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» Acupuncture advice please
Yesterday at 6:08 pm by fairlight10

» Please tell me this can get better
Yesterday at 2:10 am by anon99

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

Wed Feb 14, 2018 3:33 am by Athena


Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist

after having a vestibulectomy with no success, I decided to visit …

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Sat Feb 10, 2018 12:18 am by rockylife


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Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad

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Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

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So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11

New here! Vulvodynia, Interstitial Cystitis, Depression, Sexual Assault

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New here! Vulvodynia, Interstitial Cystitis, Depression, Sexual Assault

Post  _Jules_ on Sat Nov 15, 2014 7:23 pm

Hello all, I'm new here and this is my first post. As much as I hate to think of other people having to go through the horrible pain of Vulvodynia, it is of some consolation to read your stories and know we're not alone. It can be so isolating sometimes. There is a lot of hope on this forum and I see that many people have found significant relief. That makes me feel hopeful although I've been hopeless for a long time. I'd love to connect with some of you and be able to share our stories! I appreciate any and all support as it's been extremely difficult for all of us!

TRIGGER WARNING: sexual assault/rape

Forgive the length of this post! It seems there is always too much to say. Here goes: I first suspected something was wrong when I was 15 and tried to have sex for the first time. It is painful for a lot of girls the first time, so I wasn't surprised that it was and at first I thought I could grin and bear it. After a few tries and still being in searing, unbearable pain, I decided to talk to a doctor, who told me that physiologically there was nothing wrong, and it was probably due to me being so young and petite, and perhaps nervous. She essentially brushed me off. For several years I did not have sex, privately thinking that there was something extremely wrong that no one was seeing but me. I also had pain with urination, and after contracting a UTI several times from attempting to have sex (always with painkillers [they were not prescribed, I wasn't getting that kind of attention from doctors]). After 'clearing up' infections, which I was prone to, with antibiotics, I started to feel like I had a UTI all the time. I still feel that way and it's been years. My therapist also told me that my sexual pain was probably due to nervousness, to try lubricants and relaxation techniques, etc.
Fast forward to five years later. I was working at a summer camp out of state, and although I was used to the pain during sex and the bladder discomfort, I had a new problem with menstruating continuously for over a month. I had a similar problem once or twice before but had never sought help for it. The doctors there told me it might be a cyst. I came home for treatment because my insurance wouldn't cover the ultrasound or any subsequent treatment while out of state. I returned home and saw a doctor who told me my menstrual issues were probably nothing more than stress and hormone related. She did not check for a cyst, simply examined me externally and told me I "looked too good" to have pelvic inflammatory disease or an active infection (creepy, no?). After several months of continued pain and several appointments in which I basically had to beg for attention, I finally got an ultrasound that confirmed I had a hemorrhagic ovarian cyst (it was bleeding into itself). They did nothing to treat it and told me to come back in a month. I had several of these cysts come and go with no treatment at all. Eventually I was referred to a Urogynecologist for my issues with urination (feeling like I have a UTI constantly).
The Urogynecologist attempted a cystocopy to view the bladder internally. It was horrendously painful, as it involved insertion of a catheter (which as you all know is far worse for someone with Vulvodynia!). It was awful. They were unable to distend my bladder due to it spasming and I was unable to relax my muscles due to the pain. The water spilled all over the floor and it was extremely embarrassing. They told me that due to my reaction (very pained) they thought I probably had Interstitial Cystitis (also called IC, or Painful Bladder Syndrome, PBS) but that they would not be able to confirm that without a cystoscopy. I was given a non-acidic diet to follow, nortyptiline (a tricyclic antidepressant used to de-sensitize pain receptors), and it was suggested that I try hydrodistention therapy, which would involve filling the bladder with numbing medication. I was unable to do the hydrodistention because of my bladder spasming. Even when I was unconscious, there was the same problem.
So after months (approaching a solid year) of frequent appointments and very little progress, they finally agreed it was time to do an "exploratory surgery" or laparoscopy. It took upwards of two months for that to be scheduled. By the time I was having surgery it had been over a year since I had returned home for treatment of my possible cyst.
(TRIGGER WARNING--this is where it gets bad! skip ahead if you need to) Even though I am not able to have normal sexual relationships I still date occasionally, more for the social aspect than anything. I was on a dating website (OKcupid) and started talking to someone. We went on a date about a week before my surgery was scheduled. I was very drunk (I almost never drink because it is acidic, but when I do drink it affects me disproportionately, I'm very small so even a little does me in!) and he offered to drive me home which I accepted. I liked him and so I allowed him inside my house, which I've done before and not had a problem with, but I acknowledge is super dangerous and I will never do again. What it comes down to is that he raped me. As any of you can imagine it was extremely painful. He took off my clothes and threatened me with my own pepper spray (backfire! don't tell people you have it!) by holding it right up to my vulva. He also threatened me with my curling iron, which he turned on and held within centimeters of penetration. I'm EXTREMELY FORTUNATE that he only threatened me with these things and didn't use them internally, but he did rape me twice, choke me, and hit me which was just awful, horribly painful. I bled afterwards and was in horrible shock. I was extremely withdrawn and stayed in bed all the time (ironic because my bed was the site of the incident). I was unable to cry about it for weeks, just being so numb. I tried to push it to the back of my mind.
This was just a week before my surgery, so, when I went in I was still bruised from the incident. The nurse who checked me in helped me to conceal the bruises from the doctors because I told her I'd been waiting so long to have the surgery and I couldn't bear it if they postponed it. They were checking for endometriosis (luckily I don't have it), and to see what other problems there might be. They said that my tissue was normal, except for my bladder, which they referred to as "twisted and tangled" (I'd like to see a photo? Sounds weird!) They confirmed my Interstitial Cystitis diagnosis, citing that an average bladder can be distended to hold one liter of fluid, and mine spasmed after just 20 CCs. My doctor told me that she'd never seen a case so severe in anyone under forty (I'm twenty-one). The weeks following my surgery were tough, I was in more pain than before for at least a month, maybe six weeks. My doctors upped my nortriptyline dosage and offered vicodin, which I had also been prescribed previously for my pelvic pain when they could not identify the problem. Otherwise my treatment remained static. I began pelvic physical therapy and learned some stretches and relaxation techniques, which temporarily allow for some relief, but it always comes back with at least as much force. My physical therapist was forced to report my rape because she had asked about my history with sexual abuse and I had told her honestly. It's been over two months since she reported it and I still haven't heard from the police, suggesting there's an awful backlog of these cases (there is a separate sex crimes unit, and they appear to be very busy!).
I've been suffering for so long and it has worn me down so much that I can barely live a normal life. I put school on hold because of my chronic pain, although I'm supposed to be graduating this year. I didn't have a choice about working so I still work and it's basically the only time I leave home. It has taken a huge toll on me, emotionally and physically. I'm extremely depressed and lonely. It's so hard having this condition and not feeling like there's anyone else to speak to who knows just how hard it is. That's why I'm posting here. I hope that someone sees this and is able to identify with something, anything I've written. Seeing others' stories, especially those with some relief, is helping me to feel less isolated. If anyone has anything to say I'd appreciate it so much. I'd like very much to connect with some other people who know some of the struggle I've been having. It's so much better knowing that we're not alone.
Thanks so much for the read and I hope to hear from some of you!


