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» Acupuncture advice please
Today at 2:25 am by ryn207

» New and need some help
Today at 12:49 am by Sad

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

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

» MAY HAVE FOUND A CURE- PLEASE READ
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

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

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MAY HAVE FOUND A CURE- PLEASE READ

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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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

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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 …

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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 …

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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 …

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my rock bottom, psychological effects of vulvodynia, I told him he can leave me

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my rock bottom, psychological effects of vulvodynia, I told him he can leave me

Post  renegade_magdalena on Sat Feb 03, 2018 5:45 pm

I apologize if this is a long post.  I don't really have anyone to talk to.

I turned 29 a couple of days ago.  I can count the times I have had pain-free sex in my life on two hands.  I first had pain at age 13 when I started using tampons.  When I first had sex at age 20 I realized it was a problem.  I've since seen at least 6 obgyns as well as a physical therapist.  I was diagnosed with a vaginal septum, which is skin that was dividing my vagina in half length-wise and causing pain, as well as a chronic but symptom free bacterial infection, both of these may have caused the pain.   I had surgery to remove the skin in 2012.  I've tried lidocaine, various ointments prescribed by a vaginal pain specialist.  Things have gotten better and worse.  

I'm tired of experimenting on myself and being in pain.  I'm done.  I hate it, I hate my sexuality, I hate my womanhood.  I'm tired of crying every time I have sex with my boyfriend of 4 years, not from pain, but from shame and guilt that I'm "not pleasing him" god what have the social expectations of being a woman affected me, the "need to please men," etc.  So I am racked with guilt.  

To the point of, I have not had vaginal intercourse with my boyfriend in 9 months.  I have also relapsed into anorexia, I believe partly due to the stress of feeling out of control with my body/ sexuality.  I feel so horrible.  My boyfriend is incredibly supportive, a saint, honestly.  Yesterday he finally cracked.  He got really upset when I asked him to not talk about sex so much.  He says he doesn't know what to say, like he's walking on eggshells (he probably is).  

This is my rock bottom.  I asked him if he wants to leave me, I told him I would understand if he did.  He said "babe, I am with you here for the long haul."

I honestly don't know if I even want to ever have sex ever again.  

Also, I am a psychotherapist.  So I know.. that a lot of this is relational and psychological and that I would benefit from therapy with or without my boyfriend.  The problem is that I'm hesitant to go to therapy because with my eating disorder, I'm worried that it could become an ethical dilemma if someone in the field knew about it, and that it could affect my career. (this is a complicated but realistic concern)

I just want I guess support, and maybe to hear if anyone has gone through similar things with partners.

renegade_magdalena

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Re: my rock bottom, psychological effects of vulvodynia, I told him he can leave me

Post  Olivia3110 on Sat Feb 03, 2018 6:50 pm

Hey!

I’m really sorry you’ve had to go through all this and I’m guessing you feel really alone. I’ve been there too and I couldn’t believe how many other women suffer from this too until I discovered this site.

My boyfriend sounds very similar to yours (we’ve been together three years) and he’s amazingly supportive but I know this condition has been hard for him too. I think it’s less to do with sex but more to do with being rejected in terms of intimacy and he hates that he’s putting me through pain.

Have you tried any treatments or been tested for anything else? As I’ve come to learn that vulvodynia is such a broad term. I haven’t yet been cured or anything like some women have but I’ve learned how to manage the pain loads more than I did in the beginning.

Sorry if this has been a really long response!



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VVS

Post  VVSSufferer on Sat Feb 03, 2018 6:53 pm

Hey girl! I'm so sorry that you are going through this.
Have you had the vestibulectomy? That's the last option for lots of women and it has a high success rate.
Does it only hurt at the entrance of your vagina? If so, it may be too many nerves in your vestibule (surgery is the only cure for this, as far as I know) Since you've had pain since you were 13, I'm guessing that's it.
Also you may have vaginismus as well, due to the trauma of the septum, Botox and dilation under anaesthetic can usually deal with this.

I know you feel bad but you boyfriend obviously loves you and you have all of us on here too Smile
Feel free to message me privately.
xxxxx

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Re: my rock bottom, psychological effects of vulvodynia, I told him he can leave me

Post  renegade_magdalena on Sat Feb 03, 2018 8:18 pm

Olivia3110 wrote:Hey!

I’m really sorry you’ve had to go through all this and I’m guessing you feel really alone. I’ve been there too and I couldn’t believe how many other women suffer from this too until I discovered this site.

