I saw a post on here mentioning toilet paper was causing their itching and pain, so I decided to give it a shot and ditch my Kirkland toilet paper. Like many of you, I’ve been dealing with itching/pain for years, brushed off by dozens of doctors, and have tried literally ANYTHING suggested to me so I really didn’t think this was going to make a big difference. When I tell you I was so so so wrong!!

The next day after reading that post I got a bidet, and literally within 24 hours 80% of my itchiness was gone, then 100% after a few days. I tried having sex a week later, and where I usually feel itching, burning, rawness etc, it felt almost completely normal (besides the muscle tightness from years of expected pain).

Since then I've only felt the faintest bit of itching right before my period (nothing close to what it was before, but still seems to be some sort of hormonal symptom) but besides that, my usual constant itching is completely gone! A few weeks after using no toilet paper, I used a public bathroom where I didn’t have access to the sink to use water, so I used their toilet paper and was super itchy the rest of the day. Since then, I carry Water Wipes with me when I'm out/traveling and haven't had any irritation with those either. If you haven't tried it, try ditching toilet paper for a bit and see if it helps!

Just for some additional info that might help someone - A few years ago l went to a dermatologist that specializes in vulvar conditions and she saw nothing wrong, so the toilet paper wasn't showing any physical irritation or skin issues.

I just had to share this info in hopes it helps at least one person. I switched to cotton undies, I stopped using tampons, I changed my soaps etc, but never in a million years did I think to check my freaking toilet paper.

I was diagnosed in 2022 with vulvodynia, I wasn’t able to wear some types of clothes (example: jeans) to have sex or touching myself, and my bladder was a complete disaster. Now after 3 years of therapy I can proudly state I do not longer have any problems, and I even workout at the gym with heavy weights. Recently however I’ve received an autism spectrum disorder diagnosis, and I’ve recently wondered if there was some type of connection between vulvodynia and pelvic floor problems in general, and autism. Since the vulva is extremely sensitive to some tupe of external factors, I can see the similarities to the sensory sensitivity of someone with autism. Obviously I’m not saying that autism = vulvodynia, but that maybe people with autism are more likely to develop vulvodynia for some biological reasons

https://solsticept.com/medications-may-affect-pelvic-floor-function-lets-talk-about-adderall/

I’m 22 years old and I live in Turkey. Back in November, I was diagnosed with trichomoniasis, a UTI, and a yeast infection. I took antibiotics and antifungal treatment, and my doctor said the infections are gone. I’m currently taking probiotics.

Since December, I’ve been experiencing constant cramp like pain in my pelvic area, especially around my pubic bone and the vaginal opening. The pain is worse on the right side. I have PCOS, so at first I thought it was ovarian cyst pain, but when I went to the OB/GYN for a check up, he said the cyst is getting smaller and shouldn’t be causing this level of pain.

He told me the pain is due to stress and smoking/drinking, so I tried to ignore it. However, it’s now mid January and I still have pain every single day and it’s getting worse. I can also feel the pain under my belly button. It feels similar to period cramps, but without actually having my period.

A few days ago, I tried to masturbate using only clitoral stimulation, and suddenly I felt a sharp, electric shock like cramp in my vagina and pubic area.

Unfortunately, women’s healthcare here in Turkey is very limited, and doctors tend to dismiss symptoms like this. I don’t feel like I’m getting proper answers.

Based on these symptoms, could this be vulvodynia? Or does this sound like something else (pelvic floor dysfunction, nerve pain, lingering infection, etc.)?

Any insight would be appreciated.

Exactly what the title says - I'm interested in knowing how long people had symptoms before getting a diagnosis and treatment that worked. For me symptoms started around 21/22 in 2014 and I found effective treatment at 32 in 2025.

I (32F) started getting pain around my vestibule at the end of 21 in 2014. I had been on anti androgen pills and CBC since end of 17 (had been falsely diagnosed with PCOS due to amenorrhea). The pain might have been there earlier, but I wasn't having sex regularly so the first time I noticed it was after having sex right around my 22nd birthday with a guy I had been seeing for a month. I remember it being pretty painful (like 5 or 6 out of 10) and stopping after 30 seconds and then the guy I was with getting mad at me because he understood it was painful but figured I could still get him off other ways. I remember crying a lot after that cause I felt overwhelmed and honestly a bit traumatized and he left.

