Diagnosis

[FarmerA]

Hi, did anybody else struggle with getting a diagnosis? I went to doctors countless times in my last years of primary school and first couple years of secondary school after I started getting my period, my chronic pain was just shrugged off as me playing up even though I had really heavy bleeding. I ended up in hospital 5 times because of extremely painful periods and only then was it because a nurse suffered with it was it that it was investigated. I lived with the chronic pain and extremely painful periods for 5 years before a doctor actually believed me and took me seriously and even now I don’t think they truly understand the pain we go through and how much it impacts your day to day life.

[Chloehawkins_]

Hey! So sorry that you’ve had to go through all this. It’s taken me 9 years to get a diagnosis, I’ve had 3 surgeries, countless types of contraception, doctors and a&e trips, you name it. I got diagnosed this year through a laparoscopy after finally getting referred to the hospital by my GP last year. It’s a really long process but it will be worth it in the end - just keep persevering and do not let anyone make you feel like you’re crazy (something I had a lot) or anything like that. Good luck!

[FarmerA in reply to Chloehawkins_]

Thank you hope everything goes well for you in the future x

[PurpleSynesthesia]

I was 13 when I started menstruation & it brought me to my knees in my food tech lesson - a Thursday morning, just before Easter - & sent me to the matron's office (who shut me in sick bay & ignored me). I was howling & crying in pain for hours & ended up going home in a taxi😳 to my nan. She took one look at my face & told me that I'd started my period & gave me a hot water bottle & Paracetamol. (Thank goodness I hadn't bled heavily this first day)! I remember it began with a mild back pain that got stronger & tighter, spreading to my lower abdomen & legs.

Thus began the painful years. A couple of tastes of early-labour-style pains every month & a host of other 'appetisers' to compliment the mains.

Brushed off by every doctor as 'normal' & all other pains were attributed to IBS. Ovulation pains got worse & worse each month, but that got blamed on scar tissue from my appendicectomy.

Anyhow, I'm now 35, I have received a "sounds like endometriosis" from a gynaecologist & am waiting for my laparoscopy appointment, after having yet another (useless) transvaginal scan.

Where are you on your treatment journey?

Xx

[FarmerA in reply to PurpleSynesthesia]

I have been on contraception for 3 years waiting for treatment and now deciding if I should go private and see a specialist in Endo. I can’t imagine the suffering you went through for so long 5 years before being believed was 5 years too long for me. My pain was blamed on my removal of my appendix too. I am so glad it is being talked about more!

[mrskiki]

Yes, finally diagnosed almost by accident, 35 years after first raising problems with doctor.