Need advice for getting diagnosis

[Twin4Life]

My sister believes she may have endometriosis. She has suffered with abdominal pain issues for a decade. And, suffers with severe cramps during her period.

But, for the past 6 months she has bee suffering from horrible pelvic and abdominal pain. And, this pain gets worse and worse the closer her period gets. And, then when she is on her period, the pain is at its worst. After her period ends the pain improves slowly until she begins to get closer to her next period.

She was supposed to have an ultrasound through the NHS of her uterus and reproductive tract. But, when she showed up at the appointment, she was told the ultrasound would be of her bladder and kidneys. Her GP has not discussed the results of it with her, but a different doctor said the results were normal, but didn't say what the scan was of. I have complained to the surgery about this issue, but they have not responded. Furthermore, I have read ultrasounds aren't a good way to get an accurate diagnosis anyway.

Does anyone have any advice on what I should do next? Or how I could get her tested for it?

[endo_the_stigma]

Hey lovely, so sorry to hear your sister is struggling so much If I was her (with your help & support) I would go back to the GP and ask them to refer her to a BSGE accredited Endometriosis Specialist (there is a few in the UK so just find the closest to you). It helps if your sister has kept a diary of her symptoms, their severity and how they affect her life (work, social, personal etc) so the GP can't argue that it's not necessary but I'm pretty sure they can't refuse to refer you. She can be seen by the specialist on the NHS, but the waiting times are very very long or she can pay privately. I did this for my first consultation (£200 I think) and he validated my pain straight away and referred me for an MRI which I also paid for (around £370) and this showed Endometriosis which he told me in the follow up as well as explaining my next steps (£170). He said I would need a laparoscopy to remove as much endo as possible, but I could not afford this privately (I was quoted almost £8,000) so he referred me back to the NHS who put me straight on the waitlist for the operation under a specialist who works alongside him but does more NHS work. The whole process of the private appointments and scan took less than 2 months but then I have been on the waiting list for surgery for almost a year now. If your sister does eventually get on the waiting list through the NHS, my advice would be to call every week for updates on her placement on the list, ask to be put on the cancellation and weekend lists (if convenient) and just keep chasing because that's the best way to get seen quicker (this goes for everything on the NHS at this point).

So, in short it kind of depends on your situation but that would be my advice to you both💛

Good luck and I really hope your sister manages to get the helps she deserves xx

[Seinfeldcracksmeup]

This sounds way too familiar with my experience. If the endometriosis is widespread it can be partially detected via a ultrasound but I wouldn't waste your time putting your sister through more months of pain on the NHS and convincing the GP... End of the day they are inexperienced and overworked.

I recommend your sister asks for a MRI of the pelvic area either through the NHS or private. Or she can ask for a EndoSure non invasive test which isn't available on the NHS yet.

Hope this helps.