The next 2 years I had a handful of other hookups (like 4 people total) because a part of me thought that the reason I was having issues was because the guys I was with were not doing enough foreplay, and I just had to find someone who knew what they were doing. In hindsight after a couple more of these experiences I should have gone to the doctor, but I was having sex so infrequently it didn't really register as a 'me' problem, especially because my pain was only during sex with another person and I wasn't in a stable relationship. I never had pain when I masturbated, which I did a lot. I also didn't have unprovoked pain. I did have issues with my periods being super dry and burning right before my period, but the one time I went to a doctor for that she said I was completely normal and just had extremely light periods. On top of this I was in my last two years of university and was stressed all the time working multiple jobs and trying to graduate. So chasing down a diagnosis for a condition that was only present if I had sex was not a priority. Also at the time there was a lot of talk of the "orgasm gap" and I was hanging out with a lot of people in the social justice circles. The discourse was around men not caring about women's pleasure. As an autistic woman who hadn't really dated I latched on to that as the explanation for me having bad sexual experiences - men not caring about my pleasure. I didn't really understand that it could be something else.

By the time I turned 24 I started thinking it was me and diagnosed myself with vaginismus and bought some dilators. I had moved to China to teach English at this point so had much more time to think about my health and take care of myself, but no access to a doctor. I had many breakdowns while I was 24 because I was convinced I was broken and would be single forever. I tried "training" my body with a dildo, but had a lot of pain and yeah... Bad idea.

A few months after I turned 25 I started dating a guy I met in China. We dated for 6 weeks before having sex and the great thing about him was he never initiated or pushed me. The first two times we tried it hurt a bit during insertion, but not a lot (3 or 4 out of 10) but I still cried and broke down because I wanted to enjoy it and I still couldn't do that. So then we bought a subscription to OMG yes and he learned some techniques and I introduced a vibrator the third time we tried. And it worked! I had my first orgasm with another person. And it didn't hurt (I now think the vibrator masked the irritation and helped desensitize the area).

For the next five years I had maybe a dozen times where sex would be painful (like 5 or 6 out of 10), 40% of the time it would be a little irritating or uncomfortable during insertion (between a 1 and a 4 out of 10), and the rest of time would be completely pain free and amazing. So I didn't go to a doctor. I also was orgasming pretty much every time even if I had pain so I kind of ignored the pain/discomfort if it was present/blamed it on my partner not doing enough foreplay or is not using enough lube.

A few months after I turned 30 things started to change again. It became harder for me to orgasm. I was dry almost always. And I noticed that after sex I felt like something was wrong. I also started getting a lot of UTIs and UTI like symptoms, which I had never gotten before. I started getting panic attacks after sex. I started to think I was going crazy. At 31 I went to the doctor multiple times and asked for estrogen creme and hormone tests. The cream helped initially, but then stopped. Hormone tests showed shbg values around 130 nmol/l and testosterone levels around 0.3nmol/l. Both of which my doctor and gyno said were normal. They aren't.

Finally at 32 I found Rachel Rubin's article on hormonally mediated vestibulodynia. Everything clicked. My history, symptoms, and hormone levels all matched the diagnostic criteria. I got my GP to give me the testosterone and estradiol gel. 8 weeks later my vestibule and vagina feel amazing. But it took basically a decade to get this dealt with. Sometimes I am very angry because it was such a simple solution to a problem I shouldn't have had.

I guess at the end of the day I'm also fortunate. Although 22-25 were hell for my mental health, my symptoms improved so I could lead a relatively 'normal' though rigid sex life from 25-30 despite no treatment or diagnosis. And when things got worse again after 30 it took a year and a half for me to get a diagnosis and treatment. It's just frustrating because I feel like I missed out on what many women experience in their 20s in terms of freedom, self expression, and lack of trauma. All because doctors aren't aware that birth control pills can cause vestibulodynia and dyspareunia and how to identify the symptoms, and that women need testosterone just like they need estrogen and progesterone.

Hi all, I'm trying to figure out if this surgery is performed in the UK - so far I've only heard of partial vestibulectomies here.

I would love to know if anyone has had one here - and who the surgeon was - or whether it's something you need to travel for! Thanks all 💓

Which is the treatments that heals definely vulvodynia? Someone healed permanently?

It doesn’t seem like any doctors who specialize in this field accept insurance. Ridiculous but has anyone in the Tri-state area found a Dr who accepts insurance ?

