Hi there, coming here as I’m at my wits end; incredibly anxious and nervous about my ongoing health concerns, so please be kind.
In September I was rushed to A&E with extreme testicular pain and a constant urge to urinate. After an exploration operation, I was diagnosed with epidydimo orchitis and sent home with a month off work. This entire time the urge remained, so I was back and forth between home and the GP. I’ve found myself in a constant circle between 111, GP, and A&E - all sending me to the next person not wanting to deal with me. To date, I have been on three separate antibiotic courses and not actually seen a specialist urologist, just consultants and GPs. This has been extremely frustrating, as not only has my physical life been impacted but mental too. I recently was let go from my job as my performance dipped due to lack of concentration and ongoing sick days. I am unsure where to turn or what advice to take. Please if anyone has any suggestions I would love to hear. Thank you.
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BlueTee
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hello there, I’ll tell you two things: I was there and I was treated as if I had UTD or STD. Lots of antibiotics ad urge to pee and pain was there with no changes. I don’t know where you are but I am in Canada so I never saw an specialist only GD, I went many times to ER and last time I was there as the pain was horrible, I got the diagnosis that even now makes lough. They told me that I had a severe inflammation of the urethra due to possibly too much masturbation. Since I knew there was not help for me in Canada I contact a specialty clinic in Cancún Mexico where a urologist promised help either through him or his colleagues. Long story short I ended up seeing a neurologist who found an injury to the pudendal nerve as a consequence of a mayor surgery I had done (disc replacement surgery) he put me under neurological medicine and I was cured. Hopefully you got some lights
Hi there. Firstly I just wanted to thank you for being so thorough with your response. As you can imagine it is quite a taxing time for me so I really appreciate the time you spent writing this reply. I have also been treated as if I had an STD despite tests proving negative, but these came from my GP and not a specialist. That's a horrible diagnosis though I'm very sorry you went through that - is that even something that's possible ha? Your story does give me hope though. I had a procedure two weeks before these symptoms started: an embolisation whereby coils were to be inserted to my veins and stop a varicocele in my testicle. The procedure was disrupted after the x-ray machine broke and had to be aborted, so I had the puncture in my neck but no further treatment (this has now been sorted however). I know the location is similar but unsure of the connection between veins and my bladder, but that could make sense as a complication? The two week time period between is surely too close of a coincidence? As sadly at the mercy of the NHS, I've had to bite the bullet and book a private consultation next week, so hopefully I can get the ball rolling. Once again, thank you for your response
Fight for your health because, ultimately you are the only one who cares about your health. Your case is quite similar to my one. And as I told you after the urologist did all possible exams on me, he told me that most likely was neurological problem and sent me to the neurologist. Here in Canada they still thinking that it was excess of masturbation😂😂😂 wish you good luck
Absolutely and frankly it's been quite an intense wake-up call for me at a young age. Yes there are definitely some similarities between our cases so again I appreciate you reaching out. Well here's to hoping once I see an actual urologist I get some answers. A few have mentioned how it's possibly a psychologic condition, but in my eyes the fact that urine tests are showing blood and protein suggests otherwise. That's such a joke though, that must've been a horrible experience for you. And I doubt that's even possible!
Hi again. Just had a follow up with a GP who thinks it’s psychological but can’t explain the blood and protein in my urine, which still leads me to believe there are further issues. I was wondering if you could tell me what the type of medicine you were on to treat your pudendal nerve damage, so I could bring this up in a follow up appointment? Thank you
Hi there, thank you for your comment. Sadly I’m at the mercy of the NHS who are brilliant but working a broken system. I’ve been on a waiting list to see a urologist since October and no luck so far. I would very much like to speak to one though
Hi there. I've had extreme difficulty getting in contact with urologists in general as does my GP. They put me on a waiting list late November and I am yet to hear anything back. Since sharing this post, I've unfortunately had to bite the bullet and contact a private consultant who I'm due to see in the coming week. Hopefully here I can get the ball rolling and some answers. Thank you for your response though
Hi there. I recently purchased some and have been taking with meals. I was just wondering how this helps and also if you’ve had any experience with it in the past? Thank you
Oh perfect, seems like that has a whole lot of positive effects! I’ve been taking for a few days so shall see how I am after a while. I have not had a PSA test, what is that? Do you think it’s something I could request?
