Just had hysterectomy but didn't know I had endometriosis

by Sarah
(Dallas TX)

So where to begin... Started menstruating at age 12 nothing abnormal that I was aware of. From the age of 16 through 25 I was in birth control pills. At the age of 25 I was pregnant and had a miscarriage, same at the age of 26.

I then had a baby girl when I was 27 and a baby boy when I was 28 (they are 54 weeks apart) and now I'm 29 years old and just had a total hysterectomy due to irregular bleeding and extremely heavy painful periods for the past 10 months.

I kept going to my Obgyn and telling him about my bleeding and heavy periods and he suspected adenomyosis because I had two c sections but he suggested an endometrial ablation. I went and got a second opinion and the second doctor thought I should try an IUD first the move to a hysterectomy.

I knew I was done with kids so opted for the hysterectomy. Uterine cancer runs in my family, so at some point I knew I would have to take it out, why not now? So I wasn't aware I had endometriosis until after the surgery. The plan was to take out my uterus, tubes, cervix and my doc ended up having to take out one ovary due to the severity of the endometriosis.

Pathology came back and confirmed the adenomyosis as well. I had a ton of sonograms I would say for the past 8 months with the first Obgyn, the one who delivered my two babies, and not once was endometriosis mentioned to me. The second doctor (the one who did the hysterectomy) did mention that as a possibility to the abnormal, heavy and painful periods.

He also suggested we do a laparoscopy to see what was going in before we jumped to a hysterectomy. I had my mind set... After the procedure he then agreed with my decision to have the hysterectomy bc of how severe the endometriosis was along with the adenomyosis. I just find it odd that I never knew I had it until this late in the game (17 years of menstruation).

Currently I'm thrilled I had the hysterectomy, since he left an ovary, he suggested I think about trying Lupron shots if the endometriosis were to return. He's thinking a 5-10% chance. Anyone have a hysterectomy at a young age and kept an ovary and had the endometriosis return?

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Feb 24, 2014
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Lupron Shot
by: 2boys

About the Lupron Shot!!!!!! Do not take this shot, get off it while you can. You will gain more weight than anyone should in such a short period of time. You will go crazy and feel horrible the whole time. This shot should be banned FOREVER!!! It's absolutely horrible!

Feb 19, 2014
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Questions
by: Anonymous

So when you say it's in your bladder, bowels, and liver... Are these visible on scans? Does it cause pain with urination? Bowel movements? Effect your liver labs? Sorry I'm very new to this whole thing...

Feb 15, 2014
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Hysterectomy found endometriosis
by: KRISTA FL

I am 4 weeks after my partial Hysterectomy. Dr found the endometriosis during the procedure. I had an ablation about 2 years ago and thought my pain was from that. I just had my first shot of Lupron last week to help with the endo but so far I still have "cramps".

I have both ovaries but now I am thinking they should have just taken everything. In one week since shot I have gained 7lbs. Already depressed enough about the cramps and now getting bigger by the week. Has anyone been on Lupron with success?

Nov 24, 2013
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Endometriosis and total hysterectomy at 23
by: Danielle

I was diagnosed at 15 with endometriosis and had my daughter after two miscarriages at 19. I had a TAH this year at 23. I kept both of my ovaries and am not on HRT. I'm going back Monday to schedule for a laparoscopic procedure because I'm having symptoms of endometriosis again as well as PCOS. My mom had to have 4 surgeries after her hysterectomy because of repeat lesions. Unfortunately the surgery is not a cure :(

Nov 24, 2013
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Hysterectomy at age 32 and both ovaries left
by: Anonymous

Hi, I had a hysterectomy at age 32 after having twins and the Dr left BOTH my ovaries in (he was suppose to remove them too). I suffered from severe endometriosis and now it has returned and it's now on my bowels, bladder, stomach lining and my liver. I wish there was an easy way to fix it but NO Dr wants to... I'm screwed for life...:( Hope you get some end to the pain and discomfort and live a happy healthy life...Hugs to you

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