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» Finally found a place for me...
Today at 4:08 am by mtsp

» UK Vulvodynia Clinics
Yesterday at 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

» There is hope after all!!
Wed May 16, 2018 2:50 am by Cbrimer28

» Getting to the point of wanting to End Everything ADVICE NEEDED
Mon May 14, 2018 6:49 pm by fairlight10

» Looking for advice!
Thu May 10, 2018 8:50 pm by KB365

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

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What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 5

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


Help to better understand my wife's behaviors

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Help to better understand my wife's behaviors

Post  Supportive Husband on Mon May 06, 2013 8:29 pm

My wife and I have been together for 10 years (Married eight) and have a 8 year old at home. She was diagnosed with Vulvodynia in March of last year, but had been having pain since February. And we now think that she was missed diagnosed with chronic yeast infections a couple of times in prior years. Our relationship has been great (up to a recent big challenge), but her having to deal with this is awful for the whole family. Her type is the generalized type where it hurts to sit for extended periods of time, walk, or just general movements can create pain that is either pinching/stabbing or burning in nature. We have had intercourse once (bad mistake on both our parts) about a year ago. She seems to be doing better than she was about six months ago, but generally has some pain more days than pain free. She's taking maximum dosage of two different nerve pain drugs, seeing a specialist OBGYN, getting pelvic physical therapy, acupuncture, and tying some mindfulness techniques.

She is an at home parent and was really active with exercise and at our child's school. Prior to this happening she was at a high point emotionally, so this was really a hard fall. With this and being at home she feels trapped and isolated, and to make things worse I need to travel about 20% of the time for work. With all that going on, she ended up having an affair online and then eventually having a few dates with the guy. I just found out a few weeks ago and have been devastated. She tells me that it wasn't about me or us but about how isolated and lonely she was feeling. She's told me that it didn't go any farther than kissing once (because of the Vulvodynia, guilt, and just her interest), and that matters but it's still an affair.

She has apologized and we are working through it. She says she loves me and wants to be with me and that she wouldn't do it again. I love her deeply and want the same but it's obviously a hard time. So now I guess is where I'm finally get to the point of this post and my questions. It's hard for me to understand her temperament toward me as we work through this and she continues to suffer pain. I more than ever need intimacy and attention and reassurance from her but don't know if her being reserved is related to the pain or her feelings toward me. It's not good for either of us for me to be asking all the time either, and she says the right things but it's more about the actions. An example is that before I found out about the affair when we would kiss it would often be pretty open and passionate. Since I found out, we are kissing but it seems a lot more constrained on her part.

I love my wife, I want her well, and I want our family well. Help?


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Re: Help to better understand my wife's behaviors

Post  Alana3 on Tue May 07, 2013 1:50 pm

It could be both pain and affair. Maybe you should try couples therapy? No one but her would know why she is less intimate (for most of us it would be shying away from the pain- believe me its excruciating!) so you should take it up with her. Maybe she needs to pick up a hobby to get her out of the house and lift her spirits- I couldn't imagine being stuck in a house with kids and pain on top of that. But like I said, maybe you need to try therapy, this is extremely personal, and should be taken up with a professional who knows how to deal with stress, pain, and emotional issues. And it shouldn't be one sided your wife needs to know what you're hearing also.

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Re: Help to better understand my wife's behaviors

Post  Sarah001 on Tue May 07, 2013 5:41 pm

I think couselling would be a good idea too, you sound like a lovely guy who's struggling with this as much as your wife. I can't say for sure but perhaps just wanting to know she was still attractive as a woman was another driving force behind the affair, this condition does make you feel less feminine, but that's no reflection on you just how the condition makes us women feel mentally and emotionally. It's bound to take time for your intimacy to start to feel more open and natural as she no doubt feels incredibly guilty. It sounds as though she's trying lots of angles to heal and hopefully that will happen and you can both feel more normal again but in the meantime I do think counselling together would help get things out in the open and dealt with. I hope it all turns out well for you both.
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Thank you both for your replies

