Stringy adhesions

[kayleighann56]

I had a diagnostic laparoscopy in March just before lockdown happened and have been confused ever since.

I’ve been told I don’t have endometriosis but that I do have a lot of scar tissue and “cheese string like” adhesions attached to my left ovary and bowel. I have struggled to find much online about this and anything I do find seems to link it to endometriosis which of course I’ve been told I don’t have.

Does anybody on here have the same or know more about it??

The solution I’ve been told is to get the contraceptive injection to stop ovulation meaning the ovary pain should stop but still leaves me with the scar tissue and pain with bowel.

[Whoisthis]

Is this NHS? To me that does sound like endometriosis that appears web like in some cases, endo comes in different colours shapes and sizes only a trained specialist can really detect it all.

Can you find out more about the surgeon who did the lap? What are their qualifications, did they send any of the adhesions to pathology for testing? Sounds really awful care, talking to you about “cheese string like” like you are a child of something just smacks of them not having a bloody clue.

Sounds like a total waste of your time.

I’d be asking questions like the above, also if they don’t think it’s endo why are they trying to manage you with hormones?

That won’t help your bowel pains? I’d be maybe seeking out a second opinion, ask to be referred to a BSGE specialist and I’d be wanting a specialist to take a look.

Read up on excision vs ablation as well well before getting any other lap done.

Sorry sounds like you’ve been fobbed off by an unskilled endo surgeon who’s just “had a go” at looking.

[kayleighann56 in reply to Whoisthis]

Yes it was through the NHS, if lm honest I don’t remember much about the surgeon. I will try and get some information and look in to that more! Nothing was sent to pathology.

They said the reason they thought contraceptive injection would help because it stops ovulation and means the ovary “won’t be moving and pulling the adhesions” 🤷🏻‍♀️

Thank you so much for your reply! That’s really given me the confidence to challenge their findings and response. I did think it still sounded like endometriosis but who am I to question it haha. Thank you again!

[Whoisthis in reply to kayleighann56]

The reason they prescribe hormones is because they believe it’s a cure, because the GPS and many gyne still think endometriosis is caused by retrograde menstruation and it’s not, it’s a disease that we are born with. So the hormone route doesn’t always work, it just delays surgery and allows endometriosis to develop further, but for them they feel they have “fixed” you and you go away!!

I’d honest go back and ask for a full explanation, why no pathology was done and their plans for specialist referrals.

And don’t let them fob you off with the coil, cancer injections or any other nonsense!! 😊

[Moon_maiden in reply to kayleighann56]

On the hospital website there will be a contact or form to request a copy of your records. This will tell you who the surgeon was and show the notes they made after the op. It's free of charge due to the GDPR regulations.

Good luck, hope you get it sorted soon

[c142]

I read something very brief that reported adhesions can be caused by endometriosis, surgery, inflammation e.g., pelvic inflammatory disease or inflammation related to the bowel, or from different types of infection. Sorry it's not in much detail.

[kayleighann56 in reply to c142]

Thank you for your reply! I’ll look in to that more x

[JN2020]

Try serrapeptase and systemic enzyme therapy to get rid of scar tissue naturally. Look it up it works! Doctors only make things worse. Take your fertility into your own hands and pray about it!

[kayleighann56 in reply to JN2020]

Oh thank you, I’ll have a look in to that!! That’s really helpful, thanks for your reply xx

[RedbudTree]

That sounds so frustrating. I hope that you can find some answers.

For some women, physical therapy and targeted stretching can help to alleviate some of the pain from adhesions. This may be worth looking into while you figure out what else to do.

I’ve found that a quercetin supplement helps with my ovulation pain - it’s an antioxidant and helps reduce inflammation. I also use osteopathic manipulation for pain management - it can help calm the nerves and align the pelvis. One treatment usually lasts a week or two for me so if you could get it timed correctly with your cycle you could see an improvement in your quality of life.

Good luck! Different things work for everyone so don’t give up.

[kayleighann56 in reply to RedbudTree]

Yeah it has been frustrating. I’d hoped the laparoscopy would give me some answers and relief but with covid especially I’ve not been able to get much further since. Feel like I need to do something about it now.

Thank you for the advise I will have a look in to your suggestions!! Xx

[Amywoodx]

Hi I know this is an old post but I just wondered how you’re feeling now?

I had my lap on 21st September they found an adhesion to my abdominal wall and removed it but didn’t find anything else. I regret ever going for my laparoscopy as my pain is worse now and won’t go away but I don’t know if I should give it time or if it’s just healing internally.

