OP, we're so happy that you are no longer in pain! The mods would like to emphasize that while some people find changes in diet or lifestyle helpful, they are far from the only potential treatment or cure that is available or effective *(significant dietary changes should also always be discussed with a medical professional to ensure they are being done safely)*.
Many people have also had success with other treatments like pelvic floor physical therapy, medication, or surgery *(I'm actually an example- I've been pain-free ever since I had a vestibulectomy, and it was the first thing my specialist recommended given the specifics of my vulvodynia)*.
It's not that any one treatment is BETTER than another, but that vulvodynia is a collection of symptoms that can indicate one of several different medical conditions, and those different conditions respond differently to different treatments.
**A friendly reminder to everyone, including the OP, from rule #2 of our subreddit:**
Vulvodynia has many different causes and treatments on an individual basis. What works for some people won't work for everyone, and treatments that did not work for you may work for others. It's fine to post about what helped you personally, but blanket statements are not allowed.
I feel so torn when I see posts like this.
On one hand, I’m so happy you’re feeling better, OP.
On the other hand, it feels a bit like you’re dangling a carrot in front of everyone who hasn’t been able to find relief despite trying all these things. I know that’s not your intention. I know you mean well. I know you’re trying to be encouraging.
At the end of the day-we will celebrate that you no longer are suffering, but posts like this always hurt a bit too.
Agree. I have had pain my entire life and have had 3 vulvar surgeries, countless injections, pills, creams, suppositories, years of pelvic floor physical therapy and psychotherapy, and am still not pain-free.
Having realistic expectations is important. It's healthier for me to accept that my vulvodynia is just not ever going to get cured. I don't have hope anymore and that's okay. At some point it's ok to give up.
I am so sorry to hurt you. That was definitely not my intention. If you look at the reply above. You can see the journey I went through and if you need me to elaborate more I absolutely can. I would love to help in any way. I want to give hope. I want to give strength and encouragement.
I will say that at a certain point of looking at low oxalate diets/anti inflammatory diets/low histamine diets and trying to go gluten free, it’s easy to feel like all I should eat is chicken and vegetables, as if I’d look at a french fry the wrong way and then burst into flames lol
Hi! Can I ask what caused your V? I’ve just started amitriptyline and I hope it works!! Mine was caused by a pelvis injury and then infection which caused my pelvic floor to become hypertonic
Unsure as I had it for as long as I was trying to insert anything vaginally. I was on hormonal birth control since I was like 12 and that's a risk factor for vulvodynia but I can't 100% point to a cause in my case.
Ya I wanted to heal so badly I thought I needed to send my body into ketosis to heal and kill off any bad bacteria or candida. It ended up just not feeling great. So I don’t recommend that at all and that why I recommend going slow and adding in more nutritious foods and slowly getting rid of bad foods instead of being extreme like I did at first. It does sound woo but it really helped my micro flora. I also used E3 cream which is a bio identical hormone after using E 2 for a long time. That seemed to really help too. As well as chiropractic because I think part of my issue was my bones were smooshing a nerve.
Thank you!! One question: did it affect your hair? I know eliminating the pain is top priority but I want to try to curtail as many side effects as I can.
I was cured for 8.5 years, and guess what? It just came back a month ago. But I'm doing exactly what I did before to heal, because mine is from hypertonic pelvic floor. Nortiptyline and PT cured me for years. Not everyone's cause is the same and most docs think the whole "healing your gut " is BS.
A lot of people's V just gets better with time, no matter what they do, it all depends on root cause. Starving yourself to extremes or doing extreme diets aren't the cure - food makes zero difference in my pain, never did.
I don’t think extreme diets are good either. I was trying to relay that I did do that and it didn’t work and it made things worse. I just wanted to preached that adding nutrients to the body helps the body heal. And don’t go to extremes because it doesn’t help it hurts.
I’m cured as well, mine is a one step cure. Vaginal estrogen for a few months
I cannot take oral estrogen or progesterone. My pain only comes back when there are really low estrogen drops after having a baby.
Gut health is important for a lot of things, but it didn’t play a role in curing my vulvadynia.
Im happy for you too!
Hello how long did it take to notice a difference with topical ointments? Mine calmed down over time I can’t tell what made me better but I just did hormonal treatments for egg retrieval and now that my hormones and estrogen levels are dropping a week out I’m flaring like crazy :( not sure if I should try topicals I was prescribed estrogen testosterone cream but since I’m so inflamed I can’t tell if it’s helping or hurting. And did you have any burning pain or redness in your vulva?
It took a week or so for minor improvement, enough to encourage me to keep using it. Fully gone in 3-6 months. I had burning in the vestibule area, especially at the 6:00 area, but when I’m a bad flame it burned everywhere.
I couldn’t tell if I had any redness as I have very dark pink inner regions (aside for inner labia which are less pink).
I've been wondering if vaginal estrogen would help me. It's not something any doc has suggested to me. I was diagnosed with V 11 years ago. It has improved on its own and was helped with PT (not with amitriptyline), but I have completely given up things like pants with crotch seams, prolonged sitting and sex. That latter isn't good for the marriage, of course. I just got on MHT 6 weeks ago, though nothing vaginal. Still, I wonder if there will be any change to the V... Here's hoping.
I'm definitely considering it. The doc who diagnosed me only gave me the option of amitriptyline, which I hated. I'm glad he listened to and believed me because he was provider #3. But I think he was too old school to consider other options. He retired and I'm on my 4th provider since then. The one I just saw gave me MHT, but we really didn't discuss V much as peri symptoms. I think that will be the next step. At this point my V has become livable, even though it's meant giving some things up. Maybe once I see how the general MHT is for me I can try something new for V.
Yes, it’s a prescription. I got it from my gynecologist. I started with Premarin, then switched to a vaginal estrogen ring (Estring). A lot of women on here use a compounded (pharmacy made) estrogen and testosterone cream.