Post  Supportive Husband on Tue May 07, 2013 8:54 pm

We did start couples therapy last week and are committed to it. And we have been talking very openly, as we generally always have. The trust issue is a huge one now as we didn't have to worry about that before this happened. That is probably what is weighing on me more than anything as I am trying to match her words to her actions and questioning if it is all truthful.
The impact of the vulvodynia on her self esteem is definitely there. I think my wife is incredibly beautiful and I tell her that often. If anything I have to manage my frustration with what I feel can be her unfair judgments of herself vs. what I think is reality.
The attention she got from the affair though is definitely what kept her in it for the time she was. She explained to me that it was easy (no 10 years of relationship, kids, house, etc...), and something that she felt very much in control. It did make her feel attractive, wanted, and basically just someone who was giving her a lot of attention and taking her mind off of the pain and isolation. But that is all pretty hard to hear when I'm working a demanding career to provide for the entire family, supporting her on any and every treatment available, doing extra duty in the home and parenting, only to have her give exactly the attention I crave to a stranger.
But now I'm just venting... I do really appreciate the replies. When my wife was diagnosed I did all the basic research to understand what it was and what treatments might help, but I didn't jump into these blogs to better understand the impact on women's lives, their feelings, and their other relationships. Reading the other postings has helped me better understand now.

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Still struggling

Post  Supportive Husband on Fri May 10, 2013 5:37 pm

My wife had made the comment before, but in an exchange today really drove the point home. She says "I just don't care about anyone else when I am in pain, not you, not our daughter, not my mom, nobody". God I have so much empathy for what she is going through, but in the context of everything else that is really hard to hear. Is that kind of just F' everyone and everything feeling common for those of you who are also suffering?

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Re: Help to better understand my wife's behaviors

Post  Sarah001 on Fri May 10, 2013 6:48 pm

I've lived with chronic pain for nearly a decade from another condition and severe pain is just all consuming, it's not so much I don't care about others it's I have a lack of energy and just always coping with the pain that takes over to the point you just haven't got anything left to give. All you can focus on is how much you hurt and lots of other things fade into the background. It's a difficult situation because it essentially injures all parties and yet the person with constant pain just can't do anything different. My relationship broke down because of my health issues because I couldn't do all the things I used to and he wanted me to do and he eventually found someone else to do them all with instead but as much as I could see this was going to happen I couldn't put up with extra pain all the time just so he was happy so I suppose I let it happen and in a way it was a relief not to have anyone trying to push me to do things I couldn't manage even though I loved him and didn't welcome the break up. I think I'm finding being single easier because I don't have to think about someone else and their feelings which is really the same as the way your wife feels I suppose. If the pain meds aren't helping much she could try others perhaps? Some of the women on here have had good results with medication which takes away the complete focus on pain alone.
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Re: Help to better understand my wife's behaviors

Post  Kathy100 on Sun May 12, 2013 11:00 am

Yes - it's all part of it! I've never said that myself but I can understand her comment. By the end of a day when the pain was really bad I just felt like screaming, crying and had nothing left for anyone else. It's not because you don't care, it's just because there's nothing left physically or mentally. The constant pain feels relentless - my gp said the body has to use all it's resources to fight the pain & that's why you can feel so exhausted on top of everything else. You get to the point where you just don't have any more to give to anybody & just getting through the day is enough. You wonder if it will ever end. My long term relationship broke up partly due to the v (which was only provoked then - now it's generalised) & partly due to other things; we ended up not being able to talk at all. It was devastating but now I have to admit I'm glad I'm single because it's easier not to have the added pressure of a relationship with the constant feeling & guilt that you are letting your partner down.

Things that have helped me were a change of pain meds (this has got the burning under control), CBT to deal with all the anxiety & c**p & physio. It's a long haul & incredibly difficult situation for both of you - good luck.

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You both are great

Post  Supportive Husband on Mon May 13, 2013 5:25 pm

Thank you both for the really thoughtful replies. I am so sorry that you are having to deal with this also. I cared for my dad for a few years as he died from terminal cancer, and although that is a very different thing, there are a lot of parallels and similar dynamics in the relationship and communication. It's not comforting that both of you ended up getting out of your relationships and felt relief, but it makes a ton of sense. And my family's situation is unique just like yours and everyone else's. God I would like to see more attention and some kind of results for treatment. It's so frustrating to see my wife in pain and the not knowing that causes even greater stress for her and us.
I was at the pharmacy on Saturday and there was a nice woman showing new "we vibe" vibrators and balls for kegel exercises. She asked if my wife knew about kegels and if she might be interested, of which I replied and said I don't think my wife would want to be anywhere near those things as she has vulvodynia, of which the women then responded with "what's that, I've never heard of it".... tragic.

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Re: Help to better understand my wife's behaviors

Post  Alana3 on Mon May 13, 2013 5:35 pm

Stay far away from kegels! It is sad though it should be a better known disease and the sad thing is is even obgyns aren't familiar with it. Vulvodynia ruins so much its awful Sad

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Re: Help to better understand my wife's behaviors

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