So I'm not from the US I just recently moved. I've undergone so many gynos and dermatologists for my chronic itching problem some of them were horrible they just pumped me with yeast medicine etc creams that don't work I tried over 20 creams on my skin. Last dermatologist who I went to seemed to listen to me and he told me he thinks it's on a mental basis where he says at some point I could have had an itch but my overthinking and stress I created about it everyday caused it to be chronic and I can't get out of that loop. He gave me one cream and told me if that doesn't work to contact him to try The pills..? I know my country isint well educated on "newer " diseases like this but could have he been talking about Vulvodynia? Idk I'm so miserable I just want help

I've had this chronic itch for 3 years now. I've done multiple skin,blood,swab allergy tests I even went to dermatologists who told me I have no immune disease or skin type of chronic illnesses. I am not positive for stds or Stis But my skin always itches especially during and after my period. My vulva is always itchy but recently it got super irritated. I get like this cottagey substance almost every other day when I pull my clitoris back like under my clitorial hood. And I do clean it but it hurts to touch. A couple of days ago I took a cotton swab and cleaned my clitoris with with hazel (non alcoholic) and now my clitoris and whole vulva is so itchy and swollen. Idk what to do do I have a yeast infection? My smell and discharge is normal? How do I even know what to tell the doctors cause I'm sick of them telling me I'm okay and stuff

Anyone else experience this? It’s super embarrassing and gross yet apparently solo self pleasure actually helps relieve the burning pain. I tried again last night for the first time in over a year and the burning today is less than it has been all week even with a lubricant that contained glycerin (menopause specific brand).

I can honestly say it was the best night of sleep all week. I want to keep doing this but this issue is getting in the way. I’m trying to figure out if it’s due to vestiblodynia or something else. And I have seen several specialists- urologists, urogynecologist, etc.

hello, who among you the physiotherapist really helped I have an appointment on December 4 and I am desperate I have pain, tingling and itching... since January for 1 month I have been diagnosed with vulvodynia. I don't know what to do if physiotherapy doesn't work.

Hey, before going for lysis (I’m scared they’ll irritate my nerves even more)

Can I safely attempt to deal with it at home? I get sharp pain in my clit and I see a keratin pearl stuck in my left side. I was able to remove the right one but the left one is stuck pretty bad

I have a steroid cream at home from the times I though I had Lichen, can I try to out it on my clit?

I have an appointment in a few days for vaginal botox since the gynecologist told me that my pain could be caused by unconscious muscle spasms that create a contracture in my vagina. He also told me that it is not a magic solution and that I also need to do physiotherapy and psychotherapy, which I already do.

I want to hear about your experiences and advice. I have had this condition since I was 16 (10 years almost).

Hello all. Im honestly super nervous but here goes.

11 days of burning, fullness, stinging and just a weird feeling around my vagina. The pressure feels like it’s inside. I do kinda have a change in my discharge. But not consistent everyday.

Now the reason why I’m nervous is bc I’m fixated on the thought that it could be herpes. But I went to the er and have no sores. I literally look every single day and no sores. STDs all negative. I did have a new sex partner so hence the reason I’m freaking out.

I came across this group and the symptoms seem to match so idk. I just need some hope 🥺 waiting to see a gyn for next week.

Thank you for reading!

I was feeling pretty good today. I did have some itching earlier this morning but took a shower and it helped but right after my husband went down, and we had sex my vulva burns again. I am super dry but why would it be my vulva and not inside my vagina . Anything I could do to help it calm down. I did shower asap!

I'm sorry, guys,

When I asked everyone to message me, I was trying to avoid like... "bothering people" HAHAHAHA

Here is the book -

https://docs.google.com/document/d/1wpT3HJoDJYZnKlmXRf6Bl_dPljzxnhzc05csgYK8Hhs/edit?tab=t.0

Please let me know if it opens / works. I might have to give you "viewership" :D

I hope this helps everyone!!!

Started 9 months ago. Saw a specialist 6 months in. They put me on gabapentin which i wanted to believe worked but didn't - up to 2100mg/day+cream. A pudendal nerve block failed.

I've been doing PFT for 3 months with no progress. 2 months ago my pain increases.

Itching started. Itching was 1x week now 2x week. It can be so intense that scratching makes it worse.

Im waiting 3 weeks now for a doc at the specialist to talk to me about Cymbalta which is their next try.

I can't try anymore. I can't wait. I'm not ok. This isn't ok. I'm a mess and I'm so, so sick of doctors saying they'll figure it out and don't.

I've been to a dermatologist and ruled out lichen as well. I'm in the middle of a steroid creams that maybe helps a little with Itching but it's 2 weeks max.

