in agony but have no answer

[white61]

hey all. I just wanted to ask, can endometriosis not be seen by the eye in surgery? I had keyhole surgery and it was clear but there were no biopsies taken. All blood tests / bowel samples are clear. I have all the symptoms of endometriosis but all tests / surgeries are coming back clear. I am awaiting for an MRI scan and I am hoping it shows something to give me an answer. If the MRI scan is clear then the gynacology department will discharge me and I’ll have no answer for my pain.

the pain gets so bad that tramadol and codeine don’t touch the pain and the GP won’t prescribe me anything else as I don’t have a diagnosis. It feels you go round in circles with no answers. Anyone else in a similar situation and feel lost with no answers at all?

[Loriiim]

Hi,

I'm really sorry you've had to go through this. I went through similar & thankfully got some help through this forum which helped me push for answers. It also made me realise that this happens all the time.

Endo can be missed during surgery if the surgeon isn't trained or qualified to look for it. I found out via this forum post surgery that there is a BSGE certified list of endo specialists, so I would check to see if your consultant/surgeons name is on there. If they're not there, then they're not qualified or trained to be looking for it. My lap was done by a general gynae, which I only discovered afterwards. He told me he found no endo & that I'd had an infection, insinuating I'd left an STI untreated. This was despite having an ultrasound by a specialist previously who confirmed endo, & despite the surgeons profile stating he had an interest in endo. Thankfully my biopsy then confirmed endo - but this was only taken due to an obvious 1cm fibrosed nodule on one of my uterosacral ligaments. I should also point out that 2 months before my ultrasound with the specialist, I'd had an ultrasound by a general gynae sonographer who found nothing.

I filed a complaint & have since been seen by the endo specialist that did my ultrasound & said it was all there in the photos of my laproscopy for anyone who was trained to look for it, but he knew all this from my ultrasound. I've been readded to the surgery waiting list to have it all excised by him this time, alongside a full hysterectomy, but my first surgery was completely pointless. From the images he was able to see fibrosed endo all over my left side (my ovary was fused to my pelvic wall, this was separated during surgery, & my left fallopian tube is blocked to an unknown degree). I also have "classic powder endo" all over my right side, & have lesions around my rectum & on my bowel. I was also told during my ultrasound that my pouch of Douglas (the pocket between your vagina & anus) was partially "obliterated", insinuating deep infiltrating endo there. I've listed that just so you know how much can be missed by someone who doesn't know what to look for!

Here is the list of the BSGE centres, with all surgeons etc listed: bsge.org.uk/centre/

If your hospital isn't on here, go back to your GP & ask to be referred directly to one - you can chose which one. If they are, you can contact PALS & ask them to sort it for you. Just search PALS on your hospital website.

You can also submit a "subject access request" (basically a freedom of information request) to the hospital where you had your surgery. I'd request all your operation notes & any images of your surgery if any were taken - specifically request colour as I was pointlessly sent black & white & have had to submit a second request. It took me 2 months to get mine, so be prepared to wait. Search subject access request on your hospital website for the form & contact details.

You will also need to make sure a trained endo specialist will be the one looking at your MRI. If not, request a copy of the imaging & the reports to take to an endo centre for a second opinion.

Hope this is helpful, & you get some answers soon. Best of luck with it all.

[Endosufferer1]

Was the surgery done by a specialist for endometriosis?

[Cocoacupid]

I hear you hun. Had lots of problems in my early 20 s saw gynecologist they did internal said I was fine 17 years later I finally had an emergency lap I have severe deep infiltrated endometriosis am awaiting mri and bowel surgery don’t give up push until they listen . As you really don’t want to end up taking anti sickness daily due to feeling nauseous and excruciating pain when going tiolet and things . The doctor first thought I had inflammatory bowel disease which I don’t but they were worried as blood in stools. They kept saying uti and that I was bulimic and all in my head I would keep going down an and e as felt awful . Don’t give up hun ok just because it may not be that bad now I would still say have a hormonal therapy. Before it gets worse as I think I was given coil far to late as the damage already done. If your gut tells you something trust it. You are the only one who knows how you feel.