Last month I told one of my Drs. that the only person who is treating me comprehensively is ME! They are consultants! They work for me! I do not exist to follow their rules and obey their dictates. I told her that I didn't mean it as disrespectful, but they don't have the whole picture and they never could even if they wanted to. Not in today's "Health-care System". They would do the same thing in my situation. I believe that I earned that Dr's respect by saying that to her. Bless her!
This video made my teary as I'm suffering from Endo pain for 6 years.. I wish people knew that this condition is not only pain but it emotionally drains you too and you always up and down on that mental level..... Some say its depression BUT it is not! Its the condition......... I hope ALL doctors are educated about this and can help women out there. I pray you all suffer less and less each day.. Jigs x
Finally, the blindfold has been lifted - THANK YOU, what an inspirational speech ... This will be the very foundation of my current mission. It's time to educate, be understood and heal. I take my hat off to all women (and men) going through the motions, stay strong and bless you all.
Try getting rid of chemicals at home like perfume or any air freshners... Go vegan Avoid gluten And try fasting for a day or 2 once in a while... You will heal... I was the worst case my older doctor has ever seen and this is how I healed...
@@Србомбоница86 oh I am sure you will enjoy it. It seems to be the best miracle cure also helps with Depression and not to mention… keeps the weight off. It is nice to start with small steps….I could never fast when I was younger. It was a real challenge for me. I am twice the age I look and think fasting keeps me young too. (I just turned 50) Yes… I am proud of my age…
I am a fellow sufferer great to hear popular voices speaking out. There needs to be more awareness in the UK. I had one head of gynae tell me I couldnt have it because i'd never had sex. It took 7 months which isnt too bad to finally get a diagnosis. I had never heard of this condition before i was in pain. I recently lost my sickness benefit (i am currently in 24/7 pain which makes working very difficult) this means that I have to look for work whilst not being properly able to do it.
I cant even stop crying enough to write this email. I have been suffering with horrible periods since I was 12 years old and I turn 40 next month. I have been told for years that I was making the pain up that periods are not that painful. I thank you Ms. Sarandon for allowing me to know that I am not alone in this. I felt like you were telling my story for me when you told yours. Hopefully I will get this figured out soon so that my life can begin. Thank you. Thank you. Thank you! XO
I am a relatively lucky sufferer, as not only my mother, but my grandmother have this disease and I've known that I would probably get it at some stage. Some day I want to be a doctor and spread awareness of this awful disease and also make sure the sufferes get the treatment they need. Good luck to all of you and I hope someday we are all pain free :)
Really? there's a debilitating, excruciatingly painful disease that affects all areas of life, causes infertility and for around 10% of all men that we haven't heard about? Well then it's an even worse issue because I really can't begin to imagine which one you might be referring to. The first step to shortening the time of diagnosis is to recognize the reasons that cause this delay, and one of them is that it's a women's health disease!!
Thank you so much Susan. I feel like you ripped open my heart and put words to my pain. I suffered and suffered from the age of 11 until I was 30. It wasn't until I spoke to other older women about my infertility that I even heard of Endometriosis. I thought ALL women had painful periods. Doctors won't mention Endometriosis, it is up to the patients to bring it up, and that shouldn't be the case.
Thank you Susan. I have been suffering for years. I had a Hysterectomy in Feb 2013 After Lupron and two earlier surgeries failed. Little did I know a Hysterectomy was not the answer because it's back and I don't know where to turn from here.
Yesss Susan I have stage 3 Endo they said the same to me . You just gave me hope. Glory to God most High 🙌🙏 anyone watching please pray for me as I will do the same for you all
I wish people were more educated about this because they can be ignorant (adults, teachers, doctors) to my pain and struggles. I hope the world can find answers soon so girls don't experience what I go through. thankfully I'm still young and in high school.
I actually had a doctor tell me: "All women have to deal with these issues, you're just expecting perfection". Ugh. Not all women bleed so much they can't even leave the bathroom sometimes for hours and have to wear an overnight flow pad plus depends on top of that just to go to the store for half an hour without a bloody accident (if I'm lucky), or have to sleep on two folded towels because they regularly wake up in a puddle of blood, or have a hemoglobin level of only 6 due to iron deficiency from bleeding so much, or have so much pain they cannot function for days at a time! Some of us do- but it is not normal!!
