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hayaad

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Posts: 5
Reply with quote  #1 
Hi I am 27 and have been diagnosed with IC.

This is some background info about my symptons:
  • Have this constant pain and throbbing in my vagina and on the opening of my urethra.
  • When I pee it feels as though theres still something left and i use my fingers to press on my bladder to release it.
  • Sex hurts especially because during intercourse he presses against my bladder and i feel like i need to pee. I cant focus on a orgasm as i keep focusing on the throbbing pain from my uretha.


GP/consultants
  • My Gp initially thought it was a UTI, gave me antibiotics and when that did not help assumed maybe it was a STI and to get myself checked out. Finally he referred me to a uro gynaecologist.
  • The uro gynaecologist did a uro dynamic study on me and cystoscopy with hydrodistension, which she said did not find IC and therefore she referred me to a urologist as she believed it was a urology problem.
  • I was then referred to a urologist bear in mind that i still did not receive no pain killers.
  • The urologist believed my symptoms were definitely IC related and therefore decided to do another cystoscopy with hydrodistension.  This time they did find IC  and I saw the pictures with the inflammation. He then suggested that i should do a bladder instillation for 10 weeks.

I just finished the bladder instillation 2 weeks ago and it did not help me. The next time i am seeing my urologist is in October. The NHS and there waiting times are ridiculous, i would want to join a private health scheme but I cant since I am already diagnosed with IC.
I was not given no medication as they assumed the instillations would work, i had to beg the nurse in charge off the installations for some tablets that could relieve the throbbing sensation, she gave me:
  1. Vesicare 5mg- not helping
  2. Montelukast 10mg-not helping
  3. Told me to follow a IC friendly diet- have noticed chocolate,fizzy drinks and alcohol increase the throbbing sensation

Do any people out there have these throbbing pains and what is helping you?
How are you guys coping with sex and these pains in your urethal and vagina?
Have you guys got health insurance even though you are diagnosed with IC- I called Bupa and they said its not possible?

Thanks in advance.






Ruby19

Registered:
Posts: 11
Reply with quote  #2 
Hi Hayaad
I'm sat here eating my breakfast waiting to go see my Urologist as have been recommended for a partial cystectomy
Everything you say I have had or felt and it's hard. Very hard
Still managing the pain with my working day but for me the overall effect on my life has been pretty massive
Sex lis fine but I have to make sure my bladder is completely empty
After though it's a different matter altogether. Flare up the next day is guaranteed
It's hard for me coming to terms that this is how the rest of my life is going to be
I have gone from months of urgency and having to wee every few minutes and VESICARE helped tremendously with that
As I'm Asthmatic I already am on Montelukast so was surprised to see that is used in Urology care
I am in Amitryptilline but after five days boy do I feel groggy. Will discuss more with consultant later
Throbbing pain feels almost vaginal/urethral which is typical IC symptoms apparently BUT I cannot for the life of me get this pain managed and this is the bit that really hurts
Also I feel the urge to pee but once I'm sat on the toilet it won't come out so I have to strain so hard to only see a tiny amount come out. Sharp stabbing pain. Constipation. Hot flushes and feeling helpless are daily feelings for me and whilst I refuse to let it take over my life it's slowly trying to take over I feel
I hope you read this but see it was July you posted last so here's hoping xxx
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This Forum is provided by Bladder Health UK and is intended as a place for Sufferers of Interstitial Cystitis, Bacterial Cystitis and Over Active Bladder, together with their family & friends to gather, online in a positive exchange.

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