Your Endometriosis stories

Here you will find many stories from other women who have Endometriosis. These stories can give courage to other women that they are not alone in their battle.

Even though there are many sad stories detailing how difficult and debilitating it is for many women when dealing with endometriosis, there are however MANY happy stories of women who had successful pregnancies.

Also, there are a number of inspirational personal stories that outline how these women have used diet or natural treatments to vastly improve their health, and in some cases has helped them to achieve healthy natural pregnancies. 

There is a lot to read here, but it is only be reading of real life experiences that you can gain a true insight into the day to day reality of living with this disease, and the various ways women have dealt with it.

Share your own endometriosis experiences

How has endometriosis affected your life? Tell your own story and share your own experiences

How long did it take for you to get diagnosed? How many times were you mis-diagnosed or ignored? Tell us your own experience

Share your symptoms - advise others of the range of endometriosis symptoms you have had to cope with. Other readers may be able to give you some advice

Share your pregnancy success - sharing with other women your own experience of being able to have children despite having endometriosis

Have you had a hysterectomy - share your personal experience or advice you have with other women

As of Jan 2012 ....

There are new interactive forms (links above) for you to tell your own story, and other readers can leave feedback or advice to your story, (you can choose to have an e-mail notification if someone adds advice to your story.) You are also able to leave your story anonymously if you wish. 

Your Stories - Page One

Below are your Endometriosis Stories from 2004 to 2011 

Your endometriosis stories - The stories start here - one page links onto the next one - there 43 pages of personal stories 

Stories of women from around the world who have Endometriosis.

July 2004

I am 29 years old, and was diagnosed with endometriosis almost two years ago. If it wouldn't of been for my husband, I never would of gone in. I went through the laparoscopy and 6 long months of lupron injections, I had a second surgery to make sure that it was all cleared up, and it was, My doctor then suggested I go on hormone therapy w/ a depo provera shot every three months. That failed I started bleeding again but it was not normal, sorta like old blood ranging in colour from brown to black.

At the appointment for my third shot I refused to take it, Leaving me the option to try a new pill called seasonal, This did work for a small period of time 3 weeks to be correct and then the bleeding started all over again. This has affected my entire life, not knowing from one day to another if the bleeding is going to be worse or not, not knowing if the pain and swelling is going to be there. My husband feels as bad, but yet our love life has suffered more than anything, sex can't even be considered w/out having bleeding so bad it is half way up my back. I feel like a science project gone wrong. If any one has gone through something similar I would really like to know. I feel as if my only option is a full and complete hysterectomy, and at 30 years of age it is a little scary. Sorry if these are not the type of stories we are supposed to share but I feel at a loss.... 

July 2004

I will try to be brief. I was first "diagnosed" with Dysmenorea" (I spell poorly, ya know) when I was aged 15. I ALWAYS had BAD, BAD periods...(like the cramps you get when you have loose bowels). As I got older, the cramps got worse. I just took tylenol.....or whatever anti-inflammatory the doc gave me...I, by some miracle, got pregnant after having my FIRST laparoscopy with D and C...(I was told at 18 I would never have children, probably...and was sexually active (stupidly) without ever being protected...never got pregnant until they "lasered" off the "implants" (or endometriosis).

I would have only about a year "remission" from the pain. I couldn't have sex without extreme pain (was called frigid by a now EX husband. )Sometimes I couldn't even walk. I was labelled as a person with a "shady" work history because I frequently called in sick because of my pain. I was told I was seeking attention..I was told I was only wanting drugs, (this before the "cure" for my pain became my addiction.) I was told a million things except WHY I was hurting and HOW we could stop it...I had horrible PMS....bloating, headaches, backaches, cravings for fatty, starchy name it...and then the pain...the clots..the heavy bleeding (I cannot sleep on my back, or on my stomach.)

I would bleed everywhere if I did...)By age 24, I was at my 3rd laparoscopy with D and C and lasering of my implants...the pain always returned. I got pregnant with my daughter after another surgery to clean out the endometriosis. I had also run into my first bout with HPV caused cervical cancer. What a age 30, I was a wreck..addicted to vicodin...seeing a chronic pain specialist...minus a left tubes gallbladder gone and now suffering intestinal infections that would shrivel me down 10 pounds by the time it was done with me....I have IBS...diverticulitis.... some kind of small intestinal "abnormality"..and all I can say is that I live a living hell.

I am having a sonogram tomorrow to find out what a mass is some quaky doc found (I hate doctors now). I am sure it will either be a "scar" or come up negative...another wasted test and the docs look at you like you are simply a "hysterical" female....I am sick on Neurontin and have now become vomitingly sick on most ALL narcotocs...the pain is endless and my life is wrapped up in my pain. I am not yet even 40 and can see where my life is going if I don't stop this disease. 

June 2004

I always had very painful periods, and have also had years of chronic fatigue. I always thought these symptoms were due to my digestion, which is very bad. Doctors have never found anything wrong with me, though I have been to ER three times, unable to move or almost be moved. After having everyone refer me to a psychiatrist, I was through with conventional methods.