Hi everyone having a hard time finding a compounding pharmacy in Southern California that makes these. If you’ve gotten this combination, where did you get it? I’ve only been able to find a pharmacy where they do only one or the other.

Thank you 🙏

Does anyone have a doctor they like/recommend in the Denver area (preferably west side)?

I just moved here, it’s been really stressful and I think maybe the stress just triggered something and it’s been debilitating for a couple weeks now. I had made a lot of progress and generally had little to no pain for the last 3 years, so I’m just really struggling currently. Any recommendations are appreciated. Thank you guys

I did use the tool btw but the doctor shown in my area seems to have moved practices since and is pretty far away now.

https://www.instagram.com/alivio.health?igsh=ejgwOHo2ZHRsZWJr

just thought I’d share this page for anyone whose in the thick of it and needing some hope. during my nightly scroll I came across this young female naturopath who deals with all different kinds of of pelvic/vulva pain. what stood out was her story dealing with her own Vulvodynia and how she overcame it by doing lots of brain rewiring and inner healing/work to regulate her nervous system. like many of us she poured all her money into specialists, holistic therapy, medications etc i love that she was honest about the fact there’s so much more to it than taking some herbal supplements and medication. if this resonates with anyone I think she’s worth a follow.

Hello everyone! If you are here and you are reading this subreddit and this post, I imagine that unfortunately you are also facing a new pain that leaves you feeling lost, scared, lonely and hopeless. A year ago I was in exactly the same place as you (you can find my story here : Secondary provoked vestibulodynia - Success story with no surgery), and with this post I would like to share all the information I have gathered over the course of this year that I would have liked to have at my disposal when I began to suspect that I was suffering from vestibulodynia. I hope this post will help you in some way and I send you lots of strength <3 even if it doesn't seem possible now, things will get better! Sending you love xx

1. Self-help tips to decrease pain/inflammation and get some relief while waiting for a doctor-prescribed treatment

• Try to remove all common vulvar irritants : (intimate) soap, scented laundry detergent, fabric softener, scented toilet paper, baby wipes, feminine hygiene products (spray, creams, powders, ..), baths oils, bubbles, douches!!!!, spermicides, condoms with lube or spermicide, fragranced menstrual pads, nylon underwear or tights.
• Also avoid : thongs, tight pants, bike riding, waxing, panties made of synthetic materials, penetrative sex, water with chlorine. Stay underwear-free in the house as much as possible. Wear cotton the rest of the time. Be sure to drink enough water : if pee is not well diluted it can cause burning to an irritated vulva. Use water-based lube only.
• Evaluate if you might allergic to any of these things : semen, latex, lanolin, parabens, preservatives, perfumes.
• Apparently benzocaine (Vagisil), neomycin (Neosporin) and Chlorhexidine (KY lube) can cause allergic reactions in some people, so if you are using them, try discontinuing them to see how your irritation evolves.
• Try ice packs or a heating pad to reduce the pain. Depending on your type of pain, either one should work.
• Try using a protective ointment like Aquaphor, especially if you feel like you have dryness and/or fissures.
• Stretch regularly to relax your pelvic floor (you can find nice videos on Youtube)
• Try a donut cushion if you have to sit down for prolonged periods.

The next two points are very important before meeting with a gynecologist. As you may have guessed, conditions affecting the vulva are not yet well known in the medical world. Therefore, unless you are lucky and happen to have a very knowledgeable and kind gynecologist right away, it is important that you also educate yourself in order be able to provide as much information as possible to your attending physician and to evaluate their work.

2. Know your pain

• Try to accurately describe where you feel pain : all over the vulva? At the entrance to the vagina (vestibule)? In the clitoris? More on the left/right side? Think about the circumference of your vulva as a clock, where 12 o'clock is situated towards your clitoris, while 6 o'clock is situated towards your anus. In which area do you feel the pain? For example : in the 5-7 o'clock area.
• Try to figure out if the pain is provoked (= you only have pain in certain parts of the vulva when they are touched) or unprovoked (= the pain is there regardless of whether contact occurs)
• Try to define your pain on a scale of 1 to 10. Try keeping track of how this number evolves over time and according to treatments.
• Think about how long you have had this pain. Is it a congenital/primary pain, i.e. Has it always been there since you tried penetration (ex: insertion of a tampon)? Or is it a secondary pain, i.e., has it arisen only in the last few months, after a period of life when you had no problem?
• Observe if there are other symptoms besides pain: itching? swelling? redness? discharge?