+Courtney McFarland I can relate to you completely! I wrote my story up top, but I also have to wear depends to go to sleep, and sometimes still bleed through! I am also anemic. It's awful. My entire life has been effected by this disease, and others that I have. it is a daily struggle. How the hell are you supposed to hold down a job when you are in so much pain you can't get out of bed!?? I haven't been able to work. I don't know what I'm going to do. Please read my comment above, it goes into more detail. Or, you can click on this link and read more. www.gofundme.com/fundkrista We need to stick together. If this was a disease that effected men, they would be working on finding ways to cure it, but it's barely recognized!! It's so wrong.
Today I was diagnosed with Endometriosis. I don't know how I should feel about this disease or what to do at this point. Any information about this disease or how to lessen the pain will be greatly appreciated. Much Love~ N.S.
It's very difficult to say as every woman is different. My doctors have tried me on everything possible and the only thing that really truly worked without debilitating side effects like feeling like you have arthritis throughout your whole body was Lupron. But it's $300 per month or $900 every 3. Birth control pills staved off probably about 1/2 the pain but it was still there even without my period. My doctor however still has to go in probably about every 6-9 months to clean out the endometriosis because of how severe I have it. Best bet for you is to talk to a gynecologist about possible treatments and what's best for you.
Thinking back on it all now, I have to admit that it wasn't just my Dr's who minimized this. It was me. Because I had two different kinds of pain, and I didn't see how they were related until I got a smart-phone and started keeping a pain-diary on it, I was the one who read about endo and decided that the list of symptoms didn't sound right. And I was the one who decided that it must "JUST" be dysmen. "THAT'S ALL". And because I minimized it, so did my family, coworkers and management, etc.
me: my grandmother, maybe my Mom, maybe my sister , my 3 nieces..all were born with this disease. I must have been in my 30's when I was finally diagnosed. Thank God I finally got a dx.; many many women do not. I could not get and maintain a pregnancy, I suffered in horrible despair all my life, until menopause. Please educate yourselves, your families,your boyfriends, sons and husbands and most of all, your doctors ! Why do doctors still think removing the uterus would help? it is NOT in it
Ok. I´m totally agree with Susan, as a man patient suffering another chronic pain disease and as a gynecologist studying endometrioisis disease, precisaly because I believe there are inmunologic disorder´s, both disease arthritis and endometriosis and we ´ve found new answers and treatments for helping to treat endometriosis.
@Anon girl - some of us don't have the luxury of simply relying on the simple things like mild analgesics & heading pads. I've actually had a few laparoscopies, last being Dec 2013. My last one prior to that was 6 years ago. I was always told I 'only' had a few small lesions just in nasty spots. Over the last few years I was continuously complaining to my Dr about worsening pain and bowl pain & issues, and was subsequently diagnosed with IBS. This was not to be the case. My lap in 2013 showed obliteration of POD, both fallopian tubes completely blocked & attached to my uterus, 1 also attached to my bowel, & a large lesion between my rectum & uterus (hence the bowel issues), that requires colorectal surgery for a resection. So, as much as I agree that we shouldn't have to be put through shitty procedures & take medication (which may I add does nothing for me) & am really dreading the upcoming colorectal surgery...I am thankful that laparoscopic procedures are available so I can hopefully get some relief from the CONSTANT agonizing pain I endure.
I am so mad because I went un diagnosed for 11 years, doctors thought something was wrong with me when i kept telling the,m i was having all these symtoms and no one listened. Now I am 29 and want to start a family only to find out that hey i have this terrible terrible disease, So its has been 4 weeks since I have done the laproscopic surgery and I am back to where I started:(. I am frustrated but still i will fight this disease and not stop untill i have a family.
I've been told most of my life that my pain is just normal period cramps and that I have to suck it up til im in the fifties when it's over. I went in to the hospital as i had constant cramps for over 4 months and they told me that it's possible that I am dealing with endometeriosis. I'm glad that I got to know about it as soon as possible (I'm 18) but I'm also confused and so frustrated about the fact that nobody knows how to cure it and treat it correctly. They just gave me birth control pills and said that i might have to face an operation in the future. :/
I've been on birth control pills since I was 15 but started having major issues around when I turned 30... 3 years later diagnosed with Adenomyosis (similar to endometriosis) and guess what they told me the treatment for someone my age is... Birth control pills. Um... I'm already taking what's supposed to fix this so how did I get it in the first place?! Been a year and only seems worse if anything. Seeing a new Gyno in a couple days, hopefully will be more knowledgeable and sympathetic than my last one.
