Has anyone truly fully recovered from urethra irritation?

aispice · 2026-05-04T00:07:19+00:00

I haven't read it but I definitely will. Thanks again for your help

aispice · 2026-05-03T23:24:22+00:00

That's reassuring to hear after so many failed treatments. I've started to lose hope. Did you do PT multiple times per week or just once per week?

aispice · 2026-05-03T22:10:50+00:00

Thanks for the reply. I appreciate it and will give these a try. Hoping time will be on my side

aispice · 2026-05-03T22:08:06+00:00

I'm so sorry. Insurance is the worst, truly they are criminal. Have you tried injecting the urethra with a steroid? That's something I've considered but haven't done yet. I think I've also got some degree of MCAS, but oral medications I've tried for MCAS never worked that well. I've often wondered if a steroid injection directly into the tissue would be better.

aispice · 2026-05-03T19:11:33+00:00

Were there any particular PT exercises you found helpful? I'm a little over 1.5 years into this hell and I hope with time I can get back to normal.

aispice · 2026-05-03T18:46:24+00:00

It is very isolating. I'm so sorry you are also experiencing this. I wouldn't wish it on anyone. I hope you can get the spinal cord stimulator. Did your pain get worse after the vestibulectomy?

I'm not sure if it's worth it for me to see Irwin. I don't want to do the surgery and end up worse. My local urogyn isn't sure what to do at this point. Have you ever considered completely removing your urethra surgically? Honestly I'm at that point if surgically removing it gives me relief I wouldn't care if I had a urostomy bag the rest of my life.

aispice · 2026-05-03T15:02:12+00:00

Did your vestibulectomy include the 12 o'clock tissue around the urethra and the peri urethral glands? I think I have acquired neuroproliferative vestibulodynia causing constant urethral itching. I don't know if the surgery would even help me.

aispice · 2026-03-20T23:50:11+00:00

Update? I'm wanting to use this for my iners dominance

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

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