first one. It brought light to the condition itself and made me push to get help. 💛
I recently had my 2 surgery for endometriosis on 2/12/20. This time I went to an Endo Specialist who performed the surgery using Excision. He removed a bunch of endo along with blisters on my bowel and bladder. I’m awaiting my post op appointment to find out more details. At my initial appointment before surgery, I had brought pictures of my first surgery back in 6/30/2017. That surgery was performed by a different doctor (who was not a specialist) and was adamant that I had no sign of endometriosis. She told me the pain was in my head. Dr. Yeung, my current endo specialist, saw stage 1 endo from looking at those surgical photos from 3 years ago. I decided to seek help after my pain became increasingly worse and started to effect my bowel, bladder and GI issues in general. I wish you all of the luck through your endo journey. I highly recommend joining Nancy’s Nook on Facebook and also reading The Doctor Will See You Now by Tamer Seckin.
You're not a wuss, thank you for educating us. I've never heard of it and as a guy I thought it was really informative and helpful to understand. David is the kindest guy ever and I love that you're both open to the idea of adoption. Daisy is sooo cute and getting so big!
thankyou for putting this video up on your channel, i’m 17 and fought with my doctors to do surgery to look for it for 2 1/2 years and am finally having surgery on the 24th of April. this is the only thing i’ve been able to compare to my pain.
Hi Ebony! First of all, I want to say that this video is so important. You described the feelings and pains of living with endometriosis perfectly! I was dealing with the same symptoms a few years ago when I came across your videos. That is this the moment I knew that I was not alone and this is a real and common thing. After having my operation, they found that I, luckily, did not have any endometriosis, by a deep retraction pocket on my ovary which is usually linked with endo. It is called Allen Masters Syndrome and has the same symptoms as endo! I am from Prince Edward Island, Canada and I feel as though I was led by God to a surgeon in the United States. His name is Dr. Patrick Yeung and he operates specifically on endo out of St. Louis Missouri. He is practicing new techniques resulting in patients only needing a single operation and it is not growing back!! I had constant symptoms for 2.5 years and I am now approaching 1 year of being completely symptom free and I feel amazing!! Please look him up! Sending lots of love your way :)
glad you share your story and updates!! i’m almost 17 and i’ve been struggling with endometriosis since 12/13. for the longest time i felt soo alone. glad i’m not and people like you openly talk about it.
Hey Ebony! I'm 21 and have pretty bad endometriosis, adenomyosis, and pelvic congestion syndrome. I had my first operation this year in march and my second in September. The first operation was ablation and the second was excision. Sadly, I don't feel any better. The endo is deep infiltrating and has basically destroyed my bladder to the point where it is inoperable. I decided to have the second surgery when I was in daily pain. I was taking large amounts of ibuprofen daily and could barely manage day to day activities. Trust me you're not making up this pain. Multiple doctors told me, that the pain was all in my head and that endo doesn't grow back that quickly. they were so wrong! There is a reason why you're in pain! Have you read the book the doctor will see you now by Tamer Seckin? It's really worth a read! I wish you only the best my fellow endo sister
Hi Ebony, i am 23 and I got diagnosed with stage 4 Endometriosis 4 years ago. I have had 3 excision surgeries and in my most recent in May my right ovary and fallopian tube were damaged by endo so had to be removed. It had spread like wildfire since my previous op 9 months prior. I'm now back to square one. Periods are heavier than ever and still in agony day in day out. It's so deflating to keep going through treatments and surgeries for it to just come back again. My surgeon has tried all that he physically can to relieve me of my symptoms but it just keeps coming back.
