Endometriosis

[Mads81]

Hi Everyone,

Just wondering if I can get some advice, I got diagnosed with endo about 15 years ago had 2 laparoscopy's and it eventually settled with having a mirena coil fitted. Over the past couple of years the pain has got progressively worse to the point it's affecting work and my daily life really.

I'm in so much pain now so I went back to the doctor and was referred back to the hospital. I had my appointment this week after waiting months which to be honest was a useless appointment the doctor was patronising did ask me any questions and didn't really to know anything. The next step now is for my doctor to give me prostap/zoladex injections which I had years ago and they did nothing and they are arranging an ultrasound, I just feel unheard and incredibly deflated.

Has anyone else experienced pain after so many years of it settling initially?

Many Thanks

Hey!

I am not medical but I would suggest joining Endo warriors UK on Facebook for some advice.

I have made a UK petition to urge employers to make the workplace more period-friendly and make reasonable adjustments for people on their periods, and with conditions with PCOS and endo. Please share and sign!

https://petition.parliament.uk/petitions/647324

Endo never goes (until menopause at least). Mine was calm after surgeries in my late 20s and then came back with full force in my mid 40s and I needed further surgery.

Be aware that ultrasound doesn't really show endo unless there are endometriomas (cysts). and MRI will show a lot more. Are you under an BSGE centre. They are specialised in complex Endo. I wouldn't see a general gynae about it. I did a short cut by seeing an BSGE endo surgeon privately and was then referred onto his NHS case load. Cost £200 though.

My sister has endo (I am waiting to see if I have it too). She has been ok for the last 5 years since surgery but has been progressively experiencing pain and is waiting to be seen.
I feel for you, I have had gynae issues for decades and tbh, in my personal experience I have found every single gynaecologist I have seen (except one lovely gynae) to be patronising and totally unsympathetic of my issues.