Real Stories: Rebekah

Interviewed by Kayleigh via Zoom, February 2021

For Rebekah, things happened extremely quickly from the onset of her Endometriosis symptoms and she was scheduled for surgery within 12 weeks. She described her initial pain as being like labour contraction pain and with that came abdominal bloating.
It was a couple of months later before one particular episode made her reach out to her Gynaecologist. “I had this sharp stabbing sensation that was intensely painful about where my right ovary was, and I almost passed out from the pain. I couldn’t walk - it was crazy intense!”

Rebekah’s Gynaecologist listened to her describe her symptoms and immediately did an ultrasound scan. This revealed a chocolate cyst on one ovary and what looked like another developing on the other. Reluctant to try hormone treatment at this stage due to her history of post-partum depression, they decided to just keep an eye on things.

Six weeks later, she returned for another scan and at that point both ovaries had developed chocolate cysts. In constant and severe pain in both her pelvis and her back, she decided she couldn’t carry on living with this. Her gynaecologist suggested exploratory surgery and to go ahead with a total hysterectomy (leaving the ovaries).

In January 2018, Rebekah had her surgery. Stage 4 endometriosis was discovered and she ended up having a partial hysterectomy as her cervix was fused to her rectum.

Fast forward to June 2019 and, after struggling greatly since her partial hysterectomy with on-going stage 4 endometriosis and recurrent bilateral endometriomas (chocolate cysts), Rebekah was scheduled for an oophorectomy. Rebekah recalled speaking to her Gynaecologist “So, you’re telling me that, at the age of 36 years old, it makes more sense to send me into surgical menopause than to keep my ovaries?!” to which she recalled him telling her that in her case yes and that she could take a pill and be fine!

Unfortunately for Rebekah, she is now 20 months post-surgery and not on any HRT as her endometriosis symptoms kept returning really quickly. This despite 3 separate attempts to try a different HRT regime. She has also developed osteoporosis during this time.

Rebekah feels that doctors tend to grossly under inform their patients prior to an oophorectomy. When asked what has helped her and what advice she has for others, Rebekah spoke very highly of The Surmeno Connection. She advised others to educate themselves as much as possible and that she was able to educate herself prior to surgery via The Surmeno Connection website and by joining their support group on Facebook. Through this organisation, she has made some close friends – which has been one good thing to come out of everything she has been through. However, she feels she has traded one huge problem for a collection of problems and now greatly struggles with menopausal symptoms particularly fatigue which is severely affecting her quality of life.

Rebekah is very passionate about raising awareness and using her own experience to help others. You can find her on instagram @rebekah.and.endo