r/vulvodynia 3h ago

Support/Advice I have mucosal atrophy and vaginismus.

5 Upvotes

W20. I’ve been married for 2 years, and before that, my husband and I dated for 3 years. We both matured early and were emotionally ready enough to get married at this age without regretting it. I believe he’s the person I’ll spend my life with, and he feels the same.

I’m severely underweight. At 165 cm tall, I weighed 46 kg. That wasn’t a big problem for me — I always looked fine — but I’ve always had very long periods, about 9–14 days. Before the wedding, I saw a gynecologist because my period lasted 26 days straight (that was the only time it happened). He explained that I have many eggs but very low body weight, which causes long periods. He prescribed hormonal pills, and after that, my periods averaged 8 days. Everything was okay.

But about six months after the wedding, I started having gynecological problems. The first thing I noticed was that my libido disappeared, and I stopped producing natural lubrication. I thought it might be due to the birth control — I’d heard that can happen. But then, gradually, during sex, each time felt worse and worse. Based on symptoms, I started thinking I might have vaginismus, because there was a cycle of pain → fear of pain → even more pain → reinforcement of fear → muscle spasms. Later, I became 100% sure I had vaginismus — I couldn’t even insert the smallest tampon without pain. Penetration was out of the question.

I struggled a lot with this. I worried that if I couldn’t get better, my husband would leave me. (He’s also 20, and people that age have a lot of sex. He has a high libido and wants it every day, and I can’t give him that.) I tried exercises, I tried vaginal dilators, but almost nothing changed.

By that point, we hadn’t had proper sex for about 8 months. We tried occasionally — lots of lube, very slowly. At first it was very painful, then the pain would go away, but there was no pleasure either — just a rubbing sensation, and after a few minutes it would start chafing.

I went to another gynecologist (both times at private clinics). I didn’t go because of the vaginismus — since gynecologists don’t really treat that, it’s more of a psychological issue — but because my birth control pills were becoming less effective: my periods were getting longer again, lasting 13 days. Going to that gynecologist was a mistake. She seemed incompetent from the start. Before the exam, I warned her I might have vaginismus and asked her to be very gentle. She waved it off, said it was probably just vaginal dryness, but when she did the pelvic ultrasound — well-lubricated as the probe was — she inserted it abruptly and I jolted. Then she agreed it was vaginismus.

I had blood work done for hormones, and my levels were quite low. She prescribed different pills, and for vaginismus: chamomile tea, vitamin D3, amino acids, and advised me to relax before sex — like taking a hot bath (as if I hadn’t tried everything by then). And the key part, lol — she prescribed Phenazepam. I didn’t know what it was; she said it would relax me and to take it before sex.

So I go to the pharmacy, hand over the prescription, and the pharmacist says, “Do you know this is a tranquilizer? I can’t sell it without a prescription.” I called the clinic and explained. They told me Phenazepam was listed as a recommendation, not a prescription, because she doesn’t have the authority to prescribe psychiatric drugs. Except her instructions didn’t say “recommendation” at all. Anyway. Those pills didn’t help. I even got Phenazepam through someone else (who it was prescribed to), just to test it. Of course, it did absolutely nothing.

After that, I stopped taking hormonal birth control. Deep down, I hoped at least my libido would come back. Of course, it didn’t.

After all this, I had no idea what to do, where to turn, or how to treat this. My only idea was to gain a normal amount of weight — then my hormones would stabilize and everything would be fine. But that was very hard for me. I’m one of those people who eats and doesn’t gain weight. At home, I just couldn’t do it.

Then I went to work as a camp counselor — live-in work with 5 meals a day, eating with the kids. There, I managed to gain a bit of weight because you’re running around all day, which gives you a good appetite. I ate a lot in the cafeteria, took extra portions, and drank protein between lunch and afternoon snack. When I got back, I weighed 51–52 kg. At home, I tried to keep the same eating routine, but I couldn’t eat as much, so I lost the weight. Now I weigh 50 kg.

