Battling the doctors / suspected endo?

[Cursedperiodgal]

Hi everyone,

Ever since I first started my periods at the age of 13 (20 years old now) I have suffered with severe painful periods. Sometimes my periods haven't come for months, but recently I have managed to get them regular by dramatically changing my diet. Most months I throw up constantly all day, pass out, go hot and cold, have a severe stomach and back ache, bowel problems and sometimes even loose my hearing. For the rest of the month, I often suffer with bloating and some bowel problems. I have battled the doctors for years with this as they don't seem to take it seriously - they said I would grow out of it but years later it's still happening. I was on the pill for a bit which seemed to help the pain but had a lot of other side affects that didn't agree with me - it also didn't tell me why I was having these severe periods that mean I have to put my everyday life on hold and make me live in constant fear of my period? So recently I pressed the doctors for a referral to a gynaecologist and he diagnosed me with POCS (Polycystic Ovary Syndrome), however I have more symptoms of endo than PCOS and he didn't really want to even look into the possibility of endo. I am going back to the doctors to try get another referral for a laparoscopy as this will be the only way to tell for sure. Just wondering if any of you with endo suffer with similar symptoms and how long it took you to get diagnosed? I'm so sick of being called a 'drama queen' for having to have a day off work almost every month with my period. Nobody seems to understand and I am desperate for answers as I think it's starting to affect my mental health.

Thanks x

[Kirst625]

You poor lovely, you're really going through it aren't you. Similar situation here in terms of battling for a referral then a bigger fight to get signed off for a laparoscopy, but then got discharged after clear scan - which was incorrect practice by them. I ended up taking the matter in to my own hands and finding a consultant myself. My bowel and digestive symptoms started before periods started getting bad so I'd been given IBS diagnosis but knew it was much more cyclically linked. Had a laparoscopy 3 weeks ago and I did indeed have endometriosis! Not suggesting you will have to go the same route as me but just to show it can be a battle, but that you know your body and what is right or wrong so trust in yourself. Use the templates on the Endo UK site for preparing to see a specialist including keeping a diary of symptoms as evidence. Read the NICE guidelines and take them to your doctor, you must be seen by a gynaecologist with a specialist interest in endo at the very least but if its suspected you may have bowel involvement then you would meet criteria for referral through to a BSGE specialist centre.

This is a good article:

bbc.com/future/story/201901...

Best of luck and keep reaching out to keep you feeling not so alone and unfortunately give you the strength the fight can sometimes need x

[Cursedperiodgal in reply to Kirst625]

Thanks for your reply!

Sorry to hear it was also such a battle for you and that you have been diagnosed. However, at least you know now and you knew something wasn't right! I will definitely be taking the NICE guidelines to the doctor with me tomorrow.

Thanks again for sharing your experience - it's so nice to find someone who understands the situation! xx

[Europa23]

I was also misdiagnosed with PCOS for over 12 years. It was only when I changed consultant in a different hospital that I got a diagnosis of endometriosis. It really was lucky that I managed to see a different consultant as it made a huge difference to not be treated for something I didn’t have. I would go back to your GP and request a referral to a hospital of your choosing. Most hospitals have a list of consultants and their specialities on the website so I’d have a good look and see what is available locally for you. Good luck!

[Cursedperiodgal in reply to Europa23]

Wow sorry to hear that! Some of the ladies in the PCOS foum said to that doctors often misdiagnose the symptoms of endo and assume it's PCOS. I'm glad you managed to get a proper diagnosis after such a long wait! It gives me hope that hopefully I will too one day. I'll keep pressing the doctors!

Thanks so much for your reply x

[Europa23 in reply to Cursedperiodgal]

Just be forceful and make sure you get the treatment you deserve. I was often given appointments with registrars not consultants too who seemed to spend most of the appointment reading the notes from the last appointment. I have now insisted on seeing the same consultant each time too which makes me feel better!