+Mandelen Tørdal I ended up getting a hysterectomy actually. Nothing else helped and I was basically bleeding to death- had almost no iron and hemoglobin left. Couldn't take the pain much longer either- in fact I expected there to be pain after the surgery- there was a little but no more than what some Advil could take care of, and was nothing compared to my pain BEFORE the surgery! All healed up now, and so happy I'll never have a period ever again! Feeling good & healthy again finally, thanks.
IT'S OK. WE ALL HAVE TO FIND A WAY TO DEAL WITH THIS AND WHEN YOU DON'T HAVE CHILDREN YOU WILL TRY ANYTHING JUST TO HAVE THAT CHANCE. IN MY CASE I LOST THE BATTLE EVEN WITH THE HYSTER. ENDOMETRIOSIS DOES NOT GO AWAY WITH A HYSTERECTOMY. SO ANY DR THAT SAYS IT IS THE END TO THIS HORROR THEY ARE WRONG. I STILL LIVE WITH ENDO PAINS EVERY DAY. THE PAIN HAS BECOME A PART OF ME BUT I REFUSE TO LET IT TAKE ME OVER I WILL FIGHT THIS PAIN TO THE DAY I DIE, IT WILL NEVER OWN ME. KIMMIE
I feel slightly ashamed, in a typical English way... that Susan Sarandon's diagnosis and treatment in England was so shoddy. Having said that.... having been to the doctors in England for over 20 years complaining of various ailments and NOT being diagnosed.... I think she was extremely lucky to hit on a doctor in the UK who knew something about it! We so desperately need more doctors in the UK to be taught about Endometrioses and to be more empathetic to women in general.... I have been misdiagnosed for over 20 years, suffered with appalling IBS, been put on tranquilisers in my 20s, been called a hypochondriac, referred to a psychologist, had to see a psychiatrist at the order of my doctor, following the birth of my second child for fear of losing both my children, suffered humiliating investigations on numerous occasions (I always made light of this, as every time I complained of abdominal pain and bleeding, they chose to do a colonoscopy - so much so I stopped going to the doctor!) an horrendous lack of care and a large dose of patronising comments, huge amounts of progesterone which did not curtail the bleeding - simply loosened all my ligaments sufficient that I now have a dysfunctional pelvis, suffered an early menopause at 40 (when I was eventually diagnosed) as my ovaries were covered in chocolate cysts, all resulting in having to have a hysterectomy and bilateral oophorectomy (both ovaries gone) at the age of 44. Still at the age of 53.... I am sort of beginning to feel normal.... whatever that may be! I did in the end, and after much research find a Surgeon who was informed and sympathetic and was able to perform two lots of excision, but sadly it was too late. My daughter at the age of 16 started showing signs, the same surgeon performed her excision - and has recommended that she takes the pill for 3 months at a time to reduce the chances of her bleeding and the endometrium escaping. I have also referred a friend in her 30s, who was also diagnosed, underwent excision and has not had a recurrence. We MUST talk about this.... We are too good at suffering in silence in this country - sod the 'stiff upper lip' - shout from the rooftops! Anyone in the UK in the London area who wants the name of a good surgeon - let me know!
That is one of the biggest generalizations I've heard in a while. Latvia, Sweden, Greece just as different as Arkansas, Cambridge, MA, and Seattle. Yes there are different factors (and cultural factors are not nothing) but the world really could do a lot to change perceptions of women's health. Broad generalizations dont help. I am American. I had my first period at 12.5 and just learned to live with pain. I had a good doctor but I never wanted to open up. I have learned this feeling is more universal than just American I am saying this not to defend America. There is a lot to be better but I want to point out a core truth I have learned traveling the world with my experience
I recommend that anyone with endometriosis join the Facebook group 'Nancy's Nook'. There is a wealth of info and material about endo, including the latest findings and treatment breakdowns - and a forum of women around the world who have had successful excision surgeries and will recommend specific surgeons in your area. They collated a list of 'Nook approved' surgeons that you can read. My original surgeon never even told me that excision surgery was an option, I'd never heard of it until I stumbled upon the Nook on Facebook. Educating ourselves and finding the best experts to treat you is our right.
