This will probably sound very familiar to most on here but after finally believing the negative test results, accepting the fact that I didn’t have herpes/chlamydia/cancer/black plague, that I wouldn’t be passing anything on to my partner, that our NHS GPs are clueless and have never heard of this, that there are real people out there describing the exact same symptoms and learning the terms Chronic Prostatitis and Chronic Pelvic Pain Syndrome I’m just learning about the condition and coming to terms with the bizarre symptoms and find myself here, reassured that it isn’t just me.
November 2013 I thought I was getting a UTI. I wasn’t really drinking enough water and managed to talk myself into an infection starting. When I was a student in the 80s I had a nasty bout of NSU which was very difficult to get rid of and took many trips to the GUM clinics in several cities where I lived and courses of antibiotics before it finally went away. It left me with bad mental scars about the whole experience and a worry that it might not have gone away but just gone into hiding.
I started on the cranberry juice but we were going away for the weekend so I bought some condoms to be safe. Things still felt unsettled but so as not to disappoint we used one. A couple of days later I felt strange tingling in the head of my penis, sometimes like little electric shocks and sometimes like it had been attacked with stinging nettles. There were no visible symptoms and no pain in the pipe but this became worse and was present all the time driving me mad. I couldn’t concentrate at work with it irritating in my trousers. I became even more distressed on reading up on STIs on the Internet and talking myself into Herpes!
I visited a private STI clinic and paid for the full set of blood and urine tests. I was reassured by the doctor who tried to talk me out of most of the tests and said he would be ‘gobsmacked’ if anything came back positive. I asked him what else could cause such symptoms and he said it is quite common to react to the lubricant, spermicide or latex in condoms. It had been 15 years since I last used one and apparently they have changed since then. I left there very relieved believing I had my life back and wasn’t going to have to end it all due to the shame. I had some residual pain and discomfort for a couple of days but took no notice as I believed I knew what it was (nothing nasty) and it would soon pass. Lo and behold it all went away. I got my life back and all went back to normal. Thank goodness for that.
I actually think he was wrong, there was no reaction to anything in the condom it was worry and anxiety that caused those symptoms but it didn’t matter. Whatever made me believe that there was no STI made it all go away. That, I think, is the key. Belief that there is nothing wrong and an end to the anxiety allowed something somewhere to relax and stop causing the problem.
Unfortunately in January 2014 I had a kidney stone make a break for freedom, showing me what childbirth feels like and giving me Tourette’s syndrome for 2.5 hours before it forced its way through. A subsequent CT scan showed 4 more stones in there, 2 on each side. A few days later the weird twinging feelings appeared in the head of my penis again causing me more worry and anxiety as to the cause.
When I saw the Urologist who booked me in for shockwave treatment I asked him about the condition and he examined me but didn’t find anything wrong or mention any possible causes but did give me some anaesthetic gel (Instillagel) that he uses for cystoscopy. That was a godsend and kept me sane while I was still trying to work out wtf was going on. We went away again for a long weekend involving being stuck on a plane and taking minibus tours and the numbing gel allowed me to travel without going out of my mind with the irritation.
With no signs of this getting any better I found that I can buy this gel online so I now have my own stock.
I became more and more worried about what the problem could be. I went back to the private STI clinic who took more blood and urine tests for everything from Herpes to Chlamydia, Gonorrhoea and about 5 more things I’d never heard of, all negative. About this time (mid Feb) I started to get stinging in the urethra after urinating as well as periodic stabbing pains in there. I was also getting weird muscle cramps starting along the perineum now as well as pain at the front where my bladder is. Convinced that this really was a UTI starting now I went to an emergency GP on a Saturday who checked urine, prostate and examined my penis. After some persuading he accepted that it probably was a UTI, sent off the urine for analysis (negative) and gave me 2 weeks of Erythromycin. Apart from a mild placebo effect along with some antihistamines I decided taking in case this was still condom allergy (3 months later!!!!) they had no real effect.
I went back to the STI clinic for a third time after telling myself the previous urine test was probably a bad test because I hadn’t left it long enough after the previous pee before giving it. The doctor said (quite rightly) that he was more concerned by my worrying than by any possibility of an infection but reluctantly agreed to do more tests for the sake of reassurance. This was costing a fortune by now. He took another blood test for herpes, initial urine for 7 types of STI, mid stream urine for UTI and a urethral swab(ow!). Yes, we all know the pattern by now don’t we? All negative.
So why the horrible symptoms then?
The symptoms the spread so I was getting more discomfort in the perineum, sitting was starting to get very uncomfortable and I was experiencing pain and discomfort from the coccyx down both buttocks and thighs and on my right leg all the way to the knee similar to sciatica. Sometimes twinges all the way to the sole of my foot! This made me more convinced that there is a problem affecting nerves. I did more reading around, finally found people reporting the very same symptoms but didn’t know what it was or how to cure it, found a reference to prostatitis and A Headache in the Pelvis and eventually this forum. I bought the book and started to read it. Started moment to moment relaxation straight away and found that yes, I’ve been clenching without realising.
