Experiencing nerve pain in my legs, occasionally itch, swollen vagina

[Onlyhuman]

Hi, I’m 29 . Not officially diagnosed with herpes from the three gynecologist that I have seen but blood work done by a lab came out positive for hsv1. Since October 2020 I have been experiencing pelvic pain, Every time I had appointment which was more than 6 times in two months for a number of things (gastrointestinal, rheumatologist,gynecologist, ENT doctor, neurologist)   but this being my main issue one they explain to me it was not herpes. I was told I had bv one time, then gardNella, and bv just May again. It wasn’t until December that I started to have occasionally itching and crazy nerve pain in my thighs and legs. Which I went back to the doctors ad explain to them , still no diagnosed . I showed the results of my lab results at outside clinic because any doc I have seen refuse to test me for herpes because no physical symptoms. The itching has been so annoying, because it’s not just one area it’s my whole pubic area and labia. Since applying manuka honey it has gotten a littler better. Now these nerve pains. . It’s like you don’t hear about the nerve pains that come along with herpes. And I keep trying to find things on nerve pain but little research. I ask a friend about it who was open to me about having hsv2 but he didn’t have them. I lay down I have it, I’m a t work I have it as I’m writing this I’m feeling this. I even have difficulty keeping my balance . My legs are the worse part about having this. I use to have weakness in my arms. My hips hurt a lot . I have to move them around in circular motion. I have headaches in the mornings and my legs feel numb sometimes. Oh i have constipation most times and my odor has change in every area of my body. I literally been sick since October and haven’t found another cause from the different pain.

sorry long drenching post but those are my experiences. Docs just keep telling me everyone had hsv1 but if that was the case why do I have genital pain. So I kindly explained to them after do my research that I may have never had hsv1 which Is why I got it genital via oral sex. So not only do I have it orally I have it genital. I get the tingle around my lips but no outbreak and vagina no clusters/blisters but the one or two pimples Down there /itching. I have not disclosed this to my bf who I have been with 10 years . This is the person I want to spend forever with but prior to this we had a ruff couple of months with me feeling like he didn’t love me enough to marry me, like wasn’t good enough. I step out like a stupid person, mind you I have never been with anyone else besides him. He was my first . Then I met this new person give me oral and boom. When I say I have been depressed for months , knowing that I may  have already given this to my boyfriend , knowing that he knew about this person , forgave me for cheating ,we’ve been back together but my body has not been the same . I’m tired of living a lie. What if all of what I’m feeling is related to hsv1. I don’t what to do? How do I explain this to him? He’s going to leave me for sure ? Right when our lives were going to change for the better on a new slate, this happens ? Im fully aware of my wrongdoing but God knows my heart has always been with him I just made the wrong choices . 

[beihaigirl2004]

I get nerve tingling at the base of the spine and frequently have tingling around my labia and anal area. My ass cheeks get nerves firing and itch all the time. I occasionally get leg pain really bad where it hurts to walk but that has subsided quite a bit since my initial outbreak and taking anti-virals. I also get the constipation. Seems my BMs have never been the same. You're symptoms sound far worse. Have they tested for neurological issues - like MS? I hope you find some answers!

[Flowerteacher55]

Hi, @Onlyhuman!

First, I am so so so sorry for the pain, suffering, and stress you have been experiencing. You do not deserve this at all. Please know you are not alone. You are still worthy of love and a happy, healthy relationship. I have genital HSV-1 also, and it is totally possible to get HSV-1 from oral sex (how I got it). You can also get herpes in two places, especially if you had oral sex and genital sex during the time you are exposed.

I have some questions:

When was the first outbreak that made you think you had herpes? Did you have any symptoms with this first outbreak?

When did you have the blood work done, and what type of test was it (IgG or IgM?)

When did you have relations with the other person? Before or after the first outbreak? 

It sounds like you may have extreme neurological sensitivity to the virus. Or, you could have multiple medical complications overlapping. The tingling and buttocks and leg pain match with HSV. However, the odor change and the constipation, as well as the horrible severity of the nerve pains make me think it could be something else in addition to herpes. 