Collect all this information and describe it precisely to your gynecologist.

Take your time to also reflect on the origin of your pain :

Can you think of any particular event after which you began to experience symptoms?

For example: an accident/fall, a sexual intercourse gone wrong, a new soap/tampon/laundry detergent, a yeast/BV infection, an allergic reaction, a traumatic emotional event?

I highly suggest you to check out the "Vulvodynia Algorithm" (link 1 in the comment), in order to identify your type of pain and its causes (hormones, inflammation, nerves proliferation, nerves damage, genes, hyperactive muscles, etc.) If you find yourself in any of the categories, do not hesitate to inform your gynecologist.

3. Ask for the necessary tests to be carried out, in order to understand the root cause(s) of your pain

Vulvodynia and vestibulodynia aren't real diagnosis per se. They only mean "unexplained pain in the vulva" and "unexplained pain in vestibule", because the medical field hasn’t cared about explaining this pain for super long. Vulvodynia and vestibulodynia only indicate a symptom, not a diagnosis. If you had pain in your foot you’d want to know if it’s the bone, the muscle or the skin right? You wouldn’t just say that you have footdynia. You deserve to find the real cause of your pain! Luckily, recent studies have allowed a deeper understanding of vulvar pain, identifying more and more possible causes.

In particular, ask for the necessary tests to understand if you might be suffering from one of the following conditions :

Bacterial/fungal/viral infections:

• yeast infection
• bacterial vaginosis
• any sexual transmittable diseases (syphilis, gonorrhoea, chlamydia, trichomoniasis, HIV, HPV, genital herpes, ...)
• ureaplasma and mycoplasma
• aerobic vaginitis
• cytolytic vaginosis
• lactobacillosis vaginosis
• group B strep

Skin conditions:

• lichen sclerosus, lichen planus, lichen simplex chronicus
• contact dermatitis
• psoriasis
• eczema
• clitoral adhesion
• keratin pearls (clitoris)

Other :

• desquamative inflammatory vaginitis (DIV)
• plasma cell vulvitis
• interstitial cystitis

If all these tests come back negative, then there are other possible sources for your pain, which are covered in the next sections : hormones, muscles and nerves.

I also saw this post Screening for Vulvar Pain: Getting to the Root Cause of Your Pain Symptoms from u/fifithechinchilla that can be very useful to understand which tests to do, and how they work. It is a little bit technical, but it might be useful for your doctor!

4. Check your hormone levels

This is especially true if you are taking the combined oral pill or if you are menopausal (but it's worth check it even if you are not part of these categories). There are several studies now that show how hormone levels can affect the health of vulvar tissue.

Simply put, when you are on birth control, your natural hormones levels are altered. This can be a problem because your vulvar tissue/skin needs these hormones in order to be healthy. When these hormones are missing, your vulvar tissue might become thinner are drier (vaginal atrophy). That way, nerves are more exposed and the skin is much more sensitive, hence the pain.

Here are some articles you can show your gynecologist in case he or she is skeptical :

• Polymorphisms of the androgen receptor gene and hormonal contraceptive induced provoked vestibulodynia
• Can oral contraceptives cause vestibulodynia?

If you think your pain may be caused by your hormone level, it is recommended that you discontinue hormonal means of contraception. At the same time, a testosterone + estradiol cream or estrogen is often prescribed. It's effective for many people : The Treatment of Vestibulodynia with Topical Estradiol and Testosterone.

If you think that you might suffer from vaginal atrophy, remember that these factors contribute to vaginal dryness :

• smoking (cigarettes, weed)
• medications like antihistamines, benzodiazepines, beta blockers, etc...

5. Check your pelvic floor health

Muscles

Vulvar pain and pelvic floor pain are often related. If the pelvic floor muscles are too contracted (hypertonic pelvic floor, vaginismus, ...) they can cause pain throughout the vulvar area.

In this cases, retraining the muscles through physical therapy is the primary treatment.

Through physical therapy you will in fact learn and use many practices that can help you overcome your pain :

• diaphragmatic breathing
• control over your pelvic floor (kegels)
• self massage
• work with dilators
• trigger point therapy
• myofascial release
• TENS therapy
• biofeedback
• relaxtion techniques
• muscles stretching

Note that people who have pain in the vulva for other reasons (skin, infection, etc) might develop a hypertonic pelvic floor as a reaction to pain. For example, although my primary source of pain was not in my muscles, I automatically started clenching my muscles before/during sex as a pain/protection response, which made my pain worse. Thanks to physical therapy I could unlearn this clenching movement.

