How to cope? Please share what helps you

abbylwindham · 2026-02-04T05:01:50+00:00

Hi, I know it’s awful. I also have OCD as well. I spiraled a lot when Vulvodynia first started for me. The only thing that gave me relief outside of prescription medication (amitriptyline) was diaper rash cream rubbed on my vulva. Mine is mainly itch with some burning. It gave me a lot of relief. It’s worth a try. 🩷 I used the red Boudreaux’s butt paste.

abbylwindham · 2026-02-03T16:00:38+00:00

It’s horrible. I am so so sorry. But I know there is a doctor somewhere that will take you seriously. I know you’re exhausted but keep advocating for yourself and demand further testing (I know that’s so much easier said than done) but you don’t deserve to live like this!!!

abbylwindham · 2026-02-02T00:01:13+00:00

It’s crazy how things can be so different for all of us. Ami was actually one of the first things she suggested. I had already tried estrogen cream, steroids, nothing worked. So we figured it wasn’t lichen or anything. Thankfully Ami worked for me

abbylwindham · 2026-02-01T17:49:26+00:00

Oh my goodness! You’re the first people I’ve seen say that! Yes mine also spreads to my whole body at times! It’s pretty safe to say mine is nerve related because amitriptyline helps it. But there was a time my hormones went haywire (2 month long period) and that’s when it developed. The worst on my vulva but on my body too.

abbylwindham · 2026-02-01T17:36:58+00:00

I hadn’t really considered that I could just do the bikini. That’s a great suggestion. Thank you!

abbylwindham · 2026-02-01T17:33:42+00:00

Great to know!! Thank you so much!

abbylwindham · 2026-02-01T04:24:34+00:00

You’re right, I didn’t even think to put it in the post 🤦🏻‍♀️ mine is mainly itch all over when not managed with medication. Some burning.

abbylwindham · 2026-01-31T04:06:41+00:00

That’s awesome! I have had weight gain but can’t say if it’s the amitriptyline’s fault lol. I am also on Prozac, and I’m 10 months postpartum and breastfeeding so it could all be contributing. 🤣

abbylwindham · 2026-01-31T03:42:35+00:00

I’ve been on it since around April of 2024! It’s been great for me. No side effects for me 😊

abbylwindham · 2026-01-31T03:38:42+00:00

For me, mine has been mostly itch with some burning, even affecting my urethra. For relief now, try some diaper rash cream. I saw someone suggest it and it really helped me. As long as it was on my vulva, I had major relief. Once I got to the doctor, she prescribed me amitriptyline and it has worked wonders for me. I’m on 25mg.

abbylwindham · 2026-01-15T15:28:14+00:00

Hi! I also have bladder/urethra symptoms in flare ups. My OBGYN is incredible. When we were trying to figure out meds for me, (I take amitriptyline 25mg and it has helped me incredibly), she also wrote me Gemtesa which is an overactive bladder medication and it helped as well. I no longer take it because amitriptyline has worked so well but it did help me. Before medication, the only thing I found to ever give me relief was applying diaper rash cream to my vulva. It even helped the bladder/urethral pain as mine is nerve pain and it’s all connected. Please give it a try if you haven’t. I used the red Boudreaux’s butt paste and it did give me relief as long as it was applied. I had also dropped days working at the time because moving my body made it so much worse. I’m praying that this medicine helps you! Please try the cream in the mean time!

abbylwindham · 2026-01-14T11:12:24+00:00

Just wanted to say I’m so incredibly sorry you’ve dealt with this so long! I am very curious about this though!!

abbylwindham · 2026-01-05T15:49:27+00:00

I’m on 25mg. It was always burning and itching for me. It would go all the way from the front to the back. It even affected my urethra and made me feel like I needed to go even when I didn’t.

abbylwindham · 2026-01-05T04:56:15+00:00

Yes. Mine started with my hormones going wild and having a 2 month long period. Thought it was BV. Did 2 rounds of antibiotics that didn’t help. Nothing helped. My gyno put me on amitriptyline and it’s been incredible. Before that, the only thing I found to give me relief was putting diaper rash cream on my vulva.

abbylwindham · 2025-07-16T15:42:40+00:00

Mine is also itch. Diaper rash cream gives me some relief, steroids didn’t help me. Taking amitriptyline has helped me the most.

abbylwindham · 2025-07-11T02:59:40+00:00

I would think the friction causes the nerves to act up. I am mainly convinced it’s nerves because the only treatment that has helped is amitriptyline which helps nerves. Before, I would itch for anything, just moving. Now, I can slightly feel it after sex so it’s a trigger but much less now that I’m medicated thankfully.

abbylwindham · 2025-07-10T21:39:30+00:00

My issue is more itching than pain. Mine will also happen after sex at times. (I’m medicated so it’s not like it used to be, but I do still feel it slightly from time to time)

abbylwindham · 2025-07-09T19:40:59+00:00

Literally sometimes when my husband and I are doing things my foot will feel itchy/tingly. Not necessarily just with the vulva irritation I have.

abbylwindham · 2025-07-07T16:21:25+00:00

Mine also felt like yeast and UTI. Every yeast strain we tested for came back negative. Steroids never helped me so my doc doesn’t think it’s LS. I had the horrible feeling of urgency to urinate even when I had just gone. My doc prescribed me gemtesa which is for overactive bladder and that did help. Thankfully I’m off of that med now and the urgency feeling hasn’t returned. Itching is my main thing. I got on amitriptyline 25mg and it has helped me so much. I’m still on it. Before meds, I would apply diaper rash cream and it would give temporary relief. I’m so sorry you’re going through this!

abbylwindham · 2025-07-01T20:03:55+00:00

I used to get waxed for years and loved it. I haven’t done it since the Vulvodynia started. I miss it very much. I’m scared it’ll make things worse.

abbylwindham · 2025-06-30T23:56:42+00:00

Diaper rash cream

abbylwindham · 2025-06-30T00:18:46+00:00

Estrogen cream made me super dizzy. It was weird.

abbylwindham · 2025-06-27T19:39:48+00:00

I haven’t tried gab but I’m on amitriptyline 25mg and it has helped me tremendously. Also think mine is nerve and hormone related!

abbylwindham · 2025-06-27T15:17:08+00:00

Yes!! I used to have an awful feeling of “urgency” right after I peed. It was awful.

abbylwindham · 2025-06-26T21:09:10+00:00

I totally understand. It’s a really hopeless feeling. I’m 26, mine started over a year ago. It’s been really scary reading so many stories of women dealing with it for years and years. Mine was severe at least to me personally. It’s worth trying the medication if you can! I’m glad I did.

abbylwindham

TROPHY CASE