Real Stories Q&A: Karen

Questions & Answers carried out via email, February 2021

Please could you tell us a little about your experience with endometriosis and also surgical menopause?
I had stage 4 endo so bad it included disease in every pelvic organ as well as diaphragm. I had unsuccessful surgery that left me worse off than I was. Endo debilitated me to the point I was bedridden. I finally found an endo specialist across the country who took my case. I had a 7.5-hour surgery with him (one of the worst cases he had seen.) My organs were in such bad shape, I had to get uterus, cervix, fallopian tubes, appendix, right ovary and 1/4th of left ovary removed. All that in one surgery plus excision of the endometriosis. The 3/4 ovary that was left had to be dissected and reconstructed. He told me there was most likely some cells left over.
2 years later, I had that ovary removed due to very painful recurring cysts. I have not had pain since! Balancing hormones is tough, but it beats any day with endo.

How long did you it take you to get a diagnosis for endometriosis?
It took about 7 years. Was diagnosed with IBS which after years turned out to be endometriosis.

Did your symptoms of endometriosis disappear following your hysterectomy?

Would you say your quality of life is now better or worse in surgical menopause as opposed to beforehand?
Better in surgical menopause!

What piece of advice would you like to give to a woman considering having an hysterectomy for endometriosis?
It is a misconception that hysterectomy cures endometriosis. I had a great doctor who told me this prior to my surgery. I had to have it removed due to the damage to my organs. Not because it would be a cure.

What resources, websites, etc would you recommend to others wanting information and support?
Join the Surmeno Connection on Facebook! All ladies in surgical menopause. I have learned so much :)