6. Check your nerves

Pudendal nerve

Pelvic pain can also come from a damage or irritation of the pudendal nerve, a main nerve in the pelvis. This is referred to as pudendal neuralgia. This can happen if the nerve is damaged after an injury (broken bone, fall..) or after prolonged sitting/cycling/constipation or if it's compressed by muscles or tissue.

Medicines to alter the pain, painkilling injections and pelvic floor physical therapy are the main treatments.

Here's a test to understand if the pain might be coming from the pudendal nerve or not :

"Another test that can be helpful when diagnosing vestibulodynia is called a vestibular anesthesia test (VAT). The purpose of the VAT is to test if numbing the vestibule tissue makes the pain go away. Vulvar pain can also be caused by nerve pinching or damage further up in the nerve. Because sensation in the vulva comes through the pudendal nerve, vulvar pain caused by problems in the nerve is called pudendal neuralgia. In patients with nerve problems, numbing the nerve endings during the VAT does not relieve pain, and only a pudendal nerve block that acts above the damaged site to turn off all sensation through the nerve can relieve pain. It is not common for pudendal nerve issues to cause pain that is only in the vestibule. During a VAT, local anesthetic is applied topically in a cream or by injection. Once the numbing is in full effect, then the Q-tip test is redone, as well as other things that would normally cause pain, like touch or penetration. If the pain is relieved, then the test is considered positive and indicates that the pain is coming from the vestibule tissue itself."

Basically, if applying lidocaine on your vulva you still perceive pain, it is possible that the cause of pain is not superficial but deeper -> pudendal neuralgia.

Superficial nerves / neuroproliferative vestibulodynia

Sometimes the cause of pain in the vestibule is an overgrowth of nerves in the vestibule. If you had this pain since forever, it's called congenital neuroproliferative vestibulodynia. If this pain appeared only later in life after many years pain-free, then it's called acquired neuroproliferative vestibudolodynia.

Here's an explanation by Prosalya :

"Research is ongoing to further our understanding of how this happens. It is thought that the overgrowth of nerves is driven by the immune response, either to infection or allergy. In addition to finding increased numbers of nerve cells in the painful vestibule of patients with vestibulodynia, researchers also see increased numbers of immune cells. Recent findings suggests that the nerve proliferation is triggered by signaling from immune cells in the tissue".

For exemple, speaking from personal experience and also from what I have read on this blog, yeast infections and the creams used to treat them are often cited as triggers for vestibulodynia. A recent study on mice confirmed this hypothesis : Repeated Vulvovaginal Fungal Infections Cause Persistent Pain in a Mouse Model of Vulvodynia. Apparently, the inflammation caused by yeast infections can cause hyperinnervation (= growth of nerves) in the area, hence the pain.

7. Reflect on your romantic and sexual relationships (TW - mention of sexual violence)

Too often people with vulvar pain are told "there's nothing there, it's all in your head." And in no way do I condone this lack of professionalism and competence. Your pain is real and valid and you deserve appropriate treatment.

On the other hand, this does not mean that the mind-body relationship should be completely ignored. Ask yourself first and foremost if you feel safe in your relationships. Does sex makes you anxious? Does your partner(s) put pressure on you? Are you afraid that your partner(s) will leave you because they are "unsatisfied" ? Have you experienced violence in the past that you have not processed? Do you feel obligated to perform certain practices? Do you feel that you do not have the right to talk about the pain you feel? Do you feel that your partner(s) think(s) more about their pleasure than about your pain?

If there are any "yes" in your answers, consider that they may have an impact on how your body is reacting.

Finally, suffering from chronic vulvar pain means rethinking the way you have sex. And there are so many pleasurable practices that don’t involve penetration/PIV (penis in vagina): vibrators, nipple play, butt play, mutual masturbation, role play, sensation play (hot/cold, blindfolded..), neck/ears/feet kissing,… so much choice! There is no need to endure pain when you can simply experience pleasure in other ways :). Vulvodynia does not have to mean the end of your sex life. On the contrary, it could represent an opportunity to explore new things and different parts of your body and your partner's body.

