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Stillconfused...

16 years on, constant pain and still no diagnosis

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Stillconfused...

I'll do my best to keep this as short as possible but as mentioned in the thread title, this has being going on for quite a while!

So over fifteen years ago I was just about to start college when my then-boyfriend gave me oral with a barely-healed coldsore. Two weeks later, I got a painful red lump (no blisters that I could see) exactly where the coldsore would have touched my vagina alongside shooting nerve pain. I wasn't able to see a doctor until about a month later, and without visually examining or swabbing me (the lump had gone down by that time) she told me "Yep, herpes" which was pretty much the response I had been expecting.

The lump never really came back, but the pain (burning, itching, tingling) has continued pretty much constantly since then. About a year after the initial OB, my boyfriend (the one with the coldsore) and I stopped using condoms and within a month he got a painless red rash with spots all over the tip of his penis, which came and went several times over the following year. He mentioned having some nerve pain down his leg. He refused to see a doctor and we eventually broke up.

About two years after "diagnosis", another doctor suggested a blood test, which came back negative. I was elated until I found out that the tests can miss HSV1 antibodies (I'm in Europe and don't have access to Western Blot). Most of the doctors I saw (and I saw a few) said that herpes doesn't present like what I described and doesn't cause constant symptoms (yeah right...).

So sixteen years down the road I've had several swabs, all negative (but basically useless without blisters if I've understood correctly?) and two further blood tests (twelve and four years ago) both negative. The symptoms have continued with varying intensity, mainly in exactly the same spot as the original OB but sometimes with more generalised itching and unilateral nerve pain in my leg, and in the past couple of years I've developed vestibulitis. On the occasions I've been to see doctors during more intense episodes, they told me they could see a "rash". I took valtrex short-term on a couple of occasions and it might have had some effect, though it could also have been in my head. I've had two serious relationships since then and told both upfront that I probably had herpes. Neither guy ever showed any symptoms, but they never did any follow-up testing to my knowledge.

I'm sick of this weird limbo situation. I'm sick of being in pain all the time and not knowing what to tell my partners. I'm sick of not knowing if I'm OBing or just suffering from weird residual nerve pain. Therefore it would be great if you guys had any light to cast on the following:

- I know blood test are not 100% reliable, but is it really possible to test negative on three separate occasions, including 10 years down the line?

- Could my college boyfriend have caught GHSV1 from me if he had HSV1 in the first place? I know they say it's not possible, but I've also read that that's a myth?

- Does my constant pain indicate that the virus is active and that I should be worried about transmission (therefore stop having sex, cause it's basically all the time?)

- Two guys (apparently) got off scot-free despite years of unprotected sex: does this mean anything or could they just have been lucky?

- If it's not GHSV, what the hell could it be?? I've been tested for just about every other STD under the sun.

My thanks in advance for your answers!

 

 

 

 

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WilsoInAus

Hi @Stillconfused...

Very unfortunately, I think here we have an example where the least accurate of all diagnosis approaches, the ‘visual’ has really thrown you for years. I am so sorry about that; I really feel it is a great reason for why this website exists. So let’s cover off two main issues I think are playing on your mind: the evidence this is not herpes and some thoughts on what it is. I have no real answers on this front, but you will see from reading one or two examples on here that the symptoms you have do have underlying causes that are not herpes.

The evidence you do already have to hand, it is just a matter of perspective as to the chances of observing each of the aspects of your journey to see that it just is not viable to suspect herpes.

-          No outbreak, this is a biggy. A primary infection of HSV-1 is very typically no trifling matter, over 90% of people infected experience clusters of sores very likely to send you to the doctor, and not having a single non-ulcerated bump. Having to swab properly ever is a reasonably convincing piece of evidence.

-          Your partner at the time is extremely unlikely to have ended up with HSV-1 on his genitals, this has never been observed for a male to get a subsequent genital infection if an established oral infection is present. Your other partners not being infected actually doesn't add a lot to the argument as transmitting genital HSV-1 is very rare and they may have already have had it.

