Registered: 1273432521 Posts: 6
Reply with quote #1
I'm 21 and have been suffering from what I think is an overactive bladder since late December. I had this problem before when I was 16 and after testing negative for UTI's I was found to have a largeish ovarian cyst which was thought to cause problems. I had this removed but continued to have symptoms for months afterwards...got very depressed because I went back to doctors to no avail, My GP said that after the op I shouldn't still be having this problem and the Women's Health gynaceologist who performed the op suggested I had an 'anxious bladder', asked if I was feeling particularly stressed and suggested I try swimming. I began to see a counsellor and after a few months my symptoms did get better. For the past few years I would say I was 95% improved, symptoms only reoccuring if I drank a lot of alcohol or if I knew I couldn't find a toilet too easily, e.g. when travelling. Also they would reoccur for about a week at a time at seemingly random intervals every 8 months or so. I always attributed this to anxiety and thought that my bladder problems were somewhat psychosomatic in nature. They reoccured in December at a particularly stressful time and I assumed they would alleviate after about a week. However, this time they continued for a few weeks befoe going and then coming back for a few more weeks. For the past month and a half they have returned 'full time', partly exacerbated I think after I read some horror stories about IC etc. I went to my GP and have again been tested negative for UTI's, had an internal examination which found no new cysts, but possible thrush for which I took ome canesten and have seen no improvement in urinary symptoms. I now have an appointment with a urologist in 2.5 weeks. Also it might be worth noting that for the past 3 weeks (after becoming very worked up and anxious) I started having pain in my upper legs, occasionally hips and sometimes in my vaginal area (although not in my bladder). This comes and goes and does not seem to lead to increased urgency. However I do also seem to be an unusual case, in that whilst I can usually feel my bladder which causes quite a lot of discomfort and sometimes urgency, I don't have to actually urinate more than most people. At the moment I am probably urinating 4-5 times a day (though this is variable and can increase) which technically would not put me in the area of OAB or IC. However, I am constantly aware of my bladder and after urinating feel that niggling feeling abou 5 minutes afterwards. Instead of gradually increasing until I need to go again it tends to stay at the same rate for a fair old while. I think when I had these problems before and felt like I desperately needed to urinate every 20 minutes I learnt to hold it in, which has perhaps landed me in good stead now. In the past I have not had problems with nocturia although after getting very anxious I started sleeping badly. I was prescribed amitriplyine to take if I felt like it was needed and after a very bad bladder day a few days ago I began to take 10mg at night. This has allowed me to sleep straight through (knocks me out like a light) which has been good as I had been getting very exhausted. My daytime feelings are much the same, although perhaps slightly ameliorated (I have only been taken thhis for a 3 nights now). I also went to see a physiotherapist about a week ago after convincing myself I might have Pelvic floor tension and after an examination she said my muscles were not particularly tight and advised retraining. I dont feel like bladder retraining would do me an awful lot of good as I am not going very often as it is - I just want to get rid of the fullness and pressured feeling! I am just wondering what everyone thinks. After convincing myself I had IC it looks less and less likely. Maybe I have OAB although it does not fit entirely. I was wondering if anyone had any information on any other bladder problems, trigonitis, urethral syndrome or possibly some type of endemotreosis. Or whether it's possible this could be completely psychosomatic, hence why it improved with counselling before. I know that there are not always discretely drawn lines for these things - different syndromes tend to bleed into each other etc. Sorry this is so long! Any advice would be great.
Registered: 1208620037 Posts: 561
Reply with quote #2
Sorry to hear that you are suffering so much. My son is same age and has had IC for a long time along with IBS. You do not have to have frequency and urgency to have inflammation in the bladder. His was always just awareness of the bladder filling the whole time, pressure feeling, feeling of inflammation, tightness, discomfort. Samples always comes back negative which is one indication of possible IC. Classic symptoms are it flares and subsides. Many people have IC , men, women and children and it is important to get it checked out so that you are not receiving the wrong treatment (ie. antibiotics if you do not need them and there is no infection).
See all the other posts re alternative measures as if it is IC, this is not just a bladder problem and is usually a whole system immune thing going on causing inflammation.
Yeast, candida will cause inflammation in flares and can easily come from the digestive system. Unfortunately the medical profession is not very knowledgeable on IC and very slow with diagnosing it. If there is inflammation there , it is coming from somewhere and may not necessarily be a UTI but could be candida or yeast overgrowth in the whole body system which can cause havoc with the bladder.
Registered: 1263982609 Posts: 15
Reply with quote #3
I have had pretty much the same issues as you, im nearly 21 myself so i can totally sympathise with you!
I have negative results for UTI's, dont urinate as much as some people do, like you 4-5 times a day, but then some weeks i go a bit more (usually after alchohol or fruit juices!) dont get up at night much, was told to go swimming, have seen a physio as i thought it was my pelvic floor and been on a massive journey!
But.. i can feel my bladder filling up some days, if i walk alot i am so aware of this and end up leaking or needing the toilet. I thought it was psychological so had to train myself not to think about it, but i realise i cant really control it that way!
Anyway, i thought it was purely IC, but after speaking to my nurse she says theres a lot of OAB happening to, so i was put on vesicare 10mg which doesnt really work.
I have the instillations once every 8 weeks and also have acupunture which does help.