Rac Ray I wouldn't recommend that group to anyone. I left that group within a week after joining due to Nancy herself being extremely rude and treating group members like complete shit! There are far better endometriosis groups on fb
2... I do have more than 1 problem. And while I don't think that undiagnosed endo "caused" the others, I def see how they all feed each other. I read a report somewhere about how monthly pain can change the brain-structures in EXACTLY the same way that chronic pain like sciatica does. So, when it comes to pain management, please educate yourself & your Dr. about ALL the same issues that chronic pain sufferers have. Tolerance vs. threshold, narcotics or no narcotics, attitude, expectations...
Lupron may not be the the best med out there but I was in so much pain I was willing to try anything. The lupron worked for 3 months then the pain came back double time and ended in a Hysterectomy. I have no children and would try anything to avoid a full Hysterectomy. So yes as harsh as Lupron is I did go with the treatment I was suffering so bad and dredded the big H. I DID NOT ASK FOR THIS ILLNESS JUST TRYING A WAY TO LIVE WITH IT AND THE LUPRON COULD HAVE BEEN MY CHANCE AT HAVING CHILDREN
Rule #1 that I learned as a child: NEVER LIE TO YOUR DOCTOR! EVAR! Go all the way to TMI! Tell them how it's effecting EVERY aspect of your life! In detail! Tell them what you've learned this month about the disorder or pain or resources. Tell them how you've taken steps to manage it in other ways besides throwing drugs at it. Tell them about your stressors. If a lifestyle change (such as avoiding chocolate) is causing enuf stress that the benefit is lost, don't use it and don't apologize!
Wow. Effing, wow. There should be a way to report ignorance like that in the medical profession, and not necessarily sue them, but have them ordered to go back to school or sustain a hefty fine. That's just... wow.
I was told all my life period pain is normal. Every girl I meet who tells me she has painful periods. I tell her it’s not normal. If you are a mom with a daughter in pain when she starts her period beat down every docs door till they treat!!! Or go to the ER everyday if you have too. Susan is not wrong you will never get treated unless you fight and educate your docs. Most docs don’t know not even those with a speciality in gynecology. It’s an absolute disgrace. It’s so hard to fight when you are in so much pain. Get a pelvic steroid nerve block to ease the pain so you can get enough strength to get the treatment/surgery. Too many lives are taken and as Susan said, for too long we as women have been left to suffer. It’s women’s suffrage all over again except it’s your uterus/period holding you down. The only good to come out of this, is to help other girls. Don’t give up and never ever say it’s your fault or you asked for it. No one and I mean no one, no matter what they have done deserves this....
Does your HMO assign you a male Dr. who gives you "The Look"? Don't even waste your time or his. Get a different Dr. Attracting negative attention because you keep switching Dr's? Download and use a phone app made for nurses that keeps track of when and how much medication you take and email the report to them every month, whether they want it or not.
Honestly, the diagnosis and treatments seem almost as bad as the disease. I will never have an invasive surgery (laparoscopy) just to diagnose a disease, especially when the treatments are so barbaric and often ineffective. Surgery, masculinizing hormones like danazol or something that throws my body into early menopause like Lupron, which shall I choose? None of the above, thanks. Sorry if this sounds negative, but it's just my perception. We need better treatments for endo and related "lady" diseases. Until then, I'll stay doped up on Ultram/ibuprofen and attached to my heating pad, being thankful I don't want kids. Yay womanhood!
Anon Girl A heating pad burned my tissue. I use capsicum pain patches. They only take a little of the edge off. I pray more research is done to prevent this terribly disabling female health problem. Thank you.
Last month I told one of my Drs. that the only person who is treating me comprehensively is ME! They are consultants! They work for me! I do not exist to follow their rules and obey their dictates. I told her that I didn't mean it as disrespectful, but they don't have the whole picture and they never could even if they wanted to. Not in today's "Health-care System". They would do the same thing in my situation.
I believe that I earned that Dr's respect by saying that to her. Bless her!
This video made my teary as I'm suffering from Endo pain for 6 years.. I wish people knew that this condition is not only pain but it emotionally drains you too and you always up and down on that mental level..... Some say its depression BUT it is not! Its the condition......... I hope ALL doctors are educated about this and can help women out there. I pray you all suffer less and less each day.. Jigs x
Finally, the blindfold has been lifted - THANK YOU, what an inspirational speech ... This will be the very foundation of my current mission. It's time to educate, be understood and heal. I take my hat off to all women (and men) going through the motions, stay strong and bless you all.
