Lap & endo stage 4 experience

Hi all,

This may, may not help people out there. But I wanted to share my experience of endo so far. Maybe or may be not, I'm lucky because I've never had any pain or symptoms from endo even though I've literally had a jungle growing in me, stage 4 with 3 endometrioma cysts, adhesions, endo on the bladder, bowel, veering towards my appendix and ovaries stuck together. I've been trying to get pregnant for years and they initially diagnosed me with unexplained infertility which was a pile of ©

I had my lap last Monday and I'm totally fine. No pain, nothing. I read people's experiences on here and it's very upsetting especially the pain aspect which I've never encountered.

It just goes to show how misunderstood this disease is. 3 months ago, I was running around, life as usual with this disease inside of me wondering why I can't have a kid, to fully understanding endometriosis and how complex the disease is.

There are thousands of women out there that don't know they have it, hence not enough awareness. I never understood it until I knew I had it 3 months ago.

I have found the last 3 months a bit surreal but also very educational. It makes me want to spread more awareness out there. Even for people like me, who have had regular periods, no pain, normal ovulation but cannot get pregnant, can have the worst form of the disease. I think there should be posters up in doctors surgeries about this and the same awareness as cancer. It's mental how many people you speak to are clueless about it. Xx

[Sciencing_19]

Thanks for sharing I totally agree, there's a complete lack of understanding/awareness/funding for this condition.

I can not imagine stage 4 without pain! I too have stage 4 and its been a real tough 10 years!! I didn't even know that stage 4 without symptoms is possible so thank-you for educating me

Really sorry to hear about your fertility problems It is awful, but at least now you can start to understand what has been going on and that must be a small relief! Many ladies have surgery before trying to conceive, to give them the best chance - I hope that your lap was for this? Or at least it has been discussed with you? Also, at stage 4 you shouldn't be seen by a general gyne, it should be at a BSGE centre (the consultants rarely tell you this information!) Sorry if you know all of this already.

Hugs and positivity. x

[Girlfriday1970]

I am in the same situation except I am 48 and completed my family some years ago. I recently had emergency surgery to remove a twisted ovary and when I came back to the ward from theatre my consultant was waiting for me. She told me that I have one of the worse cases of endometriosis she has ever seen and that I will most likely have to have a total hysterectomy but at a specialist centre as the adhesions are so extensive. I have often had very painful periods and ovulation pains but never even suspected anything unusual. I am due to see my consultant next week to discuss going forward. I also have to have an MRI scan. This is such a bizarre and misunderstood disease.

I have found the advice from this forum very helpful.

Love to everyone out there who is suffering with this hidden disease.