-          Blood tests in the year or so after infection for HSV-1 have a 95%+ detection level. What you are reading about in terms of missed infections for HSV-1 is usually because the infection is long term, most people are infected as infants, hence have had the virus 20, 30 or 40 years plus when undertaking a blood test.

-          Note that the reason why they test for STDs such as chlamydia and gonorrhoea is not because they cause symptoms, but it is because they typically do not cause symptoms – especially in females. There are heaps of bacteria and viruses that are transmitted that cause symptoms that are not tested for – why? Because they are symptomatic and hence treated on that basis. Most people believe that when they experience issues genitally they should test for STDs, which is not correct.

-          HSV-2 extremely rarely causes the issues you describe. HSV-1 is 5 to 10 times weaker than HSV-2 in the genital area and is not known to cause prolonged issues of the nature you describe.

Individually, the chance that you have herpes based on the above items individually is a few percent. Combined there is virtually no chance at all!

Now there are not extensive details of exactly what you are experiencing. I read burning and tingling etc. There are conditions that include vulvodynia, pelvic floor dysfunction and various nerve issues that do all that. I recommend messaging @WannaCry who is active and has experienced non herpes issues genitally.

I recommend you read this lady’s story:For those who continue testing negative despite symptoms

In that you will find the story of woman who eventually believed her issues were not related to herpes because she challenged herself for this to be the case. There were numerous voices in her mind (as well as the thread!) that tried to tell her otherwise – but for what purpose and advancement?

This is about your belief and your tenaciousness to seek out and live the truth!

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Stillconfused...

Thanks for your feedback @WilsoInAus. I guess that I'm thrown by the fact that my symptoms started (having had no issues of this kind beforehand) after certain exposure to an active coldsore. And while I know that presentation was not typical, I think we all realize that HSV is not always textbook.

That first OB, if that was what it was, was extremely painful. I didn't see a doctor not because I didn't feel the need to but because at the time I lived with my parents in the middle of nowhere and it would have been impossible to do so without them finding out.

Some form of pelvic floor dysfunction is of course a distinct possibility. @WannaCry, I'd be interested to hear your opinion if you don't mind? Basically the symptoms are these:

Since the first "OB":

- Burning and tingling in the same spot as the original lump, occasional swelling

- Nerve pain in my left leg, sometimes all the way down to my toe

- Occasional generalised itching

- Redness (according to the doctor)

For the past couple of years:

- Vestibulistis

- Frequent urination

- Painful sex

- Pain in the lower abdomen

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whyme24
5 hours ago, Stillconfused... said:

Thanks for your feedback @WilsoInAus. I guess that I'm thrown by the fact that my symptoms started (having had no issues of this kind beforehand) after certain exposure to an active coldsore. And while I know that presentation was not typical, I think we all realize that HSV is not always textbook.

That first OB, if that was what it was, was extremely painful. I didn't see a doctor not because I didn't feel the need to but because at the time I lived with my parents in the middle of nowhere and it would have been impossible to do so without them finding out.

Some form of pelvic floor dysfunction is of course a distinct possibility. @WannaCry, I'd be interested to hear your opinion if you don't mind? Basically the symptoms are these:

Since the first "OB":

- Burning and tingling in the same spot as the original lump, occasional swelling

- Nerve pain in my left leg, sometimes all the way down to my toe

- Occasional generalised itching

- Redness (according to the doctor)

For the past couple of years:

- Vestibulistis

- Frequent urination

- Painful sex

- Pain in the lower abdomen

I have the exact nerve pain. I am sure it is herpes. I am devistated when i read you still have it after 16 years . I am scared now. Medicine still dont know much about viruses and their effects. So i can ensure you what you are telling are not coincidence. I realized one thing all the people with the nerve pain usually had a bad initial outbreak and not much after. Initial outbreak is very important. It will set your viral load in nerves hence the symptoms.

