Bloomer

@RingofFire so sorry for your experience with doctors who are refusing to see any correlation between your nerve pain and HSV. This is a well known fact and every doctor who denies this is not very well informed. Please avoid alcohol since it can be a trigger for HSV and usually makes nerve pain worse. If you were you I would try to find neurologist or infectious disease doctor who is up to date with informations about HSV infections. I rarely get outbreaks, my symptoms were atypical ( at least medical community says so) and thanks to this I was misdiagnosed for years and my HSV infection was left untreated. In 2015 I developed transverse myelitis which was caused by HSV which was proven by spinal tap. I am happy to be alive. Please don't stop looking for answers and be your own advocate when it comes to your health. Most doctors know nothing about HSV, even so called HSV specialist.

@Bernice how were you diagnosed? By blood or by swab?

I understand completely. Dealing with this infection can sometimes be life consuming and in the beginning it can seem that your life is falling apart. In most cases with time things get better. Your body learns how to handle infection and outbreaks become less frequent. You are very young and there are lot of new drugs and treatments on the horizon. Are you currently taking antivirals? How frequent are your outbreaks? I have this infection more than a decade and had lot of difficulties but despite that I found a love of my life and married him. He loves me for who I am and doesn't care about condition I have. I can assure you that you can live perfectly normal life and you will.

@Herpessuckzfor how long have you been diagnosed? For me personally fear of transmitting this horrible infection to my husband was the worst part of it and trust me I have been through hell with this virus. The good news are that if you avoid sex during oubreak, use condoms and antivirals the chances of transmitting is extremly low. There are couples where is one hsv positive and who are together for 20 years and have sex regulary and there is no transmission. Some of them don't even use condoms or antivirals.

So sorry for what happened to you. 🙁 Getting diagnosis of genital herpes can sometimes be life consuming but with time there comes acceptance. You can live perfectly normal life with herpes and you will. Take care of yourself, eat healthy and try not to stress to much if you can. As I said before gHSV1 tends to shed much less and has less outbreaks. Some people get only one outbreak during their lifetime. Take care and all the best! 🙂

@bubbles9991 hello! I know you are worried sick and have thousands questions but I can assure you that everything is going to be fine. 🙂 For how long have you been infected and how were you diagnosed? The good thing is that gHSV 1 tends to shed much less and recurrences are usually rare. Ask your girlfriend does she have HSV 1 orally. If she already has orally HSV 1 it is almost impossible for you to infect her genitaly. It is important for two of you to have open conversation about STD's, this is part of healthy relationship.

@AFK47 sometimes after outbreak people get post herpetic neuralgia which is usually temporary and resolves after several weeks or months. It is really important to discuss this with your doctor and be sure to mention every possible symptom you have. Herpes isn't always in form of blisters and can manifest as paper cut wounds so it would be good to swab them next time they appear. It is really good that you are taking immune boosting supplements and taking care of your health. Please continue to insist to get some answers from doctors because there can be some underlying isuess that have impact on your hsv infection. Take care and good luck!

@Tiredmommaj you can buy St John wort oil but it has to be really good quality. I was using it vaginaly since I have neuropathy caused by hsv infection and have vaginal burning almost always and it helped me a lot. It calms nerve irritation and reduces inflammation.

@Andrewdid you swab your oral outbreaks? For how long have you been diagnosed? Don't be afraid of kissing somone or huging somone. If you don't have active outbreak orally it would be extremly rare event to infect someone. HSV 2 doesn't prefer ( so to speak) oral area and sheds much more less then HSV 1 in oral area.

Andrew what type of HSV infection do you have? HSV 1 or HSV 2? Is it oral infection or genital? Or both? When were you diagnosed and how? I agree that getting diagnosed with HSV infection especially with genital infection can sometimes be life altering and life consuming. Most people have really hard time accepting it but I will tell you that with time it gets better for sure. I was diagnosed long time ago and had serious health issues in meantime but here I am pregnant living with the man of my dreams.

@Tiredmommaj can you try anticandida diet maybe? But if itch is appearing where you usually have OB's than it's reasonable to assume that you are dealing with neurological itch. Did you try massaging St John worth oil on your skin where you have itching? Or lemon balm cream?

