Undiagnosed - help!

[Livvvv]

I was recently hospitalised with what I was told might be endometriosis (undiagnosed). I just wondered how straight forward diagnosis was & how pain management is possible?!

[Moon_maiden]

Hope you’re feeling a bit better now.

If you haven’t been referred by the hospital speak to your GP next week about it, also chat to them about painkillers. It can be a case of trying to see what suits and may depend on other factors.

Personally I take Nefopam, paracetamol and ibuprofen, tend to avoid opiates as have sleep apnoea, but morphine is there as a back up. I do have naproxen instead of ibuprofen in the background as well.

Initially I had quite a quick referral, but cancelled and went private to someone more experienced.

Hope it doesn’t take too long in current circumstances

[Stacey85]

Everyones experiences are different but my diagnosis was a fight. I had to really push to get a diagnostic lap.

She had no choice really because I had been through about 8 specialists all telling me I was fine. All arrows were pointing at endo. Plus I had tried EVERY contraceptive pill under the sun. She told me my symptoms don't match to Endo. When I woke from my lap I was told I had endo in two places.

My experience was bad so I put a complaint in. Lucky for me the clinical director called a couple of weeks ago to talk through my concerns and she has agreed to write a letter to the endo specialists in the city.

I'm praying I can get a appointment with them because I don't trust the general has done a good enough job.

For pain I'm on Naproxen and then over the counter meds. I also take cyclezine for nausea.

[Marcia71]

If you have symptoms that suggest endo, which sounds like you do, then your gp needs to refer you to a gynae with at least a special interest in endo. This is as per NICE guidelines. Then once diagnosed if severe endo or in certain places then you need to be referred on to tertiary endo centre. They are. Called BSGE centres.

As to pain killers most gps can help. Codeine is often their starting point or naproxen. Tramadol and oramorph are opiates and next step up if you need more.

[Livvvv in reply to Marcia71]

Thank you so much for this. It seems to have been getting progressively worse the older I get. A lot of the professionals I’ve come across over the years have sort of swept it under the carpet as ‘bad period pains’, jumping to the conclusion that I don’t deal with pain very well. I managed to get to A&E but ended up fainting on the floor before I could tell them who I was. I’ve made the decision to go private to try & speed things along.

[Marcia71 in reply to Livvvv]

Just make sure they are an endo specialist. I started down the private route and got the diagnosis I needed but I wasn’t referred onto a bsge specialist centre as I had severe endo and my treatment caused many more problems. Only sorted out by nhs after finally getting to the right specialist at a bsge (endometriosis) clinic.