Sorry i cant give much more advice, i just wanted to say how similar our issues have been and that there are people out there
Registered: 1273432521 Posts: 6
Reply with quote #4
That's interesting that you got diagnosed with IC even without having loads of frequency...I've read in a couple of places that you are only really considered if you urinate more than 8 times a day. Or maybe you did before treatment and are now somewhat improved? It really does seem like our symptoms are very similar! Can i ask, do you have much pain? Cos that's not much of a problem for me, i only get occasional twinges in my bladder/vaginal area. Unlike you I don't have any leaking problems...for me it's mainly just the pressure and fullness. Do you think this is more of an IC rather than OAB issue? I dont really read about much pressure with OAB...much random bouts of urgency/frequency. Sorry for so many questions, I know you probably dont have all the answers, it's just nice having someone with symptoms so like mine! It's tough so young as well..I dont really mind talking about it with my parents/older people, I guess cos as you get older you get more health problems. But talking about it with people my own age currently makes me feel embarrassed and a bit isolated... Hope for a reply. Thanks!
Registered: 1263292570 Posts: 248
Reply with quote #5
Dear Isabel et al
Have you tried acupuncture. I have used acupuncture for 15 years on my bladder and it has really helped me. I suffered from an over-active bladder 18 months ago for the first time, and it really helped with the pain and urgency and frequency. The key is to find a good acupunturists. Toni Tucker in Maidenhead and Harley Street specialises in bladder problems. Google her name to get her website. She is very experienced. I use Sinsook Park, at the White Hart Lane Clinic in Barnes, she doesn't specifically specialise in bladder problems but she is a very good healer, so I can recommend her too. Also, have you thought of going to see a women's pelvic floor specialist who specialises in women's health - Maria Elliot, also at the WHite Hart Lane Clinic in Barnes, sees lots of people with different bladder problems. She is excellent - I would recommend her as well. Google her name - she has a website etc - she also helped with my pain my massaging my pelvic floors etc and doing lots of execises - the book Headache in the Pelvis is also good to read - the COB office have a copy you can borrow. It is all about relaxing the pelvic floors which in turn relaxes the bladder. Pilates and yoga are also good, and mediation and even hypnosis. They key is to try things and to see if you feel better after them. But you have to be committed in them - acupunture doesn't work with one session but with many repeated sessions over a course of months. I hope this information helps you. Best of luck with getting better. Rachel PS IC has many symptoms. Some people have inflammation and pain with no frequency or urgency, some people have urgency and frequency (sometimes sixty times a day) but no pain, some have both, some have just frequency and no urgency. IC is a condition, that is why it is so difficult to treat as every single case is so different, that is why it is so important to get a doctor that really understands IC. Also, do look at all the alternative practitioners aswell - information on this forum - who have specialised in IC - as many alternative practitioners are doing great work at helping people. The whole urological profession is battling to understand this condition and is in the dark in many respects still to its causes etc and there is little sharing of knowledge between the alternative practitioners and orthodox medicine, that is why it is important to be very well informated yourself, so you can empower yourself in your own treatment choices, so you know what you are doing to your body. I have taken no medication for my IC/overactive bladder, I have gone down the alternative medical path - and I am definitely getting better with a lot of hard work.
Registered: 1263982609 Posts: 15
Reply with quote #6
i did have to go alot before i got treatment, but i went through stages of good and bad days, but the treatment has helped a lot!
as for the whether its IC or OAB im not sure, i got told that they both kinda come hand in hand together, but as there's hardly any research about, no one really knows! my nurse said to me today how its strange that they know how to treat it, yet dont know fully what it is!
and as for pain i used to get it all the time, random twinges, pain when weeing, pain just randomly, but since i started acupuncture it has stopped really. of course i get the odd bit of pain, but its alot better!
Have you seen a specialist nurse about it all? i have one who does the instillations and she is brilliant!
It is hard to talk to people. like you i dont mind telling my parents or older people, but talking to my friends about it, its tough! the amount of times ive gone out with them and have to keep going to the toilet and i get told 'not again..!' i kind of want to scream and say if i wasnt desperate, trust me i wouldnt bother getting up!
Look into acupuncture, and someone told me that sometimes theres pressure on the bladder is because you sacroiliac joint is not aligned right, so see a chiropracter.
also i got told that sitting on a tennis ball is a good trick to try, not to sure myself though!
any other questions just ask and i will try and answer! x
Registered: 1273432521 Posts: 6
Reply with quote #7
thanks for your responses guys.
laura: i haven't seen a specialist nurse. ive got my urology app. a week today so will describe my symptoms and see where it goes from there...I was thinking of requesting a cystoscopy because ive heard this is the best way to diagnose/rule out IC, but imagine this would be some way down the road. im a bit pessimistic after reading so much about useless urologists on this board but hopefully i'll get a good'un who'll actually listen to my requests. so how do you feel now laura? like do you still have symptoms every day or some days no symptoms? do you feel happy with where you're at at the moment? that's all i want really, even if it doesnt mean complete cure...
Registered: 1263982609 Posts: 15
Reply with quote #8
sorry its took me ages to write back!
cyctoscopy is a good option, not the funnest of experiences but it will answer some questions. At the moment im ok, ive excepted that i will never be fully cured so i just have to get on with it. exercise is a pain, i went for a long walk and it was all i thought about. I hope you get it all sorted, you're not alone so ask anything you want! xxx