@Tiredmommajfor how long have you been taking antivirals? The thing is that antivirals are helpful for some, but if I remember correctly itchiness can be side effect of antivirals. I am not sure anymore, please check list of side effects.

@Ladyf123 thank you very much for your reply. I asked about breastfeeding because breastfeeding can also cause increased OB's. At least this is what I've read long time ago. I am not sure is this even correct information. I am currently in second trimester and things have been pretty rough. Do you take any supplements for boosting your immune symptoms and reducing inflammation like vit C, curcumin, vit D, glutathione? I hope you will have success with birth control pills. 🙂

I am so sorry you are going through this. When you have genital HSV infection OB's can show up anywhere in boxer short area so it is not unusual for OB's to appear in thigh area or buttocksfor example. My last outbreak was on both thighs and this wasn't my primary OB. Doctors say that recurrent OB's are uniliteral and only primary is bilateral but that wasn't true in my case. Have you been to immunologist? Maybe some underlying health issue is somehow compromising you immune system. Did you check your thyroid levels? From my experience (and I've been through hell thanks to HSV) I can tell you that for some people this can be very nasty virus. I've been in contact with lot of people who are HSV positive and I am hearing more and more stories about unusual course of this infection. The most important thing is to see doctor and to checked for possible immune deficiens. Do you have opportunity to change antivirals maybe? Can you get vitamin C infusions for example to boost your immune system? Please, don't hesitate to contact me. I am dealing with this condition for a really long time and I perfectly understand what you are going through.

@Dreamz see neurologist as soon as you can. Itching can be neurological symptom especially if it started after HSV infection. I have all kind of neurological symptoms thanks to HSV infection and like you I wasn't taken seriously by my family doctor. I ended in hospital with transverse myelitis at the end. I am not telling that same will happen to you but you need to be your own advocate and fight for answers. Ask for neurologist refferal. Your itching maybe isn't even connected to HSV, maybe something else is causing it and you need to find the cause of it. Have you tried antivirals maybe? For some people they can be very effective in removing all HSV symptoms. Best of luck!

@Ladyf123 I hope you will find relief soon. Are you still breastfeeding if you don't mind me asking? I have really hard time in dealing with HSV infection especially now when I am pregnant. I have constant prodromes and antivirals ( in my case acyclovir) are not helping and are useless. Hormones play huge role in HSV infection and I remember reading how lot of woman during and after pregnancy have frequent OB's. By time, you will probably have reduction in OB's and feel better.

@Flowerteacher55 thank you from the bottom of my heart for putting so much effort and trying to help all of us. If you ever receive any answers to your questions sent, please give us a feedback. I am trying to be positive but unfortunately I don't think that even the specialist and people researching this virus have clear answers to some of your questions. I am particularly interested in questions why some people are testing negative despite positive PCR swabs and why some people develop nerve pain (neuralgia) with this infection. Thank you again for your work and effort! All the best!

@ellemmell (previously effeI so sorry for your situation. I am in similar situation with atypical course of HSV infection. At least everyone say it is atypical but reading some of the topics here made me realize that more and more people have issues in treating this infection. Antivirals are not helping me either so for the last two years I started experimenting with natural antivirals like native propolis and St. John wort. (One warning, you can't take St. John wort if you taking nerve meds or antidepressants). This combination helped me in decreasing nerve pain which I have thanks to HSV infection and reduced severity of prodrome symptoms which I'm having constantly. For me is usually prodrome without outbreak. Stay strong! Searching for relief and personal understanding of this infection can be sometimes life consuming. I hope you will find something that is helpful in a long run. All the best!