If you are having a hard time seeing yourself as a sensual being and enjoying sex because of the pain, I wrote a post with some tips on how to reconnect with yourself and your partner : 30 ideas to reconnect sensually and sexually with your partner.

8. Take care of your mental health (TW - mention of su*cidal thoughts)

Dealing with this pain and the way it disrupts our lives can bring many negative emotions. I, too, felt at first that I had lost a part of me. I felt lonely, desperate and scared. If you feel that these negative emotions are too difficult to handle do not hesitate to contact a therapist, who can accompany you on this journey. Chronic pain is a serious issue and you should not be ashamed if you are feeling depressed or if you are having su*cidal thoughts. Please do not hesitate to seek help, it's worth it <3.

Also, if you have the possibility, do not hesitate to talk about this with the people around you, whether family, friends, or anyone you feel comfortable with. Because it is a condition that touches a "private" area, many people do not dare to talk about it, which can lead to feeling even more isolated. But I encourage you to break the taboo and talk about it with the people you love. It's estimated that 10% of women suffer from this kind of pain, so you're much less alone than you think. And talking about it could help someone who doesn't dare to ask for help too.

If you don't feel like talking about it with the people around you, don't hesitate to post on this forum to get in touch with people who are going through similar experiences to yours <3

9. Advocate for yourself (TW - mention of gynecological violence)

As mentioned above, unfortunately, not all gynecologists are competent and knowledgeable. To save you hassle, money, and time, I suggest you ask in this group if anyone knows a good doctor in the area where you live. That way you won't have to go through incompetent gynecologists. In general, if you have a bad time with a doctor, don't hesitate to leave and look for someone better.

Run for the hills if your gynecologist says any of the following red flags :

• "It's all in your head."
• "Your vulva is completely fine, there is nothing wrong with it"
• "I can't help you"
• "Have you tried to relax?"
• "I'll give you an anesthetic so your husband can still have sex with you"
• Or if she/he practices tests without asking you if you are in pain or uncomfortable

If you unfortunately do not have the opportunity to choose the gynecologist you prefer, do not hesitate to show up for appointments with medical papers to support your arguments and questions.

In general, the more informed you are about your condition, the more you can ask questions, monitor what the doctor is doing, and have control over your own body. This will also allow you to receive a diagnosis much faster, and therefore to start the appropriate treatment as soon as possible. I had the chance to find a good doctor and an excellent physical therapist, so in 8 months 80% of the pain was gone. I say this to show that, if treated correctly, pain doe not remain at its current level forever.

The sooner you find the cause of your pain and treat it appropriately, the less opportunity you will give the inflammation to worsen and damage your tissue and nerves.

10. Despite everything : don't forget to enjoy life

Finally, on a more personal note, I want to tell you that I know how difficult it is to accept this condition. It took me months, too. I was sad, I was angry, I was scared, and it seemed so unfair that I should hurt like this every day and that I could no longer be intimate as I wanted to be. What I learned though, was that repeating to myself every day how unlucky I was and how much this situation sucked, brought me nothing, just further mental pain and frustration. I know it is tempting to wallow in this pain, because in a way it is justified. But it is very important to know how to detach/unplug from this situation. Whether we like it or not, it is a medical condition that usually does not disappear overnight, but rather needs a few months to see a reduction in pain.

So my advice is : in the meantime, don't torture yourself! I know it is not easy because you are afraid and because you are in pain, but on the other hand, it does no good to focus all your energy all the time on the spot that hurts. Maybe it happens to you too, but personally when I am distracted because I am doing other things, I feel less pain. Therefore, keep doing activities that are good for your little heart and your mental health. Spend time with your loved-ones. Enjoy your hobbies. Meditate. Do yoga. Spend time in nature. Explore your body in a different light. Build intimacy with your partner in a new way. Allow yourself some days where you don't think/overthink about your condition.

Try to treat yourself with kindness and compassion, and not bombard you all the time with negative phrases. Give your body love, give yourself a hug. Vulvodynia can be hard enough on its own, don't add more hardness yourself <3

I hope this summary will help someone, and I send you all a virtual hug <3

--> If you want more in-depth information, I suggest you to consult this Self-Help Guide for Vulvodynia (link 2 in the comment) and to follow Dr. Jill Krapf on Instagram.

If you have any more tips/opinion/experiences to share, don't hesitate to write them down in the comment section!

