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» 7 months since the diagnosis
Relationship advice for women with vulvodynia  EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Relationship advice for women with vulvodynia  EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Relationship advice for women with vulvodynia  EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Relationship advice for women with vulvodynia  EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
Relationship advice for women with vulvodynia  EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
Relationship advice for women with vulvodynia  EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
Relationship advice for women with vulvodynia  EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
Relationship advice for women with vulvodynia  EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
Relationship advice for women with vulvodynia  EmptyMon Apr 08, 2019 7:54 am by Jo44

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.

Comments: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

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I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


Relationship advice for women with vulvodynia

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Relationship advice for women with vulvodynia  Empty Relationship advice for women with vulvodynia

Post  Sebby (Admin) on Sat Jan 08, 2011 4:37 pm


http://psyc.queensu.ca/faculty/pukall/relationship.htm

So what are your thoughts on this?

Myself being a single very soon to be 30 year old women...in a few hours :/ I have the usual scary thoughts of will I ever meet someone who can handle this? Will I ever have a child..shall I just date and see what happens? Due to this and my anxiety issues reaching epic proportions over the last couple of years I have not ever really attempted dating..ok little but they werent the guys for me despite the vulvodynia..

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Relationship advice for women with vulvodynia  Empty Re: Relationship advice for women with vulvodynia

Post  [Sara] on Sat Jan 08, 2011 9:42 pm

I will just lay it all out for you all. Since being diagnosed with vulvodynia over the summer (and having symptoms since April of 2010), our sex life is non-existent. Before having the symptoms, our sex life was normal and active. I had no pain or tightness whatsoever. Now, I am afraid of even the smallest amount of intimacy, because for me, it just leads to depression and anxiety. It's like I've shut that side of me completely off and I feel disconnected from my husband. It's like a domino effect. So now, my husband is probably afraid to try anything intimate with me, even kissing (yes, kissing!), because he doesn't want it to lead to me crying or feeling like I'm a broken human being, incapable of intercourse. He assures me (and so does my physical therapist) that there is more to your sexual nature than just intercourse, but still. I guess you could say I end up feeling like I can't offer my husband what most consider the highest level of affection (sex!).

I am also afraid of the whole having children thing. I do want one, and no more than two, but I am afraid of even getting to that point. First of all, I can't even have sex so therefore I'm unable to create a child right now. Second of all, I worry about the pregnancy/delivery process...if my conditions are still there, will they get worse? If I'm tight and spasming, will it hurt the baby? And if they have to do a c-section, how much worse will that make my condition after cutting through all the muscles that I've been working so hard on getting back to normal? It terrifies me, I won't lie.

I have thought about seeing a therapist, just to talk about it and get an unbiased third-party opinion...but I don't know. Blah.

Embarassed

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Post  emma on Sun Jan 09, 2011 7:26 am

hey sara,

you probably need to speak to your gynecologist about having a baby. I have heard that a natural childbirth actually helps to stretch the muscles and in some cases fixes the condition completely so i wold get some professional advice.

The best thing that you can do is to kiss your husband and trust him. He understands the pain you are in and dont feel disappointed that you cant have sex with him because Im sure he would much rather you not worry about it. I always try to think of people who are less fortunate than you and i. What is sex really? nothing in the scheme of things. Going without it is similar to a diet when you don't eat chocolate!!

There's nothing wrong with kissing. its fun and it might actually take your mind off it. Your husband wont try anything because he knows it hurts you. You and him are a team and you can conquer it together. Im single and i would love to have a boyfriend because at the end of the day they are the ones who understand more than any other person out there ( except us girls who have the condition)

There is a girl in the US who has done a documentary on this condition that she has and part of it is based around how this affects the men too and im sure that all he wants is for you to get better. When you are using dilators, if you are comfortable, the best thing you can do is get him to help you because its so hard to do it by yourself.

Just be strong and try to be positive. You know that he loves you so just forget feeling guilty and kiss your man!

i hope I've lifted your spirits. You and I and everyone on this forum, we are heroes and we cant let ourselves forget it!

lots of love

em xo

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Post  Mouse on Sun Jan 09, 2011 8:26 am

Hey Sara,

Emma is spot on with the kissing advice. I had surgery on my girl bits in February last year which resulted in more stitches than I care to remember and also triggered my vulvodynia Sad. I know this sounds weird but my husband and I found it was really nice nurturing time in our relationship. Traditional sex was out of the question. We spent a lot of time just kissing and exploring in other ways Smile When I started therapy my therapist said this is a technique they use ie no penetrative sex just kissing and exploring. It takes the pressure off you and him, he won't want to hurt you.

I'd really recommend having a chat with someone. I know I've said this before but there is so much worry and it can be overwhelming and you will get homework!

Take care.


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Post  Sebby (Admin) on Sun Jan 09, 2011 9:48 am


Hi Sara

I know its difficult but for the time being do try to kiss, cuddle etc whatever you can do that does not cause pain. I have never found that clitoral stimultion causes pain so I would also get into that to help revive your sex drive and keep close to your husband.

