Interstitial cystitis back with a vengeance

I suffered from interstitial cystitis for a horrible intense miserable year back in 2012 for the last four years I have been almost symptom free until a week ago when everything has returned with a vengeance. Any thoughts on how to get things back under control?

4 Replies

  • I'm so sorry :( I don't know a lot about it - but could you have incurred a diet change or allergy, stress, or a hormone change? What does your doctor think?

  • Elmiron seems to work with a lot of patients..have you tried that? I don't have IC but I did have urgency symptoms some years ago in relation to my vulvodynia.. Can you see a urogyn? what triggered the relapse? Was it after a stressful period?

  • Unfortunately Elmiron isn't routinely prescribed in the UK mainly because of the expense but also data suggests that it is no better than placebo. Unless you have had this before and it's been effective it might be difficult for you to get this medication prescribed. The RCOG last year published a new green top guide on IC or bladder pain syndrome as it is now referred to. I have posted a link to this guide below at the end of this post.

    What did you find helped you before Shelly? Unfortunately IC can relapse even in those who have had a long remission, but the fact that you did have a long remission previously is very positive. It maybe the case that this is only a set back for you and once you bring this flare up under control you won't suffer anymore. Some people do find that their IC/BPS just 'disappears' and they don't suffer with pain or frequent urination etc again which suggests that in some it is a self limiting condition whilst others find they have no relief or have remitting/relapsing symptoms. I suffer from this condition myself and unfortunately I am refractory to all medical treatments. I have been fortunate enough to be allowed another trial of sacral neuromodulation but this again isn't routinely available at all hospitals as it is a specialist procedure, very expensive and usual only available for IC if all treatments have failed after a reasonable trial period.

    With IC/PBS diet, physiotherapy, stress reduction/mindfulness and gentle exercise are an important part of the treatment programme. Some find this alone can control their symptoms or bring their symptoms back under control after a flare up. I hope some of this helps.

  • Thanks for all the helpful comments. I am going to see a gynaecologist with a specialism in urology who I saw four years ago. I will take the RCOG document with me

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