Endometriosis UK

Post op advice

Hi ladies

I hope you are all well. I'm just after a bit of advice. As many of you will know I had my surgery nearly 5 weeks ago followed by complications due to my lung issues (pneumonia and flare up of my bronchiectasis) All of that has settled down now thankfully and I'm feeling well but my endo pain is exactly the same as pre surgery. Pain in lower back, pelvis, left ovary into groin pain, hips, thighs (my rectum is not as bad but sometimes I get a hot poker jab still) 5 mins into walking I'm in so much pain. I push on through with what I'm doing and try to carry on as us ladies do but I really thought I'd have some pain relief by now. How did you all feel after 5 weeks?

I had radical excision surgery for wide spread peritoneal and rectovaginal endo, frozen pelvis so all adhesions removed, total peritoneal excision, nodules removed from my abdominal and pelvic walls, utersacaral ligaments that extended to the septum and surface of the rectal and vaginal wall. So would be interested to hear from those with similar stage 4 deep infiltrating endo what outcomes they had post surgery and timescales?

I had the Prostap jab 2 months before surgery(3 months now) and it did nothing to relieve my pain so my surgeon thought a lot of my pain may be due to nerve damage. Does anyone know much about this? Could this be why my pain is the same now post surgery? What do people do for nerve damage?

Am I just taking longer to heal after quite traumatic post surgery illness? Sorry for so many questions maybe I'm probably just too impatient. I have my post op next Friday and my doc came to see me everyday I was in hospital but the endo was not really discussed as I was so unwell and I was then moved to an NHS hospital after 4 days to deal with my lung issues.

Again sorry for the waffle and if you see this posted in a few places but any feedback will be welcome.

Hugs to you all xx

2 Replies

Hi, my consultant said I wouldn't feel better, and in fact may feel worse, for the first 2 months post excision for stage 4, so I wouldn't worry yet.

Also, from what I've read the endo tissues produce oestrogen and as they've been cut out, I'm guess your body has a sudden drop in oestrogen to contend with post op, as well as physical healing.

I'm 2-3 months in and still feel exhausted. I started period 3 yesterday. Massive headache, heavier than normal period, but I think my pains may be better than before. A bit too early to tell for sure yet though.

I too am wondering if my healing is being slowed down by other issues. I had an extensive shoulder operation 3 weeks before my diagnostic lap which was 3 weeks before my excision lap. My GP has advised that I may I'm healing slower as my body is also working through 3 lots of general anesthetic and 2 areas of my body that have to heal....

From my experience, I think you are being too optimistic in your recovery time :-)

Take it easy. You've had a really big ordeal by the sounds of it.



Hi H

Sorry I hadn't noticed you responded. Thanks ever so much.

That makes a whole lot of sense. I wish my surgeon had given me a bit more info. In fact I got nothing not even post surgery wound info, do's and donts etc and that was private and bloody expensive.

How are you healing? You've been through a lot so I hope you are feeling a little better x


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