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Re: New here! Vulvodynia, Interstitial Cystitis, Depression, Sexual Assault

Post  yoginimom on Mon Nov 17, 2014 5:41 am

Hi Jules, i'm sorry to hear you have been having such a hard time. You are in the right place with this forum, i have found it to be a really big help.

I too have had a lot of traumatic things happen in and around my pelvis area. So i can relate to your story.

One of my friends recommended that i try EMDR to help the trauma discharge from my body, and i did find that made a big difference. There are a lot of self treatment videos on youtube, but my friend cautioned me that i should go see a trained professional initially as to not trigger a full blown PTSD reaction. I followed her advice and saw someone professionally and it was great. After that i did the self treatments at home with youtube, i did have a few mild PTSD flares from it, but nothing i couldn't handle.

I thought i would pass on that story in case you know of anyone who does EMDR and could give that a try. I'd also caution that to see someone well trained initially would be a good idea, especially with a trauma as severe as yours.

i hope that helps, and that you are feeling better soon.


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Thank you Yoginimom

Post  _Jules_ on Mon Nov 17, 2014 5:26 pm

Thanks so much for your reply and suggestion. Just knowing someone has seen this and replied is helpful for me. I really appreciate it! I'm so glad that EMDR has helped you dealing with your PTSD. I still have a long way to go. I haven't heard of it before, which is good, any new possible treatment I'm interested in! I'm looking up EMDR therapy and have seen a website for therapists in my area. Just curious if you'd suggest seeing someone who specializes in chronic pain, or rape/sexual abuse, as both options are applicable? I don't have much to lose at this point, I'll try anything!


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Re: New here! Vulvodynia, Interstitial Cystitis, Depression, Sexual Assault

Post  yoginimom on Mon Nov 17, 2014 5:43 pm

Hi Jules, the therapist i saw didn't specialize in sexual assault or chronic pain, but it didn't seem to matter. She was really good at trauma stuff and that was the main thing.

I would say go with your gut when choosing a therapist. Find someone who you get a good feeling about and go with that.

This a great little video on how we hold trauma in our body and what it can look like to resolve it.

Please feel free to ask me any questions.

Take care


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Re: New here! Vulvodynia, Interstitial Cystitis, Depression, Sexual Assault

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