Newbie:trying to get the diagnosis

[traveller_]

Hello everyone, I hope I’m in the right place. For the last 5 years I’ve suffered with all the classic endometriosis symptoms (very heavy long periods, excruciating pain, vomiting and fainting during my period etc) and have struggled to get listened to by my GP. Back in June after fainting in the middle of work on the shop floor I booked another GP appointment (I gave up about 3 and a half years ago) and requested a female GP to try and make more progress.

She said I needed an ultrasound to look at my ovaries which I had today (3 months later). Thankfully my ovaries are fine with no cysts or anything and the sonographer said that since endometriosis often can’t be seen on an ultrasound it is almost certainly that but that I would need a laparoscopy to get diagnosed. She said that the NHS isn’t doing them at the moment due to COVID and that even when there’s no COVID they’re very rarely done.

So now I feel a bit stuck. I don’t have an official diagnosis nor any idea of how to get one. I’m starting my dream grad job on Tuesday which I worked extremely hard for. However the first six months are probationary and I understand that they don’t look kindly on days off. I don’t know what to do as I don’t have an official diagnosis but I know it’s likely that I will have to take days off every month when I’m unable to walk, vomiting and passing out in pain.

Does anyone have any advice on either how to go about getting a diagnosis or how to approach an employer about your condition when you have nothing confirming it from your GP?

Thanks so much

[Moon_maiden]

Hi

You've not had it easy in getting help, unfortunately it happens all too often. I spent last year back and forth to GP, after an ultrasound picked up fibroids I insisted on an urgent referral. Although I did get this, I ended up paying privately so I could make sure I saw the main consultant, not a registrar.

Don't let the sonographer put you off getting a referral, tell your GP you want a referral asap as you are unable to live a normal life. There are operations going on although it seems to be some areas more than others. Seeing a consultant who is experienced in Endo will at least give you some answers and a way forward. If you can afford it or have health insurance it might be worth doing it. As I paid directly I didn't need a referral from the GP.

Look at the Endo UK site there is some valuable information about employment and consultation. Also the NICE guidelines for Endo are useful.

Speak to your GP about pain management as well. There are various things to try, ask them about laxatives in the run up to your period, this may help if you have difficulty with your bowels. There are natural ones such as senna. This could be what's causing some of the pain. It could be a bit of trial and error. If you try Naproxen, they tend to reccommend that you start a few days before you are due. The pain nurse gave me Tramadol and I already had oramorph. If you want to avoid opiates, ask about Nefopam. It worked a little after op.

Good luck, let us know how you get on.

[traveller_ in reply to Moon_maiden]

Thanks so much for your reply and wonderful advice! Unfortunately currently I don’t have the money to go private as I’ve just finished uni and only worked part time, although now I’m entering the full time working world I hope I might be able to save up as I’m just not getting anywhere on the NHS.

I will definitely read up on employment on Endo UK and make another GP appointment to look into symptom management. If I can manage the pain enough that I can function normally and work every day of the month then I feel a lot more relaxed about waiting a bit longer to get the actual diagnosis. Thanks again for your help, it’s much appreciated!

[Moon_maiden in reply to traveller_]

Let us know how you get on with GP, try not to be put off requesting the referral as well.

Maybe a relative could do an early Xmas present, bit of a waste though when GP should help. 🙂

[evickery1]

I genuinely think your doctor is telling some fibs there. The whole laparoscopies are rarely done comment, I mean you'll 5 figures of ladies in this group who have had one...

The tough thing to remember is the NHS work on a box ticking exercise, you'll have to prove that its not X and it's not Y before you'll get to a NHS Gyno to request a lap. I had the ultrasound, I then had to prove it wasn't IBS and it wasn't an STI. The only piece of advice I can give you is to keep pushing. I'll send you a message about some of the things I said to my GP to order them to send me to a gyno.

Alike to when you try and get life insurance, you'll get rejected because you're "in the middle of a medical investigation" and that's what I told my workplace. You'll have to explain this to HR at some point because you will be having many appointments to prove you have endo. With the current climate is there any chance you can request home working for that week?