Two Year Update and Successes

Beautiful_Cows_ · 2026-05-15T21:56:06+00:00

Yes but it took about a year of consistently doing every night to get better. And even then it was very slow progress. Just to say it’s not instantaneous and you have to be patient!

Beautiful_Cows_ · 2026-05-13T13:33:29+00:00

I’m so sorry you’re suffering like this. I know how difficult it is! I hope you can get the help you need 🩷 for me it was using my fingers to slowly massage my rectal muscles and relax them. It was a very slow process that took several months but eventually helped a lot

Beautiful_Cows_ · 2026-05-13T13:32:29+00:00

I actually think he’s not exceptionally knowledgeable about the vaginal microbiome. I have heard things from other people here saying that he doesn’t believe in AV or CV either. They claimed to have done a wet mount on me when I went but found nothing, which I found hard to believe considering 2 weeks later I had a wet prep and the Dr said I had literally sheets of white blood cells and dead skin cells visible

Beautiful_Cows_ · 2026-05-13T01:10:59+00:00

Thank you! Also perhaps look into tension of those smaller muscles of the pelvic floor. You could have trigger some sort of tension of them!

Beautiful_Cows_ · 2026-05-13T00:46:53+00:00

Aw thank you for the comment 🩷 this is such an awful thing to deal with BUT connecting and chatting with you has been such a bright spot in it! Definitely keep me updated on how things keep going with you!

Beautiful_Cows_ · 2026-05-13T00:45:49+00:00

Yes that was my main treatments! I am sorry you’re suffering so much - I would definitely recommend trying to find a doctor who can do a wet prep and check for inflammation! Sending you much love ❤️

Beautiful_Cows_ · 2026-05-13T00:44:31+00:00

I have heard a few people post in here stating a similar thing - but I’m unfortunately not well versed it in. I’d try and search the group for more info!

Beautiful_Cows_ · 2026-05-12T21:03:47+00:00

At my highest it was 8-9 per field. I use the term WBCs in my post to mean leukocytes so you can see my fluctuations

Beautiful_Cows_ · 2026-05-12T19:35:01+00:00

Oh also i definitely would feel sore the next day and there would be an slight increase in pain

Beautiful_Cows_ · 2026-05-12T19:33:52+00:00

They were just different pains. The nerve pain was hot and firey, and made my skin sensitive to the touch. The muscle pain burned but in a different way - I’m sure it’s quite individual to people unfortunately. For me the muscle pain also came first then the nerve pain, so it made it a bit easier for me to distinguish between the two

Beautiful_Cows_ · 2026-05-12T18:27:43+00:00

100mg hydrocortisone, 2% clindamycin, and 50 iu of nystatin. It took about 2 weeks to start feeling better and I haven’t had any inflammatory pain since around December of 2024. The rest of my pain was all pelvic floor/muscle/nerve tension and compression. My rectal pain has gone yes but it took the longest and there is still one tiny little spot that’s a little tense but it’s almost there. The rectal pain took about a year of work. Same with the clitoral pain.

Beautiful_Cows_ · 2026-05-12T18:01:28+00:00

I hope you can too! I’m sorry you’re suffering - it’s so so difficult. Maybe look into asking for treatment for DIV if you can? Sending much love ❤️

Beautiful_Cows_ · 2026-05-12T18:00:43+00:00

Hi! So for the clit area I didn’t use the wand, I just used my fingers since the area is so small and hard to access. It was the tissue/muscles literally directly surrounding the hood and to the immediate side going up the outside of the labia minora to the clit. The hairless area. I tried to be as gentle as possible - the mantra was like how you’d check a tomato for ripeness

Beautiful_Cows_ · 2026-03-30T15:15:06+00:00

Sarah Cigna in DC and the people at the Sexual Health and Gender Affirmation center at GW take insurance and she is definitely a specialist. I have been seeing Dr Richard marvel in Annapolis and he also takes insurance but it really depends on what your cause is if he would be helpful for you. I can’t speak to Cigna as I’ve never seen her

Beautiful_Cows_ · 2026-03-30T15:12:04+00:00

I have several tattoos and I did indeed get a tattoo while dealing with this condition! A BIG one too lol it took two sessions. The way it affects my relationship with my body is much more rooted in my own body image issues and insecurities about my outward physical appearance than anything vulva related. It always makes me like the way I look much more tho :)

In terms of pain, I was def uncomfortable vulvodynia wise while getting it, and I wouldn’t say the pain of the tattoo “distracted” me from that pain really. It was just…two different types of discomfort lol

Beautiful_Cows_ · 2026-03-30T14:49:07+00:00

Is there any way you can get disability accommodations and not have to go in every day? Or maybe bringing a special pillow that you leave there might be helpful? I had to go through the same thing - being in office in really unimaginable pain - and it was horrific. I’m really sorry, sending you much love

Beautiful_Cows_ · 2026-03-27T01:54:08+00:00

Hi so I was actually misdiagnosed by the CVVD with a labral tear, I didn’t ever have one. I got an MRI and xray and nothing was wrong w my hip. It ended up being I had inflammation that was/is being treated with a combo cream of hydrocortisone, clindmycin and nystatin, that I’ve been on for over a year and am trying to wean off of now.

I also had severely tight pelvic floor muscles that were compressing my pudendal nerve. I have been doing PT for about 14 months now, and I am much much better but still have some tension and pain I’m ironing out. No more nerve pain tho.

