Op. 8 - 3hrs of adhesions but no endo

[Ash24601]

This is a loong story but I will try to date each lap for context:2011 - diagnostic non specialist

2013 - 6 hr excision non specialist

June 2016 - due for excision with specialist but they ran out of time so turned into diagnostic. He assured my there was no bowel endo and that he checked thoroughly.

Aug 2016 - due for excision of what was found by specialists colleague. Excised all that but also found 2 areas of the bowel covered (!!!) That needed colorectal.

2017 - bowel surgery done and more endo excised

2018 - excision (most successful relief from this op)

2022 - excision with private surgeon. K asked 'what if you don't find endo' he laughed and responded 'every patient says that and I always find it's

2024/today...

Due for nhs excision with my usual surgeon, the one who found the bowel endo. He says he can't find ANY endo. Very adamant another surgeon wouldn't either because I really did grill him to advocate for myself. At first it felt like he was suggesting ibs and psyche. Felt like a teenager at square 1. Spent hours crying in recovery.

He came in for a second chat...

He explained he did 3 hours of unsticking things so it was still a surgery worth having and he's going to see me in clinic in 12 weeks to see what symptoms I still have and explore further options. He's also exploring further referrals because he thinks a lot of people have fobbed me off with 'that's endo' when it could be ibd or eds . So might be blessing in disguise we can say its not endo.

Just wondering if anyone has had experience with just adhesions/unstickinf and if it offered any relief?

My symptoms are textbook endo and my quality of life is 0. I've been getting sicker and sicker and counting on this op.

[TallulaShark]

I've only had one lap so far, last month. I was really shocked to come round to be told no endo. Again, textbook symptoms. However they did find severe and dense adhesions all over my pelvic organs, bowels and liver. The surgeon who did the lap put it all down to my c-section in 2009. Fast forward 5 weeks and I had a follow up appointment on Monday, now this different gynae said that all these adhesions couldn't be from one c-section, briefly suggested that there could be some endo deep beneath the adhesions, or suggested they've been caused by PID from an untreated STI (which I've never had). I've asked to have an MRI to look for deep endo or adenomyosis, but I've been refused. So I'm now going private. Adhesions don't just appear from nowhere. Everything is so confusing and it feels like no one really knows anything, so I feel your pain.

[Ash24601 in reply to TallulaShark]

Aw I'm so sorry lovely. I used to run an endo uk support group amd this was really common when the op was done by non specialist gynea. Then they would fight for a specialist referral to get the diagnosis.

I guess my difference is that adhesions are being put down to the previous endometriosis and surgery and done by a specialist. For example I asked if it was clear would he see it and he said he was specifically looking for that. Although as my bowel endo goes to show, even the specialists miss things they claim to be looking for.

But I can't have a 9th op!

I will give it a few months and consider private (again!!!) for a second opinion though.

Did you notice any relief from the adhesions clear up?

[TallulaShark in reply to Ash24601]

Have you had any scans? I've not had all the adhesions removed, I've got to have further surgery as there are so many and so dense.

[Sunset-lady in reply to TallulaShark]

Exactly what a load of rubbish telling you this. It's just old endometriosis and instead of gaslighting us they should be doing research into how some of us can actually get this disease to die down xx

[Sunset-lady]

Hang on isn't this just "old endometriosis" which is no longer active? You may have managed to turn the disease off through diet and lifestyle changes. My womb, bowel and ovary are glued but it's not "active" it's this old, grey, deep endometriosis. I think this should still be classed as endometriosis which flares and dies down throughout our lives. This endometriosis still cause problems. By classing it as adhesions it's not helpful - it's endometriosis which has been there a while. Xxx

[Ash24601 in reply to Sunset-lady]

Omg I've never heard it explained like that. They had me on prostap to so makes sense. I hope if he got all the adhesions it means he got all old endo?

[TallulaShark in reply to Sunset-lady]

This is very interesting. I think my "mystery" adhesions must be endo. But they won't do a scan. Honestly, going round in circles.

[Sunset-lady in reply to TallulaShark]

They absolutely are! You need the scan to see how the organs have been pulled and if its infiltrating endo too. An MRI with dye gave me so much but o had to pay for it myself x

[Ash24601 in reply to Sunset-lady]

So a gynea dr came round with my notes this morning and said exactly what you said. Unfortunately they were even treat it all! They said some areas were too difficult and risky. So either I'm left with adhesions or endo or both. I expect I'll be having a 9th op in the next few years...

[Sunset-lady]

They won't operate on me. It's too near the bowel and I'll end up with a stoma bag which may not be reversible. I will have had this for 20 years I think x

[Ash24601 in reply to Sunset-lady]

How do you manage it? Do you take hormones? They've never worked for me.

I used to have bowel endo quite severe and at that point I wanted a bag rather than live the way I was. I don't feel like I'm that bad right now. But I'm worried about it going that way again. I didn't eat solid food for a year during that time.

[Sunset-lady]

I changed my diet and lifestyle. I cut out alcohol and gluten and I prioritised sleep - made a huge difference. I exercised loads and was low carb and very few ultra processed foods. This all made a huge difference until peri menopause where it went mad again. I went on HRT but I don't think estrogen is good for women with endometriosis. Mentally, I loved it but physically it's not great. I'm on zoladex now and this has helped. Before this, I have bled every day for 21 months.

[Ash24601 in reply to Sunset-lady]

Ah I was on prostap and hrt form September until January and I felt like every symptom went from bad to debilitating. I would say I also have all those lifestyle changes too other than gluten. I've tried it before and not noticed too much difference. Can I ask how you are with fibre? It's always been an issue for me when I have bowel symptoms. I guess because there's a structural blockage it's like adding cars to a traffic jam. But I've been ignoring that these last 2 years, telling myself to eat healthier and ignore the pain...

[Sunset-lady]

Bowel movements are not great. I never ever pass a solid stool now as my rectum has been pulled too high by adhesions. I have to take iron because of blood loss and this makes everything worse.

[Ash24601 in reply to Sunset-lady]

Can I ask how you manage a day to day life? My quality of life has been suffering and this was the light at the end of the tunnel for me but obviously not. I'm lucky to wfh most days although I'm supposed t be in the office half a week my manager is happy if I do one. But on that one day I usually come home vomktting. My job is boring but I'm too scared to leave although they will be making redundancies soon so I dread to think what will happen. I can barely walk my dog anymore. I just don't know what's next really... I did find swimming helped the pain so I'm hoping that's something I can try again after I've recovered.

[Sunset-lady]

My pain is manageable most of the time and I have very little pain on zoladex. Yours sounds much worse than me. I don't have children and have a LOT of sleep. My issue is the constant bleeding which has made me very depressed and sad. I would say that i haven't been managing well really. It has been really tough. I work part time and when peri menopause hit I gave up my career. This has put a huge strain on my marriage x