I really hope the next surgery goes well for you. I totally get what you mean by doubting yourself but don't. You know your body and know what endo feels like. It would be nice to see more videos like this as endo isn't really spoken about much and there isn't much awareness out there. Chin up hunni, we are all here for eachother 💛
Such an informative video Ebony, well done for sharing. The internet should be used for this kind of thing, rather than spreading hate and shame. I have a chronic illness that few understand and have been asked whether the pain could be in my head and not as bad as I’m making out, I sometimes struggle with that and doubt myself. Growing up, if I said to my mam I was unwell or not well enough to attend school. She would constantly question me, saying no one knows another persons pain. I’m a parent myself, I know when my children are unwell. Sending gentle hugs Ebony, you know when you can’t take it anymore. You will know when the time comes to face surgery again. Xx
After 9 years of painful and heavy periods I was diagnosed with endo and polycystic ovaries last year after bleeding non stop for 6 months! (however my cysts are on the inside of my ovaries meaning they can’t take them away. I’m only 20 so it’s too risky) all I can say to anyone is not to wait to see a doctor about it! I had my operation in October and was fine for 3 months. I also had the coil fitted while under to try and stop anymore Bleeding. Then the pain came back and now as it’s so bad I’ve had to have hormone shots to try to stop it all. These shots will put me through early menopause for 6 months. So I have weight gain and night sweats to look forward to😂 I love seeing these videos because I wish there was more when I first started going through it. My chances of having a baby is significantly low than most girls ... but I’m not giving up hope! Sending my love to you and everyone else going through this! We can do this!💕💕
Hi Lovely, please do not let them burn your endo. Excision is the best way to remove the growths and will hopefully minimise the amount of surgeries you'll need to help. I have endo myself and that is the advice I have received from professionals and fellow girls with endo. Thank you for speaking about your experience and raising awareness. You are incredibly strong 😙
Ebony you are so amazing to speak so openly about your Endo journey. Endo sucks for sure, I was diagnosed with Endo when I was 21yrs old, like you I just thought I had just very severe painful periods compared to everyone else, but when I got diagnosed (I had to pay privately as at the time none of my doctors believed there was anything wrong), I paid nearly £1,400 for my surgery back in 2003 & although I was unhappy paying this money as I should have got this surgery on the nhs, it was the best money I’ve spent as I have my diagnosis. I’m now under Poole Hospital under Mr Tyrone Carpenter (you may know him as I know you moved to Bournemouth recently), I too love in Bournemouth lol 😆 and have been told they won’t do any further surgeries for me as it causes further complications like scar tissue, adhesions on bowel that cause further issues etc. Life with Endo is excruciating and I am so happy you have spoken to us so openly and honest about your own personal experience. I’m 37yrs old, I so want a baby and now you’ve said that labour pain was like Endo pain and you thought it was Endo pain you were experiencing and not contractions, this made me shocked as it just shows how bloody excruciating life with Endometriosis is. We are all Endo warriors and together we can fight this awful disease. You are awesome Ebony 💖
I'm 26 with endometriosis. Just had my 4th surgery for it following the birth of my son (born early Jan) who took us over 4 years to conceive. I totally understand what you go through. It's horrific. I'm glad you're using your platform to spread awareness, keep up the positive influence!!
A bit more details. I was diagnosed at 19 after years of issues. Multiple operations with the 3rd one finding my left hand side covered in adhesions and endo. After that surgery I did some fertility treatment and about 8 months later we finally got pregnant with our boy. That's how I found you, I wanted mummy vloggers with kids the same age. I had a horrendous birth especially with my pain and no pain relief. 6 months post partum my cycle came back properly (I breastfed until 8 months) and every second month I was in agony all month. Went back to the specialist and ended up booking in my next surgery which happened almost 2 weeks ago. They found my ovary and tube on that side stuck down really badly but managed to free it and it looks healthy thank goodness. I got to it at a good time. But that's why I got so much pain because everytime my ovary tried to have it's month ovulating it was struggling. We're officially ttc #2 now and will start meds in January, although I'm really hoping it will happen naturally but who knows! My hubby and I have been together 10 years (4 married) and own our house etc so for us it was a no brainer to try and have kids whilst I'm as healthy as possible then we'll try and suppress my symptoms somehow.
I just wanted to tell you my endo story. I suddenly got very sick at 15 and surgery was advised, so we went ahead with it. The surgeon told us afterwards that he'd dealt with the problem he was looking for and discovered endo. He didn't know what would be the best way to remove it, so he left it to be professionally done. Time jump 5 years. I found an amazing gyno and he said he was going to go in and remove it. He went in and physically cut out the endo instead of lazering it (his preference) and got all of it out. I went and saw him a month or two ago and he told me that he considers me stable! (Huge news because I have other conditions) I still don't know if any future fertility will be effected, but he doesn't believe it will be. I had horrendous pain from the very first one, now by choice I don't even bleed anymore (controlled by medication). Everyone with endo has such incredible, good or bad, stories and it's a wonderful feeling to be able to tell other sufferers that you actually can become stable!
I'm 21, 22 in March, and I just got "official" word that endometriosis was the cause of all my pain legit a week ago, so no surgeries yet. I've had a heavy period since I started at age eleven. At first it was super easy, but the older I got the worse it got. I've known in the back of my mind that it was endo for at least a year or two because of the intense pains I would have during my period AND during ovulation, but the last few months it has exceeded to the point of having those intense period pains randomly during my cycle as well as when it can be expected. Also, I've recently been having pains when stretching or twisting oddly and I honestly didn't even think about it being from endo until you mentioned it. I appreciate you being so open about all this so much because it has helped me so much!