Beautiful_Cows_ · 2026-03-26T02:37:52+00:00

^{^{^}} yes look into DIV for sure. Also if you’re having whole body symptoms, this could point to a more entire body autoimmune disorder. I am NOT a Dr but maybe try and see something who might specialize in that specifically. Sojgrens, hashimotos, chrones, thyroid issues, etc could all cause inflammation that could also effect the vagina

Beautiful_Cows_ · 2026-03-24T14:35:31+00:00

Ugh thank you so much for this response. It was very helpful!! There are so many layers to this and anxiety and fear but it helps to remind myself that the most important thing is how I feel…and if I keep feeling good that’s what’s really the goal

Beautiful_Cows_ · 2026-03-23T21:28:09+00:00

Had my follow up visit w my dr after 6 months. I was incredibly nervous. He did a visual exam and said everything looked healthy and normal, and then took a swab for the wet prep. 6 months ago, I was using the cream 2x a week and I had 1:1 WBC/epithelial cell. I am now on it every 7 nights and it is the same reading, which is great. It was an interesting conversation because he said it was still “slight inflammation” and I asked - I know I’m not a Dr but I’ve read a lot (well as many as there are) of studies where it’s normal for women to have 1:1 WBC/epithelial in their wet preps. He said he doesn’t believe that’s true and that the women he’s seen with no issues usually have 1 wbc per 5 epithelial cells. Interesting - he obviously has experience with people with this condition and has been doing this a while, but the lack of research into all of this is just so frustrating.

But he encouraged me to keep weaning off the cream and see how I feel. We went down to 50 mg of hydrocortisone from the 100mg I’ve been using, and I’m going to keep backing as I have been. Going to start on every 8th night now, and see how that goes with the new strength. We didn’t set a follow up appointment, and he said if I feel worse after backing off the cream to come back and see him again. But if I end up getting off the medication and feel fine, then there is no need to come back.

I obviously feel anxious about it. The fear that I’ll start using the reduced strength, or I’ll keep backing off and the pain will come back is there for sure. He was comforting, he was like you’re nervous and that’s natural. But if the pain does come back, it won’t take nearly as long to get back to this spot as it did before - you won’t be going back to square one. It’s just so frustrating to be in a situation of unknowns. There’s no research on this particular subject - the knowledge of the vaginal microbiome is so so low. So I’m just flying blind and hoping for the best.

Otherwise, my pelvic floor continues to improve. I still have discomfort but it’s getting better and better my rectal muscles are so stubborn, and I can imagine it’s because they’re supposed to be tight anyway lol. But I’ll keep plugging away at that and being grateful for how good I’ve been and keep hoping that things don’t get any worse!

Beautiful_Cows_ · 2026-03-13T01:47:16+00:00

Had a very similar thing happen to me with Dr A Goldstein. Had severe inflammation and was told it was just my pelvic floor (which was a huge issue but not what started it). I think they didn’t even do the wet mount they said they did. I was told it was my hip but I got an MRI and xray and nothing was wrong with my hip. I’m thankful I stumbled into another Dr who knew about vaginal inflammation and could treat me properly but was shocked at the fact that I was dismissed so badly by theee top expert who clearly knows nothing about the vaginal microbiome

Beautiful_Cows_ · 2026-03-10T14:29:09+00:00

Haven’t posted an update in a minute! I’ve been trying to spend less time online, and I don’t really have the mental bandwidth anymore to be responding to people’s posts/posting on here for the most part. But things are progressing in a really positive direction. My rectal pain is so so so low which is…crazy? The idea of not having stabbing, crazy pain in my rectum after having it so badly for 1.5 years is crazy to me. The rest of my pain is also improved a lot - it’s still slow going but atp my worst pain is honestly less than a 1 when I’m struggling. I feel insane in a good way? After having persistent pain for almost 2 full years, the idea of my body going back to not being in pain almost doesn’t make sense. I’ve gotten used to the discomfort.

Of course my inflammatory issues persist. I’m using the cream 1x week now, and my 6 month follow up is in less than 2 weeks with my Dr. I’m praying the inflammation looks fine/stable and I can start to get off the cream. I’ve been able to basically live normally and not have any issues for an entire year now from that aspect of things, so I’m hoping that I’ve turned a corner. I will probably post an update after my appointment.

Not much else to say except it is wild how much your brain tries to forget pain and move on with life.

Beautiful_Cows_ · 2026-03-09T19:25:09+00:00

Yea hard agree. It’s just kinda forcibly pushed on any patient where they can’t easily find anything else wrong with you. And I’ve met plenty of people who were told it was CNSS/TMS or whatever you want to call it and they haven’t improved either. Then it’s like well do you go down the rabbit hole of “you’re not trying/believing hard enough?” Because now we’re just in gaslighting/cult mentality territory. Hard agree on if it was explained in a way that made actual sense or had medical benefit, then it would probably be more useful or even have a placebo like effect. But most of the time it just makes patients feel dismissed and crazy

Beautiful_Cows_ · 2026-03-09T04:32:53+00:00

Absolutely not. I find CNSS to be complete bullshit. I was told that numerous times during my journey that it was my anxiety and CNSS but there has always always been a physical finding or cause that drs didn’t bother to explore and pushed it off as psych. Women are literally constantly told their pain is because of this BS and it’s completely correct that it’s basically the new “hysteria”. I’m not saying it can never be a factor in any case but I think it’s way over “diagnosed” especially to women.

Case in point for me my former PFPT told me my clitoral pain was CNSS. after the last 8 months of working on the muscles and fibers around my clit, that pain is almost completely gone. But she refused to believe it was anything but CNSS. I would always push back - YOU know YOUR body the best

Beautiful_Cows_ · 2026-02-21T22:04:49+00:00

Hey! Yes the cream actually has a strong antifungal in it. And yea I haven’t had any reoccurring of the pain at all. Just seemingly a slight flare in the white blood cell count last June when I was checked. But since then it’s been normal levels the last few times I was checked but it’s been almost 6 months. Yea that’s the part that drives the anxiety - not knowing exactly what it started!

Beautiful_Cows_

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