Painful bladder syndrome

Hi everyone, I am brand new and at my wits end 😞

I am a 31 year old female who is currently under consultants to find out why I am in constant pain.

My symptoms are when I go for a wee the pain is unbearable like weeing razor blades and brings me to tears. Not every day but horrific when i flare.

I then have constant pain in my uretha all day every day not my bladder. Currently in tears as the pain is horrendous.

It's like a weight is hanging from my uretha! The hospital have done biopsy on my bladder nothing significant, I am on Amitriptyline on the night cocadymol, gabepentin but nothing is helping.

I have tried all the diet stuff herbal stuff nothing is helping.

I am in pain every day and it's getting me to my lowest point. I have a 3&4 year olds and a full time job. Although I am having so much time off they are on the verge of sacking me.

The hospital won't do a biopsy on my uretha as they would cause to much damage and apart from an MRI they said I might be coming to the end of the road and it's just managing the pain. I can't handle it anymore. It's ruining my life.

Does anyone have similar? Or advice? I want them to remove it all everything ! X

7 Replies

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  • Have you been seem by a uro-neurologist. If not ask your GP to refer you. You can google uro-neurologist to see if there is one at your local hospital. I assume they have checked for a urine infection. You could ask your GP or local chemist to see if there is any medicine that you can take that will neutralise the acidity of your urine to stop it being so painful - just an idea. Also google cystoscopy which is an examination of the bladder under anaesthetic. I hope you get to the cause of this very soon. All the best.

  • I like the suggestion made here by cvbn to see a uro-neurologyst if there is one available. Also, I don't have what you have, but I do have pudendal nerve pain and lots of pelvic muscle and nerve burning, so I have been taking methadone for 5 years now, and it takes away much of the pain (over 50%), and I take a small dose. It doesn't make me feel drugged at all, but I do take a small dose. It is very good for burning (nerve) type pain. Besides that, no other medicine has helped for my burning pain. Wish you lots of luck!

  • This sounds very similar to one of my symptoms - they have done cystoscopies (both flexible and not) but these go through the urethra but as far as I am aware don't actually look at it. I find these agony. I often have felt like my urethra is too stiff or something and it is always 'stingy' even when not peeing. Often when I pee it is like peeing battery acid but there is nothing wrong with my pee in terms of infection (I have blood in my urine which they did investigations for but could not find the reason for so have just stopped looking). Also when I pee it is sometimes like my pelvic area is trying to turn inside out (I don't know how else to describe it) - all of the muscles are contracting and I am physically shuddering - not shaking, it is exhausting when it is that bad. I too take amitriptyline, I also take Co-dydramol and Tramadol and Pregabalin. You might find Pregabalin works better than Gabapentin. I also find that it is really much worse if I forget to drink fluid during the day - it is then like hardly anything is coming out but it is 10X more painful. I avoid all caffeine (including decaf drinks) where I can, and have tried to be self aware - so try to keep a diary for a while about when it is worse/better - what were you doing that day/week etc. that may have helped? - try it again and see what happens etc. Another thing - I did have a myomectomy (removal of fibroids) because my uterus was squashing my bladder, so it might be an idea to investigate if other organs are in the right place or are putting pressure on your bladder that could be stretching your urethra?? I also find if I am at all constipated the whole bladder/urethra combo is much worse so that is another thing to think about. Sorry to throw so many variables at you but I think it is probably time you sat down and planned a campaign for both managing and also getting further help/investigations. If they offer you the pain clinic - don't dismiss it - they will refer to other consultants if they think it will help and also can have useful strategies for managing pain whether in the short term or long term. Not sure who your employer is but if they have occupational health - you need to ask for a referral to see if they can support your continued employment with reasonable adjustments. Chronic Pain is soul sucking (and it has changed my life I cannot deny) but having some control of your own life does help! Good luck with it.

  • Sounds like ic to me

  • Thank you everyone! Yes they are querying IC which I think it is!

    So nervous as I have been prescribed tramadol and i ha e had 6 today and a 10mg Amitriptyline before bed! Scared to sleep as worried it's not good interaction! I know I sound ridiculous x

  • I take 40mg of amitriptyline, and up to 8 Tramadol a day, plus a whole range of other stuff and I am still alive - so I shouldn't worry. That is a very low dose of ami so you probably don't get the drowsiness or other side effects from it, but if they put your dose up, I take mine at 6pm as otherwise it keeps me awake all night. Other people find it makes them very drowsy the next day if they take it too close to bed time at well, so 6pm seems probably good all round. The urologist I saw was quite clear that partly my bladder issues were caused by GYN problems - if they do an ultrasound they will be able to see what is squashing what - as you have had kids it could be something to ask them about?

  • I am going to respond with personal accounts of your symptoms, it may help, it may not, hopefully it might. In the past when I had those symptoms, it was definitely related to urinary or bladder infections. Another cause was when I took an arthritis pill caused diclofinak. It caused severe infection type symptoms. That particular drug, when taken by my hubby, caused him to have blood in his urine. Also, was your bladder tested to rule out bladder spasms? That is a problem one of my daughters has to deal with. It also sounds like kidney stones. Well, just some thoughts. (You probably already ruled most out ;). Take care. I positively know how painful that area can be!

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