I had my second surgery last January '17 and was similarly told to try for a baby asap as they found a lot of growth on my bowels etc. Was lucky enough to get pregnant twice in 6 months (1 miscarriage and my now 8 month old daughter)
New it was time for second surgery as I was back to being completely out of action for the first half of each period and it was affecting work etc. Starting to get bad again now so keeping an eye on it!
It sucks and sending love to you and everyone else who deals with this crap every month 💕
Kinda familiar topic. Endometriosis. My sister has them and she was also told that having kids could be difficult. BUT now she's one awesome 15yr old son. So, bless him and bless Daisy. And of course bless their mums ;)
Your are awesome to share the different paths of your life. I wish the best for you and family. Positive attitude really helps so much, so keep going. And remember, everyone needs that time when you can't hold anymore and have a really good cry and let it out and gone. Hugs
Dear Ebony, thank you so much for sharing and talking about this. It is so important.
I have endo as well. Had severe cramps last year during menstruation and doctors thought it was my appendix, so they took it out and I asked them to look for endometriosis while they were at it. They discovered endo scarring directly under my appendix, and removed my appendix even though results later showed there was nothing wrong with it.
Last Monday I had my laparoscopic surgery. They removed scarring and cysts on both of my ovaries. I’m healing well and my endo pain is already so much better.
Also had a IUD put in, will stop the pill soon. I’m not interested in children right now, or ever, and feel that stopping my cycle through using hormones is my best choice, had to try five different pills until I found the correct one. Endo and opera singing is not a great combination, but Im hoping that I now have a long(er) term solution that won’t get in the way of my career, education and practicing.
Sending lots of strength and light your way, you are not alone.
All my best from Reykjavík 😘
I love your so open about it because I will be getting tested for endometriosis and I ain’t going to lie i am terrified. I am going to university next year so it is a scary time as it is. I have such a similar story I’ve been suffering with passing out and being sick for years about my periods. Your amazing and thank you Ebony! Ps. Daisy is adorable xxx
It's scary before you know for sure but it'll be worth it afterwards! I hope you dont have it but if you do, then you will find ways to cope and make it better:) good luck at uni :)
So good of you to share this. I have friends who suffer with this and my cousin had very bad endometriosis when she was younger too but went on to have beautiful twin boys. Really hope this helps others and that you get some answers to your questions too. Big hugs 🤗 xxx
Now you're a mom of two! Thank You Jesus 💛💛💛
Hey doll, I feel your pain! Quite literally. Just got diagnosed with endo after putting up with this for over 12y. Crazy pain from when my period is done till the day after I ovutale, the sweats, the stabbing... On my scan they saw I have endometriomas in both ovaries which is quite scary as we just got married and were planning on Ttc and been told I would need surgery and maybe some fertility help. For years I though I was just crazy and making the pain and tiredness up, but finally got my answers! Waiting for a meeting to discuss my surgery and hoping it’ll be all ok in the end. Seeing your video after the surgery and then the baby announcement made me cry! So happy you were able to have Daisy and gave me lots of hope 🙂 get that checked soon as that stabbing pain is something very familiar and book the surgery before the scar tissue and adhesions get to much and may block the tubes making bb2 very difficult in the future... Good luck And keep us updated!!!! Love your vlogs and your super cute family 💞💞
I just tried to write this but it was a bunch of blubber😂 I started when I was 14 and from day one I was heavy and in a lotttt of pain every single time. My doctor suspected endo but we never found out, but my mum had it and I was told to not be surprised if I ended up with it in the future. My sister is going through the same pain I went through, except she is getting cramps that are really horrid but she isn’t actually bleeding loads which is a huge worry, but your videos are so so educational and I really appreciate you talking about it to understand what it is and how it works, thank you ❤️
The video that made me aware of endometriosis ! Went to the doc about it, took me 2 years after the appointment with the doc to have my surgery but found out 2 weeks ago that I do have endometriosis. Thank u for uploading this or I’d probably still be trying to find out what tf was up with me 🥲
Hi :) I have endo got diagnosed and had surgery in 2015, have been trying for a baby for 17 months but no such luck instead I’ve been hot with pain that is indescribable instead worsening by the month. I am finally due to have my 2nd surgery on 20th December to cut it all out and free up my organs and possibly have part of my bowel removed ( not exaggerating when I say I’m 10000% shitting it) it may mean I’m in hospital on Christmas Day and over the Christmas period due to the large extend of my surgery but right now I would go through hell and back to give me even the smallest chance of getting pregnant and having some relief from this pain. This condition is truley life changing and really tests you as a person but also proves how amazingly strong we all are. Good luck with your second surgery fingers toes and everything else crossable it gets rid of that pain for you. Xxx
Hi Ebony. Mine has always started outside of my period too. I never used an app so not sure if it has anything to do with ovulation in my case, but I would be fine the week after my period, then pain would begin in the second week of my cycle and increase every week until my period finally came which is when I'd have the full brunt of it. Unfortunately, before I tried to stop my periods all together, I was really irregular so this pain could sometimes be continuous for over a month which is why my doctor suggested that I take the mini pill which usually stops your periods.