While I was at camp, I randomly found an AI prompt online for an intimate health consultant. Since I’d lost faith in the gynecologists in our small town, I decided to try it. It turned out to be genuinely effective. I uploaded my hormone blood test results, and the AI explained everything perfectly. Before that, I never fully understood what was happening to my body — now I did. After a very long conversation, listing every detail of my symptoms, discussing my lab results, DeepSeek concluded that I have hormonally mediated vulvar atrophy and vaginismus secondary to hypogonadotropic hypogonadism (functional ovarian suppression due to CNS/pituitary issues).

I fully agree with this. Gynecologists would never have given me this diagnosis because they don’t listen beyond 5 minutes of my explanations — they move straight to the physical exam and make incomplete conclusions. But this fits exactly. I’m sure this is what I have.

You can judge me for trusting an AI over a real doctor, but based on my experience, the AI turned out to be more competent in my situation. Let me explain my diagnosis in simple terms: because of my underweight status, my brain shut down my ovaries — they’re dormant. As a result, my ovaries don’t get the signal from my brain to produce estrogen. Without estrogen, I have no lubrication, no arousal, long chaotic periods, and my mucous membrane is thin and fragile as parchment paper. Friction causes micro-tears and pain.

The gynecologists prescribed hormonal pills, but they didn’t treat the problem — they only masked it. I had monthly bleeding caused by the last pills in the pack, but that didn’t mean I had normal short periods. I should also emphasize that I have functional infertility — I already knew that. The very first gynecologist told me I don’t ovulate because my periods are so long. In effect, the lack of proper treatment worsened the dryness and mucosal atrophy.

It sounds painfully logical, damn it. I’m sure that’s exactly what’s going on. The AI outlined my next steps: weight gain, a detailed eating plan for gaining weight, exercises for treating vaginismus, which vitamins to take, and recommended an estriol vaginal cream.

So — I was a camp counselor two months ago, meaning only two months ago I gained a little weight (still far from the ideal 55–56 kg) and started treatment. Now, as I said, I weigh 50 kg. I finished a course of vitamins. I try to use the estriol cream, but unfortunately I often forget. I can feel it helps in the moment — after applying it, I get a rush of blood to the vulva, like. But not much has changed overall. I’d even say the only improvement is that I have a little more lubrication now. But my libido feels even lower. Before, I would at least get aroused occasionally from porn. Now, sex genuinely repulses me — porn too.

Honestly, sometimes I think that if it were up to me, I would never have sex. I just don’t need it. But for my husband’s sake, I want to get better as quickly as possible.

I forgot to mention: when I stopped taking birth control, I broke out in pimples all over my back and above my chest. I haven’t been able to get rid of them for about 4 months.

Now I don’t know what to do because progress has stalled. Inserting anything still hurts. I can’t gain weight at home. I’ve signed up for another camp session this summer because that’s where I gain weight successfully. I’ll try to reach 55 kg there. Worst case, I’ll drop to 53 kg, but that’s still progress. I have no other ideas.

I’m open to any questions. If anyone has experienced something similar, I’d be grateful for your advice.


r/vulvodynia 2h ago

vaginismus and marriage

1 Upvotes

Hi everyone, I have been married for two years and I feel like my husband is ready to give up on me. Our sex life isn’t the best and we attempt maybe twice a month at most. I’m not sure where to even start to get help, I have done hormonal bloodworks which came back with high prolactin and otherwise normal, I have tried dilators which make minute difference but now I feel like my libido is dissapearing. Considering just to let my husband go because I don’t know if I’ll ever be able to have a normal sex life.

Can anyone share how they cope within their relationships or marriages with vaginismus ? Have partners/husbands been supportive ?


r/vulvodynia 13h ago

Support/Advice Venlafaxine for vulvodynia: when did you notice improvement and at what dose?

6 Upvotes

Hi everyone,

I've had vulvodynia for several years. In the past, both nortriptyline and Deanxit helped significantly (at different times), but unfortunately they both eventually stopped working.