I can understand the guilt and that it makes you shy away from any intimacy. Its like as soon as you start kissing etc the thoughts at the back of your mind are yelling.."what if he wants sex" "you cant do it anyway" "you are failing him" try to block these thoughts by just concentrating on what you are doing at that very moment. Have an agreed penetration ban so he is aware that you can do anything but that (what ever does not cause you pain)then just enjoy the rest as much as you can knowing there is no pressure for you to have penetration.

As for the baby thing, deff talk to a gynea about this. This artical may be useful

http://www.vulvodynia.com.au/articles/017.html

Take Care

xx

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Post  [Sara] on Tue Jan 11, 2011 3:49 am

Thank you all so much. I know it's not the end of the world or anything but sometimes it really does feel like it. pale

Thank you for the advice and the article at the end; I will definitely read it. I do feel broken, not just physically but mentally and emotionally as well. Sometimes I just don't feel like the same person I used to be and even the few times we do kiss (and not just a good-bye or good-night kiss, but sexy kisses Razz ) I just feel like an empty person, just a body engaging in an activity with no emotion. And I do hate it. I know the first step to getting that side of me back is to just let my guard down for once, and not end up being upset and depressed that I can't have sex but instead be happy that my emotions are back. I don't even feel attractive anymore (well, mainly sexually) and I have cute lingerie that I used to love but the last time I put it on I just felt weird. I just want everything back to the way it used to be.

I'm so glad I found this forum! cheers

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Post  Sassymel on Mon May 09, 2011 10:02 am

Hi Sara,

Boy do I know the feeling. I've been with my partner 4 years and we're engaged. we really only got a year of great sex before I got Volvodynia Sad I'm pretty sure I've been through the worst of it and slowely coming out the other side, but we still don't have a lot of penetration sex.

If we do, I often end in tears as I have to stop him part way though. It absolutly breaks my heart. But I know that in doing that it's only scaring him into stopping initiating sex. But I DONT want him to stop! As much as possible we are intimate in other ways. It can be easy to be too tired but I try so hard to get in the mood for him because it's not just about me! Plus once I get going, it's easy to be in the mood Wink Sometimes we just lie together naked, skin on skin. Kissing and touching and depending what you're comfortable with, oral sex can often help keep the men in our lives fairly happy. It's not just about the sex, it's the intimacy of sex that can make a difference. I read somewhere that men need sex to feel intimate and women need to feel intimate to have sex...explains the men are from mars, women from venus a bit really...

Anyway, by being intimate in other ways this helps me to feel close with my partner and for him to feel close and loved in return. The last thing I want is for him to ever think I'm not interested because I'm loosing attraction - that's not the case!

For a while there sex became so numb, I really didn't feel a lot and that scared me like crazy. Occasionally that can come back and I think the reason behind it is because we want to avoid the pain we tell ourselves we don't need/want sex, it's like we completly switch off. It's nothing about how attractive the person is, it's all about our position on sex and the associated pain I think. It wasn't until I started using a vibrator as part of my physio that I reminded myself how good an orgasim felt. It had been a while! For a long time I was the least bit interested in masterbating, but by making an effort to do that comfortably, it all came rushing back.

So it's kind of still frustrating because my sex drive is back, but I still can't have sex...but the idea is to continue with going about it in others ways until the time it's ok again. Personally I've decided to see a psychologist to help me deal with the issues in my head that have me in tears in the bedroom still from time to time. If I can deal with that I believe I can better love myself for who I am and get through (and not burdan my partner so much with my head deamonds!) I'm also keen to bring him along to some sessions as I feel for him a lot - this affects him as much as me, we're in this together, but it's obviously not something he can talk to his mates about haha! So talking would be good for him too...

Hope my experiences help you a bit and give you more to think about Smile

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Post  itchyandscratchy on Fri May 13, 2011 3:48 pm

The guy I was in a relationship with before I developed all these problems was never that big on PIV sex anyway, so it hasn't affected the relationship much for him I guess. Now that I can't do it I'm obsessed with it, however. Ha! Rolling Eyes

But yeah, anyway, I think it's definitely possible to have a relationship with the right person while suffering with vulvodynia, but it could definitely makes finding someone who's right for you more difficult. But there are all kinds of people out there, not all men need to put their penis in your vagina to feel intimate or whatever.
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Post  Sassymel on Fri May 13, 2011 8:42 pm

Yes I completly agree, sorry, by "sex" I didn't necessarily mean penitration, not sure if I was very clear! More so the wider meaning of the word, being sexual in general Smile And of course, every individual and relationship is different.

x

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Post  Sebby (Admin) on Sat May 14, 2011 9:39 am


I got the book "Let Me Count The Ways, Discovering Great Sex Without Intercourse" Marty Klein & Riki Robbins..I should really start reading it lol

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Post  itchyandscratchy on Sat May 14, 2011 3:40 pm

Yes I completly agree, sorry, by "sex" I didn't necessarily mean penitration, not sure if I was very clear! More so the wider meaning of the word, being sexual in general Smile And of course, every individual and relationship is different.

Fair enough, I wasn't sure as it's a common enough assumption, and one that hurts our relationships in particular, so just thought I'd clarify. Smile
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