For three months, I had no periods or pain at all (life changing!) but the periods started up again and lasted a few weeks at a time but were not at all heavy. This went on from May until October when they finally ended, and now I have a few bits of blood about once a week but not enough to notice. The pain is also really infrequent and nothing at all like it was before I was on the pill. It's uncomfortable enough to notice but I grit my teeth and bear with it, and it's fine to deal with. Life has really changed.
That being said, it was never all roses. Before finding this pill, a lot of other pills I took made my symptoms worse. It took five months and six pills for my doctors to figure out that I have a sensitivity to oestrogen (very common with PCSO and endo) that was making me feel like (sorry if this is TMI) my womb was falling out of me. Thankfully, my progesterone-only pill has taken that particular pain away completely!
Thank you for talking about this. It can be such a taboo subject, but the numbers don't lie. So many of us have it and it's so important to have that support network around each other.
I'm terrified to stop taking this pill when I'm ready to start trying to get pregnant, so it's stories like this and knowing that I'm not alone that help me through (so cheesy I know, sorry!).
Best of luck with it all xxx
Abi Davis-Fletcher what’s the pill that your on because I’m on the 28 day pill and I have nothing but bother with my periods. I bleed so irregularly and for weeks at a time and I have endometriosis, they found traces when I was 16 then diagnosed me with ibs 18 months later, although I’m not sure if it is ibs or my endometriosis because i know they misdiagnose a lot of people. The pains unbearable when it does flare up x
@@ClaireLouiseHedley So sorry I've only just see this! I'm on Desogestrel. It's progesterone only so has helped me so much since my body just seems to go to extreme lengths to reject oestrogen!! I hope you find something that works for you. Wishing you the best of luck xxx
Hi Ebony, thank you so much for sharing your story. I got diagnosed when I was 18 (I’m now 23) and it’s the worst. It takes over your life completely and I’m so sorry to hear you’ve been so unwell. I hope you find a treatment that works for you. I’m on a medical menopause treatment which isn’t without its side effects but it is the only thing that has worked for me. It also might be helpful to see a pain specialist? They can refer you for physiotherapy, cbt, acupuncture and it’s all around mindfulness.
I had my second surgery 2 years after the first and I had to have it because the pain got so unbearable I couldn’t work or do anything anymore.
I have endo too I’ve had two laps the first they took out my appendix, and said I didn’t have endo (now I know I did I’ve had issues for years) then I was diagnosed the second time in August 2017. I think I’m ready for my next op but my surgeon doesn’t think so xxx
I have just turned 16 and have been suffering with endometriosis since I was 7 nearly 8 I had my first surgery 6 weeks ago! I absolutely love your channel your such an inspiration 💛
I'm so glad you got a diagnosis and managed to have Daisy. So sorry you have to suffer every month doesn't sound like fun at all and I'm hoping your video helps more women realise that extreme pain during periods is not normal x
I remember when you announced that you had it a couple of years ago, hope you feel better soon x
Holly Cole not again? You do know you can’t cure it right?
Katepalmer when I posted the comment I forgot that there isn’t a cure. I didn’t think to edit it, apologies.
