ENDOTIMES

[Kavyaa]

Hi everyone, I'm a designer and I'm working on making a board game around endometriosis to spread more awareness about the condition and to strike a positive conversation about the same. I would appreciate any opinions and stories of fellow endo warriors. Thank you.

[charlatan]

Okay. In a nutshell - been going to countless GPs since I was 13 (I'm now 33). Told them my periods were irregular and excruciating. Was sent for countless blood tests and scans but they found nothing. As I'm sure you know, endo can only be found after a laparoscopy. I was told time and time again that my pain was just bad period pain and I was just unlucky. Aged 29, I stepped out of the shower and collapsed with the pain. I screamed for almost 2 hours straight (except for the 2 times I lost consciousness) while my fella and I waited on an ambulance. Did a lap in hospital and found nothing... (The plot thickens.) Was sent home and couple of months later, ended up in A & E again. When my fella called 999 was told they would be hours. He called a cab instead which got me to the hospital in 15 minutes. Why bother with the emergency services? Anyway - the doctor I saw suspected it was endo and despite being confused as to how it was missed during the lap, referred me to an endo specialist. Endo specialist said he didn't think it was endo but would book me in for an op to drain a cyst that had been found on one of my ovaries. Didn't make it to the op. Ended up in A & E again. Through sheer luck, the endo specialist was on duty and opened me up. He drained the cyst and removed some endo tissue from around my ovaries. He was pretty embarrassed when he came to see me after I came round and told me it was the worse case of endo he'd ever seen. Clearly, he had been very wrong when he told me I didn't have it. It seems the endo was so extensive that during the first lap, it seemed like a 'smooth' surface so seemed normal unless you really knew what you were looking for. So- I was referred to a specialist hospital and am currently under the care of one of the most renowned and respected endo doctors in the UK. Was due to have a 'complex and extensive' surgery to remove the endo tissue but covid came along. So, instead, I am having excruciatingly painful shots in my stomach every 12 weeks and am popping morphine in an attempt to control the endo while I wait until who-knows-when for my op.

[Malachitegoose in reply to charlatan]

Wow! I'm so sorry you've been messed around so much and you're still waiting. I'm in a similar situation, though I'm not on morphine. I was told definitively by gynae I didn't have endo when my anaemia/dysmenorrhoea was being investigated. I hadn't had a lap then and hadn't been asked about endo symptoms. Endometrioma was found during endometrial thermal ablation surgery where I had requested lap sterilisation. I was apparently told immediately post-op but I have no recollection of that (cause of GA or maybe he never said it cause he was too embarrassed!!) Anyway gynae subsequently said I can pick treatments independently by looking on endo support websites and have treatment managed by GP, though GP stated they could not do this as they need a letter of recommendation from gynae consultant. I've spent the past 9 months chasing an appointment with gynae and have finally got one through occupational health in same health board (which I work for) expediting twice, tracking down specialists phone number and requesting to see him, putting in a complaint and speaking to my local assembly member/politician.

[charlatan in reply to Malachitegoose]

Unbelievable. We have to suffer with the most incredibly painful condition and are continually getting messed around. I've always found my GP to be useless. She once told me that nausea was an 'unusual symptom of endo'. How is it?! It's as common as pain. She should google it once in a while.