I had my follow up consultation yesterday following extensive surgery (endo removed throughout the abdomen 'everywhere', a 10cm endometrioma, appendix, scar tissue, both tubes).
Only diagnosed at 35 due to infertility investigations. Stage IV. I guess I was 'lucky; in that I didn't realize before and I could manage the pain.
The consultant essentially said after we finish fertility treatment (at this stage we have had 7 failed ivf cycles and honestly my mind is a mess about what we should do) he would recommend a hysterectomy.
I didn't expect this, and actually didn't think it was the go to solution any more. I've started visanne (progesterone) and apparently I have to stay on this forever or one of the gnrh analogues alternatives. The combined pill wouldn't be suitable apparently due to the estrogen content.
Honestly I am feeling a bit crushed, the recovery from the surgery has been slow, and I still feel far from normal. TBH parts of my abdomen now feel worse than pre-surgery. On top of that I have clearly made the endometriosis much much worse myself by doing so many ivf cycles
I appreciate that I was v.lucky that I got surgery so quickly/ there was no cancer/ that I haven't been in agony for years.
But is this it - swallowing hormones for the forceable future and a hysterectomy in a few years. I feel so helpless -has anyone found anything that works, diet, exercise, yoga, counselling, acupuncture. All the medical evidence is so deflating - i.e. nothing officially works