Guys what do i do??? Do I find more doctors??? I'm just at a loss and being so proactive.

hey, I've had vulvodynia for over a year know and it also affects my urethra and bladder.

My last few weeks were very good and then I flew, which triggered a flare. It always starts with my vulva starting to hurt and then a couple days later my urethra. I can deal with the vulva pain to some extent with cold or heat, but I'm so desperate about my urethra that I just don't know what to do anymore. Does anyone else have the same problem with the urethra? Do you have any tips?

i have always had muted orgasms and after looking into a lot of websites i got to know about this condition. id like to know if i do have it or the reason for my muted orgasms is smth else entirely

I just read 3 previous posts about CV on Reddit and each post owner ended up not having CV but having doubts about it and the discussion kind of shifted towards their unrelated root of the problem.

Therefore I want to use this post as a reference point for treatment options that helped people.

Firstly, my story with Cyclic Vulvovaginitis is that, it started with me being diagnosed in 2019(19 years old) with PCOS.

After my diagnosis I changed birthcontrol for about 3 years, 6 years of use, off period for (6-9 months max).

I also have PMDD(during “luteal” phase, I deal with severe mood swings, suicidal ideating ect.) However My story with CV started about a year or two ago, when I changed my birthcontrol (it was combined oral pill and not progestine only) which progestine only is known to be making CV worse.

My symptoms include monthly (cycling) itchiness, dryness, pain during sex and peeing and extreme uncomfortable sensation about 4-5 days before my period. (During “luteal phase”)

I went to the doctors 4-5 times. My first doctor took it very seriously and I had to give 3 swaps during the itchy period to get prescribed and diagnosed with it. I was positive the first 2 swipes however I had personal problems which made it not possible for me to complete the last swap.

After a year, after my symptoms worsened, I decided to go to the Doctor again, in which this time I am given my last swap. I will be handing it either today or tomorrow since my Luteal phase (aka. Symptomatic period) started with itching and pain. I would get my results within 2 weeks, and therefore an action plan. (Possibly a local yeast cream to apply every month, or an oral pill.)

She also changed my birthcontrol to another one (where it is still combined, but the progestin is less interfering~ I think). I will be able to give feedback upon that only in a month.

NATURAL REMEDIES & Recommendations and Considerations

1-Bicarbonate

Many CV patients talk about the relieving effects of applying Bicarbonate during itchiness or Bicarbonate douching.

I personally had relieving effect the first time, however on the second day of applying, it burned my vagina so badly that I doubt that I will dare to do it again. Perhaps it was too much and not dilated enough. So definitely if I try again I will try again with dilating it with water.

I think the working mechanism is that our PH levels are disrupted and our vagina gets too acidic basically, where bucarbonate brings that ph above.

My mom also suggested that she increased her urine ph by drinking bicarbonate daily (1tbsp in 2lt water). I am planning to try this. Will update both measurements here.

2- I have also noticed that my symptoms gets aggravated when I consume more sugar that month (not 100% about this, but I have a strong feeling) and sugar/carbs are known to be feeding yeast bacteria.

I am planning to cut out carbs/sugar for a month and observe my symptoms for the following month.

3-change of birthcontrol, supervised by my Doctor/ Not progestine only and a more suitable Combined Oral pill for CV/yeast infections. Will definitely update here for all.

Feel free to share your story and other treatments that helped you. This is a painful and frustrating time for anyone dealing with CV, or any other chronic pain. I hope this post can give some relief or hope in the sense that at least we are not alone in this. Sending you all the biggest hug and wishing a healing future for us all ✨🫂

This is just a rant for me to let off some steam. Honestly I know we all struggle and idk if this is constructive but I just need to write about it and maybe be heard by people that know and can relate.

I had to take amoxicillin for ten days for strep recently and I cried when the Dr. told me I needed it knowing how much it was going to ruin my vagina. I worked so hard earlier this year going through months of a bad flare up that lead to cycles of bv and yeast and cv and just pain with no results trying everything under the sun. I finally got back to normal and was okay - idk which thing worked but I was good again for a few months!

I could only bare 8/10 days of the pills. After these meds I’m right back where I was earlier this year with my vagina pain and in knew it was going to happen as I was swallowing these hell pills. I made them give me diflucan to take while I was in them and I did two rounds that did absolutely nothing. My vagina is screaming, my skin is peeling off and I’m falling back into vulvodynia depression. Now it’s back to the gyno for more appointments.

