How to get the right help?

[Calley65]

My 26 year old daughter has been diagnosed with Endometriosis and is also being referred for investigations for suspected Inflammatory Bowel Disease. Has suffered from age 11 and just been diagnosed 6 months ago. Suffers migraines, depression and can't take contraceptive pill due to suspected clot previously. Had Mirena coil fitted 6 months ago but still bleeding and pain. At appt today gynae doc says she is to have 3 monthly injection and HRT treatment but no explanation and very dismissive. Affecting her life hugely as her job involves walking miles per day usually in agony with stomach and bowels. Feel she is at end of her tether. How do we get 2nd opinion or referral to specialist centre?

[weekari]

Your poor daughter. That sounds awful and must be hard for you to watch her suffer.

I don't have personal experience of the mirena coil but from what I've read on here, it helps some women but can make symptoms worse for others. She's clearly not benefiting from it so it's probably time to discuss whether to remove this.

I think it might be helpful to read the NICE guidelines for endometriosis

nice.org.uk/guidance/ng73

It sounds like she's not getting the right care and I find it's best if you know what the guidelines are so you know to speak up when things aren't been done correctly.

I'm assuming she had a laporoscopy to diagnose the endo? When was this? And do you know where it was found, particularly if it was found on her bowel and how deep/severe it was?

If its deep and/or on the bowel then she should be referred to the specialist centre--this is in the NICE guidelines. It's the gynaecologist that would refer her. I've seen on here that some centres will accept referrals from GPs but my referral was bounced back as my centre want it to come from a gynaecologist. So you could ask your GP to refer and see if they'll take it.

Even if it's not been found on the bowl, the fact that she's suffering so badly, it might be reason to refer to the specialist centre.

There's a wealth of info on this site and a helpline with endometriosis-uk so just ask all the questions.