@Flowerteacher55 yes, I have HSV 1 and 2. HSV 1 never caused me trouble. My transverse myelitis was caused by HSV 2. I really don't know why it caused so much trouble. During my stay in hospital, they did almost every test as they thought I was immunocompromised but everything came back clear. I was tested also for all kind of autoimmune conditions, vitamine deficiens etc. Everything was ok. Infectious disease doctor didn't have explanation, he just said is sometimes happens and that he saw this already in his career. During my research and reading all kind of scientific journals I found that there are different strains of HSV 1 and HSV 2 and that some of them are more neuroinvasive than others. Maybe that's explanation why I have such a difficult time with infection. What bothers me the most is the fact that most doctors are clueless when it comes to HSV infections, they all say it is just skin condition. It is skin and nerve condition. The thing is that nobody actuallly knows nothing about these viruses and we have really, really limited options when it comes to treating this infection. I've met several people who for years had really classical presentation of infection and then after many years started having neurological complications etc. The modern medicine doesn't have answer for this. They can only offer you antivirals which are inneffective for some people and more and more individuals are developing resistancy to antivirals. All I wanted to say is that we need better doctors and better treatments. Oh, end of course testing which If you aak me should become regular and available for everyone.

And more thing I wish to add. My intention is not to scare people. Most of the people have mild symptoms and my experience is not the norm when it comes to HSV infections. But complications do happen and that's why we need to talk about all aspects of HSV. I too wasn't really informed with HSV, didn't know any facts about it to be precise since this infection is obviously tabu theme in Europe.

Flowerteacher55 thank you very much for your kindly reply and thank you for your good wishes. As you said, being misdiagnosed for so many years probably had a huge impact on getting transverse myelitis. If I treated my condition from beginning and applied self care and lifestyle changes I probably wouldn't end up with myelitis. That experience changed my life and I truly hope I will never experince that again. My main fear is getting myelitis during pregnancy and after birth and that it would be fatal for me. I was suprised back than in 2015. when infectious disease doctor told me that around 40 percent of all cases of transverse myelitis is caused by herpes simplex viruses. I was shocked and scared to death. The funny thing is that I have oral HSV 1 since I was a child and never had any issues. I live in Europe and medical community here is so easy going when it comes to HSV infections. The last doctor I visited and who specializes genital infections never heard about viral shedding. She told me I can have sex with my husband if I don't have outbreak. 🤦‍♀️ I am terrified of passing this to my husband. He is love of my life and I disclosed at the beginning of our relationship of course. He loves me no matter what and is my biggest support. I've read somewhere that person you infect will have the same course of infection as you do. After reading that I become paralized in fear and that of course puts a certain havoc on our intimate relationship. Thank you again for your repy, it is comforting to receive support. 🙂

Hello everyone! I am new here but not new when it comes to HSV infection. Just wanted to introduce myself and share my story hoping I will get feedback from someone who has similar experince. I have genital infection for a long time and according to all medical criteria I am healthy and immunocompetent individual but again had really hard time dealing with this horrible infection. For several years I was misdiagnosed and treated for constant UTI's although my urinocultures always came clear. Doctors never even consider to test me for HSV infection. And then in 2015 I was diagnosed with transverse myelitis caused by HSV 2 infection which was life altering experince. I never fully recovered and since then suffer from daily nerve pain in my pelvc floor area. During the span of 20 years I only had two classical outbreaks, with outbreaks appearing on both of my inner thighs. The strange thing is that I am not testing positive through blood tests but have positive PCR swabs and positive spinal tap which was taken during my myelitis episode. I have heard from few other people that they have same experince but specialist can't explain why is this happpening. I am now pregnant and my nerve pain is even worse than before. I suppose it is because of increased viral activity due to hormonal changes. I am really afraid what will future bring especially after childbirth as we all know that childbirth has huge impact on woman's body and immune symptoms. Acyclovir does nothing for reducing viral activity so I am not taking them anymore. I was putting all my hope to Pritelivir but was disappointed to hear it will be only approved for immunocompromised patients and as I said according to all medical criteria I am not one of them. I am tired of listening that this is just a skin condition because for some of us it's not. It is nerve condition and can have serious impact on human CNS and peripheal nerve system. I agree that society puts huge stigma around this infection. It is totally unffair. But again I don't like minimising effects of this infection done by medical community which is in fact so misinformed when it comes to HSV. My hope is to raise awereness and education about this infection. Only with this we can reduce stigma and lower prevalence of HSV infection in society. Thank you for reading!