It all started 5 years ago when I began with awful symptoms of an unexplained chronic pain/burn inside my vagina. At first I thought it was a yeast infection, but after several studies that indicated there was no bacteria or anything that suggested a normal infection, I began to worry deeply. At one point, a very well-known gynaecologist in Mexico City (my hometown), told me that it was all in my head and that there was nothing wrong with me. “Ok, so now I’m going crazy?”, I said. Looking for answers and self diagnosis After two years of searching for doctors and specialists in Mexico, after spending all this energy, time and money, I gave up completely. Pretty much hating everything and everyone in my life. I swear to god that if one more person told me if I’ve tried alternative medicine or essential oils, I was going to hunt them down. It’s really a no brainer, of course I’ve tried EVERYTHING! One day I was watching an episode of Sex and The City where I heard for the first time the term Vulvodynia. In that episode Charlotte was diagnosed with it, and she mentioned about it at brunch with the girls. I remember all four of them laughing, not taking the matter seriously, and, the worst part was when Carrie asked Charlotte if it hurts, and she said no. I have nothing against the show, in fact I’m a huge fan, but I was extremely disappointed how they addressed a serious medical condition. Not only does it hurts like hell, sometimes you can’t even sit down because anything that puts pressure on the vulvar area aggravates the pain. When I googled about Vulvodynia I started extensively researching the subject, it was like seeing the light at the end of the tunnel. So, what exactly is Vulvodynia? To put it in simple words it's vulvar chronic pain with no known cause. It is persistent, unexplained pain in the vulva (the skin surrounding the entrance to the vagina). It can affect women of all ages and can occur in women who are otherwise healthy. Vulvodynia can be a long-term (chronic) problem that’s very distressing to live with, but much can be done to help relieve the pain. Everything suddenly made sense, and it was such a relief to know that I wasn’t crazy and that there are in fact doctors who know about it, specialists that are investigating and researching on how to find better and new treatments. However, these special people were not in Mexico at the time, they were in the US. My diagnosis and living with the condition Luckily I was able to go to Florida and meet with incredible physicians. A gynaecologist specialised in vulvology and a team of pain management specialists as well. I started my treatment immediately with hope and positive vibes, even though from the beginning they told me that there are no guarantees. Not every treatment works the same, every woman is different, every body functions different. It might not work at all for some women. In my case some worked and some didn’t. It’s been five years and I’m still struggling with the pain, sometimes it gets better and some days I can’t even get out of bed. The value of information What keeps me going is the fact that I have more information now, and the fact that there are many women suffering from this as well. I’m not alone. I’m still seeing the doctors in Miami and I found a gynaecologist in Monterrey, Mexico. I also work with an acupuncturist, and I tried physiotherapy. There are certain tricks and home made hacks that help me at rough times, like coconut oil as personal lubricant. Hot or cold patches help to soothe the area and keep your mind off the pain. Essential oils work sometimes, magnesium for muscle spasms is great and eating an irritant free diet is very helpful. Breaking up with sugar is something to really think about. Sex can be challenging, I’m not going to lie, but it’s not impossible. At the end of the day, one only needs a loving, caring and patient partner. Communication is key. If there is one thing that I’ve learned it is to listen to my body and we all know that there are other ways to give and receive pleasure. What I’ve come to realise from this challenging journey is that the more I try to hide it or resist it, the more I try to pretend that I’m ok, the worse it gets. So, that’s why I’m breaking the silence, I’m making peace with the pain. I know the pain is there, I acknowledge it, and I’m letting it go. I can proudly say that I’m the first advocate for Vulvodynia in Mexico. I started an Instagram account to raise awareness, let people know that this is real, it’s a real condition and a lot of girls and women are battling with it. I invite you to follow my story through @peacewithpain, a safe platform that aims to support other women, even if they only need to speak up and be heard. Important things to know about Vulvodynia
48 Comments
lauren
17/1/2019 04:58:01
I’ve been struggling with vulvodynia for years and it’s so hard to talk about. Thank you for writing this.
