Constant pain, shame, confusion- help!

[moonrae]

I'm having a really tough time dealing with what seems like a never ending genital hsv-1 outbreak. Everyday for the past four months since I was exposed to the virus, I've had at least one of these symptoms- vaginal itching and burning, discharge, thigh/leg/ankle/foot burning and itching, swollen left leg, blood marks under my skin, "hot flashes" at night, intense headaches, nausea, eye pain, intense tingling in my face, and so much frustration over the fact that it never ever seems to stop. The entire lower half of my body constantly feels "off," and then is attacked by stinging pains, or some combination of itching and burning. I can't even sleep through the night.

I've tried Valtrex, garlic pills, St. John's Wort, antihistamines, strong nerve pain meds, vitamins, probiotics, green tea, ice pack between the legs- NOTHING helps. I've given up caffeine too- that hasn't helped either. I feel like my body is just a prison and there's no way out. Sometimes I just want to vent, sometimes give up, sometimes keep searching for a diagnosis/treatment. I've just about lost it. :'(

The closest I've come to a genital lesion has been a pimple on my thigh, which my gyno refused to culture at the time. Another one looked like it was about to come up a month later, but it went away overnight. So I can't even be 100% sure that I have the virus genitally. I've already had an oral lesion so my positive IGG test for HSV 1 (negative for HSV 2 multiple times) wasn't helpful. I've been tested for every other kind of STD and vaginal problem under the sun, but they've all been negative. I've never had any of these symptoms before. 

I'm in pain almost every hour of every day. I can't believe this has happened to me. I thought genital HSV-1 was supposed to be the mild version. I've only had an oral lesion once, and though it felt awful for two weeks, it went away and never caused any additional problems for me.

Any suggestions or support would be greatly appreciated.

[WilsoInAus]

Like the majority of the population, you have an oral HSV-1 infection most likely. Maybe a parent can confirm that you had cold sores as a tiny child? As it is reasonable to assume you have HSV-1 and had it a long time, this means two fundamental things:

• chances of being infected genitally with HSV-1 are negligible
• if you were infected genitally, then your body would address the virus the same way it does for the oral region, that is, no symptoms.

Hence it doesn't really seem likely that HSV-1 is the cause. HSV-2 doesn't really cause these symptoms in people, let alone those with HSV-1!

For your own health, you need to keep going with a diagnosis. Remember they only test for a handful of bacterial STDs. There are hundreds of micoplasma that cause issues.

It is tough and I'm sorry you're going through it. Try a new doctor and a fresh approach. My suggestion is that you could have an issue generally with your back so you could consider a chiropractor and take up yoga.

[VVK]

Try this, if you can:

1. stop taking everything that you are taking - all the medication and supplements

2. don't eat or drink anything with sugar or carbohydrates in it for a few days (look at the labels, carbs should be 0 or very close to 0).. a good way to achieve this is just to eat breakfast 2-3 times a day, eggs, sausage, bacon, chicken, etc. (minus the bread)

you may experience relief at this point already.. if not then:

3. go on a vacation for a few days, all-inclusive with meals (so you don't eat whatever you're eating at home)

4. start on Omega 3 and Zinc

[moonrae]

Thanks guys. I appreciate the input. It's been over a month since I last saw a gynecologist. I'm thinking of going back in for another appointment when I feel less drained. And yes, I should probably try limiting my sugar intake, although I usually don't eat much anyway. 

[scaredbuthopeful2015]

Hi...a few questions.  How old are you?...could some of these symptoms be menapausal?   Also, have you been tested for diabeties.  I suggest you get a full physical if you have not already as some of these symptoms seem to mimic other health issues. 

[ST]

I shut everything down the day I found out.  I fasted for the first week.  Sugar and chocolate were the biggest things I avoided.  I drank water.  I then slowly introduced supplements.  I don't have all the symptoms I keep reading.  I do have the itching, but it's when I eat something I shouldn't.  

