No endo found?

[lottielottiedog]

Hi all,

First post on here just looking for advice!

I had my first diagnostic laparoscopy yesterday and was told that no endo was found. I am in disbelief and I am so upset I feel so invalidated as I was convinced I had endo.

All that was found on my surgical notes was 'sigmoid adhesions of the large bowel to the pelvic side wall - physiological' I am awaiting follow up and nobody discussed it with me after my lap. I was just wondering if anyone could decipher this?

For reference I have never had any previous surgery to cause adhesions? could this be indicative of endo as my Dr was not an endo specialist and I'm unsure where to go from here.

Thanks in advance,

A very confused and upset girl.

[Tangoandmax]

Hello, I’m so sorry you’re going through this. Literally everyone’s worst nightmare!

Adhesions don’t just happen, biopsies should be taken to confirm endometriosis. You’ve mentioned you weren’t under a specialist, I would request referral to a BSGE centre for a second opinion.

I’m assuming that given they’ve said physiological, they haven’t treated or removed adhesions, you really need someone that knows what they’re doing and has adequate experience. Push for the second opinion, standard gyne knowledge is limited and in my experience of the 6 I’ve seen only 1 was helpful. Xx

[lottielottiedog in reply to Tangoandmax]

On the surgical note it said physiological but on the discharge letter sent through the post it said no adhesions?

I am incredibly confused as I didn't think as you said that adhesions can just happen?

Thank you for your response xx

[Teeflyers]

Maybe ask for a second opinion x

[LisaFearonCoaching]

I’m sorry to hear that this has been your experience. I agree with the others, as to be referred to an endometriosis specialist. As they are the only ones who really know what they’re looking for and how to treat. As the other person here said - there are regulated clinics now for endometriosis called BSGE centres. Also, I was of the understanding that they didn’t do laparoscopies for diagnosis anymore, as there are other non-invasive diagnostic tools now. Eg ultrasound and MRI. Well in the UK anyway. That’s how I had mine diagnosed. I also wasn’t happy with the first endometriosis clinic I was sent to, so asked to be referred to one I’d researched and saw was a lot better. And have just had a second ultrasound to review and the radiographer doing it was amazing and very knowledgeable. That’s what we need! Through the procedure she was moving my ovaries, checked around my bowel, kidneys, bladder everywhere and guided me throughout as to what she was doing. I’m now having an mri again to check. As the last one was 4 years ago and seems mine has spread. A good specialist will avoid surgery as much as possible. Are you based in the US? Hope you get this resolved and get some proper guidance and support x

[lottielottiedog in reply to LisaFearonCoaching]

Hi. That will be my next step, after my follow up I am going to go back to my GP and request referal to a BSGE centre . I am based in the UK and did have an ultrasound with minimal findings of note other than 'heterogenous myometrium' which from my research can indicate endo or adeno. At my follow up I want to request an MRI as I was offered one prior to my lap but was advised to go straight for a lap.

Thank you so much for your advice. hope all goes well for you xx

[HolsBamboozledwomb]

Hi! I'm so sorry you're going through this, I was told there was no endo found at my first appointment and I pushed for another referral to a female consultant in the endo clinic, who told me I have adenomyosis stage 4 and 3 weeks ago had a total hysterectomy.

I would say ask your GP for a referral for a second opinion, like everyone else mentioned. You don't have adhesions for no reason, clearly there is something going on! I really wish inexperienced surgeons would stop doing surgeries for Endo when they have no idea what they are looking at or for, it's so unethical it's unreal!

[lottielottiedog in reply to HolsBamboozledwomb]

Thank you so much for your reply! Next step for me will be requesting a new referal! x

[Lily1986]

I’m so sorry you’ve had this experience. The adhesions would have to have come from injury or disease.

Request copies of photos and videos from surgery, these can be obtained from the hospitals legal team if necessary (subject access request). Take these along to a second opinion with a BSGE registered specialist.

This being told “no endo found” seems to be happening way too often on the NHS these days. Then magically when the same patients pay to go private, Endo is found, quite often found severely too.

Sceptical me would say it’s a cost and/ or waiting list cutting technique. Having had my whole life ruined due to being fobbed off and lied to for 15 years by NHS doctors by which time the disease had obliterated my insides leaving me in permanent pain, childless and with multiple organ dysfunctions. I’ve very little time for these doctors whom rather than admit they don’t know about the disease, prefer to gaslight the patient.

Please feel free to message me anytime

Best wishes to you ❤️

[lottielottiedog in reply to Lily1986]

Hi, This is what I thought about adhesions and I have no other reason that they would be there! I did request photos and there was only one and I have no idea what it is of!

I agree, it seems silly that they simply operate when they don't have expertise in the area and I am confident that I do have endo. They have simply said 'no endo found, hopefully the mirena coil will resolve your symptoms' but surely the cause of the symptoms should be investigated not just papered over!

I hope you are well!

Thank you very much x

[Lily1986 in reply to lottielottiedog]

Thats very worrying they only took one! Definitely would appear there’s something they don’t want you to see. There should be several photos of different parts of the pelvis, even if nothing was found (which I don’t believe, adhesions are caused my disease).

Definitely do a subject access request through the hospitals legal team the procedure should have been recorded. I have to do this twice yearly now to ensure I have copies of my full medical records. Honestly the stuff I’ve discovered through it about my body that I was never told about is shocking.

It’s absolutely awful, they can get away with it because it’s benign. Beyond fed up with the way we’re treated, especially by NHS staff. It’s awful. Their negligence left me without children and in pain for life so I will do whatever I can to prevent them doing it to other people.

Best wishes to you ❤️