A year later and so much better!
Hi Everyone!
It’s been about one year (and one month) since my entire ordeal started and I am doing so much better so I wanted to share my story in case anyone needs a little hope.
Feel free to look through my past posts to see everything that happened to me, but here’s a quick summary of the insanity!
April 2025-
Diagnosed with a wart on my pubic area had a complete mental breakdown, and as a result started constantly checking myself down there and severely over washing. This caused what I now know to be lichen simplex chronicus but at the time I had no idea what it was and it took like six months to get properly diagnosed.
May 2025-
Because I was constantly “checking” myself in public places I threw off my pH and gave myself my first ever case of BV and possibly also trich. This caused massive amounts of swelling in addition to my lichen simplex. Also, sooooo much discharge, which irritated my skin further. I’ve been told that the trich was possibly a false negative since I tested negative for it and then randomly tested positive for it a week later, even though I was not sexually active. Either way, at the time I just wanted to feel better so after taking a full dose of metronidazole for BV I took ANOTHER 10 days of oral metronidazole (torture).
June-August 2025-
Saw MULTIPLE gynos trying to get help because I was not feeling better after the antibiotic. My vulva was so swollen it felt like I had balls honestly. I was prescribed multiple low-dose steroid ointments or creams, which helped a little but the issue kept coming back. My vulva was so swollen I could barely wear underwear, could not walk, could not sit. I was calling out of work constantly, and because I became so sedentary, I ended up in so much bodily pain.
My neck, my back, my hips, my legs hurt so bad I could barely walk. I believe I gave myself pelvic floor dysfunction from clenching down there. I was getting neurological issues like pins and needles and muscle twitching. I wasn’t eating. I literally was deteriorating so fast. It was at this time I got diagnosed with vulvadynia and was advised to go to pelvic floor therapy. I did three sessions and I was like “this is not working for me.” I ended up starting regular physical therapy for my back, which helped a lot.
September 2025-
I found a gyno who finally listened to me and started to think outside the box. This was gyno number 4 I think? She tested me for urea plasma and myco plasma (negative thankfully) and she was an angel sent from heaven because she finally said to me “have you ever seen a vulva dermatologist?” and I was like no I didn’t even know they existed!! She referred me and I finally got to see the vulva derm in October 2025.
October 2025-
This dermatologist who specialized in vulva skin read my story from the notes my gyno sent her and basically walked into the room saying I know what’s going on, but let me see the skin so I can make an official diagnosis. She took one look at me and was like “Yep” “lichen simplex chronicus”
During this time, I was still in physical therapy, but in excruciating pain because my body had deteriorated so much at this point.
She put me on three weeks of a high, high dose steroid ointment, which helped so much. She said the steroid ointment the other gynos were giving me were way too low. I was terrified to take the high dose steroid but at this point I had to do what I had to do so I could get my life back.
After that, she told me to use Vaseline twice a day for maintenance and prescribed me another type of prescription ointment, which I was nervous about taking so I never did.
October - February 2025-
Healing was extremely slow, but I was doing better. I was getting frustrated that the Vaseline wasn’t doing that much so I switched to coconut oil which helped a lot. But to be honest, that didn’t do much either.
Here is what finally got me to “mostly better” and gave me my life back!
In February 2025 I went for my follow up with the dermatologist and she confirmed that my skin is looking a lot better but I told her I’m still in a lot of pain. I asked her if I can use Aquaphor and she said that’s fine. I was frustrated at first because the Aquaphor helped but didn’t immediately fix everything but I kept with it because it’s the first thing that I felt like made a big difference in my skin after using the high-dose steroid. I have now been consistently using Aquaphor twice a day since February 2025 (3.5 months) and my vulva is so much better I can walk and exercise without pain most of the time. I had to modify my wardrobe a little so I no longer wear jeans, but I can wear leggings to exercise and I’m back in Pilates three times a week!
Physical therapy helped my back and getting back into Pilates has helped me rebuild the muscle I’ve lost. I’m still working on that and I’m not where I was before, but I’m no longer calling out of work constantly and I’m back to living my life.
I definitely gave myself some pelvic floor issues because I have sitting pain now but I’m back in physical therapy to work on my cervical neck issues. (This is because in the meantime, I gave myself so many neurological issues from the stress and lack of physical activity. I thought I had multiple sclerosis. happy to report that an MRI showed I do not have MS but I do in fact have some cervical neck issues). I’ve only done a few sessions if PT on my neck, but I’ve noticed so much improvement in my overall pain throughout my body, including my sitting pain, by getting my neck back in order. it’s crazy how all of these things are interconnected. Bodies are weird!
I also started supplementing with D3 and K2 liquid supplements since February 2025. I believe that has helped a lot with my skin inflammation and has helped my body heal in addition to using the Aquaphor.
Anyway, I’ve actually done a lot more, but this post is already super long. I hope it brings some people hope that even if you are in a merry-go-round of doctors, hopefully you will find your issue and sometimes healing takes time.
If you suspect that you have a skin issue, please seek out a dermatologist who specializes in vulva skin or women’s health. Ultimately, it was the dermatologist who saved me!!
What healed me:
-high dose steroid ointment 3 weeks 2x per day
-aquaphor 2x per day for 3.5 months
-d3 k2 liquid supplements daily
-physical therapy (back and cervical)
I also I am doing a lot of somatic work, which I believe is helping my body heal overall.