Appointment with urologist this week, Possible IC?..advice please?

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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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  • Posted

    HI Charlotte

    Try not to worry too much. Remember, the consultants deal with people with symptoms like yours all the time. They should ask you the correct questions to find out your symptoms. Maybe write some notes and keep them in your pocket, if you get flustered, you could say you want to check your notes to make sure you have remembered everything?

    IC is very lowering. Its just so uncomfortable and always on your mind because of the constant pain.

    I really hope you find what the problem is and get some relief. If they diagnose IC, its not the end of the world as there are things that can help. I find being careful with what I eat & drink really helps. I have also found drinking a cup of Pukka relax tea last thing at night has been amazing at keeping symptoms at bay. It contains marshmallow root which can help to coat the bladder and stop the pain.

    Good luck with your appointment and I really hope you get this sorted

    Karen x

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  • Posted

    Hi Charlotte

    I remember your post from before. I'm glad you've got an appointment. I Know you're anxious and don't feel you're being taken seriously but please don't let that thought dominate you - not all doctors are like that. I'm sure the urologist will realise that you wouldn't be paying to see him privately unless you really needed to! I can relate to most of your symptoms and you've had a lot of tests already which would show that the doctors do believe you - it's just that they don't know the answer and, sadly, when doctors don't know what's wrong, some tend to wonder if there's something else (psycolologically) going on! I had a huge ovarian cyst for over a year that had stuck to my bowel and I was asked if I wanted to see a counsellor!! Thankfully, when i saw a gynaecologist it was discovered - so hopefully now you're going to see an expert, he/she will be able to find out what's going on! I am certain they WILL take you seriously. Explain that you're feeling nervous and the pain makes it hard for you to concentrate (hopefully he will put you at ease) then hand him a list of all your symptoms (I do this so nothing is forgotten) - don't write a novel lol just a 'bullet point' list he can easily look at. As the previous replier said, even if it is IC (notoriously hard to diagnose by the way so you're not alone there!) there is a lot you can do for yourself and helpful things you can take (antihistamines, d-mannose, quercetin, pre reluef, marshmallow root etc) but see how you get on with this appointment first. IC doesn't have to get worse - it can stay the same or improve and give you periods of remission. You are not alone - if it is IC there are forums you can join for support and to share tips etc. They're a very caring lot! You may, of course, have a deep routed infection - a good urologist will sort you out - best advice for the moment is to stick to the IC diet - no fizzy drinks, no chocolate, no alcohol, no citrus fruits, no tomatoes and no caffeine (no tea or coffee, even decaf contains some caffeine) try plain water, milk, redbush tea with milk, peppermint or chamomile tea) Let us know how you get on and be assured that I believe you!! I'm sure the urologist will too.

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