I have had vulvodynia for 14 years--probably longer, I just noticed when I started having sex at age 16 (you do the math). I have other posts that go into more detail about my history but basically my vulvodynia is unrelated to yeast or BV it's all nerves, mysteries, and a little bit of pelvic floor tension. Now that I'm in pelvic floor physical therapy I'm starting to pay attention to when my pelvic floor is clenched/up and when it's relaxed/down. I realized that whenever I am having sex or masturbating ,my pelvic floor is REALLY clenched. Is that normal? I'm wondering about your experiences of your pelvic floor during sex (penetrative, oral, even just foreplay) and if it's normal to be really clenched or if that may be worsening my pain.

tl;dr should i be able to relax my pelvic floor to c*m or is it normal to have a super clenched pelvic floor during sexy time

Hi everyone, I thought I would come on here and share my recent experience of having my iud replaced. I developed vulvodynia last year and I was terrified of how it would go. I also have a horrible experience replacing my previous one. This time it was much better and of course there wasn’t zero pain but it was so much more manageable. My provider was incredibly nice and understanding of my past experience and current diagnosis. I took anti anxiety meds ahead of time, zofran, and 800mg ibuprofen. I was also on my period which everyone should be when they are having this done if possible. She used lidocaine jelly first to numb the entire area then used a paracervical block. I was very nervous for this since I have heard very mixed experiences. Mine did not hurt at all due to the numbing jelly used. The removal and insertion did hurt a fair bit but it was definitely manageable. She really took her time in between steps to make sure I was okay before moving forward. This really helped with the anxiety as well as I was prepared for each step.

If you need an IUD I would highly recommend finding a provider that provides adequate pain management. The very minimum of lidocaine jelly and paracervical block and make sure to take pain meds the night before and 1 hour before the procedure to stay ahead of the pain.

So I 22(F) with unprovoked Vulvodynia that started with my first yeast infection around 4 months ago am frustrated with how little data there actually is around Vulvodynia. I have been scouring the internet (which I don’t recommend for anyones mental health), and I came across this scholarly article about a study done where they compared samples of the vestibule in women with Vulvodynia, and in women without. This really went into depth about how inflammation plays a role especially in women whose vaginal pain started with reoccurring yeast infections. I had read somewhere on here about how someone felt immense relief taking omega 3’s, and changing their omega 6 to omega 3 ratio in their diet which can be related to the Maresin 1 that is talked about in this study. The fact that they want to trial topical SPM’s which are natural anti inflammatories that don’t cause the side effects of steroids on human patients to get approval by the FDA is a big step, and a lot of what is written in this made me feel like maybe modern medicine is on a path to creating new treatments for those of us suffering. Sorry this was so long, but here is the link to the study for anyone interested.

https://pmc.ncbi.nlm.nih.gov/articles/PMC10527276/#F2

Hello all! I was diagnosed in March and started taking Paroxetine 20 mg and Pregabaline 75. I noticed HUGE improvement and for 2 months I finally LIVED my life

Unfortunately after 2 months the symptoms started to come back. So I was prescribed venlafaxine 75 mg instead of paroxetine. And the same scenario happened: 2 months of remission and then again the symptoms came back and this time they seem worse. My clitoris hurts, I feel dull pain and pressure in my labia and generally I feel like shit.

I have an appointment with my neurologist soon hoping she will help me.

But are there any success stories of antidepressants vs vulvodynia?

I hope there are. Thank you for reading and responding.

Hi, I was wondering if you've tried any of these new methods for combating vulvodynia and pelvic floor dysfunction:

1. Milli Expanding Vaginal Dilator
   Milli is the first and only all-in-one expanding vaginal dilator specially designed to help women with vaginal tightness. Link: https://www.hellomilli.com/vaginal-dilator/?srsltid=AfmBOop8pv4Anot21QY8177SiqndjzsPvIpq1oSQqCEXIyknbu4hB80O

2. Suplements
   Palmitoylethanolamide (PEA): Supplement with anti-inflammatory and neuromodulatory properties. A 2025 study showed a decrease in pelvic pain and improved sexual intercourse when combined with antioxidants (transpolydatin).

3. Vaginal fractional CO₂ laser therapy
   Improves vascularization and elasticity of vulvar tissue. A 2025 study involving postmenopausal and young women with vulvovaginal atrophy due to contraceptive use showed a decrease in sexual pain and increased lubrication.

