Searching for a Diagnosis

[Husky47]

I'm not sure if I belong on here but not sure where else to turn. I'm 21 and have had painful periods since I was 9, but when I turned 16 I began experiencing chronic pelvic and back pain. In 2014 I had surgery to look for endometriosis and have a mirena coil fitted. At the time the surgeon said I was fine and my problems seemed to die down. 2 years ago they came back with a vengance and I have had countless tests and scans and surgery to remove my appendix. Doctors can't seem to agree what is wrong or find anything but they found extensive adhesion scaring in my uterus and ovary. Doctors now think this was endometriosis all along but no one will actually diagnose it and I am on a 3 month waiting list to see a consultant again. In the meantime I can't work, I am on cocodamol and each time that doesn't work I am admitted to A&E for bloodwork and pain management. I am starting to feel like there will never be an end to this or an answer. I want to find a way to move on with my life or manage my pain but don't know where to turn. I'm scared to talk to friends and family as I don't want to be a burden and some don't seem to believe how bad the pain is. I know so many people have this condition but it seems like no one talks about it and my GP seems to just want to keep me happy rather than help me. I read it can take years to get a diagnosis but I am trying to finish university which is impossible when I can't get out of bed as I am a Radiographer, and doctors are telling me to start trying to have children and everything just feels like a mess and I can't find a way out.

I am sorry for ranting but I feel really lost right now. If there is anyone that has any advice or has felt like this please could you help. I am sure I am not the only one to have felt like this but I don't have anyone around me I can really turn to. I never imagined that at 21 my uni experience would involve trips to hospital every 2 weeks and endless painkillers. I'm lucky to have a lovely partner who has supported me but he is beginning to get frustrated that I am giving up but I just don't know what to do. Every step in this journey has been a hurdle and spent convincing people that the pain is real and I am not crazy. I'm scared the longer this goes on without an answer that I will start to believe them.

[Starry]

I think you need to get referred to a specialist BSGE accredited Endo centre where you can get better treatment for the condition than general gynae are able to provide as they aren't familiar enough with this complex disease.

As it has not been adequately treated and recurred you can make a case for bsgr referral to your GP according to the NHS treatment pathway and contract.

"Referral

Patients with known severe disease, which has not been adequately treated or has recurred,are likely to be referred by primary care clinicians. Gynaecologists in secondary care, who identifysevere deeply infiltrating endometriosis or recto-vaginal disease at laparoscopy, or open surgery, will refer patients from secondary care to an Endometriosis centre.

Laparoscopic images and or video, of suitable quality and format will be included with the referral wherever they are available as this may prevent the need for repeat laparoscopic pelvic survey after referral."

bsge.org.uk/centre/

google.co.uk/url?sa=t&sourc...

[Husky47 in reply to Starry]

Thank you I will have a talk with my GP and see what he says