Very Different Herpes Experience from the Textbooks

[40sBritishMale]

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!

[Flowerteacher55]

Hello,

I am so sorry that you've been experiencing these symptoms. It sounds very frustrating. Please know that you are not alone, and your symptoms sound like other symptoms I have heard on this forum! 

The testicular pain you are referring to and the pain with ejaculation reminds me of others who have explained it, and it may be epididymitis. However, it could also be from neurological pain associated with the HSV. Since HSV impacts the nerves, it can cause those shooting pains you are describing. However, the fact that this has been going on for five years is terrible. Perhaps a referral to a neurologist could help! 🙂  

Also, did you try the other two antivirals (Valtrex and Famcyclovir) to see if they would help you? Also, did you get a blood test or a sore swabbed to try and verify that you indeed have HSV, and if so, which strain?

I have never heard of others using Foscarnet, however it is typically used for those with CMV strains that are resistant. Did your doctor reccomend it?

I hope you feel better soon and your current doctor can help you. Stay strong and be kind to yourself!

Sending prayers of happiness and health your way! 🙂 

Blessings,

grace

[40sBritishMale]

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.

[Bloomer]

@40sBritishMale so you didn't have IgG test for HSV or swab of your lesions?

I know that in UK they don't do blood test because they are sometimes unreliable. I am living proof bacause I have this infection for 20 years and still testing negative on blood tests but I manage to get swabs two times and they came back positive.

Nerve pain is common with HSV but I am not sure that your symptoms are for sure caused by HSV. It is unusual for outbreak to start day after (it is usually 2 days minimum) and first outbreak is usually on the same spot where virus entered the body (usually genitals). 

Symptoms you are describing are very much consistent to pelvic floor dysfunction which can be caused by lot of factors ( HSV infection is one of them too). I know there are lot of therapist for pelvic floor in UK and my suggestion to you would be to get your pelvic floor evaluated.

Can you travel to France? I think you can obtain IgG test for HSV there. If I remember correctly there was a regular train line between London and Paris. 

 

[Dutchy]

The NHS don't do a blood test as they do not see the benefit in them, they view herpes as a manageable skin condition and will only confirm it by a swab of an active sore. No sores - no herpes is their view more or less.  The knowledge out there is poor, one particular NHS GU clinic I saw the nurse was unaware of what an igg blood test was and went away to ask a Doctor.  

There are literally 100's of private clinics in the UK who will do a igg blood test for anything between 100 and 200 quid. Be careful though, some of these so called expert clinics also don't know what they're on about.  But that said if you know what you want you can request an igg blood test and they will take your money and give you your results in about 24 hours or less and it should tell you whether you have HSV 1 or 2 - but remember it won't tell you where you have it or how long ago you got it.  Don't bother with any of the home kit style stuff, all rubbish, get a proper blood sample from a vein that gets sent to a lab. 

[Bloomer]

@Dutchy yes, NHS doesn't seem up to date or well informed when it comes to HSV infections from what I 've read. If you don't have sores, they will dismiss you. Herpes can manifest in so many ways and some people never develop sores but have other symptoms like nerve pain, symptoms that mimic UTI's, yeast infection and list goes on. 

I am not from UK but I was in contact with one of the doctors from there and he told me that they don't recommend or do blood test for HSV because they are not reliable. That was true in my case since I am still testing negative and I do have herpes which was confirmed by swab. 

Apparently standard IgG tests for HSV miss around 25 percent of HSV 1 and 8 percent of HSV 2 infection but that is not a reason for not testing. 

[40sBritishMale]

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!!

[Flowerteacher55]

Hi!! 

Great question you brought up; why do sores sometimes pop up in places that didn't have direct contact with another person's genitals?

Because genital herpes lives in the nerve bundle at the base of the spine, sores can pop up anywhere in the general region that braches off from that bundle. So, those with genital herpes may get sores on their upper thighs, lower back, buttocks, genitals, or anus. 

I hope this clears it up! 

Blessings of health to you!

grace

[40sBritishMale]

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.

[Flowerteacher55]

Hello!

Thanks for keeping us all updated! 

It's great that you are taking charge of your health and testing yourself.

Let us know what the next test says! 

Blessings!

[monroe]

On 6/16/2022 at 2:42 AM, 40sBritishMale said:

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!

i have been getting bad shooting pain down my leg i have been assuming it was bursitis or sciatica i take gabapentin but my partner just found out he’s positive for type one  coupled this be a flare up because i have no symptoms nor does he besides a little discoloration n some spots 

[Flowerteacher55]

Hello, @monroe!! 

I am SO sorry for the late reply!! 

I hope you and your partner are doing well. 

Does your partner have type on genitally or orally? Also, do you have oral HSV-1 (cold sores)?

It is possible you also have it. However, it is very low risk that genital HSV-1 passes from genitals to genitals. Often times genital HSV-1 is a result of receiving oral sex from someone with a cold sore/is orally virally shedding HSV-1.

Have you been taking gapapentin prior to your symptoms? If so, that's interesting, since gapapentin should help stop or prevent the pain you are describing. If you were just prescribed it to help with your symptoms, have you noticed any difference? 

Also, is the pain constant or sudden? 

Sending blessings of health and happiness you and your partners way!! 🌻🍀🦋

grace

 

[40sBritishMale]

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!).

[Flowerteacher55]

Hi @40sBritishMale,

I'm sorry that you are frustrated with everything. Have you looked into it possibly being balanitis or pelvic floor issues? 

I'm praying for you!! 🌻🦋

grace

[Bloomer]

Have you been checked for groin hernia? Hernias can produce symptoms like yours.

[Jessica88]

@40sBritishMale

This is a shot in the dark here, but the second I read about your rectum area being itchy and sore, I immediately thought of pinworms. It typically impacts children, but can impact adults. It has been reported to move into the testicular area as well. I’m not sure what your lesions look like, but maybe take a look and compare? I do hope you find answers soon, and some relief! 
 

hugs!