I received a letter from the Rheumatologist yesterday regarding my recent MRI scan of hips and pelvis, carried out because of hip pain and stiffness. The good news is the bones, joints and muscles all look great. At least, it should be good news but to be honest I’m just left feeling frustrated that I’m in constant pain and so stiff I can’t even bend down to put my socks or shoes on anymore, let alone cut my own toenails, but yet again no reason for my symptoms could be found.
The bad news is I have a “very large” ovarian cyst, which came as a bit of a shock. It shouldn’t have. I started having lower right abdominal pain about 15 years ago. I was convinced then it was either a cyst or endometriosis and asked to be referred to gynae. I had an ultrasound, where they found a 2cm cyst, which they assured me was cyclical and was never followed up. Turns out they probably should have, cos the fucker is now BIG (won’t know how big until I’ve heard from Gynae). I am livid.
At the time they offered me a laparoscopy to check for endometriosis, but they refused to do it under epidural and, as I’m allergic to general anaesthetic, I refused. Of course I didn’t have my Mast Cell Disease diagnosis then, and all the doctors I told about my drug allergies just thought I was anxious and needed to get over my fears of surgery I know that’s probably a common story for all you other MCADers out there.
So I’ve lived with 15 years of increasing pain: horrendous pre, during and post period pain; back pain; bowel pain; bladder pain and just general burning all-over pelvic pain. As no-one could tell me where the pain was coming from I just put it all down to my MCAD and EDS – turns out, nope, huge cyst continuing to grow, pushing my organs out of the way and pressing on all sorts of nerves. Did I mention I was livid?!
I’m not particularly concerned it’s a cancerous cyst, though of course it’s in the back of my mind, because after all these years it would have killed me by now, but I won’t know what kind of cyst it is until I’ve seen the Gynaecologist.
Surgery is going to be a little scary, though having Googled the situation it appears I can have the cyst removed under epidural just like having a C-section although it involves having to cut me open rather than doing keyhole (if they do keyhole they have to pump you full of gas, which pushes on your lungs, so you have to be knocked out and ventilated). Of course this means a much longer healing time but that’s just the way the cookie crumbles. My biggest worry is pain control, though I’m hoping Lidocaine patches will be OK – please don’t suggest drugs of any description, just trust me when I say I’ve tried ’em all and am allergic to the lot, including gabapentin, antidepressants and even acupuncture!
Soooo, we’re not even in 2016 yet and I’m already facing two surgeries – that’s something to look forward to then!
The most annoying part is that having a cyst doesn’t cause your hips to be stiff. Yes it can cause some localized groin or thigh pain, but nothing like the pain I have in both hips not to mention my sacrum. But the Rheumy has passed me to to gynae and kind’ve washed his hands of me. So I’ll have to have the cyst seen to, recover, then ask to be re-referred to him for my hip pain, which is just crazy and means I’ll have my third year of pelvic stiffness, discomfort and increasing disability *big sigh*.
My head is still a bit all-over-the-place from the news but it’s pointless worrying about any of it so I’m not going to and that’s the end of that 😉