Thank you for bringing awareness. I have suffered terribly too. I am desperate for another child, but Im having to have ops every 3 monthsand now I've been diagnosed with uterine cancer. I would recommend op asap to keep on top of it as I have been made to and yet it still turned into cancer. Good luck hun xxx
Firstly sending all the hugs! Second I know having surgery is a big deal but damn ebony you dont have to just suffer and be in crazy amounts of pain!?!?! Like that's hella not something your required to just have to do! Sending all the love 💕💕💕💕💕💕💕
Your so brave! Always remember that! Beyond positive 💜
Bless you Ebony! I hope the next operation, when you decide to have it, goes well. ❤️
I had my second op for endometriosis 2 years after my first. The second operation showed minimal endometriosis regrowth (I was in a medical menopause for one of those years to help stop regrowth) but my bowel had stuck itself to my pelvic wall and my right fallopian tube was covered in scar tissue. I also had a tubal patency test at the same time and found out that unfortunately that right tube is useless. I definitely felt like I was making my pain up before both my ops too. I’m back in medical menopause again now and I’ve been told when I’m ready I’ll need IVF. Horrible x
Thank you so much for making this video! Any helpful tips on doctor visits? I've been going to my doctors for years about my periods, the excruciating pains which made me have days off school, and I've been sick and often pass out or feel extremely faint with them. However, every time I go I get told periods are painful and its normal...but it doesn't feel normal at all! Really struggling to get my voice heard but everything you've said is true for me too. Hoping soon something can change! Good luck with everything xx
Amy Wallace my advice is to just keep pushing, keep mentioning endo, i fought with my doctors for 2 1/2 years and am finally having surgery in april, because my mum and i continued to push for it and insist that my gynaecologist check for it
I suffered from the age of 12. Was diagnosed at age 28. For 16 years I was told to toughen up. Endometriosis is a nightmare. I’m yet to have surgery (had emergency cyst removal which resulted in the diagnosis)
Love that you’re so open. I also have really painful periods to the point where I’m in a fetal position crying. The first 3 days are the worst. I wonder if I have endo. I would have to speak with my doctor
Hi, I'm really pleased I've seen this video. I have endo and have had it for over ten year's. I'm 14 weeks pregnant and ready for this journey. So pleased that you said about child birth being like endo because that fills me with hope. If I can handle endo each month then giving birth hopefully with be ok Ish! 🤞🏾 Here's hoping! 😂 X
Thanks for sharing your story the more than share the better the understanding . I’ve had 20 surgeries for endo , couldn’t have any children and have had to have a full hysterectomy. Endo is pure hell and it’s normal to think it’s all in your head but it’s not . The only thing I would say is don’t let it get to bad before the second surgery because you could end up with severe complications . Have you tried the monthly injections that put you into fake menopause that may give your body a break and calm things down especially if your having ovulation pain . Have you been scanned because also maybe you have a cyst on your ovary that’s causing you extra pain . I’m not a dr or anything lol just going off my personal experience but if it’s pain that’s making you faint etc then I personally wouldn’t leave that xxx
I basically have all the symptoms that you have. Went to the doctors, and she said "if we had to operate everyone with bad period pains, we wouldn't be doing anything else", and said that period just are painful. She did a gyno-examination and said everything looked fine. And the she scheduled an appointment for monday to talk about getting on the pill. I usually get a feeling if something doesn't feel right, about a certain situation and I have that feeling now.. And it usually always turns out that I'm right. I think I'll ask for her to referrer me to a specialist. Your video's has helped me out so much. So thank you so much for making an update
Ugh this makes me so upset. Doctors talking to women like we’re a burden!😒 lack of empathy and understanding amongst doctors is crippling for women and doesn’t help any women trying to find relief and treatment. I understand it’s hard to differentiate between someone who is having a bad period, vs someone with endo. However, if you’re suffering every month with long heavy periods, painful sex, pain when peeing and painful poops, extreme fatigue etc.. this is evidently more than a bad period. Please push a laparoscopic exploration, and seek a second opinion- you shouldn’t be suffering this way❤️
I’m so sorry that she made you feel like you were being difficult. It so so sad that the people who are meant to be able to help so often make us feel like we’re being over dramatic! Keep pushing! I also had that gut feeling that something wasn’t right. You know your body and you know when something is up! Xxx
So rubbish isn’t it!! I have a question, I’ve never hear anyone say about tiredness with endo, is that a symptom?? I’ve literally been going in for the past few months saying I’m exhausted beyond belief but they’ve never linked the two. If it’s a symptom then that make so much sense haha!
Our Tiny Tribe I have heard alot of women talking about tiredness being a symptom. Or that they struggle with being tired as one of their everyday struggles. I’m also constantly tired. So I Think it is linked to endo
It’s not all in your head! It’s very valid and you deserve the best treatment 💗
I’m having my second laparoscopy a week today! I’m having to have it at an endometriosis specialist centre in hull because I was admitted back into hospital 2 months after my first op but I would definitely recommend looking for an Endo specialist centre near you when you’re ready for your second op. They’re so understanding, take everything into consideration and I just feel so much safer and secure going into this second operation than I did going in for my first at my local hospital if you get what I mean? Hoping you get some resolutions soon 💖
Also! Endo silence Scot on Instagram is an amazing page of knowledge, advice and support! I would definitely recommend following her :)
I discovered your channel after your first video about endometriosis and am so glad you are continuing to talk about it! It’s so common and it’s so crazy how women and people with vaginas have such difficulty being diagnosed due to the lack of research about endometriosis.
