40sBritishMale

Ironman22, your symptoms sounds quite close to mine. I have had it for nearly 6 years now (I still haven't actually had this confirmed by a swap since no spot ever lasts longer than a week and they are not like blisters at all, they don't erupt, they are quite dry). I feel like I have symptoms all of the time in one form or another. I have seen doctors, urologists and recently a neurologist but I am still stuck in the same place. All tests come back negative. Here are my symptoms: - Intermittent testicular pain (both testicles, together and separately) - Intermittent groin pain in the lymph nodes - Sudden itch in my foreskin which can be satisfied with a light pinch, even through clothing - Occasional tiny red spots on buttocks and less than 5 bigger spots in as many years on front public area. One tiny one on penis once. - Stiff neck feeling - Tingling in hands, forearms, feel and lower legs. - Shooting pains in groin/legs/fingers/toes. In 6 years I have undergone the following: 30 days course of doxycycline (no effect), 30 day course of acyclovir (no effect). For a long time the worst aspect of the whole thing is the testicular/groin pain. Without that it is manageable. This comes and goes. I have had lots of STI tests which all came back negative. I did a Herpes blood test for antibodies and that was positive for HSV-1 but that doesn't reveal much as my wife has cold sores anyway (I never get mouth cold sores even though she regularly does and has for years). What I never see on here is a solution to anyone's problems that actually works. There are success stories in telling partners etc. but I've yet to see a medication that works which everyone raves about.

Yes, I get a huge range of different symptoms (to the point where every time I see a doctor I feel like they think I'm making it up). I have had dull aches on the back of my calf muscles in the lower legs. Usually both legs at the same time.

I regularly feel a dull ache in the groin and testicles as well as odd itching sensations which appear sometimes in the lower back or public area (and even lower stomach). Difficult to describe them as they vary but sometimes it's almost like a burning sensation that goes off very quickly. Sometimes it's an itch that can be eased simply by pinching the skin of the affected area. Other times I get a shooting pain from a testicle down one leg, but again this only lasts a couple of seconds.

An update on my case: the swab I did on a small bum spot came back negative for HSV1 and HSV2. In a way I am disappointed as I am back to square one. I did have around 10 days of no pain in the testicles/groin but yesterday the testicular pain has returned. I also felt like I had pins and needles and my arms and feet when trying to get to sleep and my bum hole has been sore/itchy for about a month now. Almost like I have had a hot curry every day (but of course I haven't!).

I am going to update my progress (or activities anyway) on here so others can see what's happening. I bought an anti-body blood test kit and this has now been returned with the results as HSV1 POSITIVE and HSV2 negative. This did come as a surprise to me as I thought I'd already have the mouth cold sore virus in my body since my wife gets them occasionally (even though I've never had a mouth cold sore). I really expected to test positive for HSV2. I know the tests are not 100% reliable though so I have just received a swab testing kit which is the most reliable source of testing. I believe that once I can get a positive test for it, the GU clinic will take me more seriously (rather than someone who 'thinks' they have herpes and is just a worrier/imagining the pain). The difficulty I have is that I only ever get tiny little spots on my bum which heal within a few days. They don't ever get to a 'blister' stage, they look just like a little ingrown hair kind of spot. So, I have swabbed it today and sent off the sample. There wasn't much to swab but I managed to scrape off the top of the spot and roll the swab around as best I could. I have also swabbed my penis with it just for good measure. I am expecting it to come back negative and if it does I will order a second test to keep in stock until I get a better spot.

Yes, this is my exact experience when visiting NHS doctors - no sores = no herpes. When the sores come and go so quickly (and they are so small and insignificant) it is impossible to get them swabbed under the current system of appointment only (no walk-in clinics due to Covid). @Bloomer - I don't think it's pelvis floor dysfunction as the main symptoms are problems with bowels/urination etc. and I don't have that problem at all. I know for a fact that this is an STI, I know exact when I picked it up as I was painfree the day before and in pain the day after. My private GP I have been using has seen some mild spots on my bum but didn't swab them. I think I will try a blood test and maybe next time I have a half-decent spot I will try and get an urgent appointment to get it swabbed. I have never had any spots on my penis or testicles, so it's odd that the virus is supposed to break out where it first went in as no woman has ever put their vagina on my bum!!

When I originally went to the STI clinic the doctor did diagnose epididymitis but I did not think this was correct as the pain should be in the left testicle whereas I thought it was more in the right. I took the course of antibiotics anyway to rule it out, but it didn't stop the pain. There is no pain during ejaculation, it just seems as though ejaculation is what's needed to stop the pain but after it's done, the pain just comes back. The last doctor I saw said that as acyclovir is not working, the other medicines you mention are also likely to not work as they are from the same family of medicines. I noticed Foscarnet was also on the list the doctor was looking at but it seems like it has to be injected into a vein every 8 hours and it should be until until the sores heal up (which doesn't make sense in my case because I have no visible sores most of the time, but I still have the pain). I have never had a test or a confirmed diagnosis. I asked a GP and he said there is no blood test for herpes, but maybe that was wrong. I don't think I've ever had a sore that is big enough to swab, other than the original one 5 years ago. I contacted my GP surgery and they said I should go back to the GU clinic as they are the specialists in sexual health.

Around 5 years ago I got herpes after a one-night stand on holiday. I did wear a condom but it split. The very next day I had an ache in my testicles and I knew something was wrong. I went to the STI clinic a week later and everything came back negative (although they don't routinely test for herpes). A few weeks later I got an unusual sore spot on my bum and after doing my research online, I knew I had picked up herpes. I am ashamed to say I was already with a partner at the point of the one-night stand, but I confessed everything and she understood and forgave me. I am still with my current partner so she must also have herpes but she does not have the symptoms I have - mine are really tarnishing my life at the moment. All the online information (NHS website etc.) speaks mainly about sores and outbreaks that fade over time. My experience is very different - apart from the first sore, subsequent ones are very tiny and insignificant and they heal and disappear within a couple of days. They don't bother me much at all. What bothers me is the pain I get in my testicles, lymph nodes (in the groin crease where your legs meet your upper body) and now in my lower back. This is usually a dull ache but sometimes the pain can shoot down my legs a bit. Recently the back pain has got worse and it makes me feel like I have a bad back and struggle to bend down or get up off a chair. Treatment-wise, I had the original STI screening 5 years ago (all negative) and have had another one 6 months ago (all negative again). I saw a GP 4 years ago with my herpes concerns (he could find no signs of it, but didn't even look for spots on my buttocks). I have found that GPs have very little knowledge about herpes. They expect to find bad sores like the textbook examples, but the reality is very different. I have since seen another GP this year and tried a course of acyclovir (this made no difference at all) so I am in pain a lot of the time. Sometimes the pain can disappear completely like it did last week for 4 days and it was heaven, I felt like a normal person again. I have been trying to work out what triggers the pain and I know that ejaculation is definitely a trigger. The testicular pain feels like I need to ejaculate to relieve the pain but it only goes away from a few minutes and then returns. I am currently using a private GP to speed things up. I will soon be returning and I am considering asking for foscarnet as this seems to work against acyclovir-resistant strains. Has anyone else taken this and what were the results or side effects? Looking online, it seems the pain may be a type of nerve pain and there are tablets that may work for it. Does anyone else have experience of this? Also, does anyone else have similar symptoms to me? I feel like I am the only person in the world experiencing this!