Anyone had adhesions removed to then be told it isn’t endometriosis?

[Tiff22]

Hello,

I am so confused and just need to know if anyone has been in the same situation/ advice on where to go next.

Had my lap on the 28th dec and the nurse went through my lap notes. She said they had removed endo adhesions that had connected my left ovary to my bowel and that the surgeon would see me in a few months to discuss fully.

Fast forward to what I thought was my follow up appointment today. I saw the gynae who basically just wanted to check in as I had the mirena coil fitted at the lap. I’ve still been in pain and getting all the same symptoms since the lap they’ve just been eased slightly. The gynae is just putting it down to the coil needing to settle.

I asked about my lap and he said that the surgeon didn’t want to review me because everything looked fine, normal and healthy. When I asked about the adhesions he said that you can just get scarring on your sigmoid colon for no reason and that it’s not endo and that I should be happy that everything is fine and healthy. I said that I don’t feel fine and healthy to which he said well you’ve probably got a hormone imbalance but the coil will sort that out.

I just feel so confused. They’ve said one thing and then said another. They told me previously that scar tissue only comes from surgery, infection or endo. I haven’t had surgery before and they ruled out infection. I’ve read my health record and it looks like they’re saying it isn’t endo because there aren’t any traces anywhere else. I probably sound silly because I should be happy with what they’ve said but I’m exhausted and I feel like they’re just going to leave me in pain.

I would really appreciate any advice or experiences if you’ve had a similar experience.

thank you 😞

[Tangoandmax]

Was the lap carried out by a general Gyne? At a general NHS hospital?

I’m yet to get to that stage 8 years of pain and they’ve only just confirmed via MRI that it’s endo/andeno involving my bowel.

From my experience, if the lap has been carried out by a general Gyne rather than a specialist, it’s really best to get a second opinion in a BSGE centre because most general Gyne have no clue what they’re talking about.

Whatever you do don’t let them fob you off. Especially if you’re still in pain. They’re very good at saying everything is fine when it absolutely isn’t! Ask them to explain why the nurses feedback completely contradicts what the gyne is telling you. Unfortunately you shouldn’t have to fight them but you really really do. 😔

[Tiff22 in reply to Tangoandmax]

The lap was carried out at a private hospital but I’m an nhs patient. The surgeon is a colorectal specialist, he’s tried to say all along that it isn’t endo and didn’t want me to have the op or get a second opinion. He admitted to me that he isn’t an expert on endo but has removed lots of it so knows what he’s looking for- apparently. The gynae is just a general gynae.

I told the gynae what the nurse had said and he just kept saying no that’s not true. It’s just so frustrating. They’ve been crap with me from the get go and treat me like I’m a crazy hypochondriac. I feel like they only did the lap to shut me up so I just don’t trust them. I regret not changing doctors before the lap.

Anyway, thank you for your response. I appreciate it ❤️

[Tangoandmax in reply to Tiff22]

That sounds beyond frustrating. They have to take more accountability for how this impacts people mentally.

I’d make a complaint. And request to be moved to a specialist centre. ❤️

[Jenny84- in reply to Tangoandmax]

Hi , i have mri booked for tomorrow. Did you have contrast or was your scan without contrast ? I would rather without .. thanks

[Tangoandmax in reply to Jenny84-]

Hi! I requested the contrast (just to avoid having to potentially wait for another appointment if they couldn’t see anything) but was told it wasn’t needed. My results without have been very clear so they were right it wasn’t needed.

[gardentink]

Ugh, this sounds so frustrating, sorry you’re going through it!

I was told they’d removed endo from left utero sacral (and when I looked up this type of endo after the symptoms fit to a tee!) but then six weeks later got my results back that said the histology was clear and that he’d be grateful if I spoke to my GP about IBS 🙃

I’m currently building up the mental energy to go back to the GP and asked to be referred to a specialist centre, but it’s so difficult when they fob you off.

I’d put in an access request for your operation notes and reports / results and then try and find a way to get in front of an endo specialist

[Tiff22 in reply to gardentink]

It’s exhausting isn’t it. I hope you manage to get the help you need too! I’m definitely going to do an access request for all the info i can get and go back to the go to try and be referred to a specialist.

Thank you for your reply 😊

[Palomino13]

Hello Tiff

Sorry you are going through all of this. If this is the advice from a general Gyn I wouldn’t listen to any of it. They don’t know anything about endometriosis. Don’t ignore what your body is telling you. You need to speak to an endometriosis specialist. This is only way to get your answer and peace of mind.

Good luck

[Reddog8]

Hi Tiff, you’re young and you need to get to the bottom of this. Firstly they should have sent off a biopsy from the lap to see if it is endo, so check to see if they did this. I am now 49 and have had 10 operations but the one thing I wished I had done at your age is go and see an endo specialist and not a general gynaecologist. It is a very frustrating disease until you get the right help. Good luck!

[Loriiim]

Hi, sorry you're going through this. It's an added layer of stress on top of everything else. I would look at getting a 2nd opinion from a BSGE centre: bsge.org.uk/centre/category... had a lap last year with general gynae with "specialist interest" in endo who denied my diagnosis on the basis that he couldn't see any endo & told me I had PID instead from an untreated infection. Luckily biopsy confirmed endo & I was able to get a BSGE surgeon at the same hospital to look at my surgery images who showed me all the endo still there & I'm back on the waiting list for more surgery. So unfortunately I wouldn't trust what he says. As someone else said, get copies of the images/reports/histology results (they should've biopsied the scar tissue) & take this with you elsewhere. Good luck, its so exhausting but don't let them fob you off.

[Busy23]

I am surprised they recommended a coil with adhesions as they took mine out because I had PID caused by a burst absess which caused an extensive amount of adhesions and I had a laposcopy. Also having a lapiscopy can cause mote adhesions. Trust yourself no pelvic pain is normal.

[Tiff22 in reply to Busy23]

Oh my gosh that is horrendous! I just want the coil taken out to be honest. I don’t think it’s helping me at all but they’ve told me to wait at least another month 🙄

[Tiff22]

Thank you everyone for your comments. You’ve made me feel less crazy ❤️

[coletteholt]

Was diagnosed with deep filtrating endometriosis and adenomyosis in 2019 following an MRI, and I am now awaiting a laporoscopy (been waiting over a year) and want to be under anaesthetic for that experience. Having a mirena coil was the best thing for me, as stopped alot of the pain and heaviness of bleeding, though it is due to be replaced (every 5 years). I am willing to take a hysterectomy if they decide that is required (after laporoscopy). Seeing my consultant in march.. but the treatment has been very slow in my case... waiting a year at a time to see someone! I still don't know if they are removing the adhesions, or planning to give me a hysterectomy...

[Tiff22]

UPDATE

I put my big girl pants on this morning and found the courage to ring my GP who are being amazing. I’ve wrote a professional yet ballsy email to the gynae staring that I am disgusted with their care and that I want a second opinion or to be discharged so that I can be referred elsewhere. I feel so relived just sending that email to be honest.

Thank you all for your responses, you’ve helped me get a bit more fire in my belly again ❤️

[MangoStickyRice in reply to Tiff22]

Yes! You go girl!

[MonieBL]

Well done you!! It seems that unfortunately the people who aren’t qualified enough in endometriosis have been giving you incorrect and damaging advice. I would highly recommend seeing an endometriosis specialist, you can see one on the NHS 😊. Unfortunately, even gynaecologists don’t fully know about endometriosis or take it seriously xxx

[Tiff22 in reply to MonieBL]

fingers crossed I’m on the right track now 🤞🏻 xx