I'm now trying venlafaxine. I started it 3 weeks ago and reached 225 mg two days ago. So far, I haven't noticed any improvement in my pain.

For those of you who had success with venlafaxine:

  • How long did it take before you noticed improvement?
  • What dose were you taking when it started helping?
  • Was the improvement gradual or did it become noticeable all at once?

I also have two questions about next steps in case venlafaxine doesn't work:

  1. Has anyone responded to duloxetine after failing to respond to venlafaxine, despite both being SNRIs?
  2. Has anyone responded to amitriptyline after nortriptyline either didn't work or stopped working?

I'd really appreciate hearing your experiences. Thanks!


r/vulvodynia 7h ago

Frequent urge to urinate that improves during ovulation/fertile window. Anyone else?

1 Upvotes

Hi everyone,

I have a constant urge to urinate and increased urinary frequency, which has a big impact on my daily life. I don’t have constant pain—only provoked pain—but the urinary symptoms are there most of the time.

What’s interesting is that I consistently feel better during my fertile window/around ovulation, and then the symptoms worsen again afterward.

Has anyone else noticed urinary symptoms improving during ovulation? Did you ever find out if it was hormone-related or due to another condition?


r/vulvodynia 7h ago

How much does a vestibulectomy with Dr. Irwin Goldstein cost? (I'm not sure if I can afford it)

1 Upvotes

How much did your vestibulectomy with Dr. Irwin Goldstein cost without health insurance? The surgery itself + hospital stay + medication

(I'm not sure if I can afford it)


r/vulvodynia 9h ago

New diagnosis

1 Upvotes

Hello!
I’ve just been diagnosed with mild vulvodynia. I’ve been prescribed 2mg amitriptiline and lignocaine gel. I was wondering if people could share their experience with this combination and if such a low dose has ever been effective for anyone. I’m wary of the side effects so happy to start low. I’m also wondering if anyone experienced weight gain? I’m trying hard to lose weight at the moment so it’s going to be a little discouraging if that becomes harder!

Thankyou!


r/vulvodynia 11h ago

Maybe I should let him meet someone else since my body keeps letting me down NSFW

Thumbnail
1 Upvotes

r/vulvodynia 18h ago

Weekly progress check-in

1 Upvotes

A weekly thread to let us know how you're doing!

Feel free to share how you're feeling, how your treatment is going, or any questions that you might have about it. Anything that you're doing for the vulvodynia counts as treatment, whether it's making an appointment, seeing a specialist, self-care measures or anything else.


r/vulvodynia 1d ago

Scientists “recharge” damaged nerves to ease chronic pain

Thumbnail
sciencedaily.com
4 Upvotes

r/vulvodynia 2d ago

My Journey with Recurrent BV, Yeast, Ureaplasma, and CV

14 Upvotes

This post is going to address a wide variety of vaginal issues that I've experienced over the past 2 years. I wanted to write this for any women that going to gynecologists who minimize their symptoms and do not listen; women that know there is something wrong but have no one who listens. I hear you.

This all started a bit over 2 1/2 years ago. I remember having symptoms of a yeast infection, and I went to the drugstore to get some OTC miconazole cream to treat this suspected yeast infection. At this point, I had yeast infections prior, and knew that this was likely what was going on. I remember inserting this cream and it stung so bad. I read that this stinging was a side effect, something I found hard to believe because it was so uncomfortable. Either way, my symptoms didn't really resolve after this, and so I went to my school nurse who prescribed me oral antifungals. No test. I took these, but nothing.

Fast forward around 2-3 months later in May 2024, I got an ear infection and took antibiotics for this. On these antibiotics, I noticed my vaginal symptoms worsen, and over the course of this summer, my vaginal symptoms did not improve. When I came back to college, I went to the school nurse (again), who didn't test, and gave me advice about diet, water intake, sexual hygeine, etc. Of course, none of this helped. My symptoms did not improve.

