About 9 months ago I went to the doctor suspecting I had a UTI. My urine was tested and my doctor said it was minor but I did have one – I was surprised to hear him say it was minor as I was in so much pain. I have struggled with UTI’s my whole life but I had never experienced pain like this before. I started a course of antibiotics as requested. After a few days I went back to see my doctor- as the pain was not getting any better. My urine was retested – and there was no sign of infection. My doctor asked me to finish the full course and come back if I didn’t feel better then.
I didn’t feel better!
I was sent to the hospital for a renal scan – this was very painful for me as I was forced to hold a large amount of liquid in my bladder for a long period of time. I cried from the pain for the full duration of the test. The test results were clear – and gave no clue as to why I was in pain.
I was then referred to a kidney specialist as there have been high levels of blood in my urine since a young age. She requested I completed a 24 hour urine sample and have bloods taken at pathology. On completion of the test my specialist advised that I most likely have one of the following conditions – Aurortis Syndrome, Thin membrane Disease or IGA Disease. However, she did not see any reason for concern as my kidney function was normal, there was no protein in my urine and my blood pressure was normal. She recommended that I repeat the 24 hour collection test every 6 months. I must admit that I failed to do the test 6 months later much to the disgust of my doctor. I feel that the test is un-necessary as I have had blood in my urine since I was a toddler without to many dramas. As the test comes at an expense and I am forced to take time of work for it I decided once a year would be enough…..
Anyway…by now a few weeks had passed since the test. When I had spoken with my GP - the pain was fading and we both agreed that I seemed to be getting better whatever the problem may have been and there was no reason to be alarmed. Over the next week or so the pain almost faded completely. A small amount of pain remained for about another two months – I had begun to believe that I would experience a full recovery – but eventually – I did.
Now some 8 months later – I am re-living the nightmare. Once again I was given an anti biotic and told the infection was gone but the pain still remained. I find the pain to be much worse this time round. One morning I took myself to emergency. It was 4am and I had not been to sleep because of the pain. They gave me a new antibiotic- I am not sure why- as there was no infection. They gave me Panadeine Forte for the pain which did nothing but make me feel sick and deluded. However, It did knock me out and I was gratefull for the few hours sleep I was able to get.
The next day I went to see a different doctor. I cried through the entire appointment because I was in so much pain and I was so frustrated from a lack of sleep and a constant nagging pain from which there is no relief. I found her final diagnosis to be absolutely ridiculous. Apparently this was all caused by constipation. Whilst I agree this is an issue (most likely due to the antibiotics I was given for the infection) I do not believe it is the main problem. She asked that I complete my 24hr collection again and introduce more fibre into my diet. I left the clinic feeling incredibly frustrated.
I did the 24hr test the following day as requested and my bloods were taken on completion of the test the following day (which was this morning).
I am now left to wait for these results which I’m sure will yield no answers once again. I am still in pain but there is nothing I can do. I am fed up. I have never been so frustrated in my whole life.
Can anyone help me? I am desperate.
My symptoms are:
- Bladder Pain/discomfort - as though the bladder is full. The urge to pass urine is always there. Sometimes like a burning feeling inside the bladder. There is no relief from this pain. Urinary alkalinizer drinks do not help, nor do pain killers.
- Decreased bladder capacity – whilst I have been trying to flush my system by drinking lots of water, my bladder doesn’t seem to hold much.
- Urgent need to urinate – the urge to go is always there, but I find after having a drink my bladder seems to fill very quickly, the pain increases, and I need to go to the toilet urgently. When I do go – I only pass a very small amount and this does not give me any relief. There is no burning or stinging – but passing urine seems to cause pain in the bladder itself. Sometimes I feel like I really need to go but nothing comes out – this is when the pain is the worst.
- Pressure/pain above the pubic area – this area feels as though it is swollen and hard. It is not tender to touch and there are no sharp or sudden pains more like a dull aching pain which never goes away.
- Constipation – I have increased fibre intake with little to no results.
- Headaches – These can last up to an entire day and are often accompanied by nauseousness and a dizzy feeling. Codeine based tablets do not give me any relief, in fact they seem to make matters worse.