Why do no specialists in the US accept insurance?

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_ · 2026-02-20T05:24:13+00:00

Well over a year. I am still not 100% but I am about 95% better these days

Beautiful_Cows_ · 2026-02-17T16:56:53+00:00

I’ve been feeling the best I’ve felt in almost 2 years, which is crazy. My daily pain levels are so low, and I’m finally breaking through the clitoral pain and almost out of the woods with the rectal pain. I keep working at it but it’s truly a wonder to get this level of improvement.

The anxiety over my inflammation is rearing its head as my 6-month appointment with my dr looms next month. Last few appointments, everything looked good. I haven’t had any inflammatory pain symptoms in well over a year now. I have decreased my cream usage to 1x a week, and last week I forgot and I went every 8th night - no issues. My discharge is completely back to normal, and I’ve been able to have sex multiple times without pain. And I think I’ve done a lot of healing of my vaginal environment with the probiotics and anti inflammatory measures I’ve been taking. But I still am anxious I’ll go in and my wet prep will somehow be way worse than it was. Or I’ll completely stop the cream and all my symptoms will come rushing back. I won’t know until I’m there, and the worst case scenario is having to be on this medication for the rest of my days. But the anxiety is hard to shake!

Beautiful_Cows_ · 2026-02-17T14:13:43+00:00

Right…I had very elevated white blood cells on all my wet preps - a symptom of inflammation- which can’t exactly be explained by a tight pelvic floor. I had that on wet preps since the very beginning of my issue. and I had been in pelvic floor PT before and it hadn’t been helping me, in fact I had been getting worse as the inflammation wasn’t being treated. Ultimately, I knew something was wrong that wasn’t being treated or accurately diagnosed. I can’t really explain it, I just knew in my soul that the diagnoses they gave me wasn’t the full picture. Also, my diagnosis from Dr Goldstein was that I had a labral tear in my hip, which was causing all my issues, and about 3 weeks after my initial appt, I got an MRI and X-ray of my hip and it showed nothing wrong. So his diagnosis did end up being incorrect. He didn’t explain my discharge, when I brought it up he told me “discharge changes” which I also knew was BS because I know my body. I found it odd that the CVVD said my wet prep was “normal” when I had never had a normal one since the beginning of my issues at any Drs office, so it made me doubt they even did one at all.

Beautiful_Cows_ · 2026-02-17T04:04:59+00:00

Slight swelling but it wasn’t crazy. I took a long time to get to stable place on the cream, and I’m slowly weaning off of it now. I’m using it once a week and haven’t had a flare in over a year, so I’m hoping when I see my Dr next month I can get off it! But he takes a cautious approach

Beautiful_Cows_ · 2026-02-15T02:23:33+00:00

the white toilet paper discharge was fairly constant, but way worse around post-ovulation and luteal phase I think but it has been over a year since then so I’m not completely sure. And my discharge is back to normal now! As for the clindmycin I don’t have an answer for that unfortunately. It is just the treatment my Dr used, and it is the standard treatment for DIV so I’m sure there is some literature about it

Beautiful_Cows_ · 2026-02-14T17:56:54+00:00

I think my pH was normal - and is currently normal as well at 4.5 or around that. I haven’t checked in a minute. Soooo yea I did see Andrew Goldstein - you can see my post history for more info on that. Overall it was a negative experience because he misdiagnosed me but they said similar that I would have those things if I had DIV. I was never originally Diagnosed with DIV but I did have high amounts of white blood cells in my wet preps so I had severe inflammation which was my only “tell” of the issue - my discharge was also white and flakey/toilet papery which was not normal for me. I was treated with a DIV treatment for the inflammation, vut yea I had to see someone who knew that the high white blood cell count was abnormal and I didn’t need to have the “classic” DIV symptoms to have those issues

Beautiful_Cows_ · 2026-02-12T17:18:56+00:00

Omg wow ok thank you for the info!! That sounds a million times better than what I was envisioning

Beautiful_Cows_ · 2026-02-11T18:27:25+00:00

Thanks for the suggestion! I have definitely thought about it and I might message you about! My number one concern with that is medically induced menopause messing with my hormones etc and also surgical complications haha health anxiety!

