Interstitial Cystitis or something else?

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Hi,

I have had a number of strange symptoms now for quite some time which I am starting to think could be intestinal cystitis. It all started when about this time last year I started getting urinary frequency, needing to go for a wee very often (around 8-9 times a day) and when I needed to go it would feel urgent and as if my urethra was spasming, pee was about to leak? I would have no blood, no pain or incontinence.

Around Christmas time I started noticing a deep ache in my lower mid-right pelvic region if I was drinking anything (water, squash etc). It is as if I could feel my bladder filling up but I still don't know if the pain is coming directly from my bladder. I would also notice frequency and needing to go for a wee quite urgently like before but when I would go there would not be very much there. Once again I would have no blood or incontinence. I mentioned to my GP in February and they thought I had overactive bladder so prescribed me with Neditol for 4 weeks which didn't do a lot for me. I then tried Vesicare for 4 weeks, which again..didn't do much for me either. The last couple of months, I have also had some rectal issues where I was experiencing intense aching and pain in my rectal area. I saw a colorectal consultant privately and he said I have something called proctalgia fugix with possible levator ani syndrome. I mentioned the pelvic ache/urinary frequency as well and he didn't seem too concerned about it so I guess he doesn't think they are linked.

I feel like I'm going crazy, I've had a bladder ultrasound in October which came back normal, urine samples are always fine, and pelvic scan in March was normal as well. I think the doctors think I'm a hypochondriac but I'm really not I just want answers and to feel normal again. My urinary symptoms disappeared for about 6 weeks but have come back again. I am still getting the deep pelvic ache which feels like a throbbing pain, especially when I am drinking water, and when I pass urine it feels like there will be a lot, but there isn't much there, (sometimes only 100ml). GP has finally referred me to Urology at the hospital but there is a long waiting list and I am really worried this could be IC as from my research it doesn't look like it could be anything else. I haven't mentioned this to my GP as I know they don't like it when you try and self-diagnose and I feel that they already think I am dramatic and overly anxious 😦

Sorry about the long message I just feel like I have to vent and would really like to hear if anyone's ever experienced anything similar? Half of me thinks this could just be a pelvic floor problem (I have been referred to physio for myofascial stretch but I am waiting for this), and the other half thinks it could be IC. My GP seems to have no idea what the problem is so I feel completely stuck 😦

Thank you for reading,

Charlotte

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6 Replies

  • Posted

    Hello you're not going crazy. I woke up one morning and felt burn in my bladder area.... Went on for 4 years. Also get rectal pain and pelvic pain. I was recently referred to endometriosis clinic where they operated and found stage 1 endometriosis. Check it out... The symptoms are on the NHS website. It helped to keep track on a calendar of my good days and bad days... This helped the urologist.

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    • Posted

      Hiya.

      thank you for your message and for your advice. the doctor did ask about my periods and to be honest they are always quite normal. they have always been irregular, ranging from 30 days to about 50 sometimes and I get menstrual cramps which are quite bad but manageable with hot water bottle and ibuprofen so I don't know if endometriosis is out of the question? I guess I will have to speak to the urologist when I see him and see what he thinks.

      I hope you are feeling a little better now x

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  • Posted

    You might have IC as the thing that tips it in for me is the lower pelvic pain.

    It feels like menstrual cramps that don't go away.

    You might want to visit the site that helped me so much before I was diagnosed with IC 10 years ago, the Interstitial Cystitis Network.

    It will answer all your questions. They even have a forum for people who suspect they have IC but haven't been diagnosed and have many questions.

    Good luck!

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    • Posted

      thank you for your message.

      can I ask how you ended up being diagnosed with IC? My pelvic pain doesn't feel like menstrual cramps but is more like a deep throbbing ache in my lower mid-right pelvic region. is it likely for scans to come back normal if you have this condition because my gp basically said there can't be anything seriously wrong with my bladder as the ultrasounds came back normal.

      I will have a look at the network. thank you x

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  • Posted

    Hi Charlotte, I'm sorry to hear you're going through all this. I Certainly know how it feels to be in pain and yet have a dismissive attitude from doctors. Unfortunately, as my Urologist told me, general practitioners are not very knowledgeable about IC so your best bet is your urology appointment. it does sound like a pelvic floor issue to me or at least it has some involvement although the nerve bundle that supplies the bladder and bowel are very closely connected - for example my urologist told me never get constipated as that will upset the bladder more (and it certainly does for me!) your pelvic floor, like mine, may be too tight but a good physiotherapist will help correct that. i know you probably don't feel like drinking more but the more you can dilute the urine with water, the calmer it will be as concentrated urine is irritating to an already irritated bladder! Also avoid caffeine (inc decaf as there is still some caffeine left in it), citrus fruits, alcohol, tomatoes, chocolate, artificial sweeteners and carbonated drinks. (look up IC diets) as many find thats the single most effective thing to do, and wait and see how you get on with your future appointments - just because your scan is clear doesn't mean you're not suffering so don't be put off by that meaningless remark! you can't see IC on a scan anyway - you'd probably need a hysteroscopy. You need to see the experts I'm afraid before you'll get knowledgeable help. I wish you well.

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  • Posted

    Hiya its sounds like endometriosis to me. I have all the same symptoms as you. With endometriosis you can have normal or irregular periods. Mine are normal they occur every 28days on the day. But I still had endometriosis.

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