Fast forward another two months in October 2024, my symptoms still had not subsided. I decided to finally go to a gynecologist. My appointment was with a nurse practitioner who, upon looking at my vagina, swabbed EXTERNALLY and sent the swab to the lab. Of course, the test results came back as nothing. The swab needed to be done INTERNALLY. Not knowing what I do now, I figured there was nothing I could really do about this so I tried to move on from my discomfort.

I decided to go to a different office in late November 2024, with a real gynecologist, who swabbed internally this time. My results came back as positive for BV and Yeast. I took metronidazole and fluconazole afterward (again). I remember that, for a few days, I actually felt normal. Until, I got a severe UTI 2 days after the fluconazole course ended. At 4:00 in the morning, I drove to the ER due to severe pain and did more swabs to see why it hurt so much. I did a wet prep and also tested for STDs, all were negative, though my wet prep did show a little bit of bacteria.

I went back to the gynecologist that prescribed me metronidazole and fluconazole, she swabbed me again and both were negative. But I was still experiencing symptoms. Along with my OCD, I started to become extremely defeated and helpless. I decided to go to another gynecologist, who tried to tell me to relax these "two muscles" at the base of the vaginal opening. I knew right then and there that he wouldn't help me. I asked about the weird discharge I was still experiencing and of course, nothing.

So, here was another semester of college that was plagued by vaginal discomfort. I kept doing research about my situation and ultimately came across two things that I had not yet tested for: Mycoplasma & Ureaplasma. I read that these were not included on standard STD panels, but that they could be causing the weird symptoms that I was experiencing. Despite going to several doctors, no one had brought this up ONCE.

By June 2025, I took myself to a LabCorp and ordered a Mycoplasma test for myself, it was negative. In July, I tested for Ureaplasma after emails with my doctor back home (I was staying at my college over this summer, as I had an internship). I urged him that my symptoms could be caused by this, and I think I knew deep down that this could be causing an imbalance in my microbiome, leading to recurrent BV and yeast.

Positive. I cried. I thought that after this treatment, my discomfort would finally subside. I was prescribed Azithromycin and Doxycicline (about a 3-week treatment), alongside with a heavy dose of fluconazole to take alongside it. After this three week period, my symptoms felt no better, but I figured my tissue was so chronically inflamed, that I would need to give it a few weeks, or possibly a few months to subside. At least, this was what I read.

By September 2025, it felt the same, and I was really alone in my journey at this point. I became depressed and constantly overwhelmed in my fight to solve my discomfort. I went to ANOTHER gynecologist, who tested me for everything (STDs, BV, Yeast (different strains), Ureaplasma, and Mycoplasma). All negative. According to him, I was all good. I understood that no doctors were helping me anymore, no one had the answers. I decided that I would just keep going, I had done all I could. Maybe my body just needed more time.

In October 2025, I went to visit my boyfriend who was studying abroad in London. My mental health was truly affected by my struggles, and I found it extremely difficult to let go and enjoy my trip, especially because I couldn't walk without discomfort. Despite this, I enjoyed my trip. Even though I was severely uncomfortable. December 2025, no improvement, but I felt helpless and again, maybe my body just needed more time.

My Spring semester of 2026 was when I started to feel truly hopeless. I had begun to obsessively check ChatGPT about my symptoms, constantly googling and reading on Reddit what could be wrong with me? Anyone may look at this from the outside and wonder this, but really, the medical community had failed me. I even had a gynecologist tell me at one point that my issue was that I wasn't staying with one gynecologist, and I wouldn't be able figure anything out if I kept hopping around (there's so much wrong with saying this, but I don't need to get into it).

