Possible interstitial cystitis? So fed up and depressed now:(

Posted , 6 users are following.

Hi,

I am writing this as I have had symptoms for a long time which i think may be IC, I made a post about 6 weeks a go but I've had a horrible day and I just want some advice and some help:( I am in my early 20s, I'm meant to have my whole life ahead of me and I don't know where else to turn. Around a year a go I started experiencing urinary frequency - going for a wee more often, around 8-9 times a day and I would feel urgency, almost like a twitching/spasm in my urethra where it would feel like pee was about to leak out? I would feel like I couldn't hold on very long and it would feel urgent and I'd have to go to the toilet pretty quickly and then there wouldn't be much there (sometimes only 100-150ml). I would have no pain, blood or incontinence.

Around 3 months later, I noticed a deep ache in the mid-lower right section of my pelvic area soon after I had swallowed any liquids like water/squash etc. The ache felt a bit like the throbbing sensation you get when you have a headache and it was as if I could feel my bladder filling up, although I think the 'ache' is next to my bladder instead of in my actual bladder (my GP doesn't seem to know?) Again, the frequency and urgency carried on. So I saw my GP - they initially thought I had an overactive bladder so prescribed me with Neditol/Vesicare (neither worked), sent me for a bladder ultrasound (everything looked normal), and a pelvic ultrasound (also normal).

I have also had some rectal issues where I was experiencing intense aching/discomfort in my rectal area so saw a colorectal doctor privately. He diagnosed me with a condition called proctalgia fugix with possible levator ani syndrome and put me on medication for this which has worked really well so far. I mentioned the pelvic ache/urinary frequency but he didn't seem too concerned and didn't think the two were linked.

As time has gone on I have tried to cope with my symptoms by cutting out alcohol, limiting acidic foods and limiting fizzy drinks/caffeine as much as possible. Nothing has helped me so far, even on days I drink just water the aching is still there - I am on a long waiting list to see a urologist (my GP finally referred me but clearly think I'm being a hypochondriac as all my scans have come back fine). The past few weeks or so I have been in so much discomfort, the urgency and the pressure in my pelvic area has been horrible and I am constantly miserable and upset:(. I put off seeing my boyfriend, I don't look forward to things I should be excited about, I cry pretty much everyday. I feel so alone and isolated - I feel like the only thing this could be is IC from my research. The only doubt I have is that a lot of people describe burning sensations when they pee or burning in the bladder and thankfully I haven't had that so far.

Has anyone got any advice or experiences? I have no idea what is wrong with me and no one in the medical field I have dealt with seems to know or care 😦

Thank you so much for reading I really appreciate any replies xx

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  • Posted

    i had something pretty similar to this i was suspected of having a uti i was given two lots of antibiotics for it but i did have burning when weeing i then started getting pretty much same pain as u are describing in the lower pelvis and also my back and stomach like a really weird dull aching sensation i still had bladder urgency after the antibiotics and also having to go all the time i think was up to 14 times a day i was weeing if not more sometimes id go an be lots of wee then id have to go and be hardly any i went for transvaginal ultrasound and also had stomach bladder kidney ultrasound never found anything i had swabs done from the cervix and nothing from that urine cultures came bck negative for uti after the antibiotics in the end i was treated for pelvic inflammatory disease but they never found wat actually caused it i was treated with cipro metronidiazole and also doxycycline

