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» I think I've developed vulvodynia?? Please help!
Yesterday at 9:10 pm by Necromeowncer

» MY STORY & Vestibulectomy 2/8/17
Yesterday at 12:38 pm by Mel T

» New w/ Secondary Provoked Vestibuldynia
Sun Oct 22, 2017 3:47 am by Birdy

» Newly diagnosed
Sat Oct 21, 2017 9:50 pm by sarisbaris

» Prednisone Injections?
Wed Oct 18, 2017 5:07 am by sarisbaris

» Has anyone had continued success with gabapentin or Botox injections?
Wed Oct 18, 2017 4:47 am by sarisbaris

» Recent "Poke" Pain - So Confused/Losing My Mind
Wed Oct 18, 2017 2:37 am by sarisbaris

» What is Vulvodynia?
Tue Oct 17, 2017 11:57 pm by Jenjen

» CURED FROM VULVODYNIA - PAIN FREE FOR 2 YEARS
Mon Oct 16, 2017 2:22 am by Sagewoman

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

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Nine years of pain

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Nine years of pain

Post  Guest on Fri Jun 10, 2011 6:51 am

Hi , I am so glad I found this site. It is great to feel you are not alone. I have vulvodynia and have had it for about 9 years. I have tried Dermatologist (she made me feel it was in my head) and gynaecologist. My husband and I have come to the stage of marriage counselling. He has been a fantastic husband but can only put up with so much. We stopped having sex years ago, probably because it all became to hard. Looking back I think it started (if it is a nerve thing) when we picked up our adopted son from India. We had to carry him around everywhere and I found myself become very week from the hips down to the feet when putting him down or picking him up. Maybe some nerves were damaged. Our marriage counseller is versed in vulvodynia and has lots of contacts for me to look into. For the first time maybe I can get some relief. I only have pain with penetration and pap smears. I hope she will be able to help us because I don't want to lose my husband and want to get the intimacy back with my husband. [b]
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Re: Nine years of pain

Post  Sebby (Admin) on Fri Jun 10, 2011 7:28 am


Welcome to the forum

Hope you can find the support and advice you need here Smile

Sorry its such a quick welcome reply...I gotta rush to work...speak more soon


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Hi there

Post  Aussie on Mon Jun 13, 2011 11:44 pm

Hi Jules,

welcome to the forum. You will find bucket loads of info and support on here. Sorry to hear of your 9 year struggles so far. I noticed you are in SA. Have you been in contact with Marek? www.vulvodynia.com.au the case studys there should give you some hope.

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9 years of pain

Post  Guest on Tue Jun 14, 2011 5:16 am

Thank you so much Aussie. Will be reading with serious interest.
Thanks again.
Jewelsistas

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Re: Nine years of pain

Post  jules on Fri Jun 17, 2011 4:33 am

Welcome Jewel, sorry you have had a tough time. You're in the right place. I have been married for 21.5 years. I have had V for 2 years. It does put a strain on the relationship. My husband is very supportive. But, i do not want to be intimate ever. I see a therapist and he chooses not to (refuses). We are doing better than we were..in my opinion. He is very content in the relationship as long as he gets some type of sex once in a while...does not have to be intercourse. I could live w/out that forever...that may become a problem down the road. ha ha! I pop in and out of this forum. These women are a wealth of info. I'm sure you are too. Feel free to share what has worked and not worked,

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9m years of pain

Post  Guest on Thu Jun 23, 2011 4:52 am

Hi Jules,
Well I have decided to get more proactive about this condition. I have been in denial for some time and my marriage is suffering. I went to our marriage counseller today on my own. I have to face facts my husband is nearly ready to walk out. I know it takes two. He has got a lot of faults when it comes to communication etc. but I have a double whammy. I was sexually abused as a child and wonder if this has contributed to the fear of sex and caused this condtion to evolve. He has one foot ready to leave the marriage according to her. I am so fearful of being left. He has a chance of meeting someone new and having a great life. What about me. Who will put up with my sexual abuse hangover and vulvodynia. I am crying at this moment. She keeps saying not to blame myself, but how can I not. He wants sex and I'm not able to give him what he wants. He is not a very inventive lover, so he can't see any alternatives.
It is good to have this forum to talk to as I don't want to burden friends as they wouldn't understand this like everyone on this forum does. Sad