I decided to see a urogynecologist. I had seen one the previous summer, but they did not help. They wanted to do a procedure in my bladder to check for interstitial cystitis, but I just knew this was not the problem. I knew my body, and I didn't want to waist time and money on a procedure that I knew would not help. The urogynecologist I saw in Spring 2026 may have been the worst doctor I had seen yet. I told her about my symptoms, showed her my test results from the past two years, to which she looked at and said, "these look great," despite me telling her about my discomfort. I had done an EVVY microbiome test which showed that I had essentially 0% disruptive bacteria, and according to her, this was the microbiome everyone should "strive for." She told me about interstitial cystitis, and I just sat there listening to her spiel. I knew more about it than her after all the research I had done. I had tried to stop drinking coffee, acidic foods, etc. She just told me I needed to do it for longer. I would have rather her said, "I don't know" than to give me a half-ass diagnosis.

In April, I went to another gynecologist. This time, I went to get my first pap smear. I still had symptoms, and told him about this. He suggested the same "diet" tirade I had heard countless times before, and also suggested a vinegar douche (wtf). I knew then I would not be going back to him. Alongside this, my pap smear came back as abnormal, I had LSIL. This sent me further down the pipeline of panic.

Upon my research of LSIL, I realized it was quite normal and that it would often subside on its own. It also would not typically cause symptoms like the ones I had. Eventually, I became less nervous about it and figured I would be ok. Still, my symptoms (burning with urination, externally white discharge, pelvic discomfort) were not subsiding. I called my gynecologist back home to prescribe me with internal hydrocortisone suppositories to see if this helped with internal inflammation. I had already tried external hydrocortisone, but this did nothing. I tried the internal suppositories for about a week and a half, and they did nothing. At this point, I feared nothing would work.

It was in Spring of 2026 that I also discovered what Cytolytic Vaginosis was. I read that it was a "controversial" diagnosis. I also had not been told what this was by any of the doctors I had seen, just like Ureaplasma. I looked back at my EVVY test, and noticed just how "good" my results were. With these results of a 100% protective score, I shouldn't be experiencing weird symptoms, right?

Wrong. I did a deep dive into Cytolytic Vaginosis, and read about how lactobacillus crispatus are often the dominant strain of lactobacillus to overgrow in this condition. With little microbiome diversity and a score of over 96% of these bacteria, I realized I was onto something. I had tried baking soda baths over the spring months, but they really did nothing. Over time, I realized I needed a more aggressive approach.

I spent weeks, if not months, debating if I should try the remedies I read about online for this suspected CV. If I tried them and they worked, I would finally feel relief. If I bit the bullet and they backfired, I would set myself back even further. I read tons on reddit and also companies like neuve, who published articles about CV. I wanted to know as much as I could before I tried either baking soda douches or suppositories.

I decided in May 2026 to try the douche. At this point, I had graduated college and moved into my new apartment. I'm sitting here in this apartment now. This douche slightly improved my symptoms – I finally peed once and it didn't burn. But surely, the symptoms quickly came back the next day. Maybe I needed more.

About 3 days ago now, I got some gelatin capsules and put about a tic-tac sized amount of baking soda in them. I was terrified that this would lead to BV or yeast, but honestly, I decided that it really couldn't get worse than what I was experiencing. I inserted the suppository, and the next morning, I already felt better. Did I finally find the cure?

I'm sitting here now, about 3 days into the suppository, and I do feel better. I think I actually found something that is helping. I'm going to keep monitoring my symptoms and may do another suppository if I think it is necessary. It is hard for me to believe that I may actually be done with this. If I finally am, I'll be greatful to move on from these struggles.

For the first time in a long time, I feel like I'm moving in the right direction. I don't know yet whether Cytolytic Vaginosis is certainly the answer, but after years of discomfort and dead ends, this is the first intervention that has noticeably improved my symptoms.

For anyone who may be going through something similiar, my story is just one of many to show that you are truly not alone in your struggles. My experience shows that doctors are often ill-informed and terrible advocates for their patients. These "experts" are often not experts. They are operating on limited knowledge, outdated assumptions, and, at times, a reluctance to listen when a patient knows something is wrong.

Too often, women are dismissed, misdiagnosed, or told their symptoms are impossible simply because their condition falls outside of what a provider has personally encountered. I spent years searching for answers, questioning myself, and feeling unheard. What ultimately helped me was trusting my own observations, continuing to ask questions, and refusing to accept inadequate explanations.