My boyfriend sounds very similar to yours (we’ve been together three years) and he’s amazingly supportive but I know this condition has been hard for him too. I think it’s less to do with sex but more to do with being rejected in terms of intimacy and he hates  that he’s putting me through pain.

Have you tried any treatments or been tested for anything else? As I’ve come to learn that vulvodynia is such a broad term. I haven’t yet been cured or anything like some women have but I’ve learned how to manage the pain loads more than I did in the beginning.

Sorry if this has been a really long response!



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I have been diagnosed with Vestibular Vaginitis. So yea it's just the skin of the vestubule is inflamed, painful, only when provoked though. I was on what is called GABA cream/ treatment for a long time, which seemed to work quite a bit. I was also in physical therapy, and I've had success with lidocane before sex. Honestly that's all that I want, is to manage the pain. I feel like I got frustrated because it wasn't "totally pain-free" when in reality it was a hell of a lot better than no sex at all. I just sort of rage quit. I actually just called my best friend and cried on the phone to her and told her everything lol, so I guess I'm going to give this another go with my boyfriend, try again, I mean, I've never been a quitter.

So thank you so much for the response <3

renegade_magdalena

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Re: my rock bottom, psychological effects of vulvodynia, I told him he can leave me

Post  renegade_magdalena on Sat Feb 03, 2018 8:22 pm

VVSSufferer wrote:Hey girl! I'm so sorry that you are going through this.
Have you had the vestibulectomy? That's the last option for lots of women and it has a high success rate.
Does it only hurt at the entrance of your vagina? If so, it may be too many nerves in your vestibule (surgery is the only cure for this, as far as I know) Since you've had pain since you were 13, I'm guessing that's it.
Also you may have vaginismus as well, due to the trauma of the septum, Botox and dilation under anaesthetic can usually deal with this.

I know you feel bad but you boyfriend obviously loves you and you have all of us on here too Smile
Feel free to message me privately.
xxxxx

No, I'm very skeptical of the vestiulectomy and am incredibly hesitant to have it done. The surgery that I had was just to remove the internal skin from the septum. Do you see a lot of success with it around here? I believe at this point my pain is very psychologically ingrained, and I'm worried that would affect the long-term success of the surgery.

Oh and yes, I do have vestibular vaginitis, like you said, inflamed/ irritated and painful skin at the vestibule, when provoked. I don't have vaginismus, which is good at least lol.

I've heard about the botox treatment before, have you heard of folks having a lot of success with this before?

thank you for your kind and thoughtful response

renegade_magdalena

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Re: my rock bottom, psychological effects of vulvodynia, I told him he can leave me

Post  fairlight10 on Sun Feb 04, 2018 10:34 am

Hi renegade magdelena. I also have vulva vestibulitis have been on 20mgs Nortriptyline for nearly 6 years. It is keeping comfortable. Problems in the bedroom are inevitable. I have been married for 42 years and intercourse is not the only thing you can do. In fact I believe it is called outercourse. Talk to your boyfreind about what else he would like. I read a post on here some years ago and the mature lady was very frank. I agreed with what she said and it changed my outlook on sex. So experiment and it dose not always have to end with intercourse.

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Re: my rock bottom, psychological effects of vulvodynia, I told him he can leave me

Post  anon99 on Tue Feb 13, 2018 1:17 am

Hi, I was saddened to hear your story. I just wanted to reach out because I have been through something similar and we are close in age — I’m 26. I suffered with vulvodynia from 21 to 24. I’m fortunate to report that I’ve had no symptoms in the past two years and wanted to tell you what worked for me.
Are you taking a birth control pill? Once I stopped taking the pill, my pain went away. It took me way too long to make the connection. Thought I’d share my story because there’s always a small chance it could help you or somebody else.
Good luck and stay positive.

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Re: my rock bottom, psychological effects of vulvodynia, I told him he can leave me

Post  michelle_b on Tue Feb 13, 2018 3:54 am

Hi renegade magdelena,  I'm so sorry to hear that things are not going well. Our stories are very similar.  I also had a vaginal septum that was surgically removed and have been diagnosed with vestibulodynia.  The doctors I have seen recently are recommending a vestibulectomy as my last resort.  I'm 31 and went through years of physical therapy, half a dozen doctors, and pretty much every non-surgical option available.  Not necessarily because I was opposed to surgery at the time but because each doctor I saw diagnosed me differently.  It was a roller coaster of emotions and pain.  By the end of so much experimenting I had/have a lot of trauma, anxiety and fear.  After hitting rock bottom, which was when I having suicidal thoughts to escape the chronic pain, I went to see a psychologist and stopped all treatment.  That transition didn't happen immediately I was in rock bottom for a while before I got the strength and clarity of mind to make a change.  At first my husband had a hard time with my decision to stop treatment, he felt like I was giving up.  After I explained to help that I couldn't go on like this he accepted it and adjusted.  I just wrapped up 2 years with a psychologist working through the trauma and while I don't feel "cured" psychologically I'm in a much better, stronger place.  I know you have reservations but after my experience I highly recommend going to talk to someone.  