[csturl]

i am cleaning my system using Activated Charcoal, true value of activated charcoal is in its ability to remove toxins from your body including herpes., 8gr per day recommended by doctors with average food poisoning, another  recommendation will be 1gr per 1kg body weight ,i use 2  tea spoon tables 2 -3 times a day  and drink a lot  water, do not use any over medications as it will washed out (or at least 2 hrs before taking med),  and 1hr  before taking any food, maybe do it for 2-3 days and see how you go, don't eat a lot of meat, sure NO sugar as it will give reaction, no bananas, no water melon  Sorry due to lack of good English hard to explain please do research

you can by fancy tablets from any pharmacy or go any fish store and get a jar for aquarium filter it what we do :-)

* calcium citrate , magnesium citrate,  must be citrate or organism wouldn't absorb it, just check for you r dose amount and  D-3 5000 a day 

*b-12 absorb by body ONLY through  injections - i can send web you can order on-line or ask doctor

*DHEA micronized 25gr 2 times a day, artificial DHEA ( its what you see most sold OTC) not really go to you body but i take it

*Myo-Inositol Powder ,-- support healthy mood, emotional wellness, and behavior, member of the b-vitamin family that contributes to muscular and nerve function, health ovarian function - get from Amazon, be sure no soy, milk egg etc in product  ( Protocol for Life Balance)

*L-Lysine powder -- Amazon ( NuSci) again no soy etc

we are using  a lot of supplements and vitamins and its  maybe why hsv didn't show or show to small it didn't took attention

legs- massage something with bee poison, pepper or just any sport ointments

hope you feel better!

Let us know

 

 

[VVK]

Bee venom.. not a good way to find out that you're allergic.

 

[moonrae]

Thanks for the input, guys. It really helps to get support from people in the know. I realize the one thing I haven't tried is Lysine, so I'm going to give that a chance. I'm also going to start taking vitamin D pills, as I've always had vitamin D deficiency. I've heard vitamin D can help with the nerves.

Scaredbuthopeful, your suggestion is giving me hope, even though I try not to get my hopes up, lol. I'm not menopausal (approaching 30), but I have started to wonder if my problems are hormonal/diabetic, given some other issues I've had this year. I'm so tired of doctors right now, but I'm going to go back in and talk to an endocrinologist. Like I said, I don't want to get my hopes up too much, but it's worth trying. 

[Scooby2112]

I have GHSV1.  Tested positive from an exposure three months ago.  I have had constant burning and pin prick feelings in my thighs and butt.  My penis seems to be the most spared with this virus.  

I have used dragon menthol cream and capsaicin.  They both burn when applied but it gives me a day or two of mostly relief. 

Not sure when this initial outbreak will End.  

[WannaCry]

@moonrae If you have not had anything like lesions or rashes then it’s unlikely you have HSV1 Genitally, as primaries for it tend to be very extensive.

However it sounds VERY much like you may be suffering from pelvic floor dysfunction. It can cause terrible burning nerve pain in the genitals, referred pain into the legs, redness , raw feelings, UTI /bladder pain symptoms and other horribly uncomfortable issues. I went through so many of the things you are describing. I did not have a genital infection, my SI joint had become “stuck” in a tilted position and my pelvic floor had seized in response to it! It was horrible non stop pain for months until I was able to find a pelvic floor physical therapist. Please look into this, as it gave me so much pain relief once the PT was able to help me.

[Scooby2112]

 

22 hours ago, WannaCry said:

@moonrae If you have not had anything like lesions or rashes then it’s unlikely you have HSV1 Genitally, as primaries for it tend to be very extensive.

However it sounds VERY much like you may be suffering from pelvic floor dysfunction. It can cause terrible burning nerve pain in the genitals, referred pain into the legs, redness , raw feelings, UTI /bladder pain symptoms and other horribly uncomfortable issues. I went through so many of the things you are describing. I did not have a genital infection, my SI joint had become “stuck” in a tilted position and my pelvic floor had seized in response to it! It was horrible non stop pain for months until I was able to find a pelvic floor physical therapist. Please look into this, as it gave me so much pain relief once the PT was able to help me.

@wannacry 

 

I have these thigh burning tingling along with penis irritation.  At best My penis has what could be described as a loss of skin.  The glans (below the head) has wet/shiny pink spots.  Not super noticeable, but these have been continuing for 3 months.  It's about hell if you ask me.  Blood test pos for gHSV1.  Most people dismiss these"" minor" symptoms.  I did just get finished with a steroid eye drop and was prescribed some steroid cream for the "lesions" on penis.  So this may be what is causing a latent infection to rise up for me. N

[WannaCry]

@Scooby2112 Steroids/steroid creams tend to increase HSV outbreak so yes that could be what is making your OB last so long. I’m not sure what the eye drops were for but if the steroid cream for the penile issue hasn’t been helping I would considering discontinuing use. 