Women, trust your intuition, do your own research, and do not accept doctors who treat you as though you know nothing. Throughout medical history, women's pain, symptoms, and concerns have too often been dismissed, minimized, or misattributed. Sexism in medicine has left a lasting legacy that continues to affect how some women are heard and treated. You know your body better than anyone else, and you deserve healthcare providers who listen, take your concerns seriously, and work with you as a partner in your care.


r/vulvodynia 2d ago

Stinging at the end of my period

2 Upvotes

What is the burning and stinging from at the end of a period?


r/vulvodynia 2d ago

Does this sound like vulvodynia or something else?

1 Upvotes

I’ve been experiencing burning in my vulva for a month now. My initial symptoms were pretty bad, felt like I had UTI but didn’t have one. The doctor thought I had a bacterial infection so they prescribe antibiotics and that didn’t work so then they prescribed yeast infection medication and that didn’t work. I would say my symptoms have improved as far as the UTI symptoms are no longer there for the most part but now I’m stuck with a mild lingering burning and stinging throughout the day. It doesn’t interfere with my daily activities because it’s not excruciating and it’s pretty tolerable. It’s just very annoying. Sex is not painful unless we go rough and there is friction on the right side of my labia minora. I examine myself in the mirror and I saw a little lump. I’m not really sure if it’s inflammation, but it’s raised, puffy and translucent near my labia minora and I did a q tip test and that is where the majority of the burning is coming from. Do I have vulvodynia?


r/vulvodynia 2d ago

Support/Advice 6.5yrs main symptom vulvar burning, skin issue but can't figure out what's the cause? Advice needed

4 Upvotes

Hello to everyone here!

I’ve been dealing with this for 6.5 years and I’m honestly at my wit’s end. I’m hoping someone here might have a suggestion or has been through something similar, because the doctors I’ve seen are just as confused as I am.

TL;DR I have a skin issue on my vulva, only redness is visible, I feel constant burning and other symptoms, any kind of lichen and eczema ruled out as well as hormonal issues and all STDs, UTIs and candida. Need advice on what to test next and what could it possibly be???

Now the longer version with all the details u need!

My symptoms: Burning: This has been there from the start
Itching: Started about 1.5 years ago, happens out of nowhere usually
Pain: Sex is painful
Burning: Burns when I pee every single time, sometimes burns out of nowhere, any kind of trigger will cause burning(I will list it below)
Raw/sore feeling: Sometimes it feels raw, almost like I’ve wiped myself with a nail file. I only dab with my toilet paper but it doesn't really make a difference.

My main triggers: Anything touching the skin is an issue. I can’t wear tight clothes or underwear at all. Sitting, especially on hard surfaces causes burning (a donut pillow is a lifesaver). Sweating, exercising, going to the pool, or just tap water (I think the chlorine in my city’s water is too harsh) make it worse. PMS also flares everything up significantly. Stimulation is also a trigger, but two years ago it was possible, it’s gotten worse now and it’s literally impossible to have it. When in an active flare burning will last for 8+ hours sometimes.

The only visible sign is redness. Everything else looks completely normal. The redness is always around the clitoral hood—above it and on the sides, never on the inner lips. Because of this, it feels more like a skin issue rather than a typical gynecological one.

Medical history & what I’ve tried: My symptoms follow the pattern of Lichen Sclerosus (LS) perfectly, but the skin looks too "normal" (though I know atypical cases exist). I had a biopsy done, but it only showed "deep infiltrated inflammation" without confirming LS or anything else.

I’ve seen so many specialists, and everyone agrees it’s a skin problem but can't name it. I’ve tried pregabalin, amitriptyline, laser therapy, physical therapy, and countless ointments. Will not bother u with all that information bcs it's too fucking long haha.

