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Desperation

Posted , 4 users are following.

ouch109
ouch109

Hi all

I havent posted in a while, just wanted to burry my head in the sand i guess

Things are bad on my end. I have pudendal neuralgia. Seems obvious to me that its post herpetic neuralgia

Most painful thing i have ever experienced. It just goes on and on. Its been weeks. I had to go home from work last week due to pain. Its like someone is stabbing me with a hot knife from labia to sacrum.

There is no end in sight. I am told it can last for month to years.

I cant take antivirals due to strange reaction. Im terrified i will have an outbreak and make things worse.

It was just 3 mos ago i was trail running with my dogs. Now i lay in bed depressed and doped up on neurontin.

I am actually having thoughts of suicide. dont worry, not on the cliff yet, but i feel so hopeless and broken.

Not sure why im posting this, its just not the kind of thing i feel like i can share with anyone else

0 likes, 24 replies

24 Replies

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  • Sabrina55
    Sabrina55 ouch109

    Posted

    Whoops -- I wish I had some magic words.  You are smart to reach out, isolation is not a friend.  It's certainly understandable why you are so low.  Does your insurance cover counseling?  

    To go from such an active life to that level of pain is hard to comprehend.  Most of us here have had to deal with figuring out what this means for our life -- but yours is a much tougher challenge.  And, as you mention -- there are few places to share what you are going through.  

    So, does research on nutrition give you diet changes/adjustments to focus on?  Lysine, for example?  Less/no processed sugar?  Lots of fresh fruits and veggies -- can you try and develop the perfect smoothie?  

    Keep venting here, and on other sights.  While I'm not ready to date, I found some great forums on positive singles, and have made some friends.  

    And, yours is a uniquely challenging scenario.  Can you journal/blog, or write a book or a screenplay?  The only attention HSV gets in the media is jokes about losers.  I'd love to see some movies about the real struggle it can be.

    Hugs to you.

    • ouch109
      ouch109 Sabrina55

      Posted

      Thanjs for your response sabrina

      Your words are encouraging

      I am a psychotherapist lol

      I know the signs and warnings for sure. Exercise has always been my go to to ward off the blues and negative thinking. I am having difficulty walking at this point.

      My doc gave me some neurontin cream that i just picked up. My hope is to get off the systemic neurontin. Its adding to my lethargy and i think making me more emotional than usual.

      I started acupuncture this morning and i am trying to get in with a physical therapist. I definitely need to get into at least some short term counseling (you are so right about that)

      My thoughts are getting the best of me right now

      I actually feel a little better having vented here a bit.... Spoken the unspeakable... As it were.

      Thank you so much for your kind words

    • ouch109
      ouch109

      Posted

      Sorry for the typos

      My brain goes faster than my fingers

  • FelizCastus
    FelizCastus ouch109

    Posted

    Hey, hang in there! I know you have an unusual complication, which just adds to the stress of having this, but hopefully it will pass. It wasn't always like this for you, so it can just as easily go back to before as it came on.

    You can see if lysine works for you, drink herbal teas (lemon balm or prunella vulgaris, if you can find it), and possibly try Famvir to see if it's better tolerated. Not for long-term use, but it might serve to break things up. Worth a shot!

    Anyway, it's good to reach out. That's what this forum is for and we all have bad days, including me. I try to remain upbeat and help others, but it also gets me down at times. Herpes is very isolating, and even more so where I am, as it's not as common as in the US. We've all been dealt a bum deal, but just need to roll with the punches and at least we have each other here to lean on. smile

    • FelizCastus
      FelizCastus

      Posted

      P.S. What happened with Mike? Did you ever tell him?
    • ouch109
      ouch109 FelizCastus

      Posted

      He faded out after the conversation

      Not unexpected

      I havent heard his test results

      this phn is terrible. I am terrifed because it can last for years. The only reference i have is shingles studies as its not really considered a thing with herpes. It pretty obvious thats what it is though.

      70% resolve in 3 mos. i guess its that 30% i am worried about. I am going on 1month.

      Its really hard to imagine just living with it. But i guess people do.

      Thanks for the reply

  • ouch109
    ouch109

    Posted

    Oh yea

    Im doing 3000mg lysine (1000 3xs, i will cut back a bit obce the phn clears), garlic oil, olive leaf and plan on adding oregano oil based on another posters great luck with it. I will add the tea and lemon balm.

  • ouch109
    ouch109

    Posted

    I am taking 1/16 of a valtrex a day. There is obviously no therapeutic effect but i am hoping to titrate up. Even at that dose the side effects are present. I have tried acyclovir, valiclovir, and name brand valtrex. I emailed my doc about famvir on friday. I am hopeful.
    • FelizCastus
      FelizCastus ouch109

      Posted

      Famvir (famicilovir) uses a different drug to the others, so it might prove different and hopefully more tolerable. I think it's not as cheap, so go with generic. Hope it works for you!
  • Sabrina55
    Sabrina55 ouch109

    Posted

    Whoops - I hope today finds you better.  

