Advice

hey guys so last week Monday 21st August I had my laparoscopic surgery and I am devastated as they had told me nothing was found and continued to then call me crazy.However,I have recently just got my period and this pain is just so overwhelming again and I can’t deal with it anymore.

So when I had my surgery done I had a general surgeon do it and they only did two incisions however I thought they did more than that but I could be wrong.

I just wanted some advice on if I should keep fighting and go with my gut that something is wrong or do I just give up?

Any advice or just anything that you could tell me would be absolutely amazing!!

thank you

[rb55]

You are not crazy! You know your body and from experiences here you know that it can take a long time for us to be heard. I had the same experience. A surgeon walked up to me after op and said IBS then stormed off before I could ask a single question. I waited 8 weeks to see follow up only for it to be with the fertility clinic, I didn't want a baby at that point. I just wanted to be able ro have intercourse without huge pain. So in the end went to a different hospital. Met the best consultant ever. He believed I had endo even without surgery. Said that it could hide under the layers of tissue and at time of the month they could be visble or never show themselves.

Long story short. Keep trying. It's exhausting and upsetting but you have the right to a second opinion and the right or be heard. I hope you get some answers and relief soon x

[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.

I found out via this forum 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 endometriosis. 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 a 1cm fibrosed nodule on one of my uterosacral ligaments.

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.

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