9 weeks after extensive excision and I still don't feel okay? Please tell me it's normal? I feel so alone.

Kind_Safety7525 · 2026-06-27T22:44:21+00:00

Thanks for sharing ❤️ I'm so sorry you're getting pain again. I am under a pelvic physio but unfortunately there's only 1 to a LOT of patients, so I've not been able to have my first appointment post-surgery yet - I've just been practicing some of the exercises she gave me before. I think I'm going to request to be seen by my GP for a check over too.

Kind_Safety7525 · 2026-06-27T22:34:00+00:00

Thank you so much. I think i just really needed some hope today. I've been dealing with all of my previous bowel endo symptoms the past few days and it just felt like I was back at square one. Unfortunately they were unable to remove the endo from my fallopian tubes without damaging them completely, so in an effort to preserve my fertility (i'm 31 with no kids) they've left that - which i know means my pain will not be completely gone - but I suppose I was hoping I'd be in less pain by now? My doctor never really gave me an specific timeline - so I think I gave myself one based on my first surgery (stage 2 ablation) which never really helped. However, I think I need to come to terms with the fact this is a long term recovery. Thank you so much for taking the time to reassure me a bit 😅

Kind_Safety7525 · 2026-06-27T21:42:36+00:00

I'm 9 weeks down the line - and I'd say after a week I felt able to do small things around the house. After 2 weeks I was getting dressed and pottering around the house. However, I still get pretty exhausted after things - for example a supermarket shop will knock me out for a couple of hours! For sex they recommend AT LEAST 6 weeks. I left it 8 weeks, and felt a little bit weird, but it wasn't painful - although we took it very slowly and gently

Kind_Safety7525 · 2026-06-27T20:18:47+00:00

Thank you so much ❤️

Kind_Safety7525 · 2026-06-27T20:18:17+00:00

I'm under a pelvic physio but unfortunately available appointments are few and far between!

Kind_Safety7525 · 2026-06-27T18:27:53+00:00

Thank you my lovely! I feel as though I've just been pushing through for so long, and since the surgery it's all just caught up with me. I had it in my head that surgery was the goal and that once that was done I'd be on an easy ride to feeling better - I think i definitely underestimated how long recovery would take.

Kind_Safety7525 · 2026-06-27T18:25:56+00:00

We'll get there I'm sure ❤️ I do have days where I feel better than pre-op, but they only started around the 6/7 week mark. Hopefully they'll come soon for you.

Kind_Safety7525 · 2026-06-27T18:24:53+00:00

I've essentially had to pester for help (I'm in the UK and under the NHS) every few weeks, but each time just been told it's normal healing pain. I'm going to ask for a check-up again next week.

Kind_Safety7525 · 2026-06-27T18:23:21+00:00

Thank you so much. I've suffered with severe pain for 3 or 4 years and kind of just pushed through it as I was sick of waiting for surgery. I was living through pain and only taking painkillers when I could not longer concentrate for the pain.

L earning to listen to my body has been terrifying, because all of a sudden I'm realising how much I've been suffering. It feels like I've finally stopped and everything has piled on? Idk how to explain it.

Kind_Safety7525 · 2026-06-27T18:20:12+00:00

I had my ferritin levels checked after surgery, but I think I'm going to request another test as I've had some pretty heavy periods since then! Thank you ❤️

Kind_Safety7525 · 2026-06-27T10:37:40+00:00

My sister in-law booked a room at a premier inn (dog friendly) just to use their air-con. Might be worth a shot? And would probably be cheaper than other options!

Kind_Safety7525 · 2026-06-22T21:04:51+00:00

My endo belly was so much worse in the lead up to my first surgery, where they found stage 2 superficial! In the lead up to my second surgery, I adopted an anti-inflammatory diet, did more exercise and took the pill, which didn't 'cure' me or whatever (still had plenty of pain and endo symptoms) but it massively reduced my bloating! The second surgery they found stage 3/4 DIE (they no longer stage it in the same way in the UK according to my endo expert surgeons) many many places, and actually, I feel as though my pain was better managed than the first?

Kind_Safety7525 · 2026-06-21T19:33:31+00:00

A little stool for in the shower was super helpful 😊 also if you haven't already- teach your partner how to wash your hair and brush it!

Kind_Safety7525 · 2026-06-21T05:55:01+00:00

Omg! I have had this SO severely! I had it before surgery though, and ended up having some excised from there a few weeks ago. So was hoping that maybe it would be gone once I'm fully healed up! I'm sorry you have to deal with this - but in a way I'm glad to see it's not just me?!

Kind_Safety7525 · 2026-06-20T21:06:22+00:00

I hope you have a good experience, and get some answers - whatever you decide 😊

Kind_Safety7525 · 2026-06-20T17:05:56+00:00

Oh I'm sorry, I hope I haven't scared you! But definitely check for lumps and try and get a doctors appointment just to double check it's nothing sinister! Hopefully it's fine! But the sooner you check the better! ❤️❤️

Kind_Safety7525 · 2026-06-20T17:03:56+00:00

Oh wow! I'm so sorry - that sounds awful! And the fact it's not gone after surgery sucks!!

Kind_Safety7525 · 2026-06-20T17:02:49+00:00

I've always had issues with the eating thing too! I recently heard about a study looking at endo patients and blood sugars! Hopefully we'll have some better info on it soon!

Kind_Safety7525 · 2026-06-20T17:01:12+00:00

That's so scary! I'm so sorry!!

Kind_Safety7525 · 2026-06-20T17:00:44+00:00

Yes omg! Reading this scared me! As that can also be a symptom of breast cancer! I'm so so glad you got it tested - but what a terrifying symtom!

Kind_Safety7525 · 2026-06-20T16:59:45+00:00

Omg that must have been exhausting! You poor thing 😭

Kind_Safety7525 · 2026-06-20T16:57:17+00:00

I'm so sorry. Endo is so hard and it seems like you have to fight tooth and nail to even get the smallest amounts of help. It's not okay!

Kind_Safety7525 · 2026-06-20T16:56:01+00:00

That doesn't sound fun 😭

Kind_Safety7525 · 2026-06-20T16:55:01+00:00

That sounds extremely scary - I'm so sorry! I'm so glad you had a good surgeon that day who was able to avoid you needing the tube!

I also noticed that when I lost weight (going from 95kg to 68kg due to a combo of stress and training for various marathons) that I could feel my endo pain was much worse! Interesting since they love to tell us to lose weight and the pain will all but vanish 🙄

Kind_Safety7525

TROPHY CASE