Undiagnosed yet any tips?

[Oceanmaid]

Hi, I just thought I’d reach out on here. I’ve been struggling with periods my whole life but just thought that was the norm. In the last few years I’ve been getting worse, mainly the fatigue and I’m 27 this week. I’ve got a lot of the symptoms but the bone pain is the one that absolutely cripples me. The fatigue is horrible too but I find I can just manage if I’m not having to work ridiculous hours.

I have a demanding physical job going out on different fishing boats and I’ve found my work is being severely impacted.

I was referred to gyny last year and was told I would be a candidate for the diagnostic lap. I’m on the nhs waiting list and I’ve had the transvaginal ultrasound but that didn’t pick anything up.

I have no idea how long it will take for the diagnostic lap they said they couldn’t even give me a rough idea of a timeline but I’m on the cancellations list.

I wondered about trying to go privately but just to see the consultant was a very long wait and I’ve had an apt with the same guy through the nhs.

Has anyone had an MRI on the nhs or private to diagnose Endo? I wonder if I could try to get one of those in hope that when they do open me up they’ll know where to look and possibly be able to treat it there and then?

FYI I’ve got white coat syndrome, terrified of operations. I get really upset when I think about it all so just try to push it out of my mind which is impossible when you’ve got the symptoms. I’m a coeliac and have terrible pain in my stomach despite following a strict GF diet. I feel my health is such a mess and everyone keeps telling me I really need to do something about it because I look ill.

Sorry for the rant!

[Racheyt]

Hey! Hope you’re well. Your story sounds like many others so you’re in the right place for support.

I have had an MRI scan through the NHS and private and nothing was found. I am led to believe the only way to truly diagnose is through laparoscopy, as tissue has to be sent away for verification of endometrial cells. I had my lap done private as waited on the NHS too long. I am fortunate enough to have health care insurance through work and went with Spire who were great. The procedure was under general anaesthetic and was no bother.

The recovery after the lap was brutal for the first two weeks but I’m glad I had it done. Getting a diagnosis and peace of mind was the main thing. It has explained why I’m so ill with colds and flu because it’s a full body inflammatory disease which impacts your immune system.

I also had the Merina coil fitted during surgery under GA. My periods are now like clock work every 28 days lasting 7 days. Less painful and less heavy bleeding. In my 33 years I have never experience this as before they were so sporadic.

The lap process can be scary if you overthink it but you’ll be in safe hands and hopefully will give you piece of mind also.