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Re: Nine years of pain

Post  Mouse on Thu Jun 23, 2011 10:33 am

Hey there, does your husband know about your history? Mine story is fairly similar. I've only faced up to it recently and I've now told my husband. It changes a lot. I thought once I got it out it would make everything ok. Well I think it's more of a process. I just got angry with everyone. I still can't face my family and I'm pissed off that I've taken it into every relationship. I'm really angry that I've lived this half life with no sexuality.

I don't think it caused my vulvodynia though but I found once I had V. I couldn't hold onto all my secrets. Telling my husband explained a lot to him. We don't go to therapy together because I don't want to but I think that could be really helpful to you. The abuse wasn't my fault I was a child, you know it wasn't yours. Reclaim your life hon. Go to therapy with him and work on finding some alternatives.

xx.

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Re: Nine years of pain

Post  Zazu on Thu Jun 23, 2011 6:07 pm

Hey there,
I just wanted to say that it's such an important step that you both took to find a counselor together. My partner and I are also seeing one. We went for 'sex therapy' but it's ended up being more about the dynamics of our relationship and after about six months we're only now getting to the 'sex'part. Our therapist helped us see v. as a challenge that, if we can work through it, will help us work through those childhood hangovers as well. My advice would be to continuing seeing the counselor together but find your own therapist, too. It sounds like a lot, but I think if you show that commitment to your relationship to work through your own struggles, it will mean a lot to your partner. The other thing you might want to consider is seeing a couples therapist who also does sex therapy (I don't know if yours does or not), but that might help you both start sharing intimacy sooner, while you continue to work on your relationship.
I don't mean to do things you aren't comfortable with, but to start exploring things that feel good in a safe space, guided by therapy.
There's a really good author called David Schnarch who has two books that might be helpful called The Passionate Marriage and Resurrecting Sex. Here's some info. Hope this is helpful:
In 1991, David wrote the landmark book, Constructing The Sexual Crucible: An Integration of Sexual and Marital Therapy (W. W. Norton & Co.), now used in clinical training programs across the country and read by therapists around the world. The Crucible Approach® is widely regarded as the most sophisticated integration of sexuality, intimacy, spirituality, personal development, and marital therapy developed to date. His second book, Passionate Marriage: Sex, Love, and Intimacy in Emotionally Committed Relationships (W. W. Norton & Co., March 1997, Owl Books, 1998), is a perennial best seller, offering the general public his revolutionary approach in a pragmatic and easy-to-understand form. His third book, Resurrecting Sex: Resolving Sexual Problems and Rejuvenating Your Relationship (HarperCollins, August, 2002), offers hope to millions of normal couples and singles who have sexual problems.