PSA is what older guys test for to rule out prostate cancer sorry I don't want to scare you Blue Tee - your PSA is probably high from inflammation of your prostate which you need to get on top of
No no don’t worry about that Not scared at all, it’s just something I want to fix more than anything because it’s driving me insane haha. Will definitely try to get on top of it once I find a professional who will take me seriously and I can speak to soonish - closest booking I can get is April 12th so annoyingly have to hold on until then :/
initial thoughts are have they checked for enlarged prostate? Performed imaging of your pelvis? Colonoscopy? Or for constipation or some kind of blockage? How are your labs? Anything off? Any underlying conditions? How's your sugar?
Hi there, thank you for your message. All I’ve had so far are various urine and blood tests plus one ultrasound, nothing else that you’ve mentioned or a cystoscopy. My sugar levels and bloods are normal; my underlying conditions are asthma and eczema plus generalised anxiety, none of which I can see majorly contributing to my symptoms. The only thing I would say that is off is traces of protein and blood, more so the former. Which leads me to believe there is an issue and more likely kidney related? Sadly I’m at the mercy of the brilliant but flawed NHS so waiting is a challenge. Appreciate your message though
Thank you for your message. Absolutely, there’s definitely an issue at this point if there’s blood and urine appearing in my urine still. Sadly though I haven’t been referred or even had any tests suggested to follow this up. I am continuing to chase and see what I can do.
you might want to try ringing the hospital that you were referred to and speak to the urology dept. Ask what has happened to the referral and when you can expect to hear.
Okay yeah that’s a good idea. There must’ve been a line of communication that got interrupted between the hospital and the GP, so somewhere along the line there’s information that’s not being relayed
if you do not have a copy of the referral from your GP to urology it might be helpful to refer to it. If you have online access to your medical records it should be there. Otherwise your GP’s secretary should be able to let you have a copy.
May seem basic and I would hope it already been suggested but an important thing is to drink plenty of water. Cost you nothing and an easy thing to try.
Hi there! Thank you for your response. Absolutely it’s certainly important and I definitely try to stay as hydrated as possible. I aim for around 2 litres a day (but admittedly come a tad below), and then I have a tea/herbal tea too. Only issue is the more I drink the more I urinate, like an insane amount.
Your problem does sound more complicated than mine, but I had the issue of having to pee every couple of hours. Diagnosis was shrunken bladder which needed rehydration. I was told to drink more water and pee less !When you feel the need to go, hang on a little while. Not upto the point where it uncomfortable, just longer than usual. Then next time a bit longer and so on.
Now on an average day I go about 4 or 5 times, and once overnight.
Thank you for your reply! Interesting, did you have any other symptoms? For me there’s the pressure/tightness in my bladder and lower abdomen area plus protein and blood in my urine. I definitely won’t rule this out though and have increased my fluid intake as a means to reduce acidity in my urine and “flush” it out. Am curious how they came to this diagnosis though, what types of tests did you have?
I believe it was unconnected but I was having pain in my testes. Best described as a 'squeezing' sensation. This was put down to my job, which at the time involved lifting and turning.The tests where basic, blood and urine tests, but the most telling was having to drink two litres of water then urinate into a 'urinal' which measured flow !
Ah okay thank you. Well I’ve been having pain in my testes anyways (due to a treated varicocele healing and complications from surgical exploration surgery for epidydimo orchitis), so I can’t confirm whether or not it’s all related. During my next check up I’ll definitely request these tests though — I just need to get to the bottom of it and taken seriously I feel
Hi. Did you have your private consultation yet? Anything come from that? I had a similar problem and it was a kidney tumour. They thought it was a renal cell carcinoma but, on resection, it was found to be a benign oncycytoma.
Hi there! Yes I did and funnily enough they thought it was kidney related too, mainly as nothing from my bladder or genitals was showing anything alarming. Did you also have discomfort in your abdomen and constant need to urinate then? How did you go about finding this diagnosis as in what tests did you have? The consultant suggested I go through NHS and prompt to get my bloods done more frequently as urine was showing concerning levels of protein and urine, was this similar to your situation as well?
Oh goodness, sorry to hear all of that. Sounds like a horrible experience for you. I hope everything is all sorted now?
Did you have many symptoms before showing up at A&E? Just as I’ve had blood and protein in my urine for six months now and they haven’t got any worse nor have I noticed any further symptoms.
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Not scared at all, it’s just something I want to fix more than anything because it’s driving me insane haha. Will definitely try to get on top of it once I find a professional who will take me seriously and I can speak to soonish - closest booking I can get is April 12th so annoyingly have to hold on until then :/ 
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