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 ruining my life and had hysterectomy

by Emily Green

I'm only 26 and had a total hysterectomy due to endometriosis in August 23rd 2011, and I was told a while ago that my endometriosis was already on my intestine.

Not totally sure if this is my endometriosis returning, but for the past month I've been having nausea and bloating, bowels are strangely acting up. Can't barely eat. Been to the hospital 2 times and nothing shows up in a CAT scan or an x-ray?

Been to a family doctor too, no clue, just keeps putting me on certain foods to eat, and so much medicine. Could this be my endometriosis acting up again? I thought once you got rid of it, it was gone. Yes currently on Esterdoil pills.


Name: Anonymous

Title: I am having the same troubles!!

I had my hysterectomy almost 2 years ago after my 5th baby.. I was GOOD, AMAZING after!! I was working out, losing weight ETC!!

Now here I am in serious pain again :( No idea why!! I have the pain, tenderness, bloating, nausea, vomiting!!

And what makes it all worse is the looks I get from people and the "I thought the hysterectomy would end all this" LIKE I ASKED FOR THIS!!! I wish more people understood I REALLY do!!

But I have had 2 surgeries to figure this out and nothing!! I do know I have a spigelian hernia that they have yet to fix.. But I honestly think its the endometriosis!!


Title: Hysterectomy (kept ovaries). Now endometriosis is at its worst

I am 28 years old, I was diagnosed with endometriosis age of 22, I have had 13 laparoscopies, endometrial ablation, and hysterectomy was done in 2010.

Needless to say when I had hysterectomy done the DR that did it cut my vaginal wall and my colon, then next day rushed into surgery and he didn't fix his mistake.

Then had 2 blood transfusions, and 2 days later sent home with fever and infection. And over half blood loss. 3 days after ended up in ICU after emergency surgery and woke up weeks later with a colostomy bag! My problems have gotten 10x's worse.

I've been at ER 4 times in 6 weeks, I have a 6cm cyst on ovary, and can not have a bowel movement, I'm so constipated, nausea, vomiting, fatigue.

I saw my OB Surgeon today and says I'm too high risk and my insides are so messed up and covered wit endometriosis, scar tissue, adhesions everywhere even on intestines & colon! But endometriosis does not go away, and most cases symptoms are worse then ever imagined!

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Oct 27, 2014
by: Anonymous

I was on Estradiol low dose after my hysterectomy due to endometriosis for a year and half. I was told taking it fed my endometriosis and I ended up in the operating room again. I had lesions and tentacles and masses in my urethra, colon, rectum and sigmoid area. Estrogen is nothing to mess around with. I am not touching any estrogen any more for fear I won't have any more organs left after.

Being thrown in the depths of menopause at age 44 is not fun either. I am now 46 and still dealing with many rapid changes in my body and mind. This is the lesser of two evils for me. I do not want to keep going under the knife and suffering from endometriosis pain prior. I really feel for you. I would find an endometriosis specialist asap if I were you. Take care

Feb 23, 2014
Stop taking the Estrogen meds!
by: Chrys

In my experience, yes, you can still have microscopic lesions after having a total hysterectomy! I have them down by my bowel area still. I am not on estrogen because endo feeds off of estrogen. I am ONLY on a low dose of progesterone that I take orally every day and it has completely stopped all of the searing pain I had with every bowel movement.

Before my total hysterectomy, I had strange severe bowels issues and pain before every period and all of the doctors I saw related it to bowel issues and I was put on all kinds of different meds but NONE of them helped.

When I was going through IVF treatments, I noticed that every time I gave myself the progesterone shots every month, my bowel issues would resolve! I brought this up to my infertility doctor and he said it made sense because the progesterone calms the endometriosis down.

The estrogen is what flares it up. So, for me, past experience has told me to take the progesterone every day to keep the current adhesions I have nice and calm. It works! Be your own advocate at all costs. Don't be afraid to bring up options you've heard of through other sufferers that have worked for them.

Endometriosis is not an exact science and all's I did was just say to my doctor "I want to try it". If they are opposed to trying something, go to someone else. Seriously. There are many doctors that want to help and will listen to you. It's your body and you are the only one who knows it well :) Good luck!

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