Hysterectomy, anemyosis, surgery next month, help and reassurance needed please

[Anonymous83]

Im 39 and diagnosed stage 4 endometriosis plus anemyosis with endo largely spread to bowell and pouch of douglas and cysts on ovaries. A total mess!. I have been waiting for a surgery and was due for one on a waiting list in a year time. Due to latest results not being great i received a call tonight for a surgery next month. Total hysterectomy with potential stoma for bowell. Im really worried about surgery and after op. Can anyone share some experiences about the op, lenght of surgery, time in hospital, pain, recovery journey and so on please

[Mysterywomen]

Hi, I’m 47 and 2 years ago was diagnosed with exactly the same as you describe, stage 4 endo, on the bowel, on pouch of Douglas, cysts on both ovaries. I got surgery date finally this sept but they opted to just take out my left ovary & tubes and endo surrounding it as this is where I have had most of my pain. Ask why they want to take everything out in one go, as you will go into menopause immediately. I’m now on progesterone pill and some nerve pain meds as I had an endo flare up 1 month after surgery. I also still have some endo on my bowel. Check with consultant why they want to take everything out immediately, it could be done in stages to maybe avoid the stoma bag. Good luck x

[Anonymous83 in reply to Mysterywomen]

Thanks for your reply. The endo is well spread and the latest result showing its impacting my kidney function now. There is not many options left and this is why i agree to remove everything. I am lucky and have 2 beautiful children. I already had a laparoscopy back in 2019 to remove cyst but the surgeon could not do anything as the endo was too invasive. So total hysterectomy is the best option. Hopefully all goes well. Im just really worried as its a big surgery. It will be done in an endometriosis center as it cant be done elsewhere

[fidawarrior]

Hello, did u have your surgery? How did I go? I am in the same boat with surgery due in week. Very anxious and confused