Hi, I'm new to this and to be honest I don't know where else to turn so I thought I'd ask people who have been through it all!
I started getting my cycle when I was about 12 or 13, and it was irregular. It didn't come back for 6 months then 2 months and so on, but once it got a bit more regular it got heavier and more painful to the point I was constantly leaking and often had to leave school. It's generally more on the first 2 days of my period, but things escalated back in 2013 when I went on a uni open day.
I was on tranexamic acid and mefenamic acid but I'd been finding they were starting to stop working, and I could feel how sick I felt. I got spots in my vision, my ears were buzzing and I felt too hot and ended up collapsing in a stairwell. I was sick, the pain wouldn't stop and it wasn't until builders found me and the staff called an ambulance that it began to subside. (It always seemed like after these most painful moments it subsided a bit) I was sent to the GP and put on bionovum and told it was probably just hormones. I've been on 5 different pills and only the one I'm currently on has worked in any way - but now the pain is starting to come back and I'm starting to be unable to get out of bed on the first day or so. I didn't collapse for a while after that but it happened again when I went on holiday a year and a bit later, I was sick and couldn't move. Then it happened the next month, and the next.
I'd always get pain in my legs and in my hips, it felt like there was no blood flowing in the lower half of my body it felt numb and achy and now that's starting to come back too, but none of the GPs have listened, or the nurses. They said it wasn't worth the hassle being referred to anyone, but I don't know how much longer I can go on waiting for the pain to come back so badly I collapse again. I've started getting just general pain in my lower back a lot of the time and dull cramps every few days, (tmi maybe) as well as bowel problems which seem to be getting worse.
I'm 21 now, and I really just don't know how to get anyone to listen? It doesn't just feel like hormones!
First of all. We believe you. We understand.
Second of all change gp! Find someone who will listen, read the N.I.C.E guidelines on endometriosis diagnosis and treatments print it out take it with you.
Thirdly, Then make sure you are referred to an endometriosis specialist clinic, there are lists on any that are closest to you. I had to travel an hour and a half to one for my treatment after being treated diabolically at a ‘general gyena’ department, the risk of them not finding it or successfully treating is too high.
X
Thank you that's really encouraging to hear, I was starting to think I was just a wimp and didn't deserve to talk to anyone about this! I'll have a look at lists closest to me so I know what I'm dealing with, I've heard so many stories now of people missing it so I want to know it's done properly - and thanks for telling me about the guidelines I'd never actually seen them before! x
You are very welcome x