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  • Posted

    Hi Charlotte. I'm so sorry you're having such a horrible time - I know just how frustrating this can be! Half the answer is finding a sympathetic urologist and I hope that when you get your appointment you will start to get the help you need. one thing my lovely urologist told me was that major structures share a rather tight space in the pelvis, mainly the uterus, bowel and bladder and the nerve bundle to all 3 is tightly bound together and that, most definitely, any bowel problems will affect the bladder and vice versa, especially conditions like IBS or constipation. You could also be having pelvic floor problems (unlikely at your age but not impossible) - these things would not show up on a scan. They need professional assessment. You may have IC but there are a few other things that can cause similar symptoms so its hard to say on here whats likely to be the problem but I disagree (from personal experience and my urologist's opinion) with your doctor and I suspect your other problem IS connected. write down everything when you go so you don't forget and be assured that this will get sorted - you just need to find the right person. It's horrible feeling like no-one believes how bad it is, I've been there and its a lonely, scary place to be, but take a deep breath, try to stay calm but assertive, and know that this won't go on forever - you will be believed and helped. It may be a problem with the nerves supplying the bladder and your doctor can give you meds like pregabalin (lyrica) or gabapentin for that. If your urology appointment is too far off for you - its worth phoning his/her secretary and asking (very nicely!) if there's any chance they csn bring it forward as you're really suffering, i hope all goes well!

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  • Posted

    Hi Charlotte! You have my sympathies in this dilemma, it sounds all too familiar. Shirley gave excellent advice and I can second her statement about bowel, urinary and reproductive issues affecting one another. I was lucky to have a GP who was familiar with IC and referred me to a great urogynecologist who then sent me to pelvic PT. I also had levator ani and pelvic floor issues (thanks to old injuries of hip and knee) and the physical therapist worked with me to realign my hip, soften scar tissue and relax my pelvic muscles. Most people think of pelvic floor disorder as meaning the muscles are too loose (which definitely causes problems) but pelvic muscles that are too tense create issues of their own. This might be something worth looking into, you could even look up yoga poses online that relax the pelvic area and legs . Try deep meditative breathing that engages your lower abdominal and pelvic muscles. I know that telling someone to relax is often counterproductive but anything you can do to ease tension will help as stress is a common trigger for IC. It might be hard to believe now but you will get the help you need, just (politely) refuse to be dismissed or look for someone else to help you if you hit a roadblock. I wish you the best of luck. P.S.- Not all urine cultures check for all possible infections, most only check for e. coli or aren't sensitive enough. You may even have a stubborn or recurring UTI and those can cause inflammation and pelvic muscle issues too. I was treated last year with a 6 month course of antibiotics for recurring UTI which finally cleared it. Just be sure to take probiotics if you're taking antibiotics, we all need healthy flora to be well.

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  • Posted

    Hi,

    Thank you for taking the time to reply and your advice. xx

    I went to my GP today to see if they can give me something for the discomfort and they have prescribed me with codeine which they said might help with the aching next to my bladder (I'm not holding out much hope as ibuprofen/paracetamol hasn't worked). Turns out there was an admin error and I wasn't even referred to the urologist!(they said they'd refer me 8 weeks a go), and there is a 32 week waiting list in my area so I'm going to have to go private. I mentioned my IC suspicions and she looked at me with a blank expression and said only urology would be able to tell me. Don't think she had even heard of it:(, so frustrating.

    Does anyone have any advice on how to approach things when I see the urologist? Also what kind of tests are they likely to do? I am terrified of the thought of having a camera inserted into my bladder:( GP said she is unsure if its all bladder related and said it could be a gynaecological problem but she said wait to see if urology find anything first. I have been keeping a diary of how many times I pee a day, and a record of how often I am in discomfort and what the pain is like, my experience with doctors have never been great and I have been labelled as 'anxious' and having 'health anxiety' many times. I just need someone to take me seriously 😦 xx

    I'm so thankful for any replies xx

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  • Posted

    i cant really help u with those questions as mine was related to my reproductive organs but i do know wat its like to non stop wee and iv had to run to the toilet sometimes didnt make it fast enough before pretty much weeing its not good i can only say that when u go to your appointment that you tell them everything that is happening sometimes its good to make notes incase u forget things keep a log of the amount of times u need to wee and roughly how much wee that comes out each time i hope u get the answers that u need so you can finally put an end to it all

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  • Posted

    id see a gyn i was told i had ic had same symptoms and had a lyperscopy done and now i know my problem after two years of doctors and tests

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