Real Stories Q&A: Emma

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 was only diagnosed with endometriosis at 35 after thinking I was in early menopause. I had an ultrasound in the October, and an urgent referral for complex cysts. Consultant repeated ultrasound himself at my first appointment (turns out he was working at getting onto the BSGE list) He highly suspected endo and sent me for an MRI. Results came in end of December, it turns out I had multiple endometriomas, severe endometriosis and adenomyosis. I was offered an TLH+BSO immediately! I should add that I had 3 children, husband had already had a vasectomy and I had been suffering with chronic fatigue for 5 years previous to this. My consultant was confident the fatigue was caused by the endometriosis. Up until all of this, I had suffered painful periods, IBS since my periods began, and since having my youngest, horrendous bleeding. However, I was under the impression, everyone had pain! I had even mentioned at the CFS/ME clinic that the fatigue had been worse around my period. Still, no one put 2 and 2 together.
To be offered a way out of all of this with one operation felt like a blessing!

How long did you it take you to get a diagnosis for endometriosis?
From GP sending me for a scan it was only a couple of months! However, I now realise that I had been failed for years and years. Especially for the 5-6 years I feel I lost to the awful fatigue!

Did your symptoms of endometriosis disappear or remain following your hysterectomy?
Actually, even though I know a hysterectomy isn't a cure, touch wood, I seem to be ok. 🤞 I did have excision as well as a hysterectomy & bso

What were you told about surgical menopause prior to entering into it?
A patch or pill would be needed until I was 50! That was it!

Would you say your quality of life is now better or worse in surgical menopause as opposed to beforehand?
As much as I hate this surgical menopause rollercoaster, in the 4 years since my OP, my quality of life has generally been better. I had a fantastic couple of months about 18 months in, but then something tipped the balance and I haven't been as good since. Still an improvement to pre-op.

What piece of advice would you like to give to a woman considering having an hysterectomy for endometriosis?
Unless ovaries are beyond saving, or multiple surgeries would be a real struggle keep them. Don't remove womb unless it is causing an issue either. And be sure to get excision at the same time! Ablation isn't a fix.

What resources, websites, etc would you recommend to others wanting information and support?
Endometropolis was great for endo help. For surgical menopause, it still seems tough. So much geared towards menopause help now but for surmeno, not so much. Also, those of us that can't balance, there is no real help at all. Menopause clinic hasn't been much help, in fact I've been even more unbalanced and piled on the whole 5 stone I managed to lose before the referral. They seem to have left me high and dry too. And I can't afford private.
An added extra, my operation came with complications. My ureter was burnt during the hysterectomy, it was discovered to have blocked my ureter completely 2 days later. Thankfully I had been too poorly to go home. Day 3 I was taken back into theatre to have a stent fitted, my kidney was full of pus and septic. 2 more stents and then a major op to re-implant the ureter 11 months later with my 4th stent. But that's a whole other nightmare!