I have endo and have a 2.5 Yr old from IVF. I think you have to go by your symptoms and the impact it is having in your life xx
I remember when you announced it, i really hope that your okay and that you get well soon XX ps daisy is the freaking cutest baby EVER 😂
Hello! Thank you for this video. I have had endometriosis for 15 years now and I was diagnosed 5 years ago. I had my first surgery 2 years ago but the surgeon had to stop because it would have led to more complications and told me to wait to have my second surgery until i really want to get pregnant. The difference is that I have to take medicines (androcur) 20 days straight, then pause for 7 days and then back again... until my next surgery. The reason is that (in France, at least) we talk about 5 stages of endometriosis (the fifth means you can't get the surgery anymore) and i'm on the fourth. So the androcur stops my cycles (it's been 5 years now... which is really scary) and stops the endometriosis to grow too much (or at all, i don't really know). I was really curious about your situation because i was wondering if in other countries other than France you have other ways to deal with it. I would like to stop taking any medicine after my second surgery and try to deal with it in a more natural way.
For the pain, for me it was more like i was stabbed in my ovaries. I couldn't do anything for a week every month, and fainted A LOT!
Thank you so much for making this video.
Have you tried Mirena? It is a hormonal IUD that gets placed in the uterus as a form of contraception. It's been shown to help endometriosis pain and symptoms and in a lot of people, it stops their periods all together. It lasts 5 years, but as soon as you take it out, you can start trying for a baby again. Not sure if you've considered it before, but it could be worth a shot if you're not ready to have another surgery yet.
Hey Ebony, I had my first surgery on April 27th 2015, I always knew there was something wrong but just believed it was in my head. When I had surgery I was diagnosed with stage 2 and I had the coil inserted.
It was my life saver for 18 months and in August 2017 we decided to remove it to allow my body normalise for ttc. Unfortunately like yourself, as the months went by, I was in crippling agressive pain, no baby was happening. In January 2018 I decided it was time for another surgery - i was missing work, sick all the time in pain 24/7. I had surgery 9th July 2018, Endo had covered my ovaries and my bowel, my tubes were completely blocked (no chance of getting pregnant) This was all cleared and we have been trying (1 mc last month). I am heartbroken over it but I now know I can get pregnant. My boyfriend had testicular cancer 4 years ago and thankfully made a full recovery but with both our medical issues we will struggle. I wish more people talked about Endometriosis. Love from Ireland xx
Ebony i am virtually sending you all my love. I can't pretend to understand what you're going through but I know you can make it. You are such an inspiring person . I don't really have a lot of words sooo.... All my love hun. ❤️❤️❤️❤️❤️
Hey Ebony, I have endo too and got diagnosed the same time as you. I’m currently waiting for op number 2 which should be in the next couple of months. I knew it was time as all my symptoms just seem to have stepped up a gear about a year after op number one.
Hoping to start trying for a baby after op number two and it’s lovely to see a success story with you having Daisy to keep me hopeful!!
The struggle is real for us girls eh! Take care xx
Are you nervous about having the op and then saying there’s none there?? That’s my biggest fear! I had the exact same thoughts the first time but I’m curious if that’s just me who thinks that? Xxx
Our Tiny Tribe I was really nervous yeah, and it took me a while to go back to my GP wondering if it was all in my head and also not wanting to have to go through the recovery again because it took a good 6-9 months to feel myself again after op number one.
This time around my GP referred me for an MRI scan and they found a big endometrioma (endo cyst) on my ovary so even tho that was rubbish to find out, it made me feel better if that makes sense knowing that the pain has been justified! But I know that’s so silly because the pain I’ve been getting should speak for itself but it took the scan to really prove that yeah it is real and for me to know that the op is the only way forward.
P.s I love your vlogs/videos/covers 😘 xxx
I’m currently in the process of being diagnosed with endo! This video was so helpful ebony! 🌟 Thankyou xxx
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Thank you so much for doing this video I’m 21 and had very painful periods nausea and in regular periods for 5 years and I gonna book to see my doctor now that I watched this video thank you ebony xx
It took 20 years to get my endometriosis diagnosis. I have had painful periods and other issues since I was 13, finally got my diagnosis 1 day after my 33rd birthday. 20 years of being told it's just normal period pain and that the problems I have every day were just in my head. My 2nd operation is in 3 weeks. We knew it was time again as one day I couldn't even stand up straight as something was pulling on my right ovary. To be truthful though I only really got 6-8 months relief after the first surgery before a lot of pain and symptoms started coming back. The pill even stopped working for me and I bled for 35 days straight. We have been trying for a baby for 4 months now with no luck, I am worried about my 2nd surgery but hoping it will help. My 2nd surgery was scheduled for 15 months after my first but I postponed it so makes it 18 months between surgeries.
