Adhesions

[Sfxlibssfx]

hello everyone,

I had my lap yesterday & follow up in a few weeks.

From what I can remember, no endo found but my bowel had severe adhesions sticking my bowel to my uterus.

This is usually caused from previous surgery but this is my first time.

Other causes are PID and endo but it couldn’t be seen, she said both are still possible however as they could be elsewhere in the body.

Anyone with a similar experience? In my mind this is just going to be an endless cycle of adhesions surgery adhesions surgery etc. and I’m very confused about where these adhesions have come from.

Any advice or similar experiences very welcomed!!

[Moon_maiden]

Hi

Adhesions can be due to inflammation and Endo is an inflammatory disease. I had adhesions without previous surgery. Did the surgeon have much experience of Endo? It doesn’t sound like they looked very far and did they remove the adhesions?

Might be worth requesting a copy of your hospital notes so you can see what they’ve put down. It’s all free and can be interesting, although some don’t add much in the way of notes.

[Sfxlibssfx in reply to Moon_maiden]

Did you get endo diagnosed from your adhesions?

My surgeon wasn’t a specialist as far as I’m aware but has a special interest in laparoscopy.

The adhesions were removed, I was down for about 90 minutes but everything was looked at from the outside and not inside.

I will definitely request these thank you!

[Moon_maiden in reply to Sfxlibssfx]

Hi

I had Endo and adhesions, uterus was enlarged and inflammation everywhere.

Not sure what you mean by looked at from the outside? Have you requested a copy of your records? There are normally photos as well.

All surgeons do laparoscopy these days, it’s the interest in Endo that’s the main thing. I look up surgeons background and research. Researchgate is a good site see what they’ve done. Too many Gynae do operations they shouldn’t as far as Endo goes. I think any op should be done with the intention of one, possibly two depending on the extent, but one if possible and get rid of everything including adhesions other than pelvic area. I’ve ended up have five ops because of adhesions, gall stones and in the end told them to take out appendix as I kept getting pain there.

[Sfxlibssfx in reply to Moon_maiden]

Hello,

Yes that’s what I find strange, I was told inflammation and adhesions but no endo?

She basically said that she can only see what’s on the outside of my organs so wouldn’t be able to see if there as endo inside my womb etc.

Yes I have requested notes and images

Thank you so much, I’ll look into that! 5 surgeries!! You’re braver than I am! I hope things are better for you now x

[Moon_maiden in reply to Sfxlibssfx]

I’d say there was a good chance you had Endo f inflammation and adhesions, just depends if they knew enough, Endo can be several different colours.

See what you mean, I was being no dense 😂🤦‍♀️ The only way they can really tell Adenomyosis is a hysterectomy and look inside the womb afterwards, if uterus is inflamed good chance something is wrong. Endo surgeon was pretty sure I had it, my uterus was the equivalent of 16 weeks.

It can be an interesting read looking at med records. For the last surgery there is a different surgeon down to the one who was supposed to have done the surgery 🙄 which I’m hoping is only a paperwork error.

Not sure about brave more needs must, but things are a bit better than they were thank you.

[Sfxlibssfx in reply to Moon_maiden]

Yeah, I’ve heard that’s harder to diagnose! A little bit worried they might try to fob me off from here.

16 weeks! Bodies are so crazy!

I’m still waiting for mine to come through but I can’t wait to read lol. All the things they forget to mention to us!

Good to hear x

[Moon_maiden in reply to Sfxlibssfx]

Be ready and they won’t, stand your ground nicely 😀

Bodies are very crazy 😂

There s always something they don’t put or sometimes total lack of info and then you read between the lines and how long an op took etc. as to what could be done, looked at. I like pictures, told they don’t do video, very disappointed at that. 🤣 probably wise on their part so the patient can’t pick holes in what they didn’t do!

[Sunset-lady]

Hi I had an abandoned hysterectomy after they found deep adhesions have attached my bowel to my cervix. It will be endometriosis but it could have happened a long time ago. It was my first operation too. You now need to push to see an endometriosis specialist and have an MRI scan which will confirm endometriosis as you've probably got blood somewhere (my fallopian tubes are full). Don't let them dismiss you like this. I went private as I wasn't prepared to wait 18 months. Good luck x

[Sfxlibssfx in reply to Sunset-lady]

Did they find endo when they found your adhesions or just the adhesions?

Would the laparoscopy not show if you have blood somewhere - sorry I still don’t fully understand how they find and diagnose it.

But I definitely don’t want to get dismissed without an answer, especially now I’ve come this far!

Thank you x

[Sunset-lady]

The surgeon who attempted the hysterectomy was not an endometriosis specialist. It was supposed to be day surgery that I'd been carefully selected for. They were all really shocked. He said he thought it was endometriosis but it was beyond his skill set. He said it looked really well established adhesions (possibly been there for 20 years). There was blood in the photos which he was surprised at and couldn't explain, but itcwas just blood and didn't look like endo. The private MRI scan identified active endometriosis (I thought it was dormant, but the endometriosis consultant I saw said it's never really dormant you're just managing it some how). Many of us manage to control it as we age. However, he said peri menopause usually sets it off again.

The MRI scan could see everything. Active endometriosis in my fallopian tubes, a chocolate cyst on my left ovary, adenomyosis and fibroids. From what I've read MRI scans don't always manage to do this, and some women have to have surgery before they are fully diagnosed. I could be wrong but why would you have adhesions that weren't endo? I had never had an operation before so there would be no scar adhesions unless it was endo right? We don't just make adhesions in our bodies other than with endo do we? I don't know much about PID.

Did you have difficult periods as a teenager or in your 20s and 30s? It's hard for me as I did but I was just told to get on with it. A huge part of thus whole thing for me is that it has triggered a trauma response to back when I was young. There's a great book The Body Keeps The Score that talks about this. I hope I've helped in some way, and you get some answers. You just need a really good endo specialist x good luck x

[Sfxlibssfx in reply to Sunset-lady]

Oh how strange that the MRI revealed more than your surgery, unfortunately it’s usually the other way around. I have never had an MRI so it is something I will definitely mention in my follow up.

Yes I agree with you & they were my questions too. I have never had a surgery so why would scar tissue just appear? It doesn’t make sense to me and in my mind must surely mean endo is somewhere and if it isn’t then surely something else is wrong ?

I’m only 22 & started my periods young at 10 years old and it’s just been chaos since then! Thank you for your response, I hope you are well now! Hopefully I’ll get some answers soon x

[Sunset-lady]

I think surgery would have provided more answers if he'd been an endometriosis specialist. It makes a huge difference when you deal with those used to handling endometriosis and all that's involved. If you have had bad periods then it's most likely endo. Good luck x