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At Wits End

I was diagnosed with endometriosis in 2000 after a laparoscopic procedure. I didn’t know what was going on except my periods were horrible and the back and pelvic pain were horrific. I was told by doctors that some women “just have bad periods” and was put on various pain meds, which helped very little.

I would not have known if I had not been trying to get pregnant at 28 years old. Both tubes were blocked, ovaries stuck together, bladder stuck to pelvic wall, and blocked ureters. I was a mess because I was told to get pregnant was almost a 0% chance. We did not have the money for IVF. My husband tried to understand he best he could about sexual intercourse. Each time we had sex, I was in excruciating pain for 3 or 4 days.

Total Hysterectomy

I ended up having total hysterectomy; both tubes, ovaries, uterus, and cervix removed. It helped a lot for some years but the damage was done because I had to have adhesion surgery to help alleviate the pain. Then had to have both of my ureters re-implanted because of blockages and kidney involvement. All of these surgeries, except the laparoscopy, were open abdominal. They tried to do it laparoscopically, but could not.

Next, Gastric Bypass

So in the meantime, I was resolved to the fact that I would never have children of my own. Then in 2011, because of severe obesity, I had a gastric bypass performed. I informed my surgeon of my medical issues and he assured me, “Don’t worry about that, I’ve performed surgery on women like you before”. So I had the surgery and immediately on waking up, I knew that I had been cut open. The surgeon told me it took 5 hours for a surgery that normally takes 1-2 hours. He also told me that they found a big endometrial mass sitting right on my stomach.

I was assured and promised by my OB/GYN that all the endometrial tissue was removed. I was also put on estrogen the night of my hysterectomy, and now I believe they no longer do that.

Symptoms have persisted

Anyway, I am still having issues all these years later with pelvic pain. I am having intermittent pelvic pain with increasing frequency that mimics bowel issues. But I have had a colonoscopy, small bowel tests, and several other tests that came out fine. So the only explanation for this pain that I can come up with is either adhesions or more endometriosis left in my body. I remember the Endo affecting my bowels before.

Any advice?

I am still on estrogen that I have been taking since 2001. I am 51 years old now and at my wits ends. Does anyone else have anything similar that I am describing or have heard about? Any replies would be greatly appreciated.

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Comments

  • Jessie Madrigal moderator
    2 months ago

    @loggrhd1 thanks for reaching out. I am sorry you have been through so much. I haven’t had the exact same experience as you, but from my own history and what I know of this disease, is that hysterectomies are no cure. They can offer a lot of relief for some, but there is always a big possibility of the adhesions and discomfort returning. Even if the adhesions are not endo-related, any form of surgery carries that risk. So yes, you could be having adhesions again.

    You are right to make the link between your bowel and endometriosis, since a lot of patients, including myself, experience IBS-like symptoms that are linked to this illness. Could you speak with an endometriosis specialist? You have a history with this disease, so that’s already a strong and justified reason to look for someone who will get to the bottom of this. On facebook, resources like Nancy’s Nook offer a list of endometriosis specialists.

    I wish you nothing but good luck and the best of health. Please keep us posted, or reach out to us if you need to – Jessie (team member)

  • Loggrhd1 author
    2 months ago

    Thanks so much for the reply. I will check out the specialist list.

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