I have Endo too and my period cramps are literally the worst part
Glad you are talking about this. I was recently diagnosed during surgery for an ectopic pregnancy :( had been struggling monthly since age 12, I'm now 25. I haven't had any ablation or excision surgery, have been told to try the pill first!
I hope you're ok. xx
I got diagnosed with endo at the age of 19. The doctor told me that my best chance of having kids is within the next 4 years. It’s already been 1 and a half years. I’m still to find someone. Praying that a miracle will happen within these 4 years
I have always had painful periods but only sometimes I would sweat, vomit and shake bc of the extreme pain. But because I don't feel that way EVERY period (I take meds) I dont think I have endo. What you described sounds worse idk... but wow you're really strong! Daisy is a blessing
Hi Ebony, I am sorry you are suffering that pain every month. I had a lap operation to remove endometriomas from my ovaries back in september (I was so scared). I was told excision of endometriosis(cutting it out) was the best way rather than burning it off. I think its important to find a really good surgeon who you trust. Everything went well with my op but I am concerned the cysts could go grow back and have been advised to take the combined pill to help control the endo.
This was literally like hearing myself talk! I was diagnosed 6 weeks ago and am currently having all those mind games about the future and children. Watching your old videos is a big reason for why I got my diagnosis so thank you! How long after your op did you feel better? My pain is worse so far but hoping just because my body hasn't fully settled down yet. Also I was told that I could only have a maximum of 3 operations for endo as the more ops you have the more likely scar tissue is to form. This was my first endo op but i had major surgery to remove an ovary and tube 4 years ago too. Did they tell you about an endo diet? They told me to look it up.
Also I've always explained the pain as if wolverine was in my stomach punching and trying to pull my organs out lol... That's similar to the fork thing right?
Hi, I’ve never commented on a video before but I just wanted to say don’t suffer with the pain for long. I left my endo thinking I would just get it burnt away and try for a baby again but unfortunately it had incapsulated my left ovary and tube and ended up waking from surgery to be told they had to remove it and my right side was still a mess as it was attached to my bowel. They would have performed a hysterectomy but they needed a bowel surgeon to help but no one was available. I’ve been trying in hope to still conceive but had 2 miscarriages. I was told that the miscarriages most likely happen because the egg is having to get through so much scar tissue that by the time it reaches where it needs to be it is too damaged to progress.
Sorry for the ramble and I hope it all made sense. Good luck for the future. X
hey i know what it is and i just want to give out my support really, be strong and may it improves love u girl
Diagnosed stage IV endo at 23. I’m now 30 and in so much pain. Surgery coming up in February I can’t wait. This is a horrible condition I wouldn’t wish on my worst enemy. I’ve had two kids since my first surgery. I couldn’t push either of them out I felt my pelvic muscles were so weak. I almost lost my second child and I strongly believe it’s because of the endo. I’m scared to even try to have another baby.
I dont have endo, but i do have pcos and feel the same way about the infertility, doing my a levels right now and just worried about the future, thanks for opening up about this, it will help a lot of women xx
Sending you as many positive vibes as you kept sending through your vids,which is a lot :)
This has really opened my eyes, i went on the contraceptive pill when I was 14 because i had VERY painful periods. I would faint on the first day without fail, sweating, insane cramps and my period would last for 10 days. I would have paid all through my period, the week before my period and the week I was ovulating. Im now 20 soon to be 21 and the pill has helped with all my pain but everything you have said sounds like me. Is it worth asking? I've heard from friends diagnosis for endometriosis in the UK is very very slow and can take years and I'm worried if i do have it by the time they find it it will be too late 😭
Get to your GP and begin the journey for a diagnosis. Currently, on average it takes 7 years for a women with Endometriosis to get diagnosed - which is ridiculous! If your doctor is palming you off with ‘it’s in your head’ or its IBS (commonly told to women) continue to go back, and demand a referral to a gynaecologist. The only definitive way to diagnose Endometriosis via laparoscopic surgery, which is costly to the NHS, so for this reason and lack of knowledge is why endo is so poorly diagnosed. Start this process, and get to the bottom of your pain, you shouldn’t be suffering the way you are, fingers crossed for you!❤️
@@lorna5127 thank you ❤️❤️
I'm 16 and I have Crohn's Disease and as having really really painful periods so my doctor did laparoscopy and found I had endo so they operated right then and it was stage 3 all on my left side this was three weeks ago so I am still recovering and I have my period atm and it has been a bit better but still in a lot of pain. Thank you for making this video to spreed awareness. My doctor also said I should have kids while I am young as it will have a higher chance of being able to fall pregnant.