Man
9/6/2020 23:17:09
I'm not a woman but I was recently diagnosed with scrotodynia or gential Dysesthesia. I was prescribed Lotrisone from an incompetent doctor who ruined my life. It is a strong steriod/antifungal cream, I did not have a fungal infection either later finding out. The cream caused intense burning so badly I could feel it up into my arm. I used it stupidly for 3 days. I went to a dermatologist and was prescribed more steriod cream. Continued burning, sensitivity, irritation. Went to a 3rd dermatologist who was educated and told me its scrotodynia after talking to me about my history. Its been the most debilitating thing I have ever been through. Mentally and physically it's extremely draining. I have constant irritation, burning, and pain, I feel sharpness through my urethra when sitting, moving around. I feel my fullness in my genitals going upstairs or any exrcercise. It's nearly impossible to find men suffering from this especially at my age. I'm 29 I'm in an amazing financial position as well and have a great job and amazing girlfriend of over a decade. However my life is miserable and meaningless since this and I cant focus or do anything. I cant concentrate on my work or hold a conversation. Nothing interests me except this pain. Doctors have been useless and its impossible to get to the right doctors. I had a urologist tell me to take warm baths and it's in my head.... it's so frustrating and upsetting when you cant get proper care or every single medication and treatment you tried is ineffective. I break down every single day I see no end or light. I'm majorly depressed, I went to a psychiatrist who was basically a robot and has no business in the mental field. I saw a psychologist who only talked about himself and his issues. Its dispeciable the level of care offered. The US healthcare system is a mess but that's for another conversation. I live in an area where the best doctors in the country are and cannot get the help I need or any relief. It's so debilitating I cannot leave my house, I have not left my house in weeks for anything. I cannot come to terms with this and cannot picture living the rest of my life in this amount of discomfort. It's been 3 months since it started and I know alot of you have suffered much longer. It's hard to relate to any man going through this because I've failed to find any I feel alone in this disease no one understands. Its 100% nerve related it's mainly due to irritated or damaged nerve endings. I'm so sorry you all are suffering as well. There is a newer therapy I am highly intrigued to try which is called scrambler therapy. It's supposed to change the way the nerves send pain signals to your brain. Insurance doesn't cover it and its extremely expensive but I want my life back and will do anything at this point for my sanity. This is one of the most horrible things someone can live with and I relate to all of you women. This disease is so misunderstood and I don't understand why. We have so many medical advances and treatments for all kinds of rare illnesses, doctors can even reconstruct penises and vaginas yet they cant heal nerve damage or chronic pains. I feel doctors don't approach treatment right and jump to the standards, SSRI'S(antidepressants) pain meds or nerve meds such as lyrica, gabapentin, and counseling. It all is useless. If you have urinary or bladder issue you will know any antidepressants will make you pee every 2 minutes and create more misery. Its just unacceptable in our time to have to live this way. I feel for all of you, this medical issue needs to be addressed on a much higher level as well as awareness that this happens in men. Its so under reported and misdiagnosed. I wish all of you the best and an eventual recovery.
Rosana
15/6/2020 23:51:45
Hi I have vulvodynia and I know how it feels.I never knew that a man could have something similar.I found that coconut oil is very helpful and if you need any cream ask the Doctor to send to a compound pharmacy so they can use a water base so its not so irritating for the skin.
Sara Penna
5/7/2020 14:04:48
Man, you are not alone. Years ago I ordered a book called, A Headache in the Pelvis. It dealt with a bicyclist who developed your exact pain. He found some relief, but, he went through HELL! I thoroughly understand your anguish and depression. I've had this insufferable condition for decades, on and off. Right now I'm in an 'on' condition. It is very difficult to do anything. I'm hunkered down in my air conditioned home, waiting and waiting for the pain to subside. From research I've found that there is nothing new to treat this heinous condition. I've got gabapentin but am afraid to up my dosage due to my age and risk of strokes and such. But, I may just have to take the chance because life is not worth living in this kind of chronic pain.
