help!

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Hi, I was diagnosed with IC in 2013 after 10 years of going back & forth to doctors/hospital having gynaecology tests/STI tests!! Finally was referred to urologist & following Cystoscopy was diagnosed. Since then I've had 2 distensions (last one yesterday!) & been having monthly instillations through catheter which really helped at first but then symptoms (pain when weeing, backache, lower abdomen pain etc.) started to increase again therefore resulting in having the distension again. Found this helped first time had it done so fingers crossed but told by surgeon that no guarantee will help this time! My main issue is pain during sex & loss of sex drive. My partner is very understanding and supportive but I'm scared that one day he will get sick of it all. I sometimes think it's maybe more in my head that on previous experiences it was painful therefore this puts me off & not wanting to do it. Me & my partner are getting married in 2016 (unless he gets fed up of me by then) & following this would like to start a family but you need to have sex to do so!! Has anyone else experienced this?! If so I would greatly appreciate any advice you may have!!  Thank you in advance!!

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  • Posted

    Hello,  I've had IC for the last 2 years now but unlike you my urolologists.... I've seen three!! Have been no help whatso ever!!! I cannot have sexual intercourse sad  it causes so much pain, not during but afterwards? I really feel for you as you are young and I'm in my fifties!! But I don't have a partner because of my condition, all I can suggest is to try and relax? I think your partner is very understanding and if he understands your condition then taking a gentle approach can only help.  I'm sorry I cannot offer you any other advice apart from after intercourse make sure you shower and raise your legs up onto a pillow and take antihistamines and anti inflammatory tablets? These are what I take to ease my pain but I have now come to terms with my pain which effects me every day of my life sad  I hope you go on to have a family hun!!! 
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    • Posted

      Hi Tina. Many thanks for your message. 

      Sorry to hear you in the same boat, it's awful isn't it! What's annoying is docs don't seem to know very much about IC so can't help! I'd never heard of it until I was diagnosed. I'm just hoping one day there will be answers and maybe a cure! 

      It's painful during & after but it's mainly getting to do it at all as I tense thinking about doing it as I know it's more than likely going to hurt. It's so frustrating! I will definitely take your advice on board though for when I do get to do it.  It's so sad to hear that u don't have a partner because of this awful condition. I hope one day u do find happiness. It's so unfair. People who don't have it or know anything about it just don't understand how it effects all aspects of your life, they just think oh it's just a water infection!! I wish then at least it's easily fixed. 

      I really appreciate you taking the time to leave your comment. Thank you x

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  • Posted

    IC is very much an auto-immune condition and related to dysbiosis and candida. If you have had a lot of antibiotics in the past they kill of all the good gut flora and you get fungal overgrowth.This can go systemic and end up in the blood stream causing problems for the bladder - as it transmutes. Unfortunately doctors don't tend to look for this or recognise it. Try looking up IC and leaky gut, candida etc. An anti-candida diet, probiotics and special IC diet may help.
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  • Posted

    Just to reply to P Burn, I have tried pro biotic diets and many other diets? This country is just so behind in research into this debilitating condition! If I lived in America I would be getting treatment of some form or another, my GP hasn't got a clue!!! Let alone my urologists!! I'm actually very angry that this condition is being ignored.  Sorry for the rant. 
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    • Posted

      Yes, totally agree. Have you ever read "Along the Healing Path" by Catherine Simone, the IC Puzzle by Amrit Willis (not sure if this is still available). Worth reading.
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  • Posted

    Thanks for the info on the books I will try and source them.
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