NHS Laparoscopy

[FetaPastaLover]

Hi everyone. It’s a week since my NHS laparoscopy and feel quite disheartened whilst having a slow recovery. They found no ‘signs’ of endometriosis, but found bowel adhesions, scarring and a recurrent cyst on my right ovary that was causing pain (not an endometrioma I don’t think though). Before I went in the general gynaecologists I saw said that there was a high chance they’d not find endo to begin with and symptoms could likely be bowel movements…. I don’t know where to go from here- whether begging for an MRI would help or forwarding everything to a specialist? And then whether to pay for this out of pocket which seems a strain if needing anything more than the initial consult. Or whether going for private health insurance is better?

I’m having a consultation on week 6 and know I should be focusing on recovering and wait for this, but just wondering if anyone has had similar on their laparoscopy and got a diagnosis after going elsewhere? And by what route of action? My symptoms were related to bowel, but also pain and irregular periods that often start after intercourse (even though I’m on the mini pill), and horrendous cramps. Thank you 🩷

[EndoOrNotToEndo]

I’m in a very similar situation. Had my laparoscopy done on Monday, no endo seen, but adhesions found on bowel and abdominal wall - but was told I might have been born with those?!

Later in conversation with another doctor was told that this doesn’t mean I don’t have endometriosis, it might be in my uterine walls… but what do I do with this information? There is no follow-up planned, no next steps, but I feel like I don’t have the answers.

My plan is to try and acquire the images taken during laparoscopy, and maybe try and get a second opinion, but I’m not sure yet, still feeling confused and mentally frail after the surgery.

[FetaPastaLover in reply to EndoOrNotToEndo]

Hey! It’s nice to hear someone’s in the same boat but I’m really sorry that you are. Hope you’re taking care of yourself and recovering - didn’t realise how long it may take for me to even stand up straight again!

I thought it would bring answers to everything which in a way it has but also led to more confusion. Interesting they said you could have been born with it…. I’ve only heard it’s either from past surgeries or sometning like endo so far. I’m curious about the pill too- I’ve seen some stuff that says this might mask surface endo… but I don’t know.

I think my first route of action is the pictures too and find a specialist (possibly ask my GP to refer) unless anyone suggests an MRI may help. We still should advocate for ourselves if it is endo like we thought and if nothing has improved pain etc. wise too! We deserve answers! Ty for commenting your experience. I feel you though and it’s hard to think about anything straight right now in recovery…. ❤️‍🩹

[matchapea]

hey, was the surgery done by a specialist in endo or was it a general gynaecologist?

I had a specialist and they didn’t find endo but checked everything and found I had adenomyosis instead which is something that can be quite hard to diagnose as it usually can’t be seen unless they see it after a hysterectomy.

Something to research about and mention to a specialist if you didn’t already see one.

[FetaPastaLover in reply to matchapea]

Hi Matchapea, it was just general gynos.

I did have a hysteroscopy the same day with curettings taken and awaiting results. Not sure if this would flag up adenomyosis at all or is it just the hysterectomy….

But thank you for raising this and hope you’re okay. When I have my consult and if/when I forward everything to a specialist I’ll definitley discuss it too then 🙂

[Sunset-lady]

I really find this hard to get my head around. If you have adhesions then it must be deep infiltrating endometriosis that is no longer "active" but has left the adhesions. It's still there and could come back but it's very likely that your lifestyle choices have calmed it. This is why it's grey looking and what my consultant calls "old endo" but it's STILL endo and I've still got this disease. If I change my lifestyle to an inflammatory lifestyle (drink alcohol, smoke, eat processed food and don't exercise or prioritise sleep) then I know it will come roaring back. I'm 52 this year and they only found endo at 50 when they tried to do a hysterectomy. The gynae team abandoned it because they didn't have the skills and I was referred to an approved endometriosis centre. When i spoke to the surgeon after my abandoned operation he said that they had never seen anything like it. A year later and my endometriosis specialist consultant is like "oh yes we see endo like this all the time." Endo is a strange disease that we can "turn off" for significant parts of our lives but it comes back in peri menopause particularly if you take HRT as it's estrogen led. You must have a proper endometriosis surgeon doing these operations and interpreting MRI scans. To say you are born with adhesions is utterly ridiculous. Please get yourself referred to a specialist centre so they can give you the diagnosis you absolutely deserve. Keep pushing- I am so proud of women like you who will not be fobbed off by the medical profession. Xxx

[FetaPastaLover in reply to Sunset-lady]

Hi Sunset-lady, not sure if you were replying to EndoOrNotToEndo or both in general. But thank you so much for your reply, it gives further motivation to definitley go forward with a specialist despite what general gynos have said. There are definite choices I make like cutting out alcohol that I think will have reduced inflammation but still feel its there - maybe as deep infiltrating. I will push for further investigations and opinions 🥺. I hope you’re doing well since your diagnosis/experience and are taking care of yourself❤️

[white61]

two years ago I had surgery and it was ‘clear’, September 2024 I had an mri scan and it showed endo, then I just had surgery 28th Jan 2025 and the surgery was clear again and no endo found, but he didn’t take any biopsy’s as there was no endo seen. Feel very upset as I now have no answers for my pain

[FetaPastaLover in reply to white61]

I’m really sorry to hear you’re going through something similar. Especially for them to validate your pain though with the MRI and then go back on themselves. They didn’t take any biopsies of me either despite adhesions and scarring. They should have for you if they saw it on the scan.

Have you thought of going forward/getting a second opinion with a specialist? Possibly for a referral to a specialist from GP especially since they saw your MRI seemed concerning ? I’m going to do this when I’ve fully recovered- this pain must mean something is wrong! I hope you have as speedy a recovery as possible after the op and get the courage to advocate for yourself again despite being knocked down 🩷