Very Complicated and Confused

[needgodshelp]

Hello Terri,

I would like to start by saying I am sorry to bother you I am just getting nowhere with medical providers and I have been driving myself crazy for months. I’m hoping you can shine some light on my current symptoms. I should start by saying I have had Oral HSV-1 since I was a little kid. Here is my timeline.

June 2016 – I had an oral cold sore for the first time in years. Due to anxiety, A couple of days latter I started experiencing tingling and burning in my legs and neuropathy all over my body and electic shocking in my genital/leg area. I would keep looking for sores but nothing was there. This was mistly in y right leg and happened for a couple of months persistently. I was a virgin at the time so I thought I gave myself HSV1 to my genital area. I took and IGG test, obviously positive for HSV 1 negative for HSV 2. No sores so I could not get them swabbed. Symptoms went away after a couple of months.

December 2017 – I had unprotected sex…Immediately after I had a swollen vagina and a lot of burning…this burning and tingling in my legs and but lasted a month. I got checked by a clinic and they said nothing was there and that I;d have an outbreak if it were my initial exposure to herpes. At 32 days I got two little tiny red ulcers towards the end of my vaginal opening and buttocks. I also had anal discharge. The doctor said it was yeast. He gave me diflucan and it cleared up almost instantly. The next couple of days the tingling and burning and back pain persisted. it felt like my my thighs were on fire, mostly in my right leg and it burned to pee a little. It also felt like bubbles and things moving in my vagina. It felt like I had paper cuts at the top outer part of my labia but I couldn’t see anything, My stomach would also start ti burn and I would get horrible back and abdominal pain. These symptoms lasted persistently until march. After months of being depressed I took an antibdoies test in March at the 12 week mark. It came back

[needgodshelp]

CONTINUED: Negative for HSV2 (.9 IGG) and positive for HSV 1 (8.2 IGG). I was relieved and the following day after my doctor visit, my right labia got dry and swollen and so did my anus and the two little ulcers appeared again, but this time the scabbed a couple of hours after. I knew for sure I had GHSV1 but I didnn’t get it cultured. I sent a picture to my gyno and she said the two sores didn’t look herpetic but she didn’t know what they were. My gyno told me I was extremely low in Vitamin D. All of these burning and tingling and shocking sensation contninue to happen in some range of severity every day. I have not had more ulcers, it just feels like they are coming and never do. I get a lot of crusty clumpy discharge.

In late march (new partner), I had unprotected oral and his penis touched my vagina maybe once or twice, trying to have sex but I said no. Immediately after my vagina was irritated and burning and red!!!! The next couple of days I kept looking at my inner labia to see if there was anything there and I noticed a lot of yellow smegma and a lot of irritated papules little red bumbs with white heads…a lot of them almost like fordyce spots or sebaeous glands. They were only on the right side of my inner labia. This happens everytime I am on my period along with what feels to be a bartholin cyst on the right side and vaginal prolapse(it literally feels like a tampon is coming out of vagina) but there is not one inserted. I asked the guy to get tested at the 11 week mark and his IGG test was negative for both HSV 1 and 2 at 5 weeks, 7 weeks, and 11 weeks).

In early May, I had protected sex with the partner from december (we broke up after in january and got back together in may, the guy from march was a small no-sex hookup because I was hurting. I promise I dont have a lot of sexual partners). however after protected sex I had pain and swelling of vagina and burning again immediately after and the following night my thighs were burning and tingling

[needgodshelp]

again, but this time mostly on left side. The next morning I then noticed a tiny red fain rash not really bumps, more so redness on my inner left thigh. This rash was gone the next day. However for a month I have experienced burning and tingling and back pain and numbness and aches in left leg and mimicing symotoms on right sie but less severe. I see faint brusies on my legs but no more rash ever, My groin itches but no bumps. I heard this happens when the virus spreads. One day I woke up out of mysleep from my entire left side (from my face to my feet being numb and tingling and burning. I get pain in my arms and legs and little bumps all over my body and itchiness. My back pain is incredibly severe and it appears that my symptoms in my thigh and groin match the severity of my back SO if my back hurts a little bit then my thighs burn and tingle a little, of my back hurts to the point of tears then that is how severe the burning in my thighs are. I am so confused with what to do. I am having this guy get tested, he said he was tested for everything in december and february and negative for everything including herpes. I am waiting on his recent results. I went to get tested again even though it has only been six weeks since this protected encounter, however the clinician did a PCR DNA blood test and therefore it is useless so I have to go an get tested again. This is A LOT but I am in constant pain every day since december. I hope you can help or point me in the right direction.

[Terri Warren]

I don’t believe that this sounds like herpes but the only way to know for sure is testing. Have you had an MRI of your back to determine if this is something related to your spine? If not, you should.
I would say that 90% -95% of the time when people describe tingling and similar sensations, it has nothing to do with herpes

This is your final post on this subscription. If you have more questions, feel free to renew

Terri

• This reply was modified 5 years, 3 months ago by Terri Warren.

[needgodshelp]

Update: I have started to get bumps in my groin area that sting. I also have bad diarrhea, abdominal pain and left leg pain and less severe right leg pain. My inner thighs still feel warm and burnt. I have muscle spasms and muscle aches in my legs and in my arms (most severe on left side). The bumps in my groin look like folliculitis but I am not sure. I get burning icy hot sensations in my groins, thighs, and butt. I haven’t developed a lesion on my vagina yet from what I can see. I tested IGG negative at 7, 9, and 11 weeks after the protected encounter. My legs feel achy like I have the flu and sometimes my feet are really cold. I have an itchy rash behind my knees and I also have itchy bumps on the back of my arms. I itch everywhere sometimes, like armpits, scalp, underneath boobs, palms of my hands, behind my ears…etc. I am not sure if this is herpes or fungal. I still have sciatica in left leg and tailbone pain on right side. My left leg is restless… and my right leg is stiff. Any thoughts? Should I retest at 16 weeks?

[Terri Warren]

I don’t think it is necessary to test again at 16 weeks, no. And all over itching is not a symptom of herpes. You should see your clinician about the bumps in the groin if you are still worried and ask for an opinion about what they are.

Terri

[needgodshelp]

Hi Terri I am following up with my additional question. I have still yet to receive a diagnosis. I got a swab test done on a sore in my anus and it was negative. I have so much nerve pain, Nausea, and twitching, and burning bumps in my pubic area and one on my thigh. No one will swab these because they said there is nothing to swab. All igg tests have been negative. I went to a clinic and they diagnosed it as herpes gladutorim by sight (no blood or swab done). They said it is different from type 1 or 2 and it is not a herpes that is typed. I am so lost and confused. I have yet to have a positive blood or swab test but yet have so many bumps, nerve pain, twitching , left leg pain and left arm pain. My tailbone hurts and I feel stinging inside and my back is destroyed. Please help. Any insight?

[Terri Warren]

Herpes gladitorium is always caused by herpes simplex virus, usually HSV 1. I cannot imagine what they were talking about. If your IgG tests are negative for HSV 2, (we know you have HSV 1, correct?) there is a 92% chance that this is accurate and you are not infected. I’m sorry, I don’t know why you are having these symptoms but I doubt that you have HSV 2. I think you should be following up with a primary care provider to see what else might be going on here.

Terri

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