I've joined as I'm feeling pretty sorry for myself endo-wise, and I'm looking for a community who understands the kind of pain endometriosis causes.
I was diagnosed at 18/19 with endometriosis after a few of the usual years of battle to get a firm diagnosis. I had a laparoscopy to diagnose and then treat the endometriosis I had at that time.
I'm now 24, and I haven't seen anyone about my endometriosis in years. I have never had a specific go-to doctor for my endometriosis, as the Consultant I previously had I left as soon as I had my laparoscopy as she wasn't a helpful or understanding individual. The only reason I succeeded in getting the surgery was my Father pushing for it, as we had gone private to get a diagnosis and he basically pushed his weight around to stop her trying to peddle off the next pill which wouldn't work, and ignoring the fact my endometriosis was causing some very significant issues in my life.
Fast forward to now, I came off the microgynon pill around a year and a half ago. It had stopped working for me, no longer masking symptoms or pain and causing very infrequent periods and spotting. I also am hypermobile, and it was feeding this, and unfortunately endometriosis and hypermobility play into one another perfectly.
The reason I'm writing this today is mainly to just talk, get some advice of what to do next, and to have a 'woe is me' moment. I'm not so good at them, and honestly I prefer to attempt to live as if I don't have a chronic illness (or two) a lot of the time. At this current time I'm going through one of the worst flare ups I have had in years. Yesterday I fainted, which was the first time since my laparoscopy, and today I've just been in agony. The last thing I want to think about is the knowledge that I need to go back to the doctors, but I know this is my next step.
Last time I went back to the doctors they wanted to put me back through all of the routine testing, which I just wasn't prepared to do - I don't see why I should have to 'rule out' other things or go through painful tests (like an internal ultrasound) when I am diagnosed and I'm well versed in the condition to know what the pain and the cause is. So, has anyone else experience that and how have they got around it? Simply, what is the best way to get straight to a specialist in endometriosis through the NHS?
Some coping mechanisms for flare ups would be really useful too. Currently I lie down, a lot, occassionally go for a walk if I can manage, cuddle my dogs, and take a look of cocademol or ibuprofen/paracetomel if I haven't got a prescription filled. I try to eat healthy, but during flare ups I find this much harder simply because the pain is often too great to stand and cook as I live alone, no one can do it for me, so I often end up picking at food or ordering a takeaway. I can't do yoga as stretching flares my hypermobility - which is a double pain as during times of endometriosis flare ups, I go through hypermobility flare ups too.
Sorry for the long post, and the general woes, just hoping to talk to a community who get it really. It can be hard being in your 20s with a chronic condition, among very healthy (but lovely!) friends who just don't quite get why you have to rearrange, yet again...