    Question -- if you don't mind.  You mentioned you are a psychotherapist.  Any recommendations on how to find a counselor to help deal with HSV?  

    While I don't have the physical issues you do, I am struggling with a level of despair I have never encountered, and to be candid, it's frightening.  I know I need some help, but would love some insights from a pro on what to ask, or other ideas on finding an effective counselor.

    I know everyone is different (as are counselors), so I'm not looking for some special secret, just your thoughts/insights from your unique perspective.

    Thanks.   

     

    • ouch109
      ouch109 Sabrina55

      Posted

      Hi Sabrina,

      I really understand that devestation that you are feeling.  Its crazy, before this, I would have felt compassion for a person explaining their despair around this issue, but I wouldnt have really gotten it.  Its a friggin punch to the gut like I've never experienced.  It really rocks the core.

      That being said, the best you can do is know that you are in the drivers seat.  You should "shop" for a therapist.  I know its expensive, but its worth seeing two to three people at first to find out where you fit.  Sometimes you know on the first visit that its a great fit, but you are not stuck if it isnt.  A good therapist will open the door for the fact that you should feel free to decide for yourself if the fit is a good one. 

      I'm a PHD, but I dont really think that is the best route for this.  We are too clinical. 

      The best trained people I have ever worked with that deal with "real life" issues are LCSW's (licensed clinical social workers). 

      You might benefit from finding a good LCSW (possibly on a friends recommendation).  Usually people say what they specialize in on their advertisment page.  I would think someone with training or experience in "womens issues" would be a good choice. 

      Just remember, never settle.  You probably dont need one of those brash therapists who will call you on your sh$# (there is a place for them, but not here).  You probably need one of those people who makes you feel instantly at ease, who meets you where you are with compassion; someone with a nurturing approach to help you heal and find your footing again.  If you dont feel that from the get go, move on.  Its not likly to transpire later. 

      I dont know if this helps, I hope so. 

      You are the expert on you

  • ouch109
    ouch109

    Posted

    My doc called in the Famvir,  and I'm own to a 6 on the pain scale today. 

    Fingers crossed

    • FelizCastus
      FelizCastus ouch109

      Posted

      Fingers crossed the famciclovir works for you, or that the pain just resolves anyway!
  • cheyenne1224
    cheyenne1224 ouch109

    Posted

    hello whoops. I'm from Mexico and I think acquired HSV-2 in 2011 on this occasion I only went a small eruption and had no symptoms of pain or cold. My skin has always seemed healthy even when I have an outbreak. , particularly as this is my bud is entirely internal last year in September 2014 I began to feel those strange feelings for the first time could not reactivate if my diet high in carbohydrates and sugar that used to drink up to 1 liter and average daily gaseous or what seems more clear to me was that I had a painful irritation of the glans after intercourse and have read that this can reactivate the virus., it was frightening and frustrating because I did not know that was what I had., since I did not present any type of skin rash., or in the genital area and around the anus. I've had relationships with several girlfriends and presented no discomfort so I think I have not sent them HSV 2 because my skin always looks healthy., what occurs to me is that they begin to swell my lymph nodes and also had that painful herpetic neuralgia of the pudendal nerve that is exactly what you describe., I could not sit in rigid places because I was so painfully hard as 3-6 months for the month of March to April 2014 started to feel better., but this year I have recently begun to have another outbreak., but this is less painful and im ready to fight with this b*st*rd i would like to know howI would like to know how you currently handled this painful post-herpetic neuralgia and maybe we can share some tips 
    • ouch109
      ouch109 cheyenne1224

      Posted

      Hi cheyenne,

      Im sorry you are going through this. Its terrible. Same thibg for me. My doc says shes never seen a healthier looking vulvua. Ive never had a traditional outbreak. My doc realky isnt willing to day its herpes related, but it seems obvious to me. Pudendal neuralgia is not a condition that just hapoens in most people. I cant take antivirals, can you?

      I sort of suspect that if i could take a heavy load of valtrex for a week it might go away.

      Its very upsetting!!!!

      I

    • cheyenne1224
      cheyenne1224 ouch109

      Posted

      Hello Whoops! I can take antiviral, but in reality they have no effect on me., so I have a completely natural method to combat my outbreaks has so far worked great., taking up 4 or 6 capsules of leaf olive, and when present burning in the urethra use colloidal silver I put it in a syringe and then launched a download in my urethra for 7 minutes and not spend more than 2 days for herpes disappears. I have also heard that some kind of ointment capsaicin helps for sore ribs, but in the genital area and pudendal area must be painful to apply.
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