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Re: Nine years of pain

Post  Sarah001 on Thu Jun 23, 2011 8:27 pm

I can completely empathise, my partner of 13 years left me about 6 months into my V problems because it was "one health problem too many" as I have other painful problems, he also threw it in my face during an argument that I have too much baggage and it made him want to leave me before the V but the V was the final nail in the coffin. My "baggage" is of an abuse kind too, I had a man attempt to abuse me when I was 12 and I managed to escape the situation and did what we're always told to and told a responsible adult. The adult knew I was telling the truth but then had her mind changed by the predator and didn't remove this man from my life so he relentlessly bullied me for years after for being brave enough to tell the truth. It led to me not trusting anyone, not being very sexual and feeling totally destroyed that it had been allowed to happen even after asking for help (at 14 I was contemplating how to kill myself while my friends worried about boys, make up and school discos) and I'm pissed off that I carry that around with me all the time and do take it into relationships so I probably do have a bit of baggage! I can't offer much advice about therapy as I haven't had any despite probably needing some but what I can say is if he does leave you it isn't the end of the world, I thought it would be and was trying so hard not to get dumped but if it happens we carry on, we try and find an answer to our pain whether it's meds or physio or whatever it is and we move on. One positive thing for me is not having the constant pressure of sex, I couldn't manage sex then and can't now so not having someone always hovering around waiting for a hand job or a blow job or trying to make me have sex is actually very nice. I know it's not what you want to hear but if he leaves it isn't the end of your world, I'm living proof if a man leaves because of lack of sex it doesn't finish us girls off.
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Nine years of pain

Post  Guest on Fri Jun 24, 2011 4:32 am

Thankyou for the lovely replies. I talked to him last night. He has really shut down. I have decided to be more affectionate towards him to bring him out of his depression he suffers because of this. I have also written a letter to him, even though I have this condition, I have needs and I need for him to start treating me like a wife not a mother/cleaner/cook. It will be a slow process, but surely he can be inventive in the area of intimicy while I try and find a solution to my pain. I usually only kiss him when he leaves for work but I hugged him this morning. I think if one of us changes the other will follow. It was funny my son said how come you hugged daddy and I said why not. That is how unused my son is from seeing us affectionate to each other. I have also told him foreplay doesn't have to start in the bedroom. Saying nice things, hugs, a look all gives a partner some feeling of love and that is all we all want. We have another appointment next week, so see how we go. Will be a long process I think. And I appreciate the great replies from you all.
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Re: Nine years of pain

Post  Mouse on Fri Jun 24, 2011 4:45 am

You are right! Love is a doing word. I've just read a book called Staying in Love by Robyn Salisbury. She's a sex therapist and runs the practice I go to. There are some great ideas, she's incredibly intuitive. Some of the letters from her clients I could have written myself.

Keep up the good work love!

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Re: Nine years of pain

Post  jules on Sat Jun 25, 2011 12:39 am

So glad you are continuing on with the therapy. It's kind of strange for me to work on my marriage alone. Two years ago, i told my husband that i was confused about the marriage and not sure if i wanted to be married. A month later, my V started. I have had so many docs and psychologist ask me if anything was going on in my life before my pain started. Well, I had been unhappy for years. But, i think i finally realized it when i finished my master's program. I had escaped to the books for three years. Then i all of a sudden realized i wasn't happy. My husband begged me to stay, even though i never said i was leaving. he changed a lot and is a much kinder person. i started therapy over a year ago. he always refused in the past when i brought it up. he still has no interest because he doesn't believe in bringing outside people into his business, i guess. so...here i am going it alone. i am not feeling that way anymore. but, i recently realized that i have a lot of anger and resentment toward him. my therapist is helping me with my communication. she also wants to help me w/ intimacy. now, when i hear intimacy, i think of sex. apparently intimacy is only 15 % physical. i don't like to get close to him because i'm afraid he'll get turned on and want sex. sex is not always painful for me. but, i am totally not interested in sex. it's got to be my anti-depressants. it's also the fact that i have completely lost that spark. that happens after years of marriage and after years of anger and resentment. he's really a very supportive good guy. don't really know what i'm getting at, but it feels good to write it down. therapy can be very helpful, even if you go it alone. it's so nice to have someone give you feedback...someone who is nonjudgmental and objective. so glad your husband is willing to do the therapy. i totally understand your fear of losing your marriage. you can't control the decisions he makes. you can work on you and work on your marriage. men feel rejected when we don't want to get close. they take it personally, just like we would. it's not your fault either...it's no one's fault. communication is the key. talk, talk, talk! so glad you are reaching out w/ a hug. that can go a long way. we all need to feel needed and loved. when i show more affection to my husband, he seems to feel so much more secure in our relationship. Relationships take time and a lot of work. I met w/ a psychologist who deals w/ people w/ chronic pain. he talked about the pain and how it won't go away until we deal w/ all the other things in our lives causing stress....this will help your V too. good luck.

