Endometriosis story

  These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.

All these symptoms were endometriosis

by Anonymous

Because of endometriosis I have gone through so many procedures and surgeries, too numerous to list here, but the end result is it is all endometriosis :( stage IV.

I nodded my head as I read this list as 75% of it is me. I suffered from the very heavy periods early, then pain, an enlarged uterus, which resulted in a partial hysterectomy for adenomyosis (endometriosis that is inside the uterus which layers and causes the uterus to enlarge). At that time I did not realize that is what I had, just that the gyn definitely was suspecting it.

But the doctors tell me it is a disease of the ovaries, and so since I still have my ovaries, then I still am feeding the endometriosis to grow ;(. Please add to the list locations such as the abdominal wall especially in those women who have had a c-section.

In my case, the doctors believe during my c-section, the endo cells settled into my scar and developed a tumor which was very painful. I went through a very difficult mis-diagnosis with biopsies and a huge abdominal resection, because the pathology was incorrect. I only found this out post surgery.

It was a nightmare to say the least, including a huge reconstruction as well ( pig biologics/ new belly button). The scar did heal very well though.

Now a year post abdominal resection, I have developed rectal-vaginal endometriosis symptoms including bleeding from vaginal area and rectal area simultaneously, because the scar tissue in the septum has fused these together :(, and this is creating other issues such as faecal matter in the front as well.

My GP thought this was a fistula, but it is the rectal-vaginal endometriosis. They are now recommending removal of ovaries and cervix and tell me I have an increased risk of ovarian cancer, if I go into menopause with them. This terrifies me as my grandmother died from ovarian cancer at an elderly age.

It is hard to have faith in the medical profession on this issue, because it is so poorly understood. And having that huge misdiagnosis was disconcerting to say the least. I have had so many abdominal surgeries (7 since 2004) that I just really do not want to have another one due to scar tissue risk and recovery time, not to mention instant menopause and HRT. I am wishing I had never had the first cut, but then I know some of it could not be avoided ( aka c-section)

I am very skeptical of homeopathic treatments for this, but I am willing to try any safe alternatives to alleviating symptoms which include all of the above and severe lower back pain, bleeding (post hysterectomy), bloating, gas, pelvic pressure (when standing), hip pain, leg pain, urinary tract issues (I have had urodynamics testing) - I also have developed crazy sinus issues, and I am wondering if this is related somehow as well?

I really had no idea that someone in their 30's after children could develop this and be so sick from it.

This disease has slowed me and pulled me down. Just when I start to feel some better and get going again, it gets worse. My family has been supportive, but I mean how much more can we all take? Even I am tired of it, and the last thing I want to do is put them through another possibly unnecessary surgery.

The injections do not seem to fit my case either as I do not need to preserve fertility, and I am terrified of the side effects. The last thing I need is an extra 30 lbs :). I did recently go on an anti-depressant to help. I just really want my life back, as Endometriosis has stolen my 30's. I keep thinking maybe if I do get the complete hysterectomy, maybe my 40's will be awesome with rebounding energy! - however from some of the stories here, I realize that that may not be the answer after all. What should I do?


Name: Girl

Title: Need advice

I am an 18 year old female, for the past 6 months I've had pelvic pain and fatigue. My periods have always been heavy and extremely painful (dysmenorreah). I have always complained about my right ovary and leg because I always get period cramps there. Fast-forward many years later and many long painful periods and I was at the emergemcy room, they saw a blood cyst on my left ovary and pelvic liquid.

Sex is painful and I bleed a lot most of the time.
I am too tired to function most days. Doctors are confused and they just focus on that cyst, but what about the other months ?

I have thrown up many times now as well. And if my cyst is on the left why is most of my pain on my right ovary.

It feels like I want to scratch, sometimes it feels lke a knife. Wine amd caffeine makes it worse, I felt like fainting!
Help ?

Name: Anonymous

Title: Post hysterectomy

I am 44 and had an ovarian cyst growing on left ovary. This was removed along with left ovary and fallopian tube. Also apppendix had an abcess growing on it so this was removed.

18 months later a scan showed another cyst growing on right ovary. Doctor recommended a full hysterectomy. I have 3 children but was horrified at this. Anyway I had it done 18 months ago..

Before both op's not once did the doctor mention the word endometriosis. Only when i went for my six week post op visit did a different doctor say it was endo. With a chance it could come back!! If I had known this I would not have had the full hysterectomy.

I sometimes feel like I am in a living hell. My personality has been affected and I have no energy for anything.

Now I am having problems on bowel movement and a dull ache in my back. This I think is the return of the deadly endometriosis.

Happy days!!!

Name: Anonymous

Title: To be contd. to @ I can relate

Still I was encouraged and shocked! -- and I almost wonder if he did something to make me feel better. I know that sounds bizarre, but since the colonoscopy I have felt somewhat better. I haven't had any abnormal bleeding since then.

That is relative as I don't know what normal is anymore as I'm sure you do not either. I know the further out I am from the abdominal resection, the better I will feel energy wise. That is why I do not want more surgery, and I am so sorry you are headed for more. I'm terrified of getting a hernia though from it all, so I probably stay too guarded.

I am thinking right now that there is no way I am going to go under the knife again any time soon. Hopefully like you, I can wait till 40 +.

Because every surgery as you said sets you back with more scar tissue, more recovery. Is the PEG similar to miralax? Or something different? I also have the severe constipation sigh -- I SO know what you mean about that pressure, when you stand.

It is the strangest thing and feels so strange on my hip bones sometimes. Right now I am not having it as bad again, I have no idea why it has chosen to get better over the summer. Maybe some inflammation has died down.

I think that my endometriosis is in the sacral ligaments and stuff too which can cause pressure -- you are the only other person to talk about adenomyosis, even though I know it accounts for 10-15% of hysterectomies. And I am guessing a lot more people have it than know it!- - I was so naive and thought it was contained in the uterus.

I am sure this is just a brief period of half normal which I will take this summer, but I will continue to update as I go back to the dr in June. He does still recommend the full hysterectomy, but I think I am going to hold off as long as possible.

Endometriosis is a nasty thing and seems so poorly understood. I do not have a lot of hope that a full hysterectomy will even cure things, and it could make matters worse in terms of creating new problems-- ugh! What to do? for now, nothing. -- I guess for good or bad, at least no-one can tell on the outside I have these issues. --

Name: Anonymous


@ in a similar boat -- sigh I am so sorry we share this bond too !- not a fun boat ride!-- Are you able to fully empty your bladder? I haven't been able to for years, and I am sure it is all related. -

@ i can relate - Having said this, at the moment I am happy to report I'm having a brief reprieve! I had a colonoscopy recently, and he seemed encouraged that while my anal sphincter scar tissue wasn't great and would need repair "again" in the next five years sigh, the endometriosis wasn't as bad as feared in the septum area.

He didn't think it warranted surgery there or hormonal injections ! So relieved -- There was no puckering yet or anything into the bowel - I gather from your story and the bowel resection, that your endometriosis went through your bowel, although we're sure it is attached to the bowel somewhere on the other side not visible. It seems to attach to anything it can doesn't it?!

My doctor told me of a patient that had her lung collapse every month during her period! So I know it could be worse. I was surprised to learn the rectum is a common place for endometriosis to settle UGH!

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