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Heather1979

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Posts: 2
Reply with quote  #1 
Hi have just joined this forum to hopefully get some help and advice on how to deal with IC/PBS.
I am still having tests on my bladder but my consultant has pretty much said I have IC/PBS . I have been suffering with my bladder since I was 18 and now I'm 39. It has however got so much worse over the past few years and it's now controlling my life.
I feel like I'm going round in circles when speaking to doctor's . I know what causes mine the majority of the time but I don't know how to deal with this .
I would love to hear other people's stories as I feel so alone right now .
Thank you
Lisa_Harrison

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Posts: 10
Reply with quote  #2 
Hi Heather,

So sorry to hear that your feeling so sad and alone through this. I also have spent many years trying to find out what my pain was and have been back and forth from one doctor to the next and seen a specialist in almost every area and had many procedures form hysterectomy to  bowel colonoscopy before finally seeing a Urologist who diagnosed IC after a bladder stretch and biopsy. I have now just started an 8 session course of Ialuril (bladder instillations) but it is early days as I have only had my first session so far. I know it can be a very hard living in constant pain but hopefully now you have been diagnosed they can find the right treatment for you.

You said that you know what triggers your pain or makes it worse. If it is not too rude I would love to know your thoughts on this as I have never been able to find any specific triggers for mine.

Best wishes

Lisa

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Lisa
ModeratorKate

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Posts: 1,847
Reply with quote  #3 
Thank you Lisa for assisting Heather and am sorry no one else feels able to contribute.

Heather do please contact BHUK, they have loads of extra good information , help and support they can offer you, if you become a member of BHUK, there is even more support available.

The office also has a Continent Nurse available on Wednesdays that you could speak with.

Do keep posting, as we will always listen and this will also, always help others searching.

Kind regards

Kate.

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Heather1979

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Posts: 2
Reply with quote  #4 
Hi Lisa , thank you for replying . Things that trigger smallish flare ups are eating lots of sugary foods and stress. The main thing that gives me the worst flare ups that leave me in agony and incontinent is sex . Doesn't matter what I do I will always be really bad after for weeks . It's tough because I feel like I'm broken and don't understand why I can't just enjoy a normal sex life .
I've been on another forum and someone suggested marshmallow root , pro biotics and something else I can't think of at the moment .
Have you tried anything ? I'm taking solfenacin plus the consultant gave me something else but I want to try and manage away from medication if I can .
Lisa_Harrison

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Posts: 10
Reply with quote  #5 
Hi Heather,

Thank you for your response, as I said i don't know what causes my pain specifically but sex is an absolute no no as I cannot stand the pain afterwards, my husband and I have not been able to have any form of sex life since 2016 as I am now too scared to try. Thank god I have a very understanding and supportive husband. I have heard of marshmallow root and pro biotics but have not tried them yet so I will definitely give them a go.
i was given Solfenacin but i had a bad reaction to it so my urologist took me back off it. i live on Gabepentin which also meant to be good for IC.

All the best

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Lisa
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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.

BHUK is not a medical body & do not claim to have medical knowledge. It is not the intention of BHUK to provide specific medical advice, but to provide users with information to better understand their health & to manage their suffering.

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