The only thing that ever gave me real relief was a specific routine: 3 weeks of corticosteroids followed by 1.5 months of tacrolimus. By the last week, I had a HUGE improvement—for the first time in 6.5 years, there was no redness. But then, I had to stop everything for two weeks for the biopsy, and the symptoms just came right back. From natural and protective ointments aquaphor has been a life saver, CBD balsam, sage tea and St. John's wort oil.

What I’ve ruled out:

Blood work (done many times), hormones, STDs, UTIs, candida, ureaplasma – all negative.
Doctors don’t think it’s eczema, any kind of lichen, or an allergy (though I’m planning to get allergy testing done in the fall). I’m planning to check for insulin resistance soon.

I know I have other treatments yet to try, but I want to find out what the fuck is causing all this? I want to find the root problem, not just treat the symptoms with dangerous drugs... I’m exhausted and I don’t know what else to test for. Does anyone have any ideas? What could this possibly be? Any advice on what to look into or ask my doctor about would be highly appreciated!!


r/vulvodynia 2d ago

Neuralgia genitofemoral e iliacoinguinal

Thumbnail
1 Upvotes

r/vulvodynia 2d ago

Vibrators

3 Upvotes

Hi! I wanted to ask anyone here with vestibulodynia or vestibular pain or simelar what are your experiences from external vibrators on the vulva? How does it feel for you?


r/vulvodynia 2d ago

Does anyone need info from the Goldstein et al. medical textbook "Female Sexual Pain Disorders"?

9 Upvotes

I now have the medical textbook by Goldstein et al. I had been wanting to get my hands on this for a while, since it gets a lot more detailed than their paperback When Sex Hurts.

For example, I have been curious about the role of ketamine in the amitriptyline-ketamine topical used for neuroproliferative vestibulodynia. (I thought perhaps it was just used to help with the initial burning pain upon application, but it sounds like it's not.) The book mentions that "in a non-controlled study for pelvic pain in both men and women, when [amitriptyline is] combined with ketamine, the results in terms for both tolerability and perceived pain reduction were promising". This doesn't give all the answers, but it was still helpful for me.

Does anyone have any deeper things they would like more information on? This is intended to be kind of nerdy and in-depth, and likely not as helpful for more surface level diagnosis questions.


r/vulvodynia 2d ago

Support/Advice Vestibulectomy recovery questions

3 Upvotes

For those of you who have had a vestibulectomy, how long until you were able to walk around, and when were you allowed to start exercising?

Do you have any advice to prepare for recovery mentally?

I’m having the surgery next month and I’m not particularly worried about pain, but I’m starting to feel pretty freaked out about being on bed rest for a bit (some people said 1-2 weeks?) and not being able to exercise for 6 weeks or more. Exercise is a huge part of my life, I bike to school, I climb, I lift weights, and I am anxious about the fact that I won’t be able to do any of that for a while. Not to mention not being able to get out and see people for a bit. Im nervous about losing my strength, and I’m nervous for my overall mental health.

Any advice, stories from surgeries, or even just ideas for staying sane during bed rest are much appreciated!!


r/vulvodynia 3d ago

chronic vulvo-vaginal candidiasis (cvvc)

3 Upvotes

If u search up candida biofilm, there's a plethora of evidence that candida can embed the way bacteria can. This means a candida infection that once tested positive can start evading testing just like a uti can. I think vulvodynia is an umbrella label that represents outdated medical opinions on womens' bodies that allows so-called professionals to gaslight women with anti depressants.​

There's a woman who made a website about this called chronicyeast.com


r/vulvodynia 3d ago

Vent Provoked vestibulodynia + mental block

3 Upvotes

After a couple years of painful sex since giving birth and months of sex therapy and pelvic floor therapy, I got diagnosed with provoked vestibulodynia today and just needed a place to come to because I have never heard of this before and I had spent so long being so utterly confused and scared about what could possibly be going on with me.

In a way I'm relieved to finally be putting a name to what's happening, and reading through these posts have been helpful and inspiring, but I have another problem that I just need to get off my chest and also see if anyone else can relate to.