Whenever I get really down about my endo, I watch this and it helps everytime
Try getting rid of chemicals at home like perfume or any air freshners...
Go vegan
Avoid gluten
And try fasting for a day or 2 once in a while...
You will heal...
I was the worst case my older doctor has ever seen and this is how I healed...
@@SaritWorld I want to fast twice a week at least
@@Србомбоница86 oh I am sure you will enjoy it. It seems to be the best miracle cure also helps with Depression and not to mention… keeps the weight off. It is nice to start with small steps….I could never fast when I was younger. It was a real challenge for me. I am twice the age I look and think fasting keeps me young too. (I just turned 50) Yes… I am proud of my age…
I am a fellow sufferer great to hear popular voices speaking out. There needs to be more awareness in the UK. I had one head of gynae tell me I couldnt have it because i'd never had sex. It took 7 months which isnt too bad to finally get a diagnosis. I had never heard of this condition before i was in pain. I recently lost my sickness benefit (i am currently in 24/7 pain which makes working very difficult) this means that I have to look for work whilst not being properly able to do it.
I cant even stop crying enough to write this email. I have been suffering with horrible periods since I was 12 years old and I turn 40 next month. I have been told for years that I was making the pain up that periods are not that painful. I thank you Ms. Sarandon for allowing me to know that I am not alone in this. I felt like you were telling my story for me when you told yours. Hopefully I will get this figured out soon so that my life can begin. Thank you. Thank you. Thank you! XO
I am a relatively lucky sufferer, as not only my mother, but my grandmother have this disease and I've known that I would probably get it at some stage. Some day I want to be a doctor and spread awareness of this awful disease and also make sure the sufferes get the treatment they need. Good luck to all of you and I hope someday we are all pain free :)
If men had this disease there would have been a cure.
DAMN RIGHT.
we have to find the cure for all the women suffering!!we dont need a man to discover it or find a way to cure it, we are smart enough!!
No there wouldn't. There are plenty of male conditions in the world that have no cure thanks to big pharma making a profit off of the sick.
Really? there's a debilitating, excruciatingly painful disease that affects all areas of life, causes infertility and for around 10% of all men that we haven't heard about? Well then it's an even worse issue because I really can't begin to imagine which one you might be referring to. The first step to shortening the time of diagnosis is to recognize the reasons that cause this delay, and one of them is that it's a women's health disease!!
Hahaha that's what I was thinking
Thank you so much Susan. I feel like you ripped open my heart and put words to my pain. I suffered and suffered from the age of 11 until I was 30. It wasn't until I spoke to other older women about my infertility that I even heard of Endometriosis. I thought ALL women had painful periods. Doctors won't mention Endometriosis, it is up to the patients to bring it up, and that shouldn't be the case.
Thank you Susan. I have been suffering for years. I had a Hysterectomy in Feb 2013 After Lupron and two earlier surgeries failed. Little did I know a Hysterectomy was not the answer because it's back and I don't know where to turn from here.
Yesss Susan I have stage 3 Endo they said the same to me . You just gave me hope. Glory to God most High 🙌🙏 anyone watching please pray for me as I will do the same for you all
Maria More thank you so much. God bless you 🙏
Maria More yes he did. Amen. I agree 😊
I am having the really bad 3 days of pain at the moment. THANK YOU :)
I wish people were more educated about this because they can be ignorant (adults, teachers, doctors) to my pain and struggles. I hope the world can find answers soon so girls don't experience what I go through. thankfully I'm still young and in high school.
i was born with endometriosis...its an infertility condition you are born with - thank God. ..what a blessing!
From France : THANK YOU Susan, we love u !
I actually had a doctor tell me: "All women have to deal with these issues, you're just expecting perfection". Ugh. Not all women bleed so much they can't even leave the bathroom sometimes for hours and have to wear an overnight flow pad plus depends on top of that just to go to the store for half an hour without a bloody accident (if I'm lucky), or have to sleep on two folded towels because they regularly wake up in a puddle of blood, or have a hemoglobin level of only 6 due to iron deficiency from bleeding so much, or have so much pain they cannot function for days at a time! Some of us do- but it is not normal!!