[Scooby2112]

Just now, WannaCry said:

@Scooby2112 Steroids/steroid creams tend to increase HSV outbreak so yes that could be what is making your OB last so long. I’m not sure what the eye drops were for but if the steroid cream for the penile issue hasn’t been helping I would considering discontinuing use. 

Yes after my blood test I stopped the steroid cream.  I have also stopped the eye drops.  They were for an eye surgery to keep inflammation down.  I didn't know I had herpes, but it says in the leaflet that comes with it do not use of you have herpes.  Ask your dr first.  So clearly it can have an impact.  Plus I was using them for about 6 weeks when this all started.  Now I have not touched a steroid in 3 weeks. Still have symptoms.  

 

I know they say hsv1 doesn't need antivirals but I think I need to get some and try something.  But Drs say I don't need them and that the irritation is nothing.  Even with the blood test.  

 

Very frustrating.  

[WannaCry]

You should probably push the point that you have been on steroids and have had an extended outbreak to your Dr while asking for suppressive antiviral therapy. While it is true that gHSV1 doesn’t have the shedding/transmission issues that 2 has, suppressive therapy is often needed for the first year to control OBs while the body gets used to the virus for some people who have more problematic symptoms

[Scooby2112]

Easy to push but Drs don't believe it's a big deal or that it is symptoms of hsv1.  They assume I am an asymptomatic carrier and not sure if it's ora or genital.  Just to many coincidences to have all this genital area things going on and get a blood test result confirming Hsv1.  

[Tense]

On 10/5/2015 at 1:03 PM, moonrae said:

I'm having a really tough time dealing with what seems like a never ending genital hsv-1 outbreak. Everyday for the past four months since I was exposed to the virus, I've had at least one of these symptoms- vaginal itching and burning, discharge, thigh/leg/ankle/foot burning and itching, swollen left leg, blood marks under my skin, "hot flashes" at night, intense headaches, nausea, eye pain, intense tingling in my face, and so much frustration over the fact that it never ever seems to stop. The entire lower half of my body constantly feels "off," and then is attacked by stinging pains, or some combination of itching and burning. I can't even sleep through the night.

I've tried Valtrex, garlic pills, St. John's Wort, antihistamines, strong nerve pain meds, vitamins, probiotics, green tea, ice pack between the legs- NOTHING helps. I've given up caffeine too- that hasn't helped either. I feel like my body is just a prison and there's no way out. Sometimes I just want to vent, sometimes give up, sometimes keep searching for a diagnosis/treatment. I've just about lost it. :'(

The closest I've come to a genital lesion has been a pimple on my thigh, which my gyno refused to culture at the time. Another one looked like it was about to come up a month later, but it went away overnight. So I can't even be 100% sure that I have the virus genitally. I've already had an oral lesion so my positive IGG test for HSV 1 (negative for HSV 2 multiple times) wasn't helpful. I've been tested for every other kind of STD and vaginal problem under the sun, but they've all been negative. I've never had any of these symptoms before. 

I'm in pain almost every hour of every day. I can't believe this has happened to me. I thought genital HSV-1 was supposed to be the mild version. I've only had an oral lesion once, and though it felt awful for two weeks, it went away and never caused any additional problems for me.

Any suggestions or support would be greatly appreciated.

I have to say I'm sorry for what you are dealing with. Mine is exactly the same. I have  now sciatic pain and pinching in the buttocks thay feels like I've been working out without working out. I am even on Valtrex and it doesn't help. I don't know what to do either. 

 

[Tense]

On 10/6/2015 at 3:18 AM, moonrae said:

Thanks guys. I appreciate the input. It's been over a month since I last saw a gynecologist. I'm thinking of going back in for another appointment when I feel less drained. And yes, I should probably try limiting my sugar intake, although I usually don't eat much anyway. 

I was told by my Dr I also have folliculitis. I have only been on antibiotics one day and the pain in the area and itch are gone. It is possible you have a bacterial infection. Go back to run I

 

[rgreen]

15 hours ago, Tense said:

I was told by my Dr I also have folliculitis. I have only been on antibiotics one day and the pain in the area and itch are gone. It is possible you have a bacterial infection. Go back to run I

 

Which antibiotics are you on?

[Tense]

7 hours ago, rgreen said:

Which antibiotics are you on?

Doxycycline