Hi everyone, I've been lurking on here for a while but I'm going to be brave and ask my own question, it's pretty long so sorry in advance.
I have been suffering with BD symptoms for years (mouth ulcers regularly since age 5/6 and majority of other symptoms developing since late teens and after the birth of my first child) but have only been seeing consultants for my problems for the past 7 months. I had been trying to get referrals from my GP for years but he wasn't interested as I'm sure most of you can relate to. I started by seeing a Dermatologist for my mouth and genital ulcers and skin lesions, she then referred me to an oral surgeon to have a biopsy of my mouth ulcers (they cut a whole ulcer off my tongue!!) She now wants a biopsy of my genital ulcers but trying to get an appointment before they disappear again is proving impossible and everything has come to a standstill. I really don't want this biopsy as the other one hurt like hell and having to repeatedly make appointments and worry non stop, only to have to cancel as the ulcers are gone, is driving me insane!!
The Dermatologist is the only person that believes I have BD, she mentioned it before I did, all other Drs completely dismiss the idea because it's 'so rare' and look at me like I've been Googling random tropical diseases or something whenever I mention it My other symptoms are getting worse, mainly joint problems at the moment. My hips, knees, ankles and wrists are bad but this last month my fingers have become very painful and stiff. Do I keep going back to my GP or back to my consultant? She keeps on about the other biopsy but trying to get one could take ages and I need help now!
I've had all the bloods for allergies and things but everything comes back clear. I'm currently on Diclofenac for hips and knee pain, I have mouthwash and steroid tabs for mouth ulcers and my GP prescribed Tramadol so that I could get some sleep when I have genital ulcers as the pain is so bad but I also sometimes use when my joint pain is bad. I'm only 26 but the last year has seen a dramatic increase in frequency and severity of my symptoms so I am starting to worry about how bad it's going to get. I have 3 children and feel like I can't do much with them at all. Pushing one of them in a swing left my wrists extremely painful for days. How can I move things along? I'm so fed up!