Advocating for an endometriosis screening

[kaylangrish]

There's quite a bit of context for this so please bear with me.

I've recently had an ultrasound to try and work out why my periods have always been heavy and painful (to the point where I'd be unable to go to school/lectures/work) until the last few months (I'm currently 21) where I went on the depo injection (which really hasn't agreed with me but that's a topic for another post).

I'd been to several GPs about my periods and the response had always been "Try hormonal contraception. X medication will make them lighter etc" it was only when I went to have a coil fitted that the nurse told me I should be more forceful about being investigated for endo or PCOS, so when I moved home after the term finished I re-registered with a GP in my hometown who agreed that my periods still being debilitating heavy and painful was something that should be investigated so I had the ultrasound and my GP looked at it and told me that I definitely didn't have endometriosis, nor did I have ovarian cancer but I might have PCOS, and that I should go and have a hormonal blood test done (despite lacking many PCOS symptoms).

A few days after that I spoke to a women's health specialist as I've had some issues coming off the Depo injection. While talking she asked if I'd ever been diagnosed with endo. I told her about the ultrasound and she told me that it's impossible to diagnose endo from an ultrasound alone and that i should go back to my GP and request further testing.

I feel quite anxious about having to advocate because I don't want to make a fuss if it's nothing but at the same time I know that my periods don't feel like "normal" at least not for someone my age and I'm just finding the whole situation (both the advocating and what I would do following on from any potential diagnosis) quite intimidating as I don't want to seem like I know better than a professional. I also know that coming off depo has triggered a lot of other things in my body so wonder if I should wait.

I'm not sure if anyone has any advice but if hey do it would be greatly appreciated xxx

Make a bloody fuss about this because it’s your health and fertility at stake here!. Also no one else is going to. I was your age once with very similar symptoms re pain and bleeding and endometriosis was the root cause. I also have PCOS and that caused my periods to be irregular.

You will need to be persistent in order to get answers. If you keep a daily pain and symptom diary show this to them. Show them evidence of past medications used, it should all be in your medical records anyway.

In the event your parents can pay for you to see a gynaecologist as a private patient for an initial consultation so much the better, I would suggest going private now as NHS waiting lists for gynaecology are miles long.

This GP looked at your ultrasound scan and pronounced you did not have endometriosis!. I would contact the practice manager about this matter and complain . So many GPs are not up to speed at all when it comes to such issues. You’ve been fobbed off by the gps and this nurse and women’s health specialist are correct.

I am also wondering why you were prescribed depo as well.

Endometriosis if it is present is not readily detected on such scans and the usual way it is diagnosed is via a keyhole surgery op called a laparoscopy. This is what you need.

Have a read of Endometriosis UKs website and contact them too. Keep us posted.

https://www.endometriosis-uk.org/

Thank you so much for your response.

To answer a few questions I haven't spoken to my parents about private consultations, the women's health specialist was, but that was a relatively small amount of money. They're currently away on holiday but I will talk to them about it when they're back.

I was put on Depo as an attempt to make my periods lighter and more manageable. I'd had issues with the pill before and my GP at university suggested I have a Merina coil fitted, even though I am a lesbian. I found having the fitting done too painful to go through with and the nurse suggested I took the depo instead. With the gift of hindsight I should have read more about depo before accepting, and the women's health specialist I spoke to said I should've been advised to wait to get the injection as having a coil fitted, or even attempting to have a coil fitted, is a situation where you are very vulnerable and that I wasn't in a position to make an informed decision. Looking back I agree with, I don't feel like I made an informed decision.

I have tried non-hormonal medications such as tranexamic acid and mefenamic acid, one of which worked until I developed severe acid reflux which was made worse by the medication, and like the hormonal contraception didn't actually look at the root of the problem, just addressed the symptoms.

I was thinking I would have the hormone screen my GP wanted me to have, and when I have an appointment to discuss the results then bring up the fact that endo can't be ruled out from an ultrasound and that I did seek a second opinion, who thinks endo might be my issue. I will also look at giving feedback to the practice as I know that I don't have PCOS.

Thank you again for your advice, I really appreciate it. Of course I will keep this thread updated x