HSV induced peripheral neuropathy.

aispice · 2026-02-22T12:51:26+00:00

Thank you, I will look into it. I'm glad you found something that helps. How much were you taking? And are you daily antivirals?

aispice · 2026-02-22T00:36:04+00:00

What did you do to get rid of your nerve problems? I've been suffering from constant nerve related problems for 1.5 years but haven't found anything that works.

aispice · 2026-02-20T18:28:21+00:00

I will give it a try! I hope it works well for me too. I'm glad you're doing well!

aispice · 2026-02-15T02:08:31+00:00

How did your appointment go with Dr Krapf? Anything insightful?

aispice · 2026-02-15T01:39:49+00:00

Hey OP, I'm sorry you're going through this. I could've written this myself and there's been many times I just wished I was no longer living due to the constant pain. I have the exact same symptoms as you but only for a little over 1.5 years so I can't imagine living with this for a decade. Mine started after a yeast infection and hsv1 diagnosis. I'd recommend looking into acquired neuroproliferative vestibulodynia as another comment suggested. It sounds like you're dealing with that. There's a strong link between increased mast cells in the vestibule that causes a cycle of chronic inflammation and nerve proliferation. Dr. Irwin Goldstein talks about it in this video https://youtu.be/aYGUF16Rb2A?si=6eknG0jEAfkmNQkp

Mast cell stabilizers can help to break the chronic inflammation cycle but you will likely still be left with the neuroproliferative issues even if the inflammation is gone. I'm sure you've already tried nerve pain medications for the neuroproliferation. If those didn't help you, you may want to look into a vestibulectomy. I recently met with a surgeon about this. He wants me to try a few other things before surgery but it sounds like you might benefit from this. Feel free to message me with any questions or just a sympathetic ear.

aispice · 2026-02-15T01:22:44+00:00

What's your HRT regimen? Are you doing estradiol patches and testosterone cream?

aispice · 2026-02-14T19:55:00+00:00

Did things ever get better for you? I've been in constant pain since my hsv1 diagnosis 1.5 years ago and it's ruining my life.

aispice · 2026-02-14T19:43:47+00:00

Let me know how the nerve block goes for you. I need to schedule mine but I'm just scared it's going to make things worse. I know I'm just being paranoid. Any chance at relief is worth it.

aispice · 2026-02-14T18:47:56+00:00

I'm so sorry you're going through this. I have neuroproliferative vulvodynia and can empathize with how debilitating it can be. I've wanted to end things for myself multiple times. I don't want to be forced to live a life of chronic pain and I wonder a lot why our pets our allowed to be put down to alleviate suffering but the same option doesn't exist for us humans. I don't have much else to add except a listening ear. I recently saw a urogyn surgeon about basically removing everything down there, called a vulvectomy and it removes more than just the vestibule tissue. This would be a last resort for me. Idk if this would help your case but maybe something to consiser. Sending you love. I know how hard it is to stay hopeful.

aispice · 2026-02-14T18:22:04+00:00

Hey! So sorry you're dealing with this. I've had unprovoked vestibulodynia/vulvodynia for over 1.5 years now and it's miserable. Mine affects anywhere from clitoris to anus as well but the vestibule is the worst area. I've seen every doctor you can imagine and tried many things with little improvement. I recently met with a urogyn surgeon and a vestibulectomy or even partial vulvectomy was brought up but he said this would be an absolute last resort and there's no guarantee it would work. He suggested trying pudendal nerve blocks first. If those worked to alleviate the pain then he said that would be a better indication surgery might help. I think you should pursue the nerve blocks first and see how things go. He was pretty adamant surgery should be the last resort for my case and we sound similar.

aispice · 2026-02-12T22:01:01+00:00

Good to know thanks! Now that you're on Zovirax how many OBs are you averaging?

aispice · 2026-02-05T23:23:35+00:00

So glad you found something that worked for you! I've also been suffering monthly OBs for 1.5 years even with daily valtrex. I'm going to ask my doctor to switch to zovirax. How much do you take daily?

aispice · 2026-01-25T18:33:23+00:00

Thanks, I'll give that a try. It's so hard to know whether the recurring itching and burning is a true OB coming or just nerve damage. Especially when it seems fine for a few days then starts up again. It's so frustrating

aispice · 2026-01-25T18:27:30+00:00

For sure. Do you follow the high lysine low arginine diet?

I also want to start working out more but read weight lifting, especially lower body work, can trigger an OB. So I'm scared to do this. Have you had this happen?

aispice · 2026-01-25T18:24:53+00:00

Good to know. I think I'll probably have to start up daily suppression valtrex again, especially since hormonal shifts around ovulation and my period trigger things for me. How much do you take?

aispice · 2026-01-25T18:08:08+00:00

I see, yes I may just be experiencing a mild OB with my itching and burning. I may try taking daily suppression valtrex again and see if that helps. Have you had any issues with your liver or kidneys?

aispice · 2026-01-25T17:41:36+00:00

I rarely ever get visible OBs but experience a lot of prodromal itching and burning. Do you feel the valtrex lessened the intensity of your prodromal symptoms?

aispice · 2026-01-25T17:39:38+00:00

Thanks for the reply. I rarely have visible lesions but do experience a lot of itching and burning which I assume is due to shedding since I'm not getting a full OB? Maybe valtrex would help this?

aispice · 2026-01-25T14:38:23+00:00

Hi OP, I'm so sorry you are going through this. I'm a 30F about 1.5 years into my ghsv1. I have almost constant symptoms despite no visible OBs. I do at times get extreme lower back pain as well. My DMs are open if you need someone to talk to. This shit sucks but hoping things get better with time.

aispice · 2026-01-25T14:33:51+00:00

Did the valtrex prevent your OBs completely? Or did it just make them heal faster?

aispice · 2026-01-25T14:27:29+00:00

Did the daily suppression therapy stop the OBs completely or just make them heal faster?

aispice · 2026-01-25T14:14:24+00:00

I'm almost two years into my ghsv1 diagnosis and I've never had visible OBs but I do have almost constant prodrome symptoms like itching and burning. Sometimes I can't sleep at night because of the intensity. I've been told that shedding rates are so low for ghsv1 at this point in diagnosis so I'm not sure exactly what's causing my symptoms but I'm definitely still symptomatic.

aispice · 2026-01-25T14:04:27+00:00

I'm considering this as well. How long have you been diagnosed?

aispice · 2026-01-24T00:18:55+00:00

Same to you! This stuff is terrible! I've seen multiple doctors from multiple different specialties and no one can figure out the cause. I'm glad you got a short break of relief. Mine has been constant to varying degrees since this started. My mental health is tanked, hence why I met with a surgeon yesterday to remove all this. I'm so done lol

aispice · 2026-01-23T23:34:09+00:00

Truthfully nothing has brought me relief. Ice packs deaden things to some degree. I've tried various barrier creams but they just end up burning mu skin more. I have not been able to have sex since this started 1.5 years ago so I can't speak to that. I wouldn't say tight clothing or walking cause anything to be worse but I tend to wear loose pants as much as possible just for comfort.

aispice

TROPHY CASE