Vulvodynia Support
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» Hope to all my suffering ladies
Relationship breakdown EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Relationship breakdown EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Relationship breakdown EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Relationship breakdown EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Relationship breakdown EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Relationship breakdown EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Relationship breakdown EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Relationship breakdown 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 breakdown EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

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- …

Comments: 0

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 breakdown

5 posters

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Post  JemimaSurrender Thu Jul 04, 2013 10:57 am

I just wanted your thoughts on how your relationships have faired through all of this...

I've been with my boyfriend for nearly six years and all of this began about 18 months into our relationship. At it's worst, we went thirteen months without any penetrative sex, which finally ended just over a year ago and we managed to begin having sex again for about another thirteen months.

Sadly, now it seems it is returning and sex is quite painful but I bare it for him. He's been everything you could possibly wish for in a partner going through this and I will always love him for that... But now I feel it's at a point where something has to be done.

It was bad enough having to go through all of this myself wondering why it has to happen to me, but to put someone else through it too, who hasn't caused it and has done nothing to deserve it? I felt awful for it, and now that it's returning I just don't think I can put him through it again.

If he isn't there, I'll be devastated, but at the same time I almost think I'd deal with it better because there wouldn't be 'sex' hanging over me, I'd be alone, and I wouldn't have to deal with the guilt of making him live through it again. It's not healthy and I almost destroyed myself and him at the same time.

How can I put someone through that again?

I'm sure you all have similar thoughts... Care to share or offer advice?x

JemimaSurrender

Posts : 107
Join date : 2011-12-03
Age : 34
Location : Staffordshire, UK

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Relationship breakdown Empty Totally Understand...

Post  Lydia2283 Thu Jul 04, 2013 5:05 pm

Hi Jemima,
I feel like I read your post at just the right time. I've been with my husband for 5 years now and painful sex has been with us most of that time. He has been incredibly patient but once in a while he just blows up, like this morning. I had to stop things because of the burning and he said that he doesn't think I take this seriously enough, that its not just my problem but his as well and how do I expect to have children when we can't even have sex? (We would like to start a family soon.) I feel terrible putting him through all this, I'm not sure if the situation was reversed if I could be so patient! But the years of painful sex have completely repressed my sexual appetite. I hate it because I have secondary VVS, there were many years when I was able to have great sex but he doesn't even know that side of me.
How did you overcome your symptoms for a time? I've tried working with dilators and even biofeedback and it helped a bit but I don't think I was persistent enough. He also gets frustrated that I give up... maybe I'm just afraid it's not going to work. But it is really time to start pushing and pursue all options. I just get so confused sometimes I don't even know where to start.
Anyway, it sounds like your boyfriend is a loving and patient person who will work through this with you if you will let him. I wonder how we can involve our significant others more so we can all feel less helpless.

Lydia2283

Posts : 2
Join date : 2013-07-04

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Post  Alana3 Thu Jul 04, 2013 9:05 pm

If you have secondary can you have surgery? It worked wonders for me...

Alana3

Posts : 1093
Join date : 2012-09-25

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Post  Lydia2283 Fri Jul 05, 2013 1:22 pm

I've only recently learned that some people have surgery. It seems like a last resort to me. I don't have pain all the time, just with penetration and sometimes I can even get past it. I don't know if it is severe enough to warrant surgery? Happy to hear it worked for you!

Lydia2283

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Join date : 2013-07-04

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Post  jen007 Sun Jul 07, 2013 11:55 pm

Jemima,

I fully understand what you're going through. I've been with my boyfriend for just about 6 years myself now and it hasn't been easy. I have PVD, Provoked Vestibuledynia. I'm never in any pain unless someone touches me "down there." When ever we tried to have sex it hurt really bad. I still kept trying though, because I felt like I was holding him back from having a normal relationship/ sex life. We never got it in all the way and right after we were done trying I had to run to the bathroom and soak in the tub to try and soothe the pain. I was just torturing myself by making myself try to have sex. After a few tries we finally stopped trying. We went back to strictly having oral sex and it worked out just fine.

