I have bladder pain with poor bladder control. Please give me an effective solution.

Dear doctor Sorry post so long but have other complex healthy issues I felt you need to know before answering my query. I would very much appreciate your patience in reading such a long post but today feeling desperate.

Two years ago I started getting pain in my bladder, groin and urethra. I have never had any stinging when I pee. I also started to experience hesitancy before starting to pee and a start stop flow. For nine months I was repeatedly placed on antibiotics by numerous GPS at my practice even though tests coming back negative for an UTI. The antibiotics were doing nothing to help and sometimes after a cause I felt worse as if bladder irritated or inflamed. At the age of ten, I had recurrent kidney infections in both the ureters.

Eventually a GP referred me for a bladder scan. After the scan I was told it clearly showed I had a retention problem and eventually I saw a urologist. It was a quick appointment where no tests were done and told it is a common problem and last year had my urethra dilated. I was then told I would be seen again by the urologist in out patients but am still waiting and due to Covid I have no idea how long that may now be.

Prior to the procedure a GP placed me on a drug I cannot recall the name of believing it may be bladder spasms but this intensified the pain, once it caused me to black out and would vary from day to day, sometimes intense. Just before the procedure I had an episode of acute urinary retention just after the bladder scan and after being treated in A&E was told to stop taking the tablet for suspected muscle spasms of bladder which helped. The urologist told me if I am not getting stinging when I am wee then it is definitely not an UTI. Since the procedure nothing has improved but have good days and bad days. But as of recently am struggling to wee most days despite drinking seven cups of drink a day including Cranberry juice, tea, water and fruit smoothie. Then a fortnight ago I had gone 22 hours with out a wee so phoned my GP practice. We are not allocated a specific GP so have a phone consultation same day you phone receptionist then get given an appointment if felt need to see you in person. I was told he would arrange for a nurse to come and see me the following morning but eventually managed to wee but them it’s like a flood and sprays all directions, hence nurse cancelled.

However the GP stated an UTI can cause bladder retention so put on antibiotics for an UTI with no urine requested for a sample. I explained pass history and that I had no stinging but told I must take them so I did. They never helped and I finished the cause four days ago but since then have opposite problem. I am weeing far more but still hard to start and each time it’s like a dam has burst. Ever since the antibiotics I have had and still have constant pain in my bladder, groin, lower abdomen and my flank area both sides yet last three days have produced more wee then in last ages not only am I getting the aching and odd stabbing pains like when I have urinary retention but my. bladder feels irritated also as if on fire constantly and at times same sensation down both legs. I have been taking paracetamol maximum dose daily for over two weeks but has not eased pain or discomfort.

Other important information you should know is I have complex neurological problems for which I have been told by the neurology doctor in nothing more can be done. I was diagnosed it before 14 years with the rare movement disorder late onset generalised dystonia. No meds tried helped and before six years, as a last resort had Deep Brain Stimulation surgery with the aim of improving my quality of life but the op failed. By now I had been medically retired from an office job. Two weeks after the op I developed myoclonus muscle jerks and a very over exaggerated startle response so placed on o.5mg clonazepram twice daily which helped.

Then I went on to develop seizures and diagnosed eventually with frontal lobe epilepsy with tonic clonic seizures but discovered I was severely allergic to every epilepsy drug accept one for which I am on maximum dose, before the epilepsy diagnosis my clonazepram was upped to 1mg twice daily to try and stop the heavy falls backwards I was by now having daily. Since then I have gone onto acquire numerous other neurological symptoms such as stroke symptoms which self resolve within 24 hours, and episodes of tunnel vision and an episode of temporary loss of all sight in one eye. I have also suffered personality changes such as talkativeness, and become very impulsive. I have also been told I have damage to the thought processing part of my brain causing me memory and recall issues and mild cognitive issues and episodes of confusion.

I have been housebound now seven years and as of six months ago bed bound after four heavy falls in two months from just standing when pulling clothes up after using the toilet and before being able to strap myself safely in my wheelchair. The last fall before three months caused me to be admitted to hospital for a week. After being accessed by a hospital and community physio I have been told I must only transfer to my wheelchair now when a carer here and never go to the bathroom alone. My muscles are all becoming weaker and weaker despite exercise routines and physio. My legs, arms, torso, neck, hands and swallowing have become badly affected by my dystonia.

I now have carers four times daily and need help with washing, dressing. meals prepared for me and can now only eat puréed food due to worsening dysphagia. I now wear incontinent pants 24/7 and the NHS ones leak so buy tenna pull up pants with elasticity around the legs and maximum protection yet they still leak occasionally. As of yesterday and today despite adding another NHS pad inside when I wee it goes on so long it soaks through both pads and my clothes and I can feel the wee going all directions even if sitting upright on my adjustable bed.

It goes downwards and leaks and runs down my legs, goes backwards up to bottom half of my back and pours out sideways too despite the elastication for extra protection and soaks my trousers over a large area. It is stating to ware me down and I feel confused from going from constant retention problems to the opposite and weeing a lot and it spraying all directions and the constant pain and discomfort.

Now as writing this I feel the need to wee again but now back to stage of finding it hard to start anything at all. I just would like some advice please as on top of all my other health issues, muscle spasm pain constantly and constant fatigue and now the bladder problems worse than before urethra dilation but have no idea when I will get to see am urologist again and GPS want to start going back down the antibiotics for UTI route but have no stinging when I wee, but bladder constantly feels as if inflamed inside and burning.

I want and need help but told it could be over a year or more now before I get to see an urologist and feel desperate. I am single and as medically retired 18 years early cannot afford to go to hospital. Is it possible it could maybe interstitial cystitis. Sorry post so long and thank you for your patience but would appreciate any advice or thoughts you can give me.