Antibiotics are becoming my worst fear. Every type of antibiotic gives me a yeast infection that triggers flare ups of infections or pain that put me through the worst hell taking me so much time and drs visits to see the light of day. I feel like I will need to be in a borderline life or death situation to agree to ever take them again if I’m ever in another months long streak of normalcy (I have had bad flare ups on and off for 5 years now), next time I get sick I’m just going to quarantine myself and hope that I can heal naturally. Anyone else in the “I can’t take antibiotics” boat?

hi all, wanted to share a 3 month update since stopping combined oral BC to help with my hormonally mediated vestibulodynia

Month 2: I started using the estradiol cream daily again instead of 2-3x a week since stopping BC and that got rid of most of my irritation/itchiness again! if i skipped ~2 days of the cream the irritation would return, especially since I was spotting constantly and wearing liners 24/7

I got my first natural period 35 days after my initial withdrawal bleed, it lasted 7 days and was normal with ~3 days of normal bleeding and ~4 days of lighter spotting. I had 4 days of no bleeding after and then I started spotting nonstop. I have also had sex once during this time and it caused a slight falreup in the day or two after but was much more manageable compared to when I was at my worst on birth control.

My hair continued to fall out A LOT in the shower and was really greasy through month 2. My skin isn't as greasy as the first month post-BC and my acne actually cleared up a lot (I would get cystic acne on birth control)

Month 3: I finally stopped spotting after 49 days! I did not get a real second natural period though after the first one. My spotting got heavier for a week and was what i assume to be some sort of "period"? My doctor thinks my cycle isn't regulating because I'm underweight and didn't have regular periods before starting BC. I've also been able to have sex more frequently and noticed how different it really is now after being off BC for three months! It's crazy how much the body naturally lubricates lol, and so far I've stopped using the estradiol cream this month and haven't had any issues so far. No flareups after :)

My hair continues to fall out more than on birth control, but it seems to be slowing down. My skin continues to be clear with no cystic acne, seems to be returning to what I had before BC with 2-3 whiteheads at its worst, but they quickly pop and heal with proper treatment. Hoping this continues and that I will escape dreaded post-BC acne.

Thank you for reading! If anyone is considering getting off BC, I just wanna say that it may suck for a while, but I don't regret it! I'll take having to deal with my irregular cycles over the monthly pain/irritation.

EDIT: spoke too soon about the acne...literally just developed a massive cyst on my chin within hours of posting this lol

My burning started after a uti and antibiotics. I burn all the time and especially after urination for an hour. This has been 2 years. It was worse on birth control and I constantly got yeast. I went off of birth control now but I got my hormones tested and I had 0 estrogen and 0 testosterone but I’m sure it’s because or the birth control. I got div at one point then been dealing with yeast and av bacteria and I’m only 34 years old. Can hormone cream help?

Hello everyone, I'm on the path of healing for over 10 years

I'd like to share my history and see if anyone has any other advice cause doctors literally don't want to help me anymore. Medicines or therapies taken wil be written in Bold text for easier reading.

It all started when I was 17, I had my first intercourse and had a pain that didn't go away.

When I told my mother about it we went to a doctor that told me i had vaginismus, he send me to a physio-therapist that basically just put 2 fingers in me and did breathing-stretching/kegel exercises.

That helped a bit to have intercourse but the moment I'd stop having intercourse for 1,5 week it came back and as my first few relationships progressed I noticed I couldn't handle a bit more well endowed men or toys.

2 years in I started to have burning out of the blue and after urinating, they alway treated me for UTI's until they found out i had provoked local vulvodynia.

Gyneacolosist told me to take Cymbalta, I took it 2 months and had to quit cause it made my thyroid stop working and i gained 60 lbs in those 2 months (I was very physical active my whole life but that didn't help to slow the weight gain and thyroxine hormones didn't help neither)

Then they basically said to suck it up.

After 2 years I couldn't handle it anymore and I got local estrogen, Blissel 50 mcg for 4 weeks from a gyno but I was only 25 so way too young to keep getting it, they said. Even though that worked, so being send back and forth I got to a professor who said i had global vestibular vulvodynia gave me gabapentin 2%

I kept going back saying that it doesn't help, I've been on it for 4 years now. 2-3 times a day.

They once said aroud 27 years old that I'm pretty dry inside and they told me to use Mucogyne (hyluronic acid) once in a while

When I say it hurts they just say to use one of the following ointments:

• Deumavan (parrafin, petroleum jelly based)
• Bepanthen Baby (diaper rash cream with no zinc)
• Cicaplast B5 (for dry skin)
• Zinc diaper rash creams in summer (sweat is a pain trigger too and that dries it out)

On good days my pain is a 3 it hurts after drying myself or after having intercourse on bad days it a strong 9 where I just wish I was a man on those days nothing helps, I have to lay in bed legs spread wide open. I cant even cook or take care of myself.