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Freefalling87

Although I am male, I have nerve pain down below as well. Instead of my leg, it is actually in my scrotum. I contracted this virus last year in December 2017. My initial outbreak was in my throat, nothing down below at all. Test in January confirmed that I had HSV-2; tested looking for IGG antibodies which were at 23. In April, I believe i had a very minor outbreak with just one spot that may have been a blister in my groin. Although there was no pain, I was afraid that it would get worse so I decided to take my valtrex for 5 days (the spot disappeared within 3 days). Two days after I stopped valtrex, the nerve pain came about and was in both of my inner thighs and my scrotum. From that moment on, the nerve pain moved from the thighs and stayed only in my scrotum and has persisted daily ever since. 

My nerve pain is constant; not in the sense of 24/7 non stop, but on and off throughout the day, every day. So in essence, I'm in the same boat with you where I don't have any visible symptoms (no redness though in my case), but have the constant burning sensation. I will admit, hearing your story and knowing that this has persisted for you for over 16 years is kind of disheartening to me. I keep telling myself that because I am still new to this virus, my body is still getting use to it and that after the first year one day the nerve pain will stop completely. Now I am not so sure. 

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whyme24
1 hour ago, Freefalling87 said:

Although I am male, I have nerve pain down below as well. Instead of my leg, it is actually in my scrotum. I contracted this virus last year in December 2017. My initial outbreak was in my throat, nothing down below at all. Test in January confirmed that I had HSV-2; tested looking for IGG antibodies which were at 23. In April, I believe i had a very minor outbreak with just one spot that may have been a blister in my groin. Although there was no pain, I was afraid that it would get worse so I decided to take my valtrex for 5 days (the spot disappeared within 3 days). Two days after I stopped valtrex, the nerve pain came about and was in both of my inner thighs and my scrotum. From that moment on, the nerve pain moved from the thighs and stayed only in my scrotum and has persisted daily ever since. 

My nerve pain is constant; not in the sense of 24/7 non stop, but on and off throughout the day, every day. So in essence, I'm in the same boat with you where I don't have any visible symptoms (no redness though in my case), but have the constant burning sensation. I will admit, hearing your story and knowing that this has persisted for you for over 16 years is kind of disheartening to me. I keep telling myself that because I am still new to this virus, my body is still getting use to it and that after the first year one day the nerve pain will stop completely. Now I am not so sure. 

same. cant live my life, thinking about my regrets all the time it burns

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WannaCry

@Stillconfused...

I am sorry it took so long for me to reply to your post. I've had some issues being able to log in to the site.

From what you are describing, no I do not believe you have HSV genitally of any kind. Visual diagnosis is garbage for HSV diagnostics, and the fact you have had negative tests since then (multiple ones with years inbetween) pushes that fact even further.

Also what you are describing sounds extremely similar to what I suffered from with pelvic floor dysfunction.

My SI joint was pushed out of place and remained incorrectly positioned which caused my pelvic floor to spasm and form trigger points - this happened after sex so of course you see how the HSV worry came to be.  I had multiple blood tests, swab tests, and even a western blot.

They were all negative for HSV2.
(I do have HSV1, but that has been known since I was 9 )

The results of this was shooting genital pain, the feeling of having razors shoved into my genitals if i sat for more than 5 minutes normally (I had to either lay down or lean on things. Driving was agony), burning pain in my right butt cheek that travelled up my back and down my leg as far as to my heel. I also had severe urinary issues that originally where thought to be a UTI but did not resolve with antibiotics. There was also sexual dysfunction along the lines of vestibulitis/vulvodynia.

I had to find a pelvic floor therapist to see, and saw them very regularly for a decent while. I was given TENs therapy for the bladder issues (which did resolve it. It was a massive relief to not be peeing every 10 minutes and having weird bladder pain after said peeing) and other physical therapy for the vaginal issues. My PT eventually was able to find the main offender trigger point and release it and that resolved most of the pain, although it took a month for the nerves to 'settle' after being pinched for months by the trigger point. I am not 100% pain free. It's about 99%. Stress can make things 'flare' as once you have this kind of thing happen to you your body has tendencies to cramp itself back up.

The book "Ending Female Pain" by Isa Herrera was the starting point for me to find help for my issues. It can be purchased as an ebook. Feel free to msg me about any other questions you may have.

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