My family were thinking I couldn’t have anything more wrong with me, I just kept racking them up.
At 35, I had started to have problems with my bladder, I couldn’t hold on and would leak if I didn’t get to the toilets in time. First I was told it was stress incontinence and then I was told, actually it could have been caused by nerve damage with pernicious anemia (I had been left a long while by my then doctor, and nerve damage had been done) if I hadn’t been with Beneden Health care I’d probably be dead by now with that particular doctor.
I was given exercises, but it didn’t work, I had to resign myself that I was partially incontinent.
So why am I telling you that???? Well actually it has a lot to do with what I have later…Lichen Sclerosis
So far then to a fee years ago, I have had multiple kidney stones, one needing lipotripsy and the others needing surgeries. Last year I had 2 surgeries in 4 weeks for my stones. I collapsed in pain in february and they found I had stones. I wad booked in to have them removed but had too many, so a stent was put in, three weeks later (couldn’t have come quick enough, I had the stent removed and the rest lasered.
I’ve had GCA known as Giant Cell arteritis and put on 2 stones thanks to prednisone 80mg a day.
I started to see women doctors has I kept itching below about 6 years ago. I had just started to finish my periods and was finding I was dry, but feeling like I was walking with glass in and around my vagina. I was always given canesten or fucanozole, but it wouldn’t stop I used to be oversexed, now I wasn’t interested, it hurt everytime and yet I kept getting told its the menopause. Then before lockdown I saw another female doctor who examined me, she had to ask advice from another doctor has she had never seen it before. Though I didn’t see who she spoke to and they never saw me, she came back in the room and said she was almost certain I had Lichen Sclerosis. I replied OK and thought it was like thrush. She said she would refer me to a specialist.
Three years later, I go into the doctors because my clitoris has disappeared and I look wrong down below. She checks me and says she will push for the consultant.
Unfortuanetly, when I was originally supposed to see her last year, I caught covid, so she said she will do a phone call appointment. I explained everything and she said it sounded like Lichen Sclerosis and that she will see me in December.
December 2022, starts of horrifically, 2nd December I go to see the doctor because I have pain in my legs and arms and my back after two years is so painful I can hardly move the top of my neck and shoulders for hours and it’s been getting worse, my sjogrens is worse and flaring with extra dry mouth and being sore She checks me over and says I have all the signs for multiple myeloma. I’m sent for blood tests and scans. The scans cone back, no multiple myeloma, but I have osteoporosis quite severe on my lower spine (my top half hasn’t been scanned)
I go back exactly a week later on the 9th, only because my throat is so swollen and I have white on the back, I’m struggling to swallow. On seeing the doctor, she examines me and tells me,”your blood results came back, your high on certain things, but it’s not multiple myeloma, however you do have diabetes type II, but will need another blood test to confirm it and looking at how long your throat has been bad and how bad it is now, I think you have throat cancer”. I come out numb. 2021 sweet my sister in law die of ovarian cancer in January, June my dad died of lung cancer and then in September my brother got diagnosed with cancer of the osephagus. I have got a fear of the disease and now it looks like I have it.
I have to wait for an appointment from the specialist. . Decemember 22nd the ENT specialist phones early and I’m grateful. Though he hasn’t seen me, what I’m describing is what my husband and I suspected, a bad sore throat that has gone on longer because I have long covid, but he will see me in a few weeks to make sure. I feel happy, but while I’m getting Christmas stuff out to lay the table, I suddenly have problem with one of my eyes, I can’t see properly and there is shadows moving.
We phone several opticians but at 17.30 its shutting up time. Thankfully one tells me to come in first thing in the morning, but to look out for certain things and if it gets worse go straight to hospital. Neither my husband or I slept all that night. We get to specssavers and they do loads of tests, thankfully not a detached retina, but she said it could go anytime in the next few days if it is to go, but I have lots of flashes.
Relieved that I’m not going to be in hospital over Christmas, we enjoy our Christmas and in fact ot was one of the best I’ve had. December 29th I see the throat specialist and after a tube up my nose and down my throat I’m given the all clear.
Living with autoimmune diseases and Lichen Sclerosis 
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