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I am feeling scared and alone and would be grateful for any advice/support.
I have an appointment with a urologist at my local private hospital this week(long NHS waiting list).I believe I probably have IC as I don't see how it could be anything else but I'm panicking as I know that its incurable and if it is that I feel like my symptoms have worsened:( I'm in my early twenties.
I am so scared what they are going to say or think of me (I've seen doctors before who treat me like a hypchondriac and just refuse to take me seriously no matter what I tell them). I also find consultants intimidating.
It all started off with needing a wee more frequently out of the blue and getting a twitching sensation in my urethra back in July last year, very strange feeling..would feel like pee was about to leak out. I would have no incontinence or pain, it just felt kind of urgent like I couldn't hold on for as long as usual. It went on for a couple of months so went to see my GP, they said I probably have an overactive bladder and sent me away advising I change my diet and do pelvic floor exercises. I accepted this and tried to put it to the back of my mind.
About Christmas time I noticed a deep throbbing ache in my lower mid-right pelvic area, next to my bladder, whenever I drank anything (water, squash etc.), it would feel like I could feel my bladder filling up. even though the pain wasn't directly on my bladder. It always happened when I drank anything. I still had the above symptoms alongside this. Went back to my GP who prescribed me with OAB medication which I tried for 4 weeks. I still had the aching so they prescribed me with a different type which again..didn't really do much. I've had a pelvic ultrasound to check my ovaries as well as a bladder ultrasound which both came back normal. At this point, my GP started implying this is all in my head and that its anxiety related which upset me to say the least..
As time went on, I developed some new symptoms. I had this awful pressure/aching in my rectal area which I ended up seeing a colorectal privately for as the aching was 24/7. During this time, the pelvic ache/urinary frequency wasn't so bad and had pretty much stopped so I stupidly didn't make a big thing out of it when he examined me, I did mention it but he didn't seem to think the two were linked. I've also had IBS symptoms on and off since about June which seems to be worse a week or so before my period. He said I have something called proctalgia fugix with possible levator ani syndrome which is related to the pelvic floor, prescribed me with diazapam for this which worked really well, but wanted to do a colonoscopy to make sure the aching in my pelvic area/bowel symptoms weren't anything sinister. (This never went ahead as my heart rate was too high due to anxiety of having the procedure done but surgeon concluded he thinks bowel issues are just IBS).
For the past couple of months, the aching next to my bladder has got worse/more constant. Before this, it wasn't occurring on a daily basis and would sometimes disappear for weeks. The past week, the throbbing ache has also been more central /intense as if its actually in my bladder this time. This is worse after I have drank anything and continues until my bladder feels full. It feels like someone is pressing hard on a bruise once every few minutes. I look back to this time last year and things are definitely worse, I have been measuring my pee where possible as I'm guessing the urologist will ask. I can hold maximum about 350ml of pee but usually void between 200-250ml. I don't have any pain when I pee and my urine stream is average. I don't know whats wrong with me and the IBS symptoms suck as well and have developed over time with this, I feel like the two could be related but I'm not sure? I haven't felt right in months, cry constantly and just feel like there's no way out anymore:(.
I am awful at explaining things to the doctor and when I get there I am a nervous wreck, I just hate it:( even if I write things down, I feel like as soon as I start talking I am interrupted and I just lose control of the situation. This then makes me emotional which makes me look even more like a hypochondriac which I am not:(
Thank you so much for reading I would appreciate any advice so much and I'm so sorry for rambling.x
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