Nadia
26/9/2020 02:19:44
I did not know this happened to men. Thank you for sharing and educating us, I believe too many can relate with you as you have related with many here despite our ge ders. ts absolutley horrible living with cronic pain. I hope and pray a better understanding and cure is found. Good luck to you
Bekah Russell
27/1/2021 22:30:28
I realize you posted this over a year ago, but it speaks to me. I’ve been scouring the internet for information and answers to what’s going on with me personally. I felt comforted that any men are being effected by these chronic disorders at all, I suppose. My urethra started to feel irritated several months ago, and that was just the beginning. I can’t hold a thought in my head let alone function day to day. I hope you’ve found help. And I hope your relationship is still strong. 💪🏾
Ann
27/3/2021 17:53:06
Hi. My doctor told me men get it too. I know how you feel. I was diagnosed 8 months ago. And before that many incompetent doctors. They all just sent me home. Finally a gynecologist sent me to a specialist.
Mimi
8/8/2021 12:39:25
Have you heard about tsw or rss? It burns and hurts and causes vasodilation of blood vessels. It also can provoke itching. It’s a syndrome caused by steroids, topicals usually. There’s a facebool group dedicated to it. Please try becoming a member. It doesn’t matter how long you used them genitals absorb them the most.
Mimi
8/8/2021 12:44:36
Have you heard of rss? Or tsw. It’s a syndrome caused by steroids. It hurts, burns and causes vasodilation of blood vessels. It can be itchy too. There’s a facebool group dedicated to it. Try becoming a member. ITSAN is the only organization who offers more info on it. I suffer from it too but it’s rare finding people with genital area involvement. Because it’s people with eczema who use them the most. Us with genitals get misdiagnosed with vulvodynia ect.
Janet
26/8/2020 10:39:14
Hi. I’ve had vulvodynia. I don’t have it anymore. I had it for 6 months-all the symptoms. I was terrified. I couldn’t sit, walk and was in agony 24/7. I was given estrogen, suppositories to numb pain, physical therapy etc. I spent thousands. I accidentally ( thank you, God) ran into a website from Nicole Sachs and something called TMS. Please look her up. Dr. John Sarno was her mentor. It’s real pain but it comes from an emotional place. After working with her (for free) my pain went away in a few months. I wear pants, exercise, work again and feel so much better in lots of ways. Her method works for many of our pains related to TMS. The pain is real but the cause is surprising. Please try it out. All you’ve got to lose is the vulvodynia. Good luck!
Catherine
15/10/2020 01:40:23
Call me so I can explain more 786-702-4944
MARY R TAYLOR
8/12/2020 02:19:04
Is this the course for like 295 you have to purchase for Nichol Sachs? On her website that you used? I don't see much else but that? Thanks in advance.
Suze
24/6/2021 16:55:24
I was having terrible stinging, shooting pains high inside my vagina years ago. My GYN did an exam and diagnosed me with Vulvar/vaginal Atrophy. Vulvodynia can be an offshoot of that. My doctor gave me a prescription for some Osphena which would rehydrate me inside. And it has done a great job in preventing the pain from returning. Until 2 1/2 weeks ago. I got hit with a MAJOR Vulvodynia attack that nearly crippled me. Did all the research possible. Thought I could treat it like a UTI. So bought all the products to see if they would help. Made only slight dent. Then early Tuesday morning, did deeper research to discover that probiotic supplements, foods and drinks work wonders on helping with vulvodynia pain. Went that morning, stocked up on the drinks & foods. By the next day, I noticed a CONSIDERABLE DIFFERENCE!! I am now on the down swing of my attack and it is finally going away. Try a probiotic diet for awhile and see how it works for you!!
Alejandra Saade
13/6/2019 21:56:51
Hola Pamela,
Amelia
9/10/2019 05:34:22
Hola!
Hi Pamela,
Barbara Ednie
14/5/2020 15:52:29
Would love to get more information from you.Trying to find something to relieve the pain when sitting.