It's the first time in a very long time I've felt encouraged. Dr Goldstein's Forward is worth the price alone. Anyone else had a good experience with her method? Don't tell me negatives--I want to live in my delusion for a bit!

(TL;DR at the end)

I’ve been dealing with vulvodynia for over two years now. Basic symptoms have been itchiness in the vulva, general irritation/discomfort, and burning pain with penetration (to the extent that PIV sex was impossible for a long time).

I had been told by a pelvic floor PT that the problem was that my pelvic floor muscles were too tight, but I didn’t quite understand how that was the issue, because I could insert things just fine (didn’t encounter any resistance), it was just painful and burn-y when I did.

I also didn’t get why I would be itchy and irritated in the outer vulvar area if that was the case - I kept saying it felt like an infection, even though I’d tested negative for everything.

I’ve since seen a urogynecologist who prescribed baclofen (muscle relaxant) and gabapentin (for nerve pain) suppositories, which have helped me be able to have penetrative sex again. I understand now that muscle tightness and nerve pain are in fact the underlying issues. Sex hurts a bit at first when he goes in deep, but then my muscles relax and we’re able to do it without pain (though it doesn’t feel 100% the way it used to before my issues started). I still feel generally sort of itchy and uncomfortable sometimes. I’m planning to go back to physical therapy later this summer (last year the dilators just made me more irritated but I’m hoping they’ll work better this time with the addition of the suppositories).

So my question is, how is the cause (tight pelvic muscles) related to the symptom (itchiness in the vulva)? My understanding is that the tight muscles somehow lead to nerve irritation, which leads to the itchiness. Is this accurate? And if so, how exactly does it work? I am planning to ask my medical providers to explain in more detail, but my appointments aren’t til July/August and I thought this sub might have some answers in the meantime!

TL;DR: if I have tight pelvic floor muscles, why does that make my vulva itchy?

I know I definitely have tight pelvic floor , and vulvodynia, and vaginismus, but all the inflammation/redness , and the soreness sometimes, and my lips getting bigger sometimes, or vulva, and stuff but no yeast or bv I am always negative for those. Inside of my vagina is still pink I think maybe a little red, and I have dryness issues, I’m also a virgin so no chance of std’s. I’ve had this redness and other symptoms since as long as I can remember. it’s all in my groin area and my vulva and inside my vulva and at my vagina opening but not necessarily inside.

I have itching and burning then aching and stinging too but it all comes and goes. I also have these tiny little pimples in my groin not sure if that’s normal. i do think I have vulvo vaginal atrophy but my gynecologist is unsure. Only because I can’t stretch my labia open all the way, I have inside dryness in other areas, and I have a very thin canal and opening everything just looks so narrow and tiny inside. even when I did have estrogen I still experienced the redness and symptoms on the outside though. I was on hormonal birth control only for a year it was a patch but since I’m very underweight I think it didn’t really help… I’m only 23 years old.

if anyone has this and can explain that would be amazing… but I’m pretty sure the vulva is supposed to be pink too and mine was before I think. just not the inside of the vulva and stuff and still had the itching and stuff inside my vulva and vagina opening but it doesn’t stay in one spot it just radiates to my anal area, my vulva, my groin, my vagina opening and repeats .

Hi everyone, I am finally seeing a gynecologist in a week's time. I want to ask him for estrogen cream but think he might need convincing as I'm still in my twenties. It would be useful to know which cream/percentage of estrogen you've been prescribed so I can push for it?

Also I live in the UK so it's very unlikely I could get it mixed with testosterone. :<

Hi! I’ve been to numerous healthcare practitioners and no one has been able to answer this question. I have visible redness & inflammation/sensitivity on my outer labia minora on both sides - below where the clit is, where the labia has a bunch of creases/folds.

Does anyone else have this? Or has anyone been able to find an answer as to why it happens? Sometimes it will THROB with pain but sometimes it feels totally fine so I’m so confused. It developed over time, first on the left then on the right side…..

So I've been trying to be consistent with dilators and the pelvic massage wand, but I'm wondering if anyone has used Kiwi? My pelvic floor therapist didn't mention this one and I only discovered it a moment ago but it seems like it would be useful, in theory. It says it's supposed to ease entry pain prior to sex, and I've been struggling with relieving my entry pain more than my deeper pain. Has anyone used it, and if so, had any success with it?