Endometriosis UK

Needing advice

Hi, I haven't been on here for ages, I've had years of symptoms, was convinced I had endometriosis for a long time than had a laparoscopy last January and was told I didn't. Anyway pain etc. continued and Gynae finally offered my a hysterectomy for chronic pain. Had a total hysterectomy on December 11th and was put straight on oestrogen only hrt. During the operation they found a fixed tilted womb, bulky with fibroids, scar tissue and endometriosis which I was told was excised from my bladder amongst other places. I am 3 weeks post op and I am 99% sure the endo is back already :(. I have the same pains as before in hip and through my legs etc. I feel totally distraught...what now??? I am only 39 and really scared of not taking hrt and going into menopause. Does anyone have any experience of this they can share? Thank you.

5 Replies

3 weeks is prob too soon to worry my lovely. You are bound to be in pain after that kind of op. I didn't have a hysterectomy but I had removal of very severe endo back in May. I felt horrendous and in a lot of pain for a good 8 weeks after. Rest up and give yourself time to heal. Try not to worry.xx


I agree with Cat, you will take months to heal internally and it is completely normal to still be in significant pain due to the op right now. I appreciate it's scary and frightening that they found all these issues you didn't expect but they have addressed them now. Just rest and take strong pain killers. I needed 8 weeks to recover from my radical excision if endo which was done by a lap and you have had much more invasive surgery xx


Thank you ladies, I guess I need to be more patient! I wasn't told anything about recovery from the excision at all just about the hysterectomy. Back to work in 2 weeks and not ready! x


I've read about nerves 'remembering' pain patterns, if you've been in chronic pain for a long time then have the source removed, the nerves may still fire because its learned behaviour for them...(woooo brilliant! :( )

but I agree 3 weeks is no time at all, I had my Lap 3 weeks ago and am back in bed now because I tried to go back to work to soon, and yes as said above your surgery was much more invasive so rest rest rest!




I would also advise looking at an hrt that includes some progesterone not just the oestrogen. Oestrogen feeds endo so if there is any left and you are on an oestrogen only hrt....

Look into the ones that can be used with endo containing both, or ask about taking a week of progesterone every 4 weeks so you get a withdrawl bleed.

3 weeks is v early tho - it will take a long time to heal at least 6-8 weeks just for initial phase.

good luck.


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