BSGE APPOINTMENT IMMINENT

[Stacey85]

Hey,

After a long old wait and my symptoms getting so bad that my GP and the cardiologist I saw in A&E has push my referral to urgent.

When I say long wait I had a diagnostic lap done in March by a general gyne that I made an official complaint against! Pre op she told me I didn't have endo and non of my symptoms were endo symptoms. She also told me I wouldn't get endo symptoms on the run up to my period, always after.

Low and behold I had endo on my uterosacral ligament, on my bladder and inside my cervix.

She told me she removed it from my ligament and left the rest and when I asked about a referral to the BSGE centre she told me I didn't warrant a referral and I was discharged!

I went to the clinical director about her and called PALS. The clinical director wrote to the centre and they put me on their waiting list.

I wasn't expecting their called today to say we want to do a face to face with a multidisciplinary team March 18th! I'm now a little scared.

What should I expect? will they want to do another lap? I can't take any contraception because we've been trying for a bay for around a year now, so im suffering so bad with endo flares every month.

xx

[TennisAM]

Hey, sorry you met that "professional". As you can't take any contraception you will probably need another lap. Hopefully you're in good hands now and it will be treated correctly.

I know you still have a lot of endo to treat (so alternative treatments may be less effective) but I am happy for you to message me if you want the details. I've done a lot of research. Please send me a private message as endo uk don't like links to other websites posted publicly.

[TennisAM in reply to TennisAM]

I should have said, no need to be scared, ultimately your health comes first and you need this sorted xx

[TennisAM]

Can I please also ask, do you have endo related heart issues, if you don't mind me asking? I've been having tachycardia which is far worse during my periods. My GP acknowledged that it could be linked to the endo. Little worried that no one is going to work it out

[Moonglo]

Write a timeline which includes everything: what your symptoms are, when they started, their frequency. Include treatments (what painkillers, when you have to take them, surgeries) and your levels of pain (scale 1-10) and mood. It will be easier to remember more recent things, but if you can remember approximate dates further back, that’s helpful too.

If you write these things down it will help you focus on the issues and hopefully you can get an idea of what you want. Ask yourself what you want (to be pain free? To have a baby? To get rid of your periods? Etc)

It is your opportunity to answer their questions to the best of your ability, but also to ask them what treatment they can offer. Remember you are the expert of your own body, the doctors are there to assist you.