Endometriosis story

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

Endometriosis and having a total hysterectomy (BIG MISTAKE)

by Kim

I got diagnosed with endometriosis after trying to fall pregnant.

I was in constant pain most days of the month, bleeding large clots, lower back pain and bowel problems. I had so much surgery and even one time got told I was most likely to have a colostomy for 6 months whilst the bowel healed.

The doctor told me it was the worse he had seen. I would have a crowd of student doctors watching my operations.

My endometriosis was attached to everything.
I had to end up having IVF and then came my twin boys.

The pain went for a year or so after the birth but then it flared up again and I had enough, I had my babies and at that time we seemed settle on being lucky to have them at all.

I went to my first gyno who dealt with my endometriosis from the start who told me that because I was young (27) he wouldn't do it so we went to see another gyno who was more than happy to do the hysterectomy, no questions asked. He really didn't know my past.

As I went into have the hysterectomy I did question myself if I made the right decision but I still followed through with it.

Months later I did feel relieved to be living pain free but then years later my marriage failed and then dating was complicated as most men wanted children.

I started to regret my decision. I wouldn't recommend having a hysterectomy at such a young age, I wish I tried other treatments. It was the Biggest mistake of my life and now I'm dealing with menopause symptoms which are just as bad as the pain of endometriosis.

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Feb 14, 2017
Fed up
by: Anonymous

I had my hysterectomy in August 2016. I had a laproscopy in 2012 because I had ovarian cysts rupturing 1-2 times a months. During the laproscopy he removed two complex cysts and I was stage 3 endometriosis. I was pain free for about 7-8 months. Lived the next years in pain until I decided I had had enough.

Doctors kept telling me at 36 and 37 years old I was too young to get a hysterectomy. I had already tried birth control, hormone replacement therapy because my hormones weren't binding properly. Nothing worked. At the end of September 2016 after hysterectomy me and my husband were intimate for the first time. Bleeding and pain to follow I went to see him and was told my vaginal cuff had torn.

He did silver nitrate checked me back in two weeks said I was good. I still was not intimate so that I could make sure it was healed. Fast forward to beginning of this month February. Intimate again and bled and in the most severe pain ever. Went to the ER was told nothing was wrong.

Went to my gyno and told my cuff had ripped yet again did more silver nitrate and was told I must be slow at healing. In the past few days I have been having steady pain on my left side where my ovary used to be (this side always hurt the worst with my endo and ruptured cysts) I am afraid the endometriosis is back and going in Monday to discuss and follow up to see if my cuff has healed.

I am so sick and tired of being in pain and all the drs want to tell you is to take ibuprofen which does NOTHING for me. Now I'm being told by the nurse that even after a hysterectomy endometriosis may never fully go away WHAT?!?!

Jun 25, 2016
Should I have a Hysterectomy?
by: Anonymous

I am sceuduled to have a hysterectomy done but I have read alot of stories that it's a big mistake. I just need to know from other women my age that suffer with endometriosis what other options do I have?

Feb 03, 2016
Need Information
by: KG

I had a partial hysterectomy in 2009. Three years later, I had an ovarian torsion, causing me to lose one of my ovaries. I am having extreme pain that feels like endometriosis. I am also having bowel issues that are similar to the ones I experienced when my endometriosis was at its worst. I am hesitant to see my GYN, because I was told that the hysterectomy would alleviate my endometriosis. Another laparoscopy is not something that I really want, but I do not know what else to do.

I have had severe back pain for almost 10 years and am now questioning if this could be related.
Does anyone have any information on this?

Jan 22, 2015
Endo Nightmare
by: Anonymous

I am 37 years old. I had a complete hysterectomy last May (had a partial 4 years ago, had 5 additional surgeries, endometriosis related, between the first hysterectomy and the completion) I also had a very very severe case of endometriosis.

I was told that the endometriosis couldn't survive menopause. THAT WAS A LIE!!! It is exactly 8 months later tomorrow since my last surgery and I am in pain. Endometriosis pain is one you NEVER forget. I don't know what to do and I pray no one EVER experiences this as well. I hope yours doesn't return.

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