I’m only 23 and I had my 2nd operation earlier this year , I feel as if I had to listen to my body and when I felt I needed it :) I had the same feeling nearly cancelled mine the day before felt as if it was in my head , hope yours goes well xx
Love your videos
My sister has endometriosis and it’s absolutely awful for her! It’s so sad to see her in so much pain.:( I really feel for you Ebony💔
I started to watch this and my husband heard it from across the room. He got so upset for you that I had to turn it off. He has seen me go through my horrible endo journey and it broke his heart to think of someone else having to go through that. I had a benign tumor on one ovary and had to get the whole ovary removed when I was in high school (what a way to start your last high school semester!? Fast forward to 2016 when my doc said I was misdiagnoses with PCOS, but actually hand evdometriosis. I had my first surgery in February of 2017 and a second one in November of the same year. He sees me have to slow down or sit off to the side at times because I am having bad pains. And every month, when I am about to start a period and I have a couple days of excrutiating pain, he is right there with the Tylenol and heating pad. And when I am having painful ovulation, he is holding my hand as we hope and pray this will be the one that brings us a baby. So far, no baby, but the love and kindness that he shows me fills my heart. Endo sucks. But when you have a wonderful peraon in your life to help support you on your journey, it makes it a little bit easier to get through each day. It is so great to see you and David supporting each other in everything that you do and the love and care that you have for each other.
Thank you for putting this on, you make me and everyone else watching feel so much better about Endo! 💕
Thank you for being so open. I was diagnosed with PCOS when I was 15 (2 years ago) and now am doing test for suspected Endometriosis. Definitely hard times as having both conditions is a very scary thought. Thanks for sharing your personal story ❤
Charlotte C.123 I’ve got pcos and I’m sure I have endometriosis to!! I’ve seen so many consultants over the past 2 years and I’ve got no where!!
I am waiting for my first operation! I feel the same as you! I’m worried there’s going to be nothing there as my doctors said for years that period pain is normal! X
You could have an endometrioma which is a blood filled cyst on your ovary which is causing the tearing pain. That’s exactly how I felt when I had it. That’s how I knew I needed my second surgery. It was only 8 month after my first sadly.
There's no reason you should have to put up with the pain, you're not a wuss at all, you're a freaking legend!! I knew absolutely nothing about endometriosis until you started talking about it, and I actually have one slightly stupid question... Is there any way that if you took a pill to stop your period, it could help? Or does it not work like that? Again, I'm sure that you've looked at every solution possible, I'm just curious about it, and I wish you didn't have to go through it :'(
I wish you all the very best, you're an angel and you deserve the best xxx
Chllloe 777 Stopping periods can help actually! Some doctors will tell you to take your pill continuously, or place you on contraception that tends to stop periods altogether. However, Endometriosis is hormone dependent - the adhesions will grow as long as female hormones are present. So, one way to help stop this is to be put into a medically induced menopause. The side affects are awful, but some women would rather this than the hell of Endometriosis. So far there is no cure, but this is one of the only ‘treatments’ out there! It’s a really shitty disease to have😞
Oh my god this makes me so sad:( I really hope you’re okay!
Thank you for doing this!! ❤️
I think i have it, but here in Sweden, it is not spoken about, so not many doctors know about it. I have gone in to the hospital so many times, even in the night. But i get sent home because they cannot see anything. But without operation they cannot see, so i am soooo frustrated. Sorry if my english is bad...I want the operation, but it is very hard in Sweden..
So after you explained pain during ovulation, I am thinking I may have endometriosis. I never had painful periods(or cycles in general) and after I had my son I still didn’t, but I started having extreme pain during ovulation after I gave birth. It does feel similar to contractions or almost like a knife stabbing me as well and I can’t stand or walk. I’ve also bled clots multiple times and tissue has come out but I never thought much of it. I’m 3 years postpartum but nothing has changed so thank you for making this video because now I think I need to get checked out.
Keep courageous!!
Omg I wish and I will pray for u hope u feel better