It sounds like you also have a wonderful man by your side.  Your description of your feelings towards and interactions with your boyfriend are so similar to those I have had with my husband over these past few years.  It is extremely stressing to a relationship.  We have been married 6 years and have never had vaginal intercourse.  I have felt so much guilt and shame.  The implications of the social expectations you mentioned are very real and I struggle with how negatively they affect me.  My husband and I have also been through the "walking on eggshells" phase.  We only recently got through it after counseling helped me work through anxiety, fear, and dealing with triggers.  Being open with my husband and talking to him (even if he didn't know what to say back) seems to help our relationship and keeps us from getting isolated from each other.  Don't get me wrong, we have been through some really tough times but talking helps.  

The combination of seeing a psychologist and taking a long break from treatment has been very helpful to me and hope you consider both.  I agree with fairlight10 who suggested trying outercourse.  I found that if my husband and I agreed on just outercourse beforehand it toned down my guilt and anxiety during the moment.  It actually allowed us to connect more because I don't feel so much pressure.  I hope the support you are getting helps.  Good luck and hang in there.

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Worth a try...

Post  davesjen on Tue Feb 13, 2018 6:48 am

Hi, I’m so sorry you’re going through this, I know and feel your pain...have you tried Vagicaine?? I honestly wouldn’t be here without it....when my pain started, I was prescribed Lidocaine gel, which really didn’t help much, even though it was a prescription...in the meantime, I discovered Vagicaine at Target! I was so happy to find it, and at the same time, so angry that with all that modern medicine supposedly has to offer, the most life saving relief I’ve found has been on my own at my local Target store...under $4. a tube....I NEVER leave home without it...love and blessings...

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So Sorry

Post  bearferret on Tue Feb 13, 2018 1:20 pm

I feel for you, I went through three years of pain, was getting nowhere, tried all sorts, Dr didnt want to know, so I went to a GUM (Genital Urinary Medicine in the UK) Clinic, embarrassing but the best move I ever did the Dr there was so supportive, said if I had gone straight away he could have sorted the pain within weeks, instead it took three months, but that was four years ago and I have been pain free ever since. I was at the point where I couldnt wipe are a pee for crying with pain, I couldnt ride (I have two horses) because just that movement caused pain. It was a bit of a radical treatment, but it worked for me. He put me on a course of Amytriptiline (not sure on spelling) and anti depressant that wasnt used as an anti depressant but to retrain the nerves, ramped up amount then ramped down and never looked back.

I sincerely hope you find the right help x

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re:my rock bottom

Post  clencher35 on Tue Feb 13, 2018 4:17 pm

I'm moved by your post today.  I've had it a long time.  This is what I'm thinking these days.  I don't know if you can post a link here or not, but on the 'Better Humans' site there's a post called 'Watch Your Ass', about the clenching of the inner sphincter muscle and mind connection.  Which would explain why no amount of stretching, pulling whatever works as the cause is more primal?  Also why certain meds seem to help. Botox has come up recently to override the clenching.  My old boyfriend from years ago when I got this (nearly died from IUD) offered to even pay, but I'm nervous about it.  Certain breathing seems good. Oh well, I try this link.
https://betterhumans.coach.me/watch-your-ass-an-unusual-shortcut-to-full-mind-body-relaxation-dad9d65affe5

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So much support.. thank you <3

Post  renegade_magdalena on Wed Feb 14, 2018 6:43 am

Thank you so much to everyone for your sincere replies, support, and advice. My boyfriend and I have talked a lot since then and I've found some new ideas to try to help with both the medical and emotional sides of the pain. I'm going to try the ideas that you all have suggested.

Most importantly, I'm not giving up!

Also, I've realized that... some intimacy is better than none at all for me and my boyfriend. I tend to be an "all or nothing" type of person. So, less "successful" intercourse as well as playful outercourse are better than nothing.

I'm really moved by the support here and from each of you.

renegade_magdalena

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Re: my rock bottom, psychological effects of vulvodynia, I told him he can leave me

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