I see different doctors like every 6 months and they just STD test me, turns negative and say "keep using Gabapentin, see you in 1 year"

Really struggling to get anywhere with testosterone gel. And hearing so many people say it's what helped them is frustrating me more. I'm in England and all the specialists seem to be in the US. I keep getting told I'm too young at 28, and apparently vestibulidynia and years of irregular periods "isn't enough to warrant hormone tests" on the nhs. At this point I am honestly asking if anyone on here can sell me theirs!?!

I have been feeling pressure right in the entrance on the left side. What could it be. I am still super dry. I have been on estrodiol cream for a few weeks now.

For myself, I used olive oil rubbed in for about 20 minutes to help soften the adhesion. May be beneficial to go longer with this step. Then I just pulled it apart with my fingers because I found it is what works best. Probably the most painful thing I’ve ever done in my life. I’m not kidding, I started disassociating and getting sweats. Once you stop pulling, it stops hurting. 3 seconds of pulling feels like 20 seconds.

It took an hour to do one side of my clit and was too painful to do the other. Then after the one side healed enough after a few days (read a few sentences down to see how I helped it to heal) i finished the other side. It was over and the healing continued. I knew it was over because at one point I couldn’t pull anymore and started exposing bright white keratin pearls. I rubbed A&D ointment in the area with a clean nail dotting tool, never used with nail polish, to prevent re-adhesion. I used this in between the hood and the clit, which is also painful as it’s healing. You have to get it deep in, and it won’t feel good.

After it healed, I’ve been sensitive like never before and pain free. I am also taking a huge risk by doing this. This is certainly a “do at your own risk” endeavor. My adhesion covered 70% of my clit and constantly threatens to re-adhere, so i daily or every other day have to take the clean tool with ointment and lubricate between my hood and clit. Still, life is better. I never realized how painful everything was until after it wasn’t painful anymore.

Comments with only the intention to criticize or with the intention to make me feel small/less than because this would never have worked for someone else wont be appreciated. This is what I did personally.

This is what worked for me and may either harm or help someone else. One should do this at their own risk and shouldn’t trust their health to a comment on Reddit if they don’t feel comfortable doing so.

Pros:

-No pain when walking or sitting. No pain during sex/masterbation. Quite frankly no pain at all AFTER healing is complete.

-I can orgasm more easily (couldn’t orgasm from oral, now I can orgasm in 2 minutes or less from it) and when I do it feels like the scene in ratatouille where he eats the cheese (look it up on YouTube).

-I used to have a large problem with getting wet. Because of increased sensation, I don’t have that problem anymore.

-no scarring

-no doctors

-maintains privacy

-cheap (can buy these supplies for less than $25 altogether on Amazon/ at the store)

-sexual relationship with myself and my spouse has completely changed

Cons:

-mind numbingly painful when pulling it apart. Do not take it lightly when I say the pain is brutal

-many people may not be able to get through the pain of the procedure and may benefit instead from seeing a doctor who can use numbing cream

-temporarily mentally, physically, and emotionally drains you while pulling apart

-healing takes incredible care, dedication, and attention to detail

-cant miss a single day of ointment twice a day or it will re-adhere (i had to do this procedure twice because I missed a day)

-healing takes about 2-3 weeks, so no sex or exercise during that time

-possible risk of infection if uncared for

-possible risk of even worse adhesion/possible fusion happening if uncared for after or miss ointment in the early days of healing (whatever one does, they should never miss a day in the first week because of possibility of this happening)

What you should expect:

The clit will be bright red where it has been pulled apart. As long as one takes care of it, there will likely be no scarring or permanent effects and it will heal. I don’t guarantee anything, but that was my experience. I even have pictures. Not sure if I want to share them, but I may choose to.

This is scary. It will feel like the pain couldn’t possibly be healed from. It can, and it will heal. Faster than you think, even. Don’t become discouraged and keep getting in deep with the ointment. You will know what I mean.

If one doesn’t feel comfortable doing any of this, GO TO THE DOCTOR. One should not try this if they are not 100% willing to accept the risks. Self assessment of their own condition is the most important thing as one proceeds. They cant be blinded by desire to get better or anything else which may push them to hurt themselves.

Assess yourself accurately, objectively, and unemotionally. If you need a doctor, use a doctor. If one needs to stop, they should stop. Don’t push through something that shouldn’t be pushed through or if it just seems way off.

Listen to yourself and plan for ample time alone to do this.