[kayleighann56 in reply to Amywoodx]

Hi Amy, I wouldn’t say my pain is worse now but it is definitely not any better than before the lap. But it is sometimes a different pain and feels more constant. Sorry that’s not great news 😢 hope you’re doing ok xxx

[Amywoodx in reply to kayleighann56]

That is what’s happening to me too- it feels a lot more constant and sometimes different but I’m not sure if that’s just because I’m more aware of what it is now is yours worse in the morning by any chance?

[kayleighann56 in reply to Amywoodx]

Yes, it is definitely worse in the morning, I struggle to get up a lot of the time to be honest xx

[kayleighann56 in reply to kayleighann56]

I’ve not logged in here for a long time and only just seen your replies sorry xx

[Dnky33 in reply to Amywoodx]

Hi Amy,

I'm sorry to hear of your pain, but also relieved if I'm honest. I had a lap on 1st October to remove a mass on my right ovary following recurring pain, a trip to A&E and a CT scan. However, in surgery they found adhesions (but no mass) and said there was "too much of a mess" to do anything, other than remove a 'tiny bit' of adhesions. My recovery was AWFUL. I ended up back in A&E with excruciating pain in my hip and groin area, but after another CT, they said its still the adhesions.

I've had an MRI since, and will get results 4th Jan, but waiting is awful. Like kayleighann56 , I also was told mine isn't endo. Other than knowing I have adhesions which have fused my ovary, pelvic wall, bowel and possibly my fallopian tubes, I feel like I'm in the dark, with no end to this pain in sight.

Would be good to communicate and share xx

[Amywoodx in reply to Dnky33]

Was yours done by an endo specialist at a BSGE centre? That may be why they’ve left you in such a mess, it really shouldn’t have been left like that! It also doesn’t make sense why you have adhesions in your pelvic area without any endo present?? Unless you had surgery before which may have caused them. I think you should definitely look into finding an endo specialist If you haven’t already x

[Dnky33 in reply to Amywoodx]

No, they've said there's definitely no endo (I saw the photos too, and agree, although obviously I'm not an expert...!), but they reckon the adhesions are caused by an untreated infection or PID - it fits tbh! I'm under a gynae surgeon, who ironically does specialise in adhesions, although obviously that's not what they were expecting with me (that I know of, anyway). X

[Amywoodx in reply to Dnky33]

Oh ok maybe infection or PID then. Nobody knows how I could’ve got my adhesion. I thought maybe infection too as this whole thing started with sudden diarrhea one morning that wouldn’t go away so maybe it formed because of untreated infection. I just find it a bit of a coincidence how my periods gradually got worse after that point too but when I had a scan they did find polycystic ovaries last year. I’m sort of afraid that the birth control pills I was on had suppressed the suspected endo to the point where it couldnt be seen via lap :/ but not sure if that’s even a thing. I’ve heard it is but everyone says different things. Although I did come off birth control 3 months before the surgery so that should’ve been enough time for it to grow again for them to see it in surgery surely.

[Dnky33 in reply to Amywoodx]

Yes, you'd think so, because hormones regulate themselves fairly quickly (well, within 6 weeks usually) after a change of meds. I was put on the pill after my lap, as a way of reducing my pain, which tends to be worst a week before my period. I was in so much pain for so long following the surgery, that I don't know if its going to help or not yet. I'm just grateful for having codeine prescribed, and for always having some left over for the next spate of pain!

I think my infection may have been as long ago as 4 years. I've always had pretty bad periods, and very painful, but I started getting menopausal symptoms around 3 and a half years ago, which is why it kind of fits...!

[kayleighann56 in reply to Amywoodx]

I know this isn’t a reply to be but although they said there wasn’t any endo when I had mine, they did say there was a lot of scar tissue. So I’m not sure if that could also be related x

[kayleighann56 in reply to Dnky33]

Did you get any further with your MRI? xx

[Dnky33 in reply to kayleighann56]

I never actually received results from it. The appointment was postponed and then I was sent for an ultrasound before the results. The US was quite horrific, and I left thinking there was another mass on my left ovary, although the suggestion was that my right ovary was now clear. Before results, I was again sent for another ultrasound, where I was told I had beautiful ovaries which were both perfectly clean of any masses.Before my results consultancy took place, I got a call from a secretary to say I was being discharged.

And that was that.

Went for my regular smear test in June which was excruciating. The nurse explained more to me about the adhesions than I'd ever been told, and explained that they are probably the cause for my smear being painful, as well as my periods, and intercourse. I've been trying ever since to get an appointment with the nurse practitioner at my GP to start the injection, but appts are still very rare. It's a joke.