Endometriosis story

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

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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