Since I could not have a bowel movement without extremely high dosages of laxatives (causing more pain), and none of the natural medicines were making any difference I was advised to try taking enemas instead. I have learned to deal with the pain at my periods and other times by focus and breathing; and God has been good to get me through every time. A few days ago,

I realised that it is ridiculous to continue expecting the rest of my life to be as limited as the last six years have been. I want to be a super wife to my husband: I want to have and raise children for God's glory. I want to do the grocery shopping regularly. I want to go to church more often than I miss! I have realised that all of my symptoms, including my digestion, fit with endometriosis. The Laparoscopy to diagnose is so expensive that I can't afford to find out for sure, but I am ordering the endometriosis diet book, and I am absolutely committed to going through with it. I feel very hopeful that my body may, in time, recover completely; that in a few years I may be healthy.

A few years isn't much if at the end you can be whole, as many of you must understand better than I do. The reason I'm sharing my story is because, after reading all these other very heartbreaking stories, (and stories from another site which was utterly depressing because of the lack of any success, or even many times hope-- lack of alternative medicine as well), I am extremely grateful for God's providence in keeping me from doing anything other than naturally. Otherwise I would have a bag instead of a stomach, and have psychological drugs messing with my brain and body chemistry; and I believe my symptoms would be much more acute.

I am even grateful for the enemas, though I hope to be independent of them someday, because I think they have kept my body clean, which must have significantly helped me not to deteriorate to the point of emergency surgery. I hope everyone who reads this will try diet and natural remedies before resorting to things that have given so many women so much more pain, and haven't solved their problems-- that cut part of you out that you can't have back again when you realise that maybe, maybe you really can get well. 

United States 
May 2004

I had a cyst rupture on one of my ovaries when I was 16. they removed the aftermath, I'm left with one ovary. I've had one laparoscopy laser surgery to clean it up about 7 years ago. I'm 38 now, and took the pill on and off for 20 years. Here's a question I would like answered: can endometriosis go away when you get older? I've been off the pill for 2 years now. Haven't gotten pregnant, but I have regular periods, and no symptoms of endometriosis any longer. I'm worried about becoming pregnant, but it seems like the female system isn't working, since I haven't gotten preggers yet...anyone had a similar experience? 

Katrina Butler 
May 2004

I was diagnosed with Endometriosis about 3 years ago? One night I was in bed asleep when all of a sudden I woke up with this extreme pain, and I could hardly walk? The next day my boyfriend took me to the hospital where I was booked in to have a laparoscopy and that is when they found that I had endometriosis?

I was only 20 at the time when they said I had endometriosis. I suffered extreme painful periods as well as pain I would end up in hospital for at least 1 week? I have had 9 laparoscopies already? In 2001 I was booked in to have surgery in Sydney to get the endometriosis removed. I already have lost 3 children due to having endometriosis? And when I had the surgery in Sydney the doctor told me that it would not come back for at least 4 years?

But it was not exactly 12 months and the endometriosis had come back and now it is in the worst stage that they have ever seen and I have to go back to Sydney in the next couple of months to have it removed again? I only want it removed so I can have at least 1 baby. I have the endometriosis on my ovaries in my bowel, on my kidneys, and every where else you can get it? Well that is all I can think of for now? 

Rocio Heil 
United States 
May 2004

I started having pain in my teens, but everyone would tell me that it was normal. It continued to get worse over the years and finally at age 20 I was diagnosed with Endometriosis. Before I was diagnosed with Endometriosis I saw so many different doctors and they treated me like an idiot, one even suggested that it was all in my head. I was misdiagnosed at first with ulcerative colitis then IBS, but the medication they gave me didn't help me and I knew that it was something that had to do with my reproductive system.

I knew that there was something wrong because I couldn't handle the pain, especially during my cycle. I was missing work a lot, during my periods I couldn't even get up from bed; I would also bleed a whole lot. I have had two laparoscopies but the pain came back, then the doctor put in Lupron for six months, I took a five-month break and then re-started Lupron for another six months. So far Lupron has been what has worked for me; the side effects are awful but a lot better than the pain.

I am currently seeing a fertility doctor and I am on Clomid, so far no luck though. I had an artificial insemination last month but it didn't work. I'm not even ovulating according to my blood tests. I think I will try for a couple more months, I don't think I can handle the pain much longer. I am going to start the Endometriosis diet, hopefully that will help. I am willing to try anything because I am tired of being sick, I just want to live a normal life.

The hardest thing for me is that my family doesn't understand what I am going through. I feel comfort knowing that other people on this web site know exactly what it's like. I exercise every day and that seems to help me with the pain, I have also lost 50lbs. and that minimized the pain too. Maybe the Endometriosis diet will be the answer. 

May 2004

I am suffering from severe Endometriosis for several years. I have undergone nine unsuccessful surgeries. In Sept'03 I underwent a hernia surgery and after this operation the symptoms are scary. Like, uneasy feeling in the back and Renal area, feeling like worms moving around the body, bloating and fullness of the abdomen. I also feel like an un-easy feeling under the skin. Felt like something rolled and hit the left side of the abdomen.

It is sad that doctors in Bombay are not well versed with this kind of a problem and I have to go thru' hell, pain and discomfort. I would like to come to Canada for treatment but, I do not know anyone there and where will I stay in case of surgery. I need the right doctor, right decision and right treatment. Do your doctor's come to India? What will the procedures be to come to Canada. Looking forward to hearing from U soon. Thank U and God Bless. 

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All endometriosis stories pages:

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