+Courtney McFarland I can relate to you completely! I wrote my story up top, but I also have to wear depends to go to sleep, and sometimes still bleed through! I am also anemic. It's awful. My entire life has been effected by this disease, and others that I have. it is a daily struggle. How the hell are you supposed to hold down a job when you are in so much pain you can't get out of bed!?? I haven't been able to work. I don't know what I'm going to do. Please read my comment above, it goes into more detail. Or, you can click on this link and read more. www.gofundme.com/fundkrista We need to stick together. If this was a disease that effected men, they would be working on finding ways to cure it, but it's barely recognized!! It's so wrong.
So many men hate us. It's what I call social engineering.
The psychopaths that are in power fear our unity.
Today I was diagnosed with Endometriosis. I don't know how I should feel about this disease or what to do at this point. Any information about this disease or how to lessen the pain will be greatly appreciated. Much Love~ N.S.
It's very difficult to say as every woman is different. My doctors have tried me on everything possible and the only thing that really truly worked without debilitating side effects like feeling like you have arthritis throughout your whole body was Lupron. But it's $300 per month or $900 every 3. Birth control pills staved off probably about 1/2 the pain but it was still there even without my period.
My doctor however still has to go in probably about every 6-9 months to clean out the endometriosis because of how severe I have it.
Best bet for you is to talk to a gynecologist about possible treatments and what's best for you.
Thinking back on it all now, I have to admit that it wasn't just my Dr's who minimized this. It was me. Because I had two different kinds of pain, and I didn't see how they were related until I got a smart-phone and started keeping a pain-diary on it, I was the one who read about endo and decided that the list of symptoms didn't sound right. And I was the one who decided that it must "JUST" be dysmen. "THAT'S ALL". And because I minimized it, so did my family, coworkers and management, etc.
This is very beautiful, brings hope.
me: my grandmother, maybe my Mom, maybe my sister , my 3 nieces..all were born with this disease. I must have been in my 30's when I was finally diagnosed. Thank God I finally got a dx.; many many women do not. I could not get and maintain a pregnancy, I suffered in horrible despair all my life, until menopause. Please educate yourselves, your families,your boyfriends, sons and husbands and most of all, your doctors ! Why do doctors still think removing the uterus would help? it is NOT in it
Ok. I´m totally agree with Susan, as a man patient suffering another chronic pain disease and as a gynecologist studying endometrioisis disease, precisaly because I believe there are inmunologic disorder´s, both disease arthritis and endometriosis and we ´ve found new answers and treatments for helping to treat endometriosis.
@Anon girl - some of us don't have the luxury of simply relying on the simple things like mild analgesics & heading pads.
I've actually had a few laparoscopies, last being Dec 2013. My last one prior to that was 6 years ago. I was always told I 'only' had a few small lesions just in nasty spots. Over the last few years I was continuously complaining to my Dr about worsening pain and bowl pain & issues, and was subsequently diagnosed with IBS. This was not to be the case.
My lap in 2013 showed obliteration of POD, both fallopian tubes completely blocked & attached to my uterus, 1 also attached to my bowel, & a large lesion between my rectum & uterus (hence the bowel issues), that requires colorectal surgery for a resection.
So, as much as I agree that we shouldn't have to be put through shitty procedures & take medication (which may I add does nothing for me) & am really dreading the upcoming colorectal surgery...I am thankful that laparoscopic procedures are available so I can hopefully get some relief from the CONSTANT agonizing pain I endure.
I am so mad because I went un diagnosed for 11 years, doctors thought something was wrong with me when i kept telling the,m i was having all these symtoms and no one listened. Now I am 29 and want to start a family only to find out that hey i have this terrible terrible disease, So its has been 4 weeks since I have done the laproscopic surgery and I am back to where I started:(. I am frustrated but still i will fight this disease and not stop untill i have a family.
I've been told most of my life that my pain is just normal period cramps and that I have to suck it up til im in the fifties when it's over. I went in to the hospital as i had constant cramps for over 4 months and they told me that it's possible that I am dealing with endometeriosis. I'm glad that I got to know about it as soon as possible (I'm 18) but I'm also confused and so frustrated about the fact that nobody knows how to cure it and treat it correctly. They just gave me birth control pills and said that i might have to face an operation in the future. :/
I've been on birth control pills since I was 15 but started having major issues around when I turned 30... 3 years later diagnosed with Adenomyosis (similar to endometriosis) and guess what they told me the treatment for someone my age is... Birth control pills. Um... I'm already taking what's supposed to fix this so how did I get it in the first place?! Been a year and only seems worse if anything. Seeing a new Gyno in a couple days, hopefully will be more knowledgeable and sympathetic than my last one.