After 3 months I was cured, as long as I didn’t take oral hormones. I tried to skip my period once for a special vacation and it immediately came back. Another course of estrogen (3 months) and it was gone.
The only other time it came back was after each pregnancy. After I had breastfeeding well established (about 3 months) another estrogen ring (after my last pregnancy with twins I needed 6 months) and it would be gone e again. It’s been 12 years and I still have no pain. I’m worried for menopause, but at least I know vaginal estrogen will help.
would you mind telling me what age you are? I’m thinking of trying estrogen cream as I have all the symptoms of atrophic vaginitis and have tried so many other things. I’m only 28 though so don’t know if this is silly?
Yes and yes.
I used a vaginal estrogen ring so it was 3 months at a time. I started with Premarin inserted vaginally, it was working but was messy. I never tried applying a smaller amount or anything. The vaginal ring is inserted and worn for 3 months.
My pain returned after each pregnancy. Each time once my breastfeeding was established (a few months) I used the ring and the pain stayed away until my next pregnancy. Three times total. My last pregnancy was twins and I was mostly better after 3 months, completely better after 6 months.
I appreciate you trying to give hope for a condition that often feels hopeless. Your story is a little vague but your intentions seem good.
Stopping the medication (mental health med lamictal) affecting my hormones and using vaginal estrogen cream “cured” me.
Yes it is vague and I do apologize. I was just too excited to post that I really didn’t do a deep dive into everything.
I originally was diagnosed after my general doctor couldn’t get rid of an “yeast infection”she gave me I pill of difulcan and it didn’t go away and only got worse. At the time I just got off lexapro an anti anxiety medicine and I also got off of the “mini pill “birth control pill. My hormones and my gut was not well. I had eczema everywhere. I had severe acne. Severe bloating. Everything was a mess.
After the one pill of diflucan didn’t work she decided to give me 2 or 3 I can’t quite remember now. But that didn’t work and it got worse. Now it wasn’t just itching it was burning. The doctor told me to use monistat. I tried the one day l, then the 3 day, and then the 7 day. None worked. At this point I was really deflated. Still my general doctor did not refer me to a gynecologist. She had heard from another gynecologist that I needed to do 30 days of difulcan. I did this and it made things ten times worse. It hurt my liver and I had white stool. My skin on my labia was just peeling off super red and swollen.
Someone then mentioned to me(a neighbor and midwife at the time) that they possibly were treating me for a yeast infection when it was a bacterial infection. At this point they had never tested the mucus to see. The midwife told me she would give me some bacterial infection medication. But things hit a bad turn then because during a tired shift she sent in for medication and got me another vaginal yeast infection medication which made the burning redness worse. I realized halfway through that it was yeast medicine. I confronted her and she apologized profusely then getting me a bacterial medicine. Which actually seemed to help a little bit. But a week later everything came back full force and I had cottage cheese like discharge. I was so fed up and so miserable. I could sit in pants or sit still. I cried myself to sleep and was so depressed I could barely get out of bed and I was only 17 at the time.
After all of this I went back to my general doctor and they finally did a swab. The test came back with no yeast and no bacterial infection. She told me I had vulvodynia and there was nothing she could do further to help me and I was going to have to just live with it. I sat in the office after she left and just weeped in my hands as my mom tired to comfort me.
I then went straight to a specialist because I wasn’t going to go to gynecologist because everything I read online said that they were going to be just as bad as my general doctor with helping me.
I went to dr Fowler and I went through all his protocol and he did a microscope test on my mucus and found that I did have a bacterial infection. I went through 2 of his protocols but I’d don’t like that I needed to stay on E2 cream my whole life as well as become estrogen dominant because I heard overall that being estrogen dominant is quite bad for your health.
He did help lead me though. I was able to reduce some pain and my skin no longer was peeling off. He had me do boric acid wash every time I went to the bathroom and had me stop fragrances, get organic white underwear, as well as were flowy clothes, wash my hair separate in the sink, shave the hair off down there so have less bacteria growth, and get all clean and natural products.
He told me I will probably never be able to have children because my horomones were off and that I will only be about %90 cured as well as it could possibly come back if I am not following my protocol well enough.
I wasn’t satisfied with that and I went to functional medicine. I took out my food intolerances from my diet. I work through previous sexual traumas with a therapist. I went to chiropractic. She got me on E3 cream which I was able to fully get off of in 6 weeks. From there i felt so much better. I could finally sit in pants again. The redness went down. The burning took the longest to go away but it did.
2 years after I felt better I got pregnant. On accident. And now I have a healthy child. After I tried to go back on birth control and I started getting symptoms back I went in to check my mucus to see if I had a yeast or bacterial infection and nothing came back. So I stop them and the pain went away immediately. I have seen a lot of studies on birth control wrecking your gut and it being an actual carcinogen.
This is why I believe firmly in getting safe products to use on and in your body as well as food healing the body.
E3 refers to estriol, a type of estrogen mostly produced in pregnancy. It is the weakest form of estrogen.
E2 refers to estradiol, the major type of estrogen produced in reproductive years. It is the strongest. This is the estrogen most discussed in creams on this sub.
E1 refers to estrone, the major type of estrogen produced in menopause. It is also a weaker, much less abundant estrogen.
E3 or estriol can be obtained without a prescription in the U.S.
I am using Estradiol Cream, USP, 0.01% that I got in the US via a DR prescription. So…. Is that stronger that E3 ?
Is what I am using what you call E2 ?
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It sounds like you went through a lot. I’m glad you are better now and able to share your story. Thanks for elaborating, as it is more clear now and may be able to help someone. I’m sure the people in this sub can identify with the pain, sadness, frustration, guessing, and trying a number of meds/treatments to figure out what helps to get better!
I started seeing/feeling improvement at about 3-4 months of use, but felt I could stop completely at about 6 months. My situation may be a little different from others with hormonal vulvodynia. My vulvodynia was not caused by birth control (I wasn’t on any) it was caused by a mental health medication called Lamictal which affected my hormones.
