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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, …

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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 …

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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 …

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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 …

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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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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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