I was prescribed a testosterone/estrogen cream to apply to the area and told to clean really well because she observed some build up. But for whatever reason, for as long as I can remember, I have this huge fear of touching myself down there- which is probably why there is build up. I was never taught how to properly clean there so this combined with the horrible feeling that comes with touching there is probably why there's build up in the first place. So I'm feeling really fearful about using this cream, and at the same time I know it's something I need to do because I want to be able to return to intimacy with my partner and face this anxiety that is holding me back mentally and physically.

So yeah, just feeling a lot of shame, embarrassment, and fear right now, but also some relief that I'm finally getting some answers and pride that I've been able to work on so many things in pelvic floor therapy that I was terrified of before.

Just needed somewhere to get this all out. I would love to know if anyone can relate to these feelings because I feel so pathetic that I'm a grown woman and feel so much anxiety and shame around my vagina that I can't even touch it.


r/vulvodynia 3d ago

Support/Advice Stopping birth control?

3 Upvotes

Hello everyone!
My provider suggested stopping birth control. I have had this suggested before but I am terrified because I have very heavy periods and the birth control keeps it from becoming too much.. Does anyone think it's a good idea to stop and try it out? Do I go back on if I feel like i'm bleeding too much? Any advice is appreciated i'm just not really sure what to do about it. Edited to add my complaint is not pain, the main problem is vulvar itching. thank you!


r/vulvodynia 3d ago

Clitoral adhesion recovery stories?

1 Upvotes

Hi, so I’ve been diagnosed with clitoral adhesions which cause me pain and I’m just wanting to hear some success stories of people who recovered or got a lot better so I can get into a positive mood lol.


r/vulvodynia 3d ago

Chronic YI or vulvodynia?

2 Upvotes

22 F

FIRST EVER yeast infection. Itching and urgency never subsided. Fluconazole didn't touch symptoms. External swab was positive. Been testing neg on internal swabs. Flares into burning over period, hot weather, running, sexual activity. Varies hour by hour. Itch dominant. Sometimes stabbing pain. Nocturia and frequency. Is this a yeast infection that embedded and so never cleared up or a nerve condition?!???


r/vulvodynia 3d ago

Support/Advice UTI symptoms

2 Upvotes

I am not new to this game, but in the last six months my symptoms were pretty mild. Unfortunately last week I had a flare episode that I still can’t get rid of. Basically I have typical UTI symptoms - deep burning in the urethra and frequent urination, and a feeling of “heaviness” into my urethra (from the burning somehow?). Usually in the past when I had the same issue, I could quickly “bounce back” with a mix of concentrated d-mannose, a lot of water and 5-7 days of boric acid but this time it’s already the 5th day and I am not seeing improvement. I have a very busy schedule (university, final project basically) and I can’t really travel to see a doctor until well into July. Do you have tips what else I can try? I have estriol cream but so far I’ve only been using it on the skin and not inside, and I’m not sure if it will be beneficial. Other than that, I have no idea what else to try.


r/vulvodynia 4d ago

Burning after yeast infection

7 Upvotes

I really need help and some understanding regarding my situation. I first got a yeast infection in January (treated with clotrimazole), and then later got another infection (cloteimazole again) and then I was diagnosed with Gardnerella. I was treated for that (I didn’t have a yeast infection at that time, mostly burning and irritation), but on the treatment I developed a severe yeast infection. This time, Canesten didn’t work, and even a single dose of fluconazole didn’t help.

Later, after using a vaginal suppository and taking another fluconazole pill, I tested positive for a yeast infection again. I then completed a fluconazole treatment on days 1, 3, and 7. Right now, I don’t really have the typical discharge that usually comes with a yeast infection, but I still experience intense burning and irritation every day. I feel like I’m going crazy. Sex is painful, and I can’t stop thinking about it all the time. It’s making me really depressed, especially because I’m constantly dealing with burning and pain in such an intimate area every single day.


r/vulvodynia 3d ago

E-String Removal Odour?

Thumbnail
1 Upvotes