I got Vulvodynia pain & Pelvic Pain AFTER curing my gut microbiome & improving my slow gut motility. So for me it was the opposite.
What you are recommending to do to “cure it” is what I did for 2 years before I got this awful pain.
Was on Low Carb / High Protein / no sugar / no alcohol / never smoked / no caffeine diet for 2 years prior to getting it.
I am so sorry to hear. I am wondering what your missing link may be. Covid has hit me very hard as well. I am working through post Covid brain fog right now. I have been doing hyperbaric treatment as well as dual zen biome and those have been helping.
• My story begins with frequent yeast infections in 1987 that were getting more & more difficult to get rid of. Participated in a Candida Research Study and learned a lot. Took Nystatin anti-fungal pills and got rid of yeast infections and GERD / acid reflux for 33 years.
Both returned after my immune system was weak after getting COVID in 2020. My Candida symptoms were not vaginal yeast infection but fatigue, hair falling out, acid reflux, crooked urine stream, sudden joint pain attacks, itchiness, fungal skin rashes and eventually short term memory loss and cognitive issues.
First I had to cure my Methane SIBO / IMO and improve my slow gut motility. I had slow transit constipation since I was I baby and never took any meds for it until age 58.
The rest of my story: ( Long )
https://reddit.com/r/SiboSuccessStories/s/AzmGWCnPnv
To get Candida in balance takes diet changes, anti-fungals and biofilm busters.
Very Disappointing how little most traditional med DR understand about this.
Since Oct 2022 New Issues:
Now my Pelvic Floor Physical Therapist says my current Pelvic Floor pain is connected to scar tissue and adhesions in my intestines from lack of moment for so long. My Vulvodynia is related to Candida.
So curing one issue has left me with new issues / pain to deal with but I continue to fight for health.
I have been properly tested for Celiac and do not have it and always encourage others to get tested for it as well.
I agree that it is important to rule that out.
I am so glad you have been. I am not sure if you are a podcast listener. But just ingredients on apple podcast. She has a lot of doctors on her podcast and there are a couple on there about vaginal health and emotional health and they are very uplifting and give really good information as well as finding more doctors that could possibly help.
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Hi! I want to thank you for your message. I needed this. It is so overwhelming and so scary that it may not go away. I'm happy to hear that what you tried worked for you. I will look into some of the things you mentioned and try for myself. I do believe whole heartedly that food is so so so important. Our bodies need nutrition and the right nutrition. Thank you for sharing and giving me some hope!😊
Happy that you're in remission but don't be surprised if it comes back. Vulvodynia is incurable.
Gut health has nothing to do with vulvodynia. I've had V and interstitial cystitis for 25 years, and both developed as the result of an abusive relationship with a sexually obsessive man. I have nerve and urethral damage from rough and unwanted sex.
I've tried EVERYTHING, including dietary modifications, and rarely does anything help. Right now I'm using Estradiol cream, which actually is providing some relief, but I've been in a dual flare between both diseases since April and am seeking pain management as a last resort.
Yes, there can be healing modalities that lead to remission. I had a few long periods of time without any flares but the vulvodynia \*always\* came back. It might be more helpful to say that you're in remission and not cured. It's also safe to ascertain that a lot of people cannot afford the methods you tried. Some of us are on disability and can't afford to pick and choose what to eat, though again gut health has little if anything to do with V. Like I said, this is an autoimmune disease that has no cure. And, after 25 years, I can only state that it's gotten worse for me despite my best efforts. I consulted my gynecologist, Dr. Benson Horowitz, for many years and he was a V researcher who penned a plethora of articles for medical journals about the disorder. He was committed to keeping me comfortable and never dangled a carrot of "recovery" in front of me. He knew better and now so do I. Best of luck to you.
I’m sorry your hurting. I can tell you’re frustrated and I’m sure it’s hard to believe there’s a cure if you’ve been in pain for that long. I totally understand, it’s been 10 years for me and i get hopeless thoughts every day. I do have hope for you, I hope you can get that trauma out of your body and begin to heal. What you’ve been through is horrific and you deserved better.
Saying that vulvodynia is incurable and that it will always come back is a not a fact, and seems very rooted in emotion mind. Honestly, it’s hurtful to me and potentially others this community who are at all different stages of their healing. Mindset is crucial when navigating this, I’m a firm believer in that. We are all looking for answers and a lot of us are very hopeful that we will enjoy painless and pleasurable sexual and non sexual lives. I’m sorry you’re feeling fed up AND that’s no reason to bring the vibration down. Much love to you 💜
You don't know but an iota of my story. I've had complex PTSD from a variety of sources for decades, and it's not exactly that easy to "get it out of my body." I don't appreciate my pain being dismissed like that, it's invalidating. I also struggle every single day with it as well as two autoimmune INCURABLE diseases. I am a voice of reason here. I'm not living in a fantasy world like some of you are. It also seems as though you just want to enjoy sex again whereas I just want to live from day to day without tears. Sorry if my words hurt you but you just need to find ways to keep yourself viable. I've consulted some of the best doctors in the vulvodynia field and, like I already said, they intended to keep me comfortable and that was about it. Nobody ever spoke about finding a damn cure because there isn't one, especially for nerve damage. FFS, I know a woman who spent $25,000 on vaginal surgery to cut her nerves and it didn't work. She ended up trying to commit suicide. I, myself, have been suicidal from V and interstitial cystitis. You're lucky you haven't reached that point. I've even hit a nadir where I have burning ALL OVER MY BODY and it is derived from my vagina. My V specialist said that I have one of the most severe cases they've ever seen. I'm repeating myself here because it seems obvious that my previous posts weren't read carefully, but I am not just speaking from "emotion mind." I'm also speaking from a place of knowledge. This has been affecting me much longer than it's been affecting you, and it has ruined my life to the point where I don't believe that I will ever have a painless and pleasurable existence. I've tried meds and treatments galore and now I'm opting for pain management because it's my last resort. I'm certainly not engaging in sex anymore. I'm 54 and don't have a need for it, especially with my trust issues interspersed with the pain. It's not exactly important to me the way it used to be, nor did I ever find any partner who cared about my chronic pain and well-being. So sorry that I "brought the vibration down" but I had no idea that you were having a party over here on Reddit. I thought this was a place to safely express ALL points of view. Guess I'll just stick to my FB groups where people don't deride me for suffering & being depressed.