+Mandelen Tørdal I ended up getting a hysterectomy actually. Nothing else helped and I was basically bleeding to death- had almost no iron and hemoglobin left. Couldn't take the pain much longer either- in fact I expected there to be pain after the surgery- there was a little but no more than what some Advil could take care of, and was nothing compared to my pain BEFORE the surgery! All healed up now, and so happy I'll never have a period ever again! Feeling good & healthy again finally, thanks.
IT'S OK. WE ALL HAVE TO FIND A WAY TO DEAL WITH THIS AND WHEN YOU DON'T HAVE CHILDREN YOU WILL TRY ANYTHING JUST TO HAVE THAT CHANCE. IN MY CASE I LOST THE BATTLE EVEN WITH THE HYSTER. ENDOMETRIOSIS DOES NOT GO AWAY WITH A HYSTERECTOMY. SO ANY DR THAT SAYS IT IS THE END TO THIS HORROR THEY ARE WRONG.
I STILL LIVE WITH ENDO PAINS EVERY DAY. THE PAIN HAS BECOME A PART OF ME BUT I REFUSE TO LET IT TAKE ME OVER I WILL FIGHT THIS PAIN TO THE DAY I DIE, IT WILL NEVER OWN ME.
KIMMIE
I'm so sorry, Lovey.
I feel slightly ashamed, in a typical English way... that Susan Sarandon's diagnosis and treatment in England was so shoddy. Having said that.... having been to the doctors in England for over 20 years complaining of various ailments and NOT being diagnosed.... I think she was extremely lucky to hit on a doctor in the UK who knew something about it! We so desperately need more doctors in the UK to be taught about Endometrioses and to be more empathetic to women in general.... I have been misdiagnosed for over 20 years, suffered with appalling IBS, been put on tranquilisers in my 20s, been called a hypochondriac, referred to a psychologist, had to see a psychiatrist at the order of my doctor, following the birth of my second child for fear of losing both my children, suffered humiliating investigations on numerous occasions (I always made light of this, as every time I complained of abdominal pain and bleeding, they chose to do a colonoscopy - so much so I stopped going to the doctor!) an horrendous lack of care and a large dose of patronising comments, huge amounts of progesterone which did not curtail the bleeding - simply loosened all my ligaments sufficient that I now have a dysfunctional pelvis, suffered an early menopause at 40 (when I was eventually diagnosed) as my ovaries were covered in chocolate cysts, all resulting in having to have a hysterectomy and bilateral oophorectomy (both ovaries gone) at the age of 44. Still at the age of 53.... I am sort of beginning to feel normal.... whatever that may be! I did in the end, and after much research find a Surgeon who was informed and sympathetic and was able to perform two lots of excision, but sadly it was too late. My daughter at the age of 16 started showing signs, the same surgeon performed her excision - and has recommended that she takes the pill for 3 months at a time to reduce the chances of her bleeding and the endometrium escaping. I have also referred a friend in her 30s, who was also diagnosed, underwent excision and has not had a recurrence. We MUST talk about this.... We are too good at suffering in silence in this country - sod the 'stiff upper lip' - shout from the rooftops! Anyone in the UK in the London area who wants the name of a good surgeon - let me know!
Hi nina,
Can you recommend a good surgeon please.
Many thanks
Shaheen
@@shaheenshah1959 Mr Malcom Padwick works out of North West London Hospitals
Bless you!
Europe is so far ahead of America with endometriosis treatments and awareness.
That is one of the biggest generalizations I've heard in a while. Latvia, Sweden, Greece just as different as Arkansas, Cambridge, MA, and Seattle.
Yes there are different factors (and cultural factors are not nothing) but the world really could do a lot to change perceptions of women's health. Broad generalizations dont help.
I am American. I had my first period at 12.5 and just learned to live with pain. I had a good doctor but I never wanted to open up. I have learned this feeling is more universal than just American
I am saying this not to defend America. There is a lot to be better but I want to point out a core truth I have learned traveling the world with my experience
Is there a video of Padma speaking about the food??
I recommend that anyone with endometriosis join the Facebook group 'Nancy's Nook'. There is a wealth of info and material about endo, including the latest findings and treatment breakdowns - and a forum of women around the world who have had successful excision surgeries and will recommend specific surgeons in your area. They collated a list of 'Nook approved' surgeons that you can read. My original surgeon never even told me that excision surgery was an option, I'd never heard of it until I stumbled upon the Nook on Facebook. Educating ourselves and finding the best experts to treat you is our right.