I went back to my GP armed with a diary and list of possibilities off the Net. She said she had no idea what it could be, took another urine sample(negative), gave me some amoxycillin anyway to get rid of me and effectively kicked me out saying I was over my appointment time. I did manage to ask about CPPS before I left but she said she had only heard of it in women!!!!!
I could live with the aches and discomfort in the muscles if that were all but what really knocks me sideways is an attack of stinging urine in my urethra. I can’t cope with that. It’s like my body releases a load of chemicals in response to the pain and I can’t concentrate any more. All I can do is focus on the stinging pain and wait for it to go off. Maybe it’s shock. I tend to go freezing cold as well and afterwards very tired.I’ve had to go to bed at 8pm a few times and gone straight to sleep. I’m an owl, that never happens. Paracetamol, Ibuprofen and codeine don’t really touch it I just have to wait and withdraw from the outside world. Sometimes this takes half a day to a day and a half to subside and there seems nothing I can do about it. I can feel the muscles in there tightening in response to the pain but I can’t stop them and I just want to hunch forward to protect the area. It feels like I still feel the pain when I actually think it has stopped. Somehow it seems to echo. I know it has stopped but I feel like it is still there.
Apart from the gel my other lifesaver is barley water squash. It works better than cranberry juice and increases the PH of my urine protecting me from the stinging. This works so well that I have been drinking it non stop for weeks now, don’t drink anything else and dare not stop. If I go on a car journey I mix up plenty in bottles and make sure I won’t run out. Not sure if I still need it but don’t want to risk it.
I’ve not mentioned sexual symptoms yet. Since the January onset erections have felt a bit weird. The area behind the testicles is rock hard, like a steel girder but not in a nice way. Unnaturally constricted(and I think there is something in that word, something is constricting things in there). The head hasn’t felt normal since either and any sexual activity aggravates the urethra making a stinging attack more likely. Masturbation is very likely to make that happen at the next pee so I’ve nearly stopped even though I used to empty daily. Intercourse is more gentle though and I reckon gives a 50/50 chance of resulting in stinging afterwards. Can’t give that up though, I’ll put up with the pain.
Also, not sure if the penis head has changed. Was it that pale before? Was the ridge that pronounced? What are those red marks, were they there before? Is it more purple now? I don’t know I never looked. Was it that dry? Is that why it is prickly? I tried Canestan to moisten it but that felt weird as well. Often I just put the numbing gel on which allows me to forget about it and live a normal life for a while. I hate the fact that I have to do something so stupid. I mean really hate it. Why can’t I be like normal people? What a stupid thing to have to do.
I know this is a vicious circle complaint. Anxiety caused tensing, caused constriction caused inflammation and pain which in turn is feeding the anxiety. Even though the original STI anxiety has gone the cyclic events have remained. I was hoping that numbing gel and neutral PH urine would prevent pain and break the cycle but every few days it comes back and slaps me in the face to remind me it is still there.
Reading others’ stories and other advice I too have found hot baths help a lot (improve circulation and relaxes muscles probably) and have started the HITP stretches. I think they are helping but of course I ached more after I started but I’ve kept going. They have led to a different feeling in the perineum a bit like if you crouch down for too long and cut off the blood to your knees and then try and stand up. It’s that recovery ache as the blood flows back in and the feeling comes back.
Other stuff in no particular order now: Wine appears to be a bad idea unless washed down with lots of water based drink. It took quite a while before I felt I could finish a glass. Luckily Guinness doesn’t seem to be a problem but also washed down afterwards with barley squash as alcohol turns urine even more acidic. I only tried coffee once and that was a very bad idea. It set off all the troublesome muscles in the area twitching and cramping all at once. Not doing that again.
Coming up with new theories to prove or disprove now. I know what caused this for me, it was my own anxiety and worry. I know the relief of negative STI results made it go away in November but I can’t seem to get my head in that place again. Has my overactive mind (a powerful weapon) persuaded my body that there is an infection that needs the immune system to go and attack when there is no such infection? Is the immune system attacking my own body i.e. the urethra and causing it to become inflamed and susceptible to stinging by acidic urine thus becoming a self fulfilling prophecy? Has anxious muscle tightening caused muscle fatigue and inflammation to the point where they are trapping nerves from my lower spine to all the bits and pieces down there?
I’m still using the numbing gel a couple of days on and a couple off, chain drinking barley water squash, moment relaxation, stretches, including the yoga pigeon one and yesterday I bought Quercetin, Saw Palmetto and started taking them. Also trying Benedryl again to see if it helps with inflammation.
Not sure if it is getting better or worse but I’m now getting shooting nerve type feelings, not really painful but like when you have had a dead leg and the feeling starts to come back and gives pins and needles.
Started enquiring about acupuncture. Of course he has never heard of CPPS and quickly Googled it when I asked him.
From all my reading I’ve found people who say they have found the answer and these can be anything from “hey it was fungicide resistant thrush, all gone now”, “xyz infection, antibiotics did it for me”, “fear of STIs went away and it all stopped” to Counselling or finding God. Personally I think whatever the brain needs to believe to stop the worry and relax might be the answer. Wish I could find it this time though. I’m actually concerned that the longer it goes on the more likely this could become permanent (hey, I’ve just found something new to worry about
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