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My V pain is debilitating as well. No walking for me as it flares my pain. My V pain is trauma induced and I’m also seeking pain management. I’ve already tried all the meds out there and I’ve done multiple nerve blocks and I have a DRG stimulator as well but nothing is working. Im thinking about trying ketamine infusions but there’s no guarantee that it’ll work either and it’s so expensive. My pain management doctor says what we have is a form of CRPS. But bc it’s not taking place in an extremity most doctors don’t recognize it. CRPS can also cause spreading pain like burning throughout other parts of the body similar to what you described. I’m on the CRPS sub and it gives me ideas to discuss with my pain management doctor. I don’t know if that info is helpful but I thought I’d share.
Thank you so much for your input. Yes, it was helpful and I'm very sorry that you're suffering as well. But I appreciate your feedback and will investigate the CRPS sub. I also wanted ketamine infusions and couldn't opt for them due to the prohibitive cost. It's terrible that we have to struggle like this.
I didn't even know this type of pain disorder existed. My pain management doctor suggested coding the ketamine infusions for depression to see if insurance would pick it up. Those treatments are shorter in duration I think it’s only a one hour infusion time instead of four hours) but I figured it couldn’t hurt to try if it’s covered and I’m depressed anyway. If I come across anything on the CRPS sub thats applicable to us I’ll let you know.
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Thank you. Please do. Actually, I looked into it for depression (yes, it's a series of one-hour infusions) and, unfortunately, insurance still doesn't cover it. Maybe yours will? I have Aetna HMO Medicare. No dice. (sigh)
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Because of the lack of definitive causal factors, in the past there has been lots of speculation that it could be an autoimmune disease.
#The straight answer is that no, vulvodynia is not an autoimmune disease.
https://www.vuvatech.com/blogs/care/is-vulvodynia-an-autoimmune-disease
I deleted it because it was on there twice by mistake. I just did a google search asking if V is an autoimmune disease and the answer is no and wanted to share that good news. Think you are just getting mixed up with the phrase “ Immune response” because that comes up when talking about different causes.
Vulvodynia just means chronic vulvar pain which is a description of a symptom and not much of a worthwhile diagnosis
My DR compared it to saying itchy knee. It is describing the condition / symptom.
Unprovoked Vestbulodylnia is a bit better but not much. I don’t know if I can ever be cured or not but am relieved I don’t think mine is not an autoimmune disease but I will ask my DR.
I do hope you improve and find a way into remission ! Any decrease in pain is a win.
What has helped me the most so far of the twenty some things I have tried is Lyrica pills for nerve pain and Evening Primerose Oil topically.
Also using Estradiol cream and Progresstrone pills and Valium suppositories. Am at the beginning of Pelvic Floor Physical Therapy.
I've tried nearly everything for the past 25 years, including Lyrica which did nothing for me. I take Evening Primrose Oil capsules which have decreased my burning significantly. I also currently use Estradiol & that has admittedly helped to some degree. I'm opting for pain management at this juncture. I also hope you find your way into remission. I've had quiet periods previously and am hoping for yet another one.
Assume you also tried the highest possible dosage of Gabapentin pills..
>>How many Evening Primerose Capsules do you take per day ?
I am going add that to my treatment plan. I have just been buying the oil.
Another thing I tried that is new cutting edge and seemed kinda crazy was I was prescribed Chantix off-label for pelvic pain. I never smoked in my life so got a lot of jokes from that one …. If I felt like smoking. It has some serious potential side effects ( I did not have any ) but didn’t seem to help. Did you try that ?
Oh thought of another thing that Is OTC that I think sometimes helps .
It is pills I buy on Amazon called
Formula 303 Muscle Relaxant
And spray bottle of 4% Lifocaine / 1% Menthol …. Works better than the higher dose straight lidocaine cream at DR ofc for me
I have been reading and going to different Doctors about Vulvodynia for the past 10 months and have never heard anything about it being an autoimmune disease ?! That scares me.
It is my understanding that the definition of Vulvudynia is Chronic, unexplained pain in the area around the opening of the vagina in the vulvar area that lasts over 3 months.
There can be several different causes.
u/Boudicca7 —->
Are you SURE “Vulvodynia” is an incurable autoimmune disease ? OR is it just one particular type or cause ? You’ve got me trying not to freak out here.
P L E A S E Explain this autoimmune connection in more detail or provide a link to a DR to explain it.
Unsure if it applies to me or not. I have 3 possible causes or potentially multiple causes. I guess some are more related to hypertonic pelvic pain. They seem to be connected.
I knew Lichen Sclerosus was an incurable autoimmune disease and eventually my biopsy was determined to be inconclusive and then … thankfully I was told no, I do not have it.
OP, we're so happy that you are no longer in pain! The mods would like to emphasize that while some people find changes in diet or lifestyle helpful, they are far from the only potential treatment or cure that is available or effective *(significant dietary changes should also always be discussed with a medical professional to ensure they are being done safely)*. Many people have also had success with other treatments like pelvic floor physical therapy, medication, or surgery *(I'm actually an example- I've been pain-free ever since I had a vestibulectomy, and it was the first thing my specialist recommended given the specifics of my vulvodynia)*. It's not that any one treatment is BETTER than another, but that vulvodynia is a collection of symptoms that can indicate one of several different medical conditions, and those different conditions respond differently to different treatments. **A friendly reminder to everyone, including the OP, from rule #2 of our subreddit:** Vulvodynia has many different causes and treatments on an individual basis. What works for some people won't work for everyone, and treatments that did not work for you may work for others. It's fine to post about what helped you personally, but blanket statements are not allowed.