Rachael Rayment thank you for the info :)
Rac Ray I wouldn't recommend that group to anyone. I left that group within a week after joining due to Nancy herself being extremely rude and treating group members like complete shit! There are far better endometriosis groups on fb
Carrie Nuon I am there and it seems very informative and helpful
2...
I do have more than 1 problem. And while I don't think that undiagnosed endo "caused" the others, I def see how they all feed each other. I read a report somewhere about how monthly pain can change the brain-structures in EXACTLY the same way that chronic pain like sciatica does. So, when it comes to pain management, please educate yourself & your Dr. about ALL the same issues that chronic pain sufferers have. Tolerance vs. threshold, narcotics or no narcotics, attitude, expectations...
Lupron may not be the the best med out there but I was in so much pain I was willing to try anything. The lupron worked for 3 months then the pain came back double time and ended in a Hysterectomy. I have no children and would try anything to avoid a full Hysterectomy. So yes as harsh as Lupron is I did go with the treatment I was suffering so bad and dredded the big H.
I DID NOT ASK FOR THIS ILLNESS JUST TRYING A WAY TO LIVE WITH IT AND THE LUPRON COULD HAVE BEEN MY CHANCE AT HAVING CHILDREN
please fix the title the name of the disease is Endometriosis
Rule #1 that I learned as a child:
NEVER LIE TO YOUR DOCTOR! EVAR!
Go all the way to TMI! Tell them how it's effecting EVERY aspect of your life! In detail! Tell them what you've learned this month about the disorder or pain or resources. Tell them how you've taken steps to manage it in other ways besides throwing drugs at it. Tell them about your stressors. If a lifestyle change (such as avoiding chocolate) is causing enuf stress that the benefit is lost, don't use it and don't apologize!
I wonder if I have this. They said its Adenomyosis but I have all these symptoms and my mom had endometriosis at my age...
Adenomyosis has very similar symptoms to endometriosis
+pinkangel729 after hysterectomy & analysis it turned out to be adenomyosis plus multiple large fibroids, one of them pedunculated.
Courtney McFarland you can very well have both like myself
Wow.
Effing, wow.
There should be a way to report ignorance like that in the medical profession, and not necessarily sue them, but have them ordered to go back to school or sustain a hefty fine. That's just...
wow.
I was told all my life period pain is normal. Every girl I meet who tells me she has painful periods. I tell her it’s not normal. If you are a mom with a daughter in pain when she starts her period beat down every docs door till they treat!!! Or go to the ER everyday if you have too. Susan is not wrong you will never get treated unless you fight and educate your docs. Most docs don’t know not even those with a speciality in gynecology. It’s an absolute disgrace. It’s so hard to fight when you are in so much pain. Get a pelvic steroid nerve block to ease the pain so you can get enough strength to get the treatment/surgery. Too many lives are taken and as Susan said, for too long we as women have been left to suffer. It’s women’s suffrage all over again except it’s your uterus/period holding you down. The only good to come out of this, is to help other girls. Don’t give up and never ever say it’s your fault or you asked for it. No one and I mean no one, no matter what they have done deserves this....
Period pains are not normal 👌
Does your HMO assign you a male Dr. who gives you "The Look"? Don't even waste your time or his. Get a different Dr.
Attracting negative attention because you keep switching Dr's? Download and use a phone app made for nurses that keeps track of when and how much medication you take and email the report to them every month, whether they want it or not.
Honestly, the diagnosis and treatments seem almost as bad as the disease. I will never have an invasive surgery (laparoscopy) just to diagnose a disease, especially when the treatments are so barbaric and often ineffective. Surgery, masculinizing hormones like danazol or something that throws my body into early menopause like Lupron, which shall I choose? None of the above, thanks.
Sorry if this sounds negative, but it's just my perception. We need better treatments for endo and related "lady" diseases. Until then, I'll stay doped up on Ultram/ibuprofen and attached to my heating pad, being thankful I don't want kids.
Yay womanhood!
Anon Girl A heating pad burned my tissue. I use capsicum pain patches. They only take a little of the edge off. I pray more research is done to prevent this terribly disabling female health problem. Thank you.
yourc