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Yesterday at 9:55 am by Gaby

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Mon Oct 15, 2018 5:40 pm by mertzwl

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Sun Oct 14, 2018 4:14 pm by Npage14

» Amitriptyline Success and new-found love
Thu Oct 11, 2018 8:29 pm by megaanx

» Diagnosed recently, looking for advice
Wed Oct 10, 2018 2:30 pm by wuhujen

» Dose HAVING VULVODYNIA MEANS YOU HAVE LUPUS?? HELP IM FREAKING OUT!
Wed Oct 10, 2018 2:01 pm by pussycat

» From a concerned husband
Wed Oct 10, 2018 1:46 pm by shope610

» Had this for 5 years, looking for people who understand
Wed Oct 10, 2018 1:55 am by Npage14

» 6 year sufferer but I’ve found some hope
Wed Oct 10, 2018 1:33 am by Npage14

Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 4

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 2

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

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Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 6


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

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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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I understand

Post  lavrose on Sat Feb 24, 2018 2:45 am

Hey girl, Ive been in your shoes, I cant say it gets better..you have to learn to manage your condition. Ive had problems with my Vajayjay for about 8 years now. I also have (interstitial cystitis) painful bladder syndrome. Its sad to say, but im alone and single now, but I went thru a marriage a couple of relationships with this condition and it was a horrifying experience, to say the least. Im scarred and traumatized, and I have PTSD because of it. No one should ever have to go thru this. Im gonna link a video.. This beautiful girl, her name is Taylor. She describes the psychological impact of having this condition or similar conditions perfectly.. https://youtu.be/kjL-25omeJs


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

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