Tamela
3/8/2020 23:51:04
Hello Baclofen 10mg compound suppository
Tamela
3/8/2020 23:51:38
Hello,what are something that has help you....I cannot wear clothes without using Baclofen 10 mg...which has help my pain a lot..
Jc
7/3/2021 16:24:25
Grateful for information...would like to follow your blog.
Norbu kanna
16/4/2020 23:32:00
3 yrs suffering from Vulvodynia. Can’t sit, drive for long, sleeping with frequent urination. Depressed 57 yrs old. Struggling everyday. What to do?
Pollyanna
19/4/2020 08:00:04
I suffered dreadful burning in this area until I cut out oxalates.
Lauren
19/8/2020 14:31:54
What does a low oxalate diet entail?
My pain started after the birth of my daughter. I’ve tried everything from steroid creams to estrogen. I had never found anything that works. It’s been 15 years. I finally found something! I was searching for natural treatments and saw testimonials for Emuaid. Funny enough...I had already have purchased this several times for other issues. (I nicked myself shaving and had some small infection - and my daughter had mrsa. I swear by this stuff - it works on all kinds of issues! I’m on my 3rd jar.) Anyway, I read the personal accounts and I tried it. Within a few days, my pain was going away! No joke. I could cry. After 15 years I had given up hope. I will post this everywhere I can - because I know I have been looking for help for a very long time. I would have tried anything that someone recommended. I use the Max strength. It’s natural and homeopathic ...
Meagan
7/8/2020 23:56:55
Hi Chris
Kylie
19/8/2020 09:17:57
I have just started using this today. I’ve had constant pain for 3 years. It’s there everyday, Reminding and tormenting you. I got this stuff and am on day one! My first day without wearing ice packs 24/7
Sophie
23/12/2020 12:44:40
Hi Kylie, I was just wondering how Emuaid has worked for you? I’ve suffered with vulvodynia for years and reading this thread might have given me a bit of hope! Has it worked for you? If so how often do you apply it? Thanks! :)
Shaleen
16/3/2021 04:35:37
Is the emuaid still working? How are you?
KAT
2/5/2021 14:02:39
Hi, Just wondering if the Emuaid is still working for you. Are you better?
Heather
15/10/2020 06:11:56
Thank you for sharing your experience with Emuaid. Like you, I’ve suffered for sooooooo long! I think I’ve been miserable off and on for over 25 years.
Sophie
23/12/2020 12:46:29
Hi Heather, just wondering if Emuaid worked for you?? Really hoping you say yes as I need help too! Thanks :)
Shaleen
16/3/2021 04:36:38
Hi Heather. Did the emuaid work for you? How are you?
Shaleen
16/3/2021 04:34:27
Is the emuaid still working for you? I was thinking about trying botox injections, I need my life back :(
LOREEN M TORRES
15/5/2020 13:56:54
Hi. What's the Instagram page name?
Sonia
17/5/2020 20:25:31
Hi there, I’ve recently been diagnosed with provoked Vestibulodynia (vulva pain), I have been dealing with this horrifying condition for a year and a half. A lot of buring pain but alon with it a get a lot of chills on my legs sometimes feels like an electricity runs down both my legs. Has anyone else ever had this symptom associated with the vulva pain?
sigita
31/5/2020 17:40:24
Hi I have like electric shooting to my left leg sometimes . And vulva pain iching and stinging . Gp cant find diagnosis ,I was treated from thrush witch I didnt had . Its 8 month now .I am going mental and hate my self that I am women cos this is all happening. Dont know what to do . Gp referred me to ginecologist ,but cos is this lockdown I am not getting appointment .
Shaleen
16/3/2021 04:37:41
Are you feeling any better? Did you get answers?
Barbara Ednie
18/5/2020 20:25:09
Ive had it for 4 yrs since pelvic surgery.Has to be nerves. Tried all natural creams and expensive creams from private pharmacy.Was like having severe diaper rash into the vag.Tried PT 3 times this month but quit.Too painful 3 months ago a gyn gave me Triamcinolone Acetone Ointment. Used twice a day for a month and then 1 a day for month and now 2 times a week. Its not perfect because I still cant sit up straight but the burning is almost gone. I think this is a steroid but not sure.I hate to stop because I dont want it to come back. But it was amazing.