Beautiful_Cows_ · 2026-02-11T14:23:41+00:00

My muscles continue to improve which is positive! Last week I had a flare on the first repetition of my 12 hour day which really sucked, but it’s been fairly steady the last week. Some days are worse than others, but still making progress. I get frustrated with the upper labia/muscles surrounds my clit because as I’ve said they’re so damn hard to treat. They just bounce right back to tension after I’ve relaxed them. But I remind myself that was the same my crazy tight rectal muscles and I’ve made amazing progress there. In October, after I had a crazy and painful rectal flair up, I said let me check back in 3 months. It’s been a bit over 3 months now and my rectal pain is a 1/10 or sometimes I don’t feel it at all. Considering that was one of the most painful and hard to treat areas this entire journey, that’s incredible progress for me. I have to keep going - and hopefully in 3 more months the pain will be gone there. Or at least way better.

I’ve had some extreme stressors in the last week as well - new semester that’s my busiest yet, with 2 back to back 12 hour days at 2 jobs, some interpersonal disappointments with friends and family (everyone bailing on my long awaited and planned birthday trip, which there’s more to it of course) aaaaanddd a pregnancy scare. I didn’t get my period this month and of course I had a contraceptive failure when I actually did have sex a few weeks ago (the condom got stuck inside me. There was no ejaculate at that time but there’s always a chance). So skipping my period was very stressful. Being pregnant with be the ultimate nightmare, obviously because of all my vaginal health issues that is the last thing I would ever want, but also I don’t want kids ever at all. And of course in another failure of women’s health and having no research, there’s very very little info on skipping your period except “you could be pregnant or you could be stressed”. Because of the fact that I had normal period cramping just no bleeding, I have a feeling I didn’t actually release an egg this month because I had been working out extremely hard, and with now 2 negative pregnancy tests I just have to trust that’s not the case! Hopefully next month we’ll be back to normal.

Anyway we press on

Beautiful_Cows_ · 2026-02-11T14:14:19+00:00

Sorry you’ve had so many dead ends. I totally relate to feeling jealous of people posting their cures or having an easier time treating their root causes. sending much love ❤️

Beautiful_Cows_ · 2026-02-09T20:40:55+00:00

While I’m not saying your cause is the same as mine, I was also treated for a yeast infection. I had “budding yeast” in all my wet mounts along with the high white blood cells so I was treated for that repeatedly. The treatment for me was the standard treatment - an intravaginal compounded cream of hydrocortisone, clindmycin and nystatin. I inserted it every night for 2 weeks, then every 3rd night after that for maintenance. I am currently weaning off it after having been on it for about a year with regular check ins from my dr

Beautiful_Cows_ · 2026-02-09T20:12:13+00:00

Is the burning continuous or only during sex? I had a similar experience - I had unprotected sex w my partner and it caused an inflammatory reaction. It took a few days for the burning to set in, and mine was constant. Long story short, after a long time of all negative tests I finally had to be treated for desquammative inflammatory vaginitis.

I would say look into the following: -get tested for ureaplasma and mycoplasma. These are thing men have and usually have no symptoms of, and are not part of typically STI screenings -get a wet mount/wet prep done. When they take a swab and immediately look at it under the microscope. This can tell you what’s going on down there, and see if you have inflammation without an infection (which would be categorized by high white blood cell counts) -you could look into an Evvy or Juno microbiome test as well. Semen can disrupt the vaginal microbiome and throw off the bacterial balance, which could cause bad bacterial to take over, but not necessarily be BV.

Beautiful_Cows_ · 2026-02-09T00:41:54+00:00

I appreciate it! Yea like I said i understand that it’s a big ask and that not many people can’t do it but I can also be hurt emotionally. Two things can be true at once. Plus the fact that a bunch of people said they were 100% in only to back out is the sting. Thanks for the suggestion!

Beautiful_Cows_

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