Post-Herpetic Neuralgia or Pudendal Nerve Neuralgia sounds similar to what you are talking about. Actually, studies have shown genital herpes causing lasting nerve damage. According to The Centers for Vulvovaginal Disorders:

"There are two types of HSV.  In the past, HSV-1 was associated with cold sores of the mouth, lips, or eyes and HSV-2 was associated with genital lesions; however HSV-1 is becoming a more common cause of genital herpes, especially in young women.  The first outbreak may be associated with flu-like symptoms and may last between 2 to 4 weeks.  Recurrences of genital herpes are often signaled by burning, itching, or tingling before sores appear.  Recurrent outbreaks are typically less painful and heal more quickly. 

Post-herpetic neuralgia is painful condition that affects up to 10% of patients who have had herpes zoster (also known as Shingles), which can occur on the vulva.  Post-herpetic neuralgia describes continued pain after the rash goes away.  It is causes by damage to the nerves from the herpes virus.  Post-herpetic neuralgia may be an under-recognized cause of chronic vulvar pain, especially in older women.

here's the link to the site! http://vulvodynia.com/conditions/herpes-and-post-herpetic-neuralgia

It will be okay. God loves you. Your partner already forgave you for the relations you had. They were done out of sadness and pain, not out of love. You love your partner. He will surely understand, and if anything this will make his nurturing and love for you stronger. Being vulnerable is so hard, especially when we are afraid someone will leave us or be disappointed. However, you didn't ask for this at all. Your honesty is important. Love means unconditional acceptance and kindness to another, and in this time of stress and need, you need that shoulder to cry on. And I am sure he wants to be there for you. 

I am so sorry for your pain! I am praying for you. If you need any support, feel free to direct message me. You are not alone! 

Sending love and prayers your way! 🌻

[Flowerteacher55]

Hi!! 🙂

An update: I just learned that Post-herpetic neuralgia is linked specifically to shingles/herpes zoster (different than HSV), which can actually manifest/appear in the genital area later in life. If you've ever had shingles/herpes zoster (different than HSV) this could be a factor in the tingling! 

Sorry if the above previous post was confusing or misleading. I am unsure if HSV can cause the same herpetic neuralgia as shingles does, so I would verify with a doctor!

Hope you are well! 🙂❤️ 

[Onlyhuman]

Thank you for responding and being so supportive. Ever since all of this happened, I been feeling so alone because no one is believing me. I went from someone completely sane to someone whose looked at as losing her mind. Anyway, I really do have bad nerve damage in my legs. Im so scared of what It may be. Im trying to be so positive about life because I’ve always have been and still want to be. I love my life , I love God, I love my family and I love my boyfriend . I refuse to let this control me but my body just needs a break from 24/7 physic pain. Whatever is happening to me, it’s affecting everything in my body. I don’t wish this on anyone. I had a doc tell me I may have fibromyalgia. I looked up some of my symptoms, and I’ve gotten MS, Epstein Barr Virus (moNo), which could lead to lymphoma.

[Flowerteacher55]

Hi! 

I am so sorry for your suffering. As you mentioned God, here is a reminder: Please know that even in the darkest and most turbulent times, when life feels like a thunderstorm, there is a shelter from the rain. God's unconditional love for us carries us when we are weak and shelters us from the pain around us, all while providing us a way to see clearly through the storm. God makes all beings beautiful, including you. You are not unstable or losing your mind. You are a human being under extreme physical and emotional stress, and not knowing the cause of the pain is even more stressful. This is not your fault! 

The tingling sounds like nerve damage, which can be very extreme for some people with HSV. If you have ever had chicken pox, varicella zoster, or shingles, the likelihood of having postherpetic neuralgia increases and/or lumbosacral plexopathy. Your doctor can refer you to a neurologist, too, if needed. 

It'll be okay. 💛 We are all here for you!! 

Blessings,

Grace 

[Onlyhuman]

On 7/10/2021 at 3:18 AM, Flowerteacher55 said:

Hi! 