After the procedure is complete:

-Do not miss a single day of ointment

-Do not take a bath, swim in public pools, or go in hot tubs (infection risk)

-keep exercise light, or better yet plan for no exercise for two weeks

-commit to aftercare for months after this is done, you will always have to fight to keep it from reoccurring. This is still 100% better than having an adhesion although a bit annoying

-see a doctor if anything feels off at any point or you realize you are in over your head (this includes before even starting)

I’m willing to answer any questions if I can. I cannot be held responsible for what someone else does, but I will try my best to help/clarify.

Edit: trying to make the formatting how it was originally intended to be to avoid missing anything, and added to the part about orgasm. Also, I would like to add that the hood may swell and is to be expected. It goes away after a day or two and ibuprofen helps with this.

Hello everyone, I really didn't know if I should continue posting here because several people have reported me as spam and it discouraged me quite a bit, but anyway I just came to ask if any of you Estrogen gel caused them candidiasis. They continued using it despite that or changed estrogen and were so kind as to clarify my doubts. P.D:I'm not spam, I'm a person who is dealing with this terrible disease who is only looking for support and advice. Please, if you don't like that I post often, just don't read it, but don't report me as spam.

So f'd off with the system. I've tried everything you can think, except HRT creams. I'm 28. Everytime I ask for testosterone or estrogen or both I get met with NHS guidelines, private pharmacy guidelines, to come back when I'm menopausal - so I just wait another 30 years?! I have literally taken research papers from Goldstein to my GP and still get the same answer. I am so stuck. I genuinely don't know how to get a hold of any HRT here in England. Any advice or pharmacies or private clinics that do this for people my age would be great. I have an appointment with Tania Adib next week in London but am scared I get told the same.

I'd gotten to a point where my (muscular/nerve) pain level was at a 1 for almost a full week straight, minus what I thought was a UTI and was put on antibiotics for.

Turns out I don't have a UTI, so the new vaginal burning is either aerobic vaginitis, more pelvic floor issues, or a yeast infection. Joy!

My pain level is back up to somewhere between a 6 and an 8.

I'm supposed to finally fucking move next weekend after having to postpone it due to the pain.

This isn't fair.

I get these at least once a week that lasts 2 days usually. I can't pinpoint any specific triggers. But it's manic itching where scratching doesn't make it better

I've tried everything and just really don't want this during the holidays.

Advice?

Hey!

I need some advice, I have left sided PN and during my exam with my gyno he told me my clit is 50% phimosis and he saw keratin pearls. He said if I’m not in pain there is no need to release it but I think I’m now in pain, I’m not sure what keratin pearls and partial adhesion feels like and if it’s this and not like my PN acting up but other then lysis, can I do something at home?

In the past years I was able to remove the pearls myself but this time on the left side it’s stuck and I can’t get it out.. I think it causes my clit sensitivity and pain

P.S I don’t have LS

So… I’ve been doin this for years but now it hurts. My clit grew quite a bit during puberty and it does stick out a quite a bit. Like an inch and a half - 2 inches. To feel pleasure I’ve been laying prone and applying pressure with a vibe. I realized I’ve been literally pressing my clit fully down for some time. It’s never hurt before but now it does and my clit shrank a bit.. am I fucked ? Will it come back after awhile?

I have pelvic floor dysfunction and vaginismus but I don’t know if this contributes to it. I don’t see why it would. I have no vaginal infections. All clear but experiencing that burning sensation after a bowel movement and anus burning.

Hi all, I wanted to come back here and share an update on my journey with vulvodynia. I posted about a year ago here: https://www.reddit.com/r/vulvodynia/comments/17h2ciu/success_story_with_amitryptaline/ detailing my success with amitriptyline. Fast forward to now, over the past year I have had multiple discussions with my vaginal pain doc about coming off of amitripyline because I definitely did not want to be on it forever. Frankly I was terrified to come off of it and have the pain again, but I knew I had to try at some point and started dating a partner who was super supportive and encouraging. I slowly starting coming off the amitriptyline 10mg at a time every week starting at 86 mg. It took about 6 weeks to fully come off. It wasn't super smooth, I definitely felt more pain, especially the week I got fully off the medication. But I gave it some time and have been off of it fully for over a month now and I feel amazing! I am not 100% pain free but would say 90-95%, and the pain i feel has been more uncomfortableness when I do something triggering, like wear a bathing suit for too long. But in general, I am feeling great and I can't believe I am feeling so much better without the amitriptyline. My doctor said I can take 10mg if I have any flare ups but I haven't had to do that yet.

So I am here to say there is hope, it's a journey but I feel so so so much better. Obviously everyone is different but I wanted to share there is a light at the end of this very dark tunnel. Sending everyone here love and healing!