How can I cope with all this waiting for medical tests?
I apologise in advance, this might get long.
I’ve been debating for a while whether or not to post about this, today I’ve decided to bite the bullet and post it, as I’ve just come back from the clinic and I’m feeling pretty scared and shitty right now.
Four months ago I had a bad urinary tract infection which made me very severely incontinent. Two courses of antibiotics later, the infection went away but the incontinence remained. Basically, I have absolutely no bladder control or sensation at all any more. I can’t tell when it’s full, I have no “urge” to go, I can’t go voluntarily, it just happens whenever and wherever it wants to. (Before you ask, yes I have to wear a nappy/diaper at all times).
Today I went to the local incontinence clinic for some tests, an appointment I’ve been waiting three months for. I’ve been told that I have cystoplegia which is basically a flaccid or paralysed bladder, and also a paralysed urethra. The cause is as yet unknown, but usually it’s caused by injury to or disease of the lower spinal cord. So I’m being referred to the hospital for more tests, both urological and neurological.
It’s not related to the hormone treatment I’m on (I already checked about this with my endocrinologist), and it won’t affect my trans treatment. What’s bothering me the most is I’ve also developed some other symptoms of Multiple Sclerosis and that is quite scary. And from the research I’ve done online, MS is the least scary of the possible causes.
So I have all these unpleasant “what-if’s” in my head. How do I cope, in the long months it takes waiting for appointments and tests? The NHS is notoriously slow. How do I stop fearing the worst?