Thank you for sharing your story. I also have Vulvodynia. I invented the VuVa magnetic dilator set to help me with my pain and now I’ve helped over 35,0000 women all over the world. Here is my story: https://www.bustle.com/p/what-is-sex-like-with-vulvodynia-how-one-couple-coped-when-intercourse-became-painful-75898
Holly
16/9/2020 04:46:25
Hi my name is Holly. I just had my 22nd birthday and during that time I was in immense pain not being able to pee without sitting in a bathtub of water because it would burn. I felt like I was in literal hell. It was nonstop pain and would wake me up in the night burning. I’ve dealt with raw burning for years with yeast infections, but this was way worse and it was ugly. I went to several doctors and was shuffled around to a gynecologist. She told me I had herpes II and the results came back positive. It all felt crazy and impossible because I was a virgin with my boyfriend and he was tested for all stds and came up negative. I’ve been struggling with finding a point to my life and battling with suicide and deep sadness. After about a week the awful symptoms cleared up so I can go to the bathroom easier now, although I’m still scared. Now I’m just dealing with sores from this ongoing yeast infection. If anyone knows something that would relieve pain, I’m willing to do anything. Thanks
paige
16/9/2020 05:04:42
Holly,
Alice Taylor
9/8/2021 00:54:25
Daleann
6/1/2021 16:49:50
Yes I’ve had it fir about 8 months 66 years old. MD doctors and even gynocologists just sent me away. Saying it was yeast. Or just sent me away. I kept searching for a doctor. I got a fissure infected from embedded yeast. I got a biopsy that got infected and was negative. I was in awful pain. Thoughts of ending my life were swimming through my mind. Got addicted to Norco. Finally a gynecologist sent me to a specialist. He said I had Volvodynia. And gave me a few ideas. But also said there was no cure. He gave me a massage
Cathy
25/1/2021 14:08:26
I have experienced vulvadynia off and on for quite some time. Been to my doctor and gyno. Never really get any answers. I get bad pinching and aches in my groins and legs. Gyno says it’s not related but it all comes at the same time so I beg to differ. I also get abdominal cramps. It’s hard to describe to your doctor. They want me to work my way up to 6 gabipenton pills a day. I’m not sure that’s what I want to do. Norma goes away quicker. This time been hanging on for over a month. I think if my nerves bother me it can flare up 15/3/2021 15:55:12
I am a 21 year old sufferer of vulvodynia and have been for the past 3 years. I am finally in a place where I feel confident enough to use my voice to advocate for women who are suffering. I have started my own blog and created a space where you can come to feel some relief, or to cry, or to vent, or even to laugh and learn more.
Sheree
11/5/2021 22:29:47
My elderly gmom started suffering from this a few years ago. She has had a troubling life and stressful psychosocial issues, so vulvavaginitis has only made life tormenting. She often is in tears the she wants to die. She was been prescribed so many things from an antidepressant, neurotin, steroid creams, antivirals, antifungals, pain creams. I have sent her sitz bath kits, ice packs, and the like. She lives a few states away so it is hard to help her. Also, all the different treatments likely frustrate and confuse her. 23/7/2021 10:25:38
Amazing blog, I'm very happy to read this blog. Basically, I know new many things to read this blog. I strongly believe that the blog delivers the best information to its audience.
Mimi
8/8/2021 13:13:04
How about topical steroid withrawal? The red skin syndrome which causes burning and redness as result of vasodilation of blood vessels. That’s what steroids do when you stop using them and it doesn’t matter how long you used it genital area is the most sensitive and along with eyelids absorbs the most. There is a facebool group dedicated to it ITSAN topical steroid withrawal private group. It’s full of people (mostly eczema sufferers) who are going trough it. I wish there were more people with genital involment present so we could help eachother but too many get misdiagnosed and told it’s vulvodynia. Your comment will be posted after it is approved.
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