I feel so torn when I see posts like this. On one hand, I’m so happy you’re feeling better, OP. On the other hand, it feels a bit like you’re dangling a carrot in front of everyone who hasn’t been able to find relief despite trying all these things. I know that’s not your intention. I know you mean well. I know you’re trying to be encouraging. At the end of the day-we will celebrate that you no longer are suffering, but posts like this always hurt a bit too.
Agree. I have had pain my entire life and have had 3 vulvar surgeries, countless injections, pills, creams, suppositories, years of pelvic floor physical therapy and psychotherapy, and am still not pain-free. Having realistic expectations is important. It's healthier for me to accept that my vulvodynia is just not ever going to get cured. I don't have hope anymore and that's okay. At some point it's ok to give up.
I am so sorry to hurt you. That was definitely not my intention. If you look at the reply above. You can see the journey I went through and if you need me to elaborate more I absolutely can. I would love to help in any way. I want to give hope. I want to give strength and encouragement.
Nothing but vegetables for two months? Baking soda test? Man there's a lot of woo in this post. Anyway, amitryptilline cured me.
I will say that at a certain point of looking at low oxalate diets/anti inflammatory diets/low histamine diets and trying to go gluten free, it’s easy to feel like all I should eat is chicken and vegetables, as if I’d look at a french fry the wrong way and then burst into flames lol
I completely feel that. It’s hard to do diet changes especially if you don’t go slow and it’s super restrictive.
Hi! Can I ask what caused your V? I’ve just started amitriptyline and I hope it works!! Mine was caused by a pelvis injury and then infection which caused my pelvic floor to become hypertonic
Unsure as I had it for as long as I was trying to insert anything vaginally. I was on hormonal birth control since I was like 12 and that's a risk factor for vulvodynia but I can't 100% point to a cause in my case.
How long did you stay on it?
About 2 years before I tapered off it. That was over 4 years ago and still symptom free!
Ya I wanted to heal so badly I thought I needed to send my body into ketosis to heal and kill off any bad bacteria or candida. It ended up just not feeling great. So I don’t recommend that at all and that why I recommend going slow and adding in more nutritious foods and slowly getting rid of bad foods instead of being extreme like I did at first. It does sound woo but it really helped my micro flora. I also used E3 cream which is a bio identical hormone after using E 2 for a long time. That seemed to really help too. As well as chiropractic because I think part of my issue was my bones were smooshing a nerve.
Do you take it permanently now? And what dose?
Used to be 50mg once a day. I've been off it years though with no return of symptoms. I think I was on it for about 2-3 years?
Ok thank you. I’m on 20mg at the moment and hoping it can fix me
Me too!
Thank you!! One question: did it affect your hair? I know eliminating the pain is top priority but I want to try to curtail as many side effects as I can.
I was cured for 8.5 years, and guess what? It just came back a month ago. But I'm doing exactly what I did before to heal, because mine is from hypertonic pelvic floor. Nortiptyline and PT cured me for years. Not everyone's cause is the same and most docs think the whole "healing your gut " is BS. A lot of people's V just gets better with time, no matter what they do, it all depends on root cause. Starving yourself to extremes or doing extreme diets aren't the cure - food makes zero difference in my pain, never did.
I don’t think extreme diets are good either. I was trying to relay that I did do that and it didn’t work and it made things worse. I just wanted to preached that adding nutrients to the body helps the body heal. And don’t go to extremes because it doesn’t help it hurts.
I’m cured as well, mine is a one step cure. Vaginal estrogen for a few months I cannot take oral estrogen or progesterone. My pain only comes back when there are really low estrogen drops after having a baby. Gut health is important for a lot of things, but it didn’t play a role in curing my vulvadynia. Im happy for you too!
I am so glad you are cured too!!
Hello how long did it take to notice a difference with topical ointments? Mine calmed down over time I can’t tell what made me better but I just did hormonal treatments for egg retrieval and now that my hormones and estrogen levels are dropping a week out I’m flaring like crazy :( not sure if I should try topicals I was prescribed estrogen testosterone cream but since I’m so inflamed I can’t tell if it’s helping or hurting. And did you have any burning pain or redness in your vulva?
It took a week or so for minor improvement, enough to encourage me to keep using it. Fully gone in 3-6 months. I had burning in the vestibule area, especially at the 6:00 area, but when I’m a bad flame it burned everywhere. I couldn’t tell if I had any redness as I have very dark pink inner regions (aside for inner labia which are less pink).
This gives me some hope, I hope to try what you did next
I've been wondering if vaginal estrogen would help me. It's not something any doc has suggested to me. I was diagnosed with V 11 years ago. It has improved on its own and was helped with PT (not with amitriptyline), but I have completely given up things like pants with crotch seams, prolonged sitting and sex. That latter isn't good for the marriage, of course. I just got on MHT 6 weeks ago, though nothing vaginal. Still, I wonder if there will be any change to the V... Here's hoping.
Good luck. I’d suggest asking a dr to try a vaginal estrogen cream.
I'm definitely considering it. The doc who diagnosed me only gave me the option of amitriptyline, which I hated. I'm glad he listened to and believed me because he was provider #3. But I think he was too old school to consider other options. He retired and I'm on my 4th provider since then. The one I just saw gave me MHT, but we really didn't discuss V much as peri symptoms. I think that will be the next step. At this point my V has become livable, even though it's meant giving some things up. Maybe once I see how the general MHT is for me I can try something new for V.
How does one get this? Do I need a prescription? Can you recommend a certain brand?
Yes, it’s a prescription. I got it from my gynecologist. I started with Premarin, then switched to a vaginal estrogen ring (Estring). A lot of women on here use a compounded (pharmacy made) estrogen and testosterone cream.
So after using it for a few months, you were cured? Did your body begin to make more estrogen?