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Nine Years of Pain

Post  CJ on Sat Jun 25, 2011 3:00 am

Hi Jewelsistas,

This is CJ, my wife has been going thru vulvodynia, having pain since 1999. Any man that doesn't & won't except his wife medical problems and won't stay by her side to me isn't being fair, loving to his mate/partner/wife.

If you read the input I have put into this forum, you'll see that I feel the 1st & most important is my wifes health & mental attitude. She needs my support and I do everything I can to give it to her & be there for her.

Yes sex/intercourse is important in a relationship. But not if it hurts either person.
When we marry we're accepting our partner for life, and all that comes with it.

Do we ever disagree on things, of course don't most couples. But being there for a person we love is very very important.

I hope you find a cure for your v condition & I hope your husband learns to love you with out making you feel bad over your condition it's not your fault. It's just like heart trouble, kidney trouble, cancer. It's just a medical condition that can strikes anyone. Male or female. The Pudel nerve is in all or us.

Good Luck.

Sincerely,

CJ

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Nine years of pain.

Post  Guest on Thu Jun 30, 2011 2:10 am

Thanks so much for the replies.
We had a session with the marriage counseller today. I was so angry when I first went in. I feel like I am in limbo. Does he want to stay or go. He is a really bad communicator. She is a sexual counseller too. My next session on our own she will be giving me advice on therapies and people to see for vulvodynia. We got to a calm point (with her help) Even though vulvodynia is a crux in our marriage, my husband has a lot of changing to do. He is hooked on antidepressants, alcohol to a degree and is so closed emotionally. (maybe some of this is due to abscence of sex and has caused his depression) but if he communicated better maybe this wouldn't have come to a head. We are doing an intensive all day course this Saturday and next Saturday on communication in relationships. It is costing a fortune, but as she said if we both went to a lawyer, we'd be paying more for their fees just to write a letter. I would much rather spend the money on us trying to work things out. And CJ, wow what a supportive man you are to your wife. Good on you.
I hope we get through this and I am put onto the right people to fix my problem. Jewelsistas

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9 years of painn

Post  CJ on Thu Jun 30, 2011 2:36 am

Hi Jewelsistas,

Thanks for the nice comment about my being supportive to my wife.

Now to the subject of your therapy, whether with or with out you hubby, you need to remember, your condition is a health issue, not something that came up because you did anything incorrectly. I hope your hubby realizes it could of been him that had a health issue of some kind that would require your being understanding and supportive.

If he's going to hid in booze or drugs, even if a doctor prescribed them, it's not going to help him deal with things properly nor help you get the support you need. I hope for you both, the theraphy helps and you're able to work thru the lack of communication problem,
and begin to talk & have a healthy marriage. A healthy marriage w/o sex is very possible, esp. when it's due to a health issue. No woman should have to endure pain having
intercourse, just to satisfy her partner. I don't feel a woman having the v problem is in the mood to have any type of sexual activity when she's having burning etc. caused by her condition. I know my wife doesn't & I understand and respect that & her.

To me, a husband should help his wife find the best doctors possible that they can afford, and try to get the condition managed & if possible cured, so that she the wife
has her mind & body to enjoy again. That doesn't always include sexual activities again
because if the condition isn't cured but is just managed/surpressed, then it's not fair to
try & convince the woman to endanger her body/health.

If he's unwilling to talk this out, just continues boozing & taking pills. To me, if I were you
I'd ask myself am I better off with him or without him. Being happy alone is alot better than being misreble with someone.

Sorry if I wrote a book here.

Good luck & my wish for you is you find a cure & that you're marriage is saved if that's what you want.

Sincerely,

CJ

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Re: Nine years of pain

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