I am so sorry for your suffering. As you mentioned God, here is a reminder: Please know that even in the darkest and most turbulent times, when life feels like a thunderstorm, there is a shelter from the rain. God's unconditional love for us carries us when we are weak and shelters us from the pain around us, all while providing us a way to see clearly through the storm. God makes all beings beautiful, including you. You are not unstable or losing your mind. You are a human being under extreme physical and emotional stress, and not knowing the cause of the pain is even more stressful. This is not your fault! 

The tingling sounds like nerve damage, which can be very extreme for some people with HSV. If you have ever had chicken pox, varicella zoster, or shingles, the likelihood of having postherpetic neuralgia increases and/or lumbosacral plexopathy. Your doctor can refer you to a neurologist, too, if needed. 

It'll be okay. 💛 We are all here for you!! 

Blessings,

Grace 

So my doc wanted to test me for EBV (mono) . Came back positive but it’s a past infection . So not currently active . Even though it feels like it . Something else must be causing my symptoms that are making them so severe and persistent. My mom thinks I don’t have hsv1 genital . Because I never got that first outbreak after I had oral sex with this guy. We had been seeing each other from July- December. Energy just t seem fine. It wasn’t till the end of December, my body went into a shock. My legs have been suffering of pain since  December and we are now in July. My mom also thinks i may have a tampon stuck in my vagina because of the constant pelvic pain, inner thigh pain, the odor . I  had cat scan done on my pelvis twice , they would have seen something  . My mom also mentioned that God wouldn’t do this to me, which made me break down really bad the other day. Just be positive And find out what else may be causing your symptoms. I’m currently taking pregabalin something like lyrica to treat nerve pain ex. (fibromyalgia) . It’s been helping alot. Still having broke the news to my bf. We are long distance  have been for 3 years , but been together for 10 years , college sweetheart. He mentioned to me after breaking things off with the other guy, that he was willing to forgive me while also telling me well if you’re free from stds while specifically saying and “ you don’t have the H stds “ then we’re good. I had the blood work test and was going to tel him that night when he came up to see me. And couldn’t even fix my lips to mention it to him . It broke me and that was in January. Sometimes I wish I never even took the test . It’s been nothing but a mental health issue for me since then. No doctor had confirm my diagnosis or even wanted to test me for it  because I wasn’t showing symptoms despite me having having mild symptoms. This is why people pass along this virus because half of them don’t even know they have it because it’s a million other things that it is before this one. I was told Bv two times ,And herpes is  nothing they test you for. So if they are no symptoms they are not taking it serious. Why is finding out you have it a big identity, I can’t believe this is my life type of crisis. Life is a trip. Anyway going to see him this weekend and my nerves is through the roof . Planning on moving in with him and everything and then this happens. I’m just afraid he’s not going to want to be with me anymore. I’m so scared 

[Flowerteacher55]

Hi ❤️

I am so sorry for the pain and struggles you've been handling. You don't deserve this at all. 

I am happy that the nerve pain medication has helped you.

Did you talk to your doctor about the post herpetic neuralgia? Did they examine you for any uterine or ovarian cysts or anything that could cause inflammation and pressure on the pelvic nerves?

Please know this isn't your fault. You are a child of God, and he loves you unconditionally, and wants you to love yourself unconditionally, too. 

I am so sorry that this is putting a strain on your relationship. When you see him, I'm sure he will be supportive. When you tell him everything, you can even give a disclaimer: "I love you more than anything, and I know we can get through anything together. It really pains me to have to talk about this but I care about our relationship." 

He may be upset at first, but herpes is so so common. He may need time to think, but honestly there are so many married couples (especially on this site) who have explained they still have a wonderful sex life, children, and an amazing relationship with their husband or boyfriend. 

You can be vulnerable with him, explain how you felt very neglected, then sought emotional connection with someone, who then gave you this virus. This reminds you of that, and it really pains you so much. That is so so stressful, I am sorry that this all happened. He should be understand and willing to listen. Stay strong. You can even write it down first if it helps. It will be okay ❤️

Let me know how it goes!! I am sending you happiness and support.

Blessings,

Grace