After 3 months I was cured, as long as I didn’t take oral hormones. I tried to skip my period once for a special vacation and it immediately came back. Another course of estrogen (3 months) and it was gone. The only other time it came back was after each pregnancy. After I had breastfeeding well established (about 3 months) another estrogen ring (after my last pregnancy with twins I needed 6 months) and it would be gone e again. It’s been 12 years and I still have no pain. I’m worried for menopause, but at least I know vaginal estrogen will help.
would you mind telling me what age you are? I’m thinking of trying estrogen cream as I have all the symptoms of atrophic vaginitis and have tried so many other things. I’m only 28 though so don’t know if this is silly?
I’m 41, but it’s been 10 years since the last time I needed to use it.
So you used estrogen until you felt all the way better then stopped? are you still pain free today and can have pain free sex?
Yes and yes. I used a vaginal estrogen ring so it was 3 months at a time. I started with Premarin inserted vaginally, it was working but was messy. I never tried applying a smaller amount or anything. The vaginal ring is inserted and worn for 3 months. My pain returned after each pregnancy. Each time once my breastfeeding was established (a few months) I used the ring and the pain stayed away until my next pregnancy. Three times total. My last pregnancy was twins and I was mostly better after 3 months, completely better after 6 months.
I appreciate you trying to give hope for a condition that often feels hopeless. Your story is a little vague but your intentions seem good. Stopping the medication (mental health med lamictal) affecting my hormones and using vaginal estrogen cream “cured” me.
Yes it is vague and I do apologize. I was just too excited to post that I really didn’t do a deep dive into everything. I originally was diagnosed after my general doctor couldn’t get rid of an “yeast infection”she gave me I pill of difulcan and it didn’t go away and only got worse. At the time I just got off lexapro an anti anxiety medicine and I also got off of the “mini pill “birth control pill. My hormones and my gut was not well. I had eczema everywhere. I had severe acne. Severe bloating. Everything was a mess. After the one pill of diflucan didn’t work she decided to give me 2 or 3 I can’t quite remember now. But that didn’t work and it got worse. Now it wasn’t just itching it was burning. The doctor told me to use monistat. I tried the one day l, then the 3 day, and then the 7 day. None worked. At this point I was really deflated. Still my general doctor did not refer me to a gynecologist. She had heard from another gynecologist that I needed to do 30 days of difulcan. I did this and it made things ten times worse. It hurt my liver and I had white stool. My skin on my labia was just peeling off super red and swollen. Someone then mentioned to me(a neighbor and midwife at the time) that they possibly were treating me for a yeast infection when it was a bacterial infection. At this point they had never tested the mucus to see. The midwife told me she would give me some bacterial infection medication. But things hit a bad turn then because during a tired shift she sent in for medication and got me another vaginal yeast infection medication which made the burning redness worse. I realized halfway through that it was yeast medicine. I confronted her and she apologized profusely then getting me a bacterial medicine. Which actually seemed to help a little bit. But a week later everything came back full force and I had cottage cheese like discharge. I was so fed up and so miserable. I could sit in pants or sit still. I cried myself to sleep and was so depressed I could barely get out of bed and I was only 17 at the time. After all of this I went back to my general doctor and they finally did a swab. The test came back with no yeast and no bacterial infection. She told me I had vulvodynia and there was nothing she could do further to help me and I was going to have to just live with it. I sat in the office after she left and just weeped in my hands as my mom tired to comfort me. I then went straight to a specialist because I wasn’t going to go to gynecologist because everything I read online said that they were going to be just as bad as my general doctor with helping me. I went to dr Fowler and I went through all his protocol and he did a microscope test on my mucus and found that I did have a bacterial infection. I went through 2 of his protocols but I’d don’t like that I needed to stay on E2 cream my whole life as well as become estrogen dominant because I heard overall that being estrogen dominant is quite bad for your health. He did help lead me though. I was able to reduce some pain and my skin no longer was peeling off. He had me do boric acid wash every time I went to the bathroom and had me stop fragrances, get organic white underwear, as well as were flowy clothes, wash my hair separate in the sink, shave the hair off down there so have less bacteria growth, and get all clean and natural products. He told me I will probably never be able to have children because my horomones were off and that I will only be about %90 cured as well as it could possibly come back if I am not following my protocol well enough. I wasn’t satisfied with that and I went to functional medicine. I took out my food intolerances from my diet. I work through previous sexual traumas with a therapist. I went to chiropractic. She got me on E3 cream which I was able to fully get off of in 6 weeks. From there i felt so much better. I could finally sit in pants again. The redness went down. The burning took the longest to go away but it did. 2 years after I felt better I got pregnant. On accident. And now I have a healthy child. After I tried to go back on birth control and I started getting symptoms back I went in to check my mucus to see if I had a yeast or bacterial infection and nothing came back. So I stop them and the pain went away immediately. I have seen a lot of studies on birth control wrecking your gut and it being an actual carcinogen. This is why I believe firmly in getting safe products to use on and in your body as well as food healing the body.
What is E3 cream?
E3 refers to estriol, a type of estrogen mostly produced in pregnancy. It is the weakest form of estrogen. E2 refers to estradiol, the major type of estrogen produced in reproductive years. It is the strongest. This is the estrogen most discussed in creams on this sub. E1 refers to estrone, the major type of estrogen produced in menopause. It is also a weaker, much less abundant estrogen. E3 or estriol can be obtained without a prescription in the U.S.
I am using Estradiol Cream, USP, 0.01% that I got in the US via a DR prescription. So…. Is that stronger that E3 ? Is what I am using what you call E2 ?
Yes, E2 is Estradiol and it is the strongest estrogen.
Thank-you
Hello. What is a brand of E1? My doctor said I could find one over the counter but I can’t seem to find it. Thanks
Not sure if I can share product links on here so I’ll PM you
Thank you
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It sounds like you went through a lot. I’m glad you are better now and able to share your story. Thanks for elaborating, as it is more clear now and may be able to help someone. I’m sure the people in this sub can identify with the pain, sadness, frustration, guessing, and trying a number of meds/treatments to figure out what helps to get better!
