Self diagnosed endo , support needed

[Elephy]

Hi

I think I have endometriosis but have not been diagnosed. I have been referred to the gynecologist but on a waiting list and god knows how long I will be waiting for.

I have been to the doctors so many times over the years regarding the pain, I think I have been for 3 of 4 ultrasound scans then whenever I follow up I need to start from scratch again. GP has never mentioned endometriosis but after speaking to a friend who made me aware of endo and has been diagnosed with it herself, she believes I have it. I mentioned this to my GP at my last appointment and basically demanded to get endometriosis looked into. I was so annoyed as I explained so many times in previous appointments how I felt and how bad the pain is every month and for years.(with my gp and other GPS) and then the doctor was like yeah you will need to get the gynecologist to look into that, its not normal..... they're supposed to be the doctor! And should have guided me to the right place but I've basically had to tell them how to do their job like I have with other issues I've had in the past.

Anyway so I am basically disabled for at least one day out if the month in extreme pain. This happened to me yesterday. I know its coming every month and I dread it.

The pain sometimes causes me to vomit and have diarrea and has stopped me from going to work/University before.

I am very concerned I can't have children as well as had been off any contraception(for my own reasons) for almost 2 years with no pregnancy.

I have been prescribed the mini pill which I don't want to take but feel it is my only option to help with pain

Sometimes just feel so helpless.

[anhysbys]

This speaks so much to the position I've been in for years. No GP has ever shown any genuine care or interest in resolving my abdominal symptoms, and I was referred to the wrong consultants time and time again before I was finally referred to the gyneac in October 2020.

I hope your gyneac wait isn't too long. Mine was 3 months. My gyneac arranged a pelvic MRI scan for me - (which I had within 2 weeks!) - then when I returned a month later, he confirmed that there were adhesions all over the place, including my bowels and bladder. It was upsetting but also a relief to have endo confirmed.

Unfortunately, the gyneac said that I had to go back to my GP in order to be referred to an endo centre, as there was endo on my bowels. I'm now back playing the waiting game, but at least I'm finally travelling in the right direction, after 5 emotionally draining years.

[Elephy in reply to anhysbys]

Thanks for sharing your experience, sometimes I doubt it is endo and think am I over thinking things but the more woman I speak to who say that is not normal and validate how I feel makes it better.

I really hope to hear from then soon, I received a letter a couple of weeks ago to say I am on the waiting list but no time frame on when the expect to get back in touch. I've waited for 10-15years I'm sure I can wait some more.... 😅🤣