Like Alana I too had surgery this time last year.... literally a year yesterday. For me it was pretty much a complete success. I'd say I'm 95% cured of the pain. I still have one small painful area, but if I work on it consistently with dilators it's almost as if I never had vulvodynia. Now I can have pain free sex Smile 

I hope you're seeing a specialist who can help you further with treating your pain!

Good Luck!

-Jen

jen007

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Join date : 2012-11-05
Age : 31
Location : U.S.A

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Post  Takver Wed Sep 11, 2013 4:02 pm

JemimaSurrender wrote:Sadly, now it seems it is returning and sex is quite painful but I bare it for him.

I felt awful for it, and now that it's returning I just don't think I can put him through it again.

If he isn't there, I'll be devastated, but at the same time I almost think I'd deal with it better because there wouldn't be 'sex' hanging over me, I'd be alone, and I wouldn't have to deal with the guilt of making him live through it again.
Oh hon, you're having a rough time of it, aren't you. The thing that really leaps out at me is that you should not being having sex that's painful to you.

Does he know that sex hurts you? If he doesn't know, or if you downplay it to the point where he thinks it's only a few seconds of pain here or there, then you need to tell him. I know it's really hard, but you can't keep going like this, and you don't want to be putting yourself through all this pain. Quite apart from anything else, it will just increase the physical problem, as it teaches you to tense up and generally puts you off sex. A good person does not want their partner to be in pain, and will be horrified at the idea of doing anything that will cause them pain. I realise that if you've been lying about the pain, it's hard to tell him that, just as it's hard for people to admit to a partner that they've been faking orgasm. But it still needs to be done, and a sympathetic partner will understand how that sort of thing happened. The guilt is something you need to work through. Don't think that you should be thinking this way: it's understandable, but it's wrong.

However, if he knows that sex is causing you pain and is going ahead anyway, this is a very bad sign indeed. It would mean that he's sadistic and/or abusive. (I'm excluding consensual sado-masochism from this, of course. I know it works for some people, but with the sort of pain I've experienced, it's unimaginable that anyone would actually want painful sex, and I suspect it's the same for the rest of us.) Would you want to have sex in a way that was pleasurable for you but caused intense pain, demoralising pain that affects their very sense of identity, for your partner? I couldn't do that to a living soul.

I went through this for years with my ex-partner. Sometimes I would downplay how much pain I was in, partly because it's really hard to bring that up in the middle of sex, but I think mainly because he kept on pressuring me to have sex even when it hurt, or when I was half-asleep. And I was very much in love with him. I was devastated when he left, but it only took a few days before I recognised how abusive the relationship had been, and my friends have been rallying round protectively and telling me to make damned sure I never let someone do this to me again. A year later, I'm doing much better, although the whole thing messed with my head quite thoroughly, and I still end up getting flashbacks (to what I thought, at the time, was normal and loving) and having to ring Rape Crisis from time to time. I can't believe I put up with all that abusive sex for years. Now I'm in a healthy sexual relationship, with a man who wouldn't dream of causing me pain and instead gets off on giving me pleasure, the contrast is extraordinary.

What has been even more distressing is that a horrifyingly large number of my friends have also experienced sexual abuse in partnerships, particularly the ones who, like me, are disabled. It's very common, and we don't talk about it, and when push comes to shove and you are lying there in pain with a partner who just doesn't seem to want to know, you switch part of your mind off, because you don't want to think through the implications of what's happening, you just want to be making love with your partner in a normal way. And you feel guilty for "depriving" them, which is the last thing you should be feeling, they should be feeling guilty for getting off on causing you pain, but that's rape culture for you, sadly. It makes the victims feel responsible for what people have done to them.

Lydia2283, I'm really worried to hear that your husband is "blowing up" at you about this, and telling you off because you are in too much pain to have sex. That's really not good at all. And no wonder you've gone off sex!

Please be careful, both of you. If your partner knows that sex causes you pain, don't think of it as your problem if he's pressuring you to have painful sex. That's his problem. Don't think, "What's wrong with me that I can't have sex normally?" Think instead about what is wrong with a person who would put their partner through a very unpleasant type of pain on purpose in order to gain pleasure.
Takver
Takver

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