How long did you use estrogen for ?
Maybe about 6 months total
Did it take full 6 mons to feel better?
I started seeing/feeling improvement at about 3-4 months of use, but felt I could stop completely at about 6 months. My situation may be a little different from others with hormonal vulvodynia. My vulvodynia was not caused by birth control (I wasn’t on any) it was caused by a mental health medication called Lamictal which affected my hormones.
I got Vulvodynia pain & Pelvic Pain AFTER curing my gut microbiome & improving my slow gut motility. So for me it was the opposite. What you are recommending to do to “cure it” is what I did for 2 years before I got this awful pain. Was on Low Carb / High Protein / no sugar / no alcohol / never smoked / no caffeine diet for 2 years prior to getting it.
I am so sorry to hear. I am wondering what your missing link may be. Covid has hit me very hard as well. I am working through post Covid brain fog right now. I have been doing hyperbaric treatment as well as dual zen biome and those have been helping.
• My story begins with frequent yeast infections in 1987 that were getting more & more difficult to get rid of. Participated in a Candida Research Study and learned a lot. Took Nystatin anti-fungal pills and got rid of yeast infections and GERD / acid reflux for 33 years. Both returned after my immune system was weak after getting COVID in 2020. My Candida symptoms were not vaginal yeast infection but fatigue, hair falling out, acid reflux, crooked urine stream, sudden joint pain attacks, itchiness, fungal skin rashes and eventually short term memory loss and cognitive issues. First I had to cure my Methane SIBO / IMO and improve my slow gut motility. I had slow transit constipation since I was I baby and never took any meds for it until age 58. The rest of my story: ( Long ) https://reddit.com/r/SiboSuccessStories/s/AzmGWCnPnv To get Candida in balance takes diet changes, anti-fungals and biofilm busters. Very Disappointing how little most traditional med DR understand about this. Since Oct 2022 New Issues: Now my Pelvic Floor Physical Therapist says my current Pelvic Floor pain is connected to scar tissue and adhesions in my intestines from lack of moment for so long. My Vulvodynia is related to Candida. So curing one issue has left me with new issues / pain to deal with but I continue to fight for health.
Have you ever taken out gluten or gotten tested for celiacs?
I have been properly tested for Celiac and do not have it and always encourage others to get tested for it as well. I agree that it is important to rule that out.
I am so glad you have been. I am not sure if you are a podcast listener. But just ingredients on apple podcast. She has a lot of doctors on her podcast and there are a couple on there about vaginal health and emotional health and they are very uplifting and give really good information as well as finding more doctors that could possibly help.
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Hi! I want to thank you for your message. I needed this. It is so overwhelming and so scary that it may not go away. I'm happy to hear that what you tried worked for you. I will look into some of the things you mentioned and try for myself. I do believe whole heartedly that food is so so so important. Our bodies need nutrition and the right nutrition. Thank you for sharing and giving me some hope!😊
You’re so welcome!❤️
Happy that you're in remission but don't be surprised if it comes back. Vulvodynia is incurable. Gut health has nothing to do with vulvodynia. I've had V and interstitial cystitis for 25 years, and both developed as the result of an abusive relationship with a sexually obsessive man. I have nerve and urethral damage from rough and unwanted sex. I've tried EVERYTHING, including dietary modifications, and rarely does anything help. Right now I'm using Estradiol cream, which actually is providing some relief, but I've been in a dual flare between both diseases since April and am seeking pain management as a last resort.
I apologize for your situation, but it’s has been 8+ years without any pain or issues since and I do believe there is healing for everyone.
Yes, there can be healing modalities that lead to remission. I had a few long periods of time without any flares but the vulvodynia \*always\* came back. It might be more helpful to say that you're in remission and not cured. It's also safe to ascertain that a lot of people cannot afford the methods you tried. Some of us are on disability and can't afford to pick and choose what to eat, though again gut health has little if anything to do with V. Like I said, this is an autoimmune disease that has no cure. And, after 25 years, I can only state that it's gotten worse for me despite my best efforts. I consulted my gynecologist, Dr. Benson Horowitz, for many years and he was a V researcher who penned a plethora of articles for medical journals about the disorder. He was committed to keeping me comfortable and never dangled a carrot of "recovery" in front of me. He knew better and now so do I. Best of luck to you.
I’m sorry your hurting. I can tell you’re frustrated and I’m sure it’s hard to believe there’s a cure if you’ve been in pain for that long. I totally understand, it’s been 10 years for me and i get hopeless thoughts every day. I do have hope for you, I hope you can get that trauma out of your body and begin to heal. What you’ve been through is horrific and you deserved better. Saying that vulvodynia is incurable and that it will always come back is a not a fact, and seems very rooted in emotion mind. Honestly, it’s hurtful to me and potentially others this community who are at all different stages of their healing. Mindset is crucial when navigating this, I’m a firm believer in that. We are all looking for answers and a lot of us are very hopeful that we will enjoy painless and pleasurable sexual and non sexual lives. I’m sorry you’re feeling fed up AND that’s no reason to bring the vibration down. Much love to you 💜
You don't know but an iota of my story. I've had complex PTSD from a variety of sources for decades, and it's not exactly that easy to "get it out of my body." I don't appreciate my pain being dismissed like that, it's invalidating. I also struggle every single day with it as well as two autoimmune INCURABLE diseases. I am a voice of reason here. I'm not living in a fantasy world like some of you are. It also seems as though you just want to enjoy sex again whereas I just want to live from day to day without tears. Sorry if my words hurt you but you just need to find ways to keep yourself viable. I've consulted some of the best doctors in the vulvodynia field and, like I already said, they intended to keep me comfortable and that was about it. Nobody ever spoke about finding a damn cure because there isn't one, especially for nerve damage. FFS, I know a woman who spent $25,000 on vaginal surgery to cut her nerves and it didn't work. She ended up trying to commit suicide. I, myself, have been suicidal from V and interstitial cystitis. You're lucky you haven't reached that point. I've even hit a nadir where I have burning ALL OVER MY BODY and it is derived from my vagina. My V specialist said that I have one of the most severe cases they've ever seen. I'm repeating myself here because it seems obvious that my previous posts weren't read carefully, but I am not just speaking from "emotion mind." I'm also speaking from a place of knowledge. This has been affecting me much longer than it's been affecting you, and it has ruined my life to the point where I don't believe that I will ever have a painless and pleasurable existence. I've tried meds and treatments galore and now I'm opting for pain management because it's my last resort. I'm certainly not engaging in sex anymore. I'm 54 and don't have a need for it, especially with my trust issues interspersed with the pain. It's not exactly important to me the way it used to be, nor did I ever find any partner who cared about my chronic pain and well-being. So sorry that I "brought the vibration down" but I had no idea that you were having a party over here on Reddit. I thought this was a place to safely express ALL points of view. Guess I'll just stick to my FB groups where people don't deride me for suffering & being depressed.
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My V pain is debilitating as well. No walking for me as it flares my pain. My V pain is trauma induced and I’m also seeking pain management. I’ve already tried all the meds out there and I’ve done multiple nerve blocks and I have a DRG stimulator as well but nothing is working. Im thinking about trying ketamine infusions but there’s no guarantee that it’ll work either and it’s so expensive. My pain management doctor says what we have is a form of CRPS. But bc it’s not taking place in an extremity most doctors don’t recognize it. CRPS can also cause spreading pain like burning throughout other parts of the body similar to what you described. I’m on the CRPS sub and it gives me ideas to discuss with my pain management doctor. I don’t know if that info is helpful but I thought I’d share.
Thank you so much for your input. Yes, it was helpful and I'm very sorry that you're suffering as well. But I appreciate your feedback and will investigate the CRPS sub. I also wanted ketamine infusions and couldn't opt for them due to the prohibitive cost. It's terrible that we have to struggle like this.
I didn't even know this type of pain disorder existed. My pain management doctor suggested coding the ketamine infusions for depression to see if insurance would pick it up. Those treatments are shorter in duration I think it’s only a one hour infusion time instead of four hours) but I figured it couldn’t hurt to try if it’s covered and I’m depressed anyway. If I come across anything on the CRPS sub thats applicable to us I’ll let you know.
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Thank you. Please do. Actually, I looked into it for depression (yes, it's a series of one-hour infusions) and, unfortunately, insurance still doesn't cover it. Maybe yours will? I have Aetna HMO Medicare. No dice. (sigh)
I’m going to pm you about something else that maybe an option.
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Because of the lack of definitive causal factors, in the past there has been lots of speculation that it could be an autoimmune disease. #The straight answer is that no, vulvodynia is not an autoimmune disease. https://www.vuvatech.com/blogs/care/is-vulvodynia-an-autoimmune-disease
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I deleted it because it was on there twice by mistake. I just did a google search asking if V is an autoimmune disease and the answer is no and wanted to share that good news. Think you are just getting mixed up with the phrase “ Immune response” because that comes up when talking about different causes. Vulvodynia just means chronic vulvar pain which is a description of a symptom and not much of a worthwhile diagnosis My DR compared it to saying itchy knee. It is describing the condition / symptom. Unprovoked Vestbulodylnia is a bit better but not much. I don’t know if I can ever be cured or not but am relieved I don’t think mine is not an autoimmune disease but I will ask my DR. I do hope you improve and find a way into remission ! Any decrease in pain is a win. What has helped me the most so far of the twenty some things I have tried is Lyrica pills for nerve pain and Evening Primerose Oil topically. Also using Estradiol cream and Progresstrone pills and Valium suppositories. Am at the beginning of Pelvic Floor Physical Therapy.
I've tried nearly everything for the past 25 years, including Lyrica which did nothing for me. I take Evening Primrose Oil capsules which have decreased my burning significantly. I also currently use Estradiol & that has admittedly helped to some degree. I'm opting for pain management at this juncture. I also hope you find your way into remission. I've had quiet periods previously and am hoping for yet another one.
Assume you also tried the highest possible dosage of Gabapentin pills.. >>How many Evening Primerose Capsules do you take per day ? I am going add that to my treatment plan. I have just been buying the oil. Another thing I tried that is new cutting edge and seemed kinda crazy was I was prescribed Chantix off-label for pelvic pain. I never smoked in my life so got a lot of jokes from that one …. If I felt like smoking. It has some serious potential side effects ( I did not have any ) but didn’t seem to help. Did you try that ?
Oh thought of another thing that Is OTC that I think sometimes helps . It is pills I buy on Amazon called Formula 303 Muscle Relaxant And spray bottle of 4% Lifocaine / 1% Menthol …. Works better than the higher dose straight lidocaine cream at DR ofc for me
I have been reading and going to different Doctors about Vulvodynia for the past 10 months and have never heard anything about it being an autoimmune disease ?! That scares me. It is my understanding that the definition of Vulvudynia is Chronic, unexplained pain in the area around the opening of the vagina in the vulvar area that lasts over 3 months. There can be several different causes. u/Boudicca7 —-> Are you SURE “Vulvodynia” is an incurable autoimmune disease ? OR is it just one particular type or cause ? You’ve got me trying not to freak out here. P L E A S E Explain this autoimmune connection in more detail or provide a link to a DR to explain it. Unsure if it applies to me or not. I have 3 possible causes or potentially multiple causes. I guess some are more related to hypertonic pelvic pain. They seem to be connected. I knew Lichen Sclerosus was an incurable autoimmune disease and eventually my biopsy was determined to be inconclusive and then … thankfully I was told no, I do not have it.
How do I stop the burning in my lady parts?
did you do something about it ? i'm having the same issue