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

» Please tell me this can get better
Young with Vulvodynia STRUGGLING EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Young with Vulvodynia STRUGGLING EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Young with Vulvodynia STRUGGLING EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Young with Vulvodynia STRUGGLING EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Young with Vulvodynia STRUGGLING EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Young with Vulvodynia STRUGGLING EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Young with Vulvodynia STRUGGLING 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!
Young with Vulvodynia STRUGGLING 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


Young with Vulvodynia STRUGGLING

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Post  BlondeLawyer Mon Aug 01, 2011 9:01 pm

Hello everyone,
I am so happy I found this forum! I am a 21 year old female from Ottawa, Canada and I have been suffering from this condition for over a year now. It started with what me, and my partner, think was rough foreplay which caused a cut or tear. Unfortunately, we were so in love and lust for eachother we never stopped having sex. That was obviously stupid! But I was very young (19) and had no idea this condition even existed. My boyfriend and I have been together for 2 years now and we have been through A LOT. I have seen about 4 gynocologists and I am sticking with one who seems to actually care about my condition. My pain is centralized on the left and it hurts when the penis is inside me. Sometimes tho, I can have amazing sex (maybe once a month) and usually only when I havent seen my partner for a week or more. I think the emotional stress and depressing thoughts are the worst part. I suffered from extreme anxiety for 6 months. I had no idea that this was what was affecting me so deeply. I think I was in denial. My partner has been supportive, but there was a stage when I was just so depressed I didnt want to do anything. I was basically miserable. I had low self esteem and felt worthless. My boyfriend (22 yrs old) ended up cheating on me and didnt tell me for a year but I had some idea. I know he loved(s) me but he loves sex and cant handle me rejecting him all the time. I dont think he really understands what the condition is either. I have done so much research. I actually had surgery booked a while ago but it got cancelled while i was lying in the hopsital due to time- this was so devastating for me. After that I just stopped caring about myself, and was so negative. I didnt want to do anything. I think this was around the time my bf cheated. I understand why he did it but I am so angry and resentful at sex and him in general for making me feel like this. I am constantly struggling in my mind and I am depressed. I think he may be too young to understand and I think I may be too. I dont know what to do. I am booking a consult with my gyno asap. I just want this to be over. My bf thinks I am not attracted to him and i reject him all the time. This condition literally RUINS relationships. It has been so hard. I am taking these multivitamins to improve my sex drive. But I am not really wet and I really just dont want to have sex because it hurts. I think it is really hard to admit that. I want to be the fun, sexy, funloving girl i was when we met. I dont know what to do! Thanks to everyone in advance...

BlondeLawyer

Posts : 4
Join date : 2011-08-01

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Post  Aussie Tue Aug 02, 2011 12:57 am

BlondeLawyer,

Welcome to the forum. You have found the right place for support and advice! I am sorry to hear your boyfriend cheated. This condition can be hard on relationships. I am 22 and my Husband is 23, mine started literally a week after our honeymoon (we had pain free sex prior to this) so I can see where you are coming from. Fortunately we work around it and I have had a lot of Physical Therapy for the sex pain so it is not as bad as it used to be.

Firstly sex drive - are you on the pill or any other hormones?, artificial hormones seem to screw this up, I have recently come off and my sex drive has shot up, there is also a connection between the pill and vulvodynia, I would advise you get off it for both these reasons.

You are in pain of course you are not going to get turned on, we all have this problem, please don't stress to much about it. Concentrate on other things sexual for now ie oral and kissing etc, most men I have found are ok with this as long as they are getting off so maybe up the blow jobs Smile

Do you have constant pain or only with sex? PM me about sex pain, I have a lot of tips.

If it is only pain with sex I strongly suggest you see a woman’s health physio to assess what your pelvic floor is doing. The ability to relax this can make all the difference during sex I have found. The book 'Why sex hurts' and also 'heal pelvic pain' are good reads to get you started.

Most gyno's don't get this. I would say try physio, trigger point work (there will most likely be little knots all through your pelvic floor), if after 6 months no difference then look into a low dose anti depressant for the nerve pain (not because it is in your head)

Hopefully some of the ladies on here will come in and help with the boyfriend understanding this. I took my hubby to all appointments so he could get a better understanding. Once he saw the biofeedback machine and could see my tension level and a physical reason for the pain, he understood and has been extremely supportive.

Diet is a big one, acidic food is a nono for me, drink lots of water to keep your urine ph alkaline so as to not irritate the skin when you pee.

Then there is the whole double rinse underwear, use no soap on vulva area (this just adds to irritation)

Please do not feel alone, you are not! Things can and will get better. I have had this for 1 year and sex has gone down from 9/10 on pain scale to about 2/10 – I generally get pleasure from it now most if not all times, we just have to be careful with positions. Daily pain for me is constant and has gone from a 4/10 to a 2/10 after physical therapy however, I am having trouble getting it lower than this, we will get there!!

Claire

Aussie

Posts : 230
Join date : 2011-03-15
Age : 35
Location : Queensland, Australia

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Post  Heidi Tue Aug 02, 2011 4:30 am

I'm sorry to hear you are going through such a hard time. I remember how hurt and confused I was when I started having vulvar pain. I hope you find quick healing and don't have the long term battle so many women go through. I am also sorry you are hurting from having your boyfriend cheat on you. I felt so much guilt about denying my first boyfriend a normal sexual relationship, yet I knew emotionally I needed to be in a monogamous relationship. If he was going to be with me he had to be with me fully.

Anyway, here's some of my early story. . . I was 19 when I started having severe vulvar pain. My ex-husband and I met a little more than a year later. We were both emotionally hurt and confused by my condition. He saw my rejection of intercourse as a rejection of him. And I was too young and too inexperienced to know how to explain to him that my whole vulvar was on fire and that the last thing I wanted physically was sexual contact although emotionally I craved it. I also was too young to stand up to abusive doctors who wanted to cut out my "painful parts" or burn them off with acid. I just got worse and worse the more doctors I saw. Although I eventually refused to have intercourse anymore, I did want cuddling and kissing from my ex, but how many young men know how to do that without it leading to sex? About four years later I joined a support group of amazing women dealing with vulvar vestibulitis. We met every week, most of the time with just the women but occasionally with the men also. I could not get my ex-husband to go. I could not get him to listen to me. In the end he chose to listen to the doctors who told me "it was all in my head." He just could not support my search for healing or support me emotionally and eventually he became emotionally abusive. It was after one of the support group meetings when I had sat with four other women and their four very supportive, loving husbands for two hours talking about my vulvar pain and relationship issues that I knew I had to leave my husband. It took another three months and one extremely hurtful comment from him that put everything in perspective for me to do it. Since then, I have had some very good sexual relationships (mostly without intercourse) with some amazingly supportive men. They are out there! The four women in my support group found them. Other women on this forum have found them. Believe they are out there and you deserve a man who will support you and who wants to make love to you, not one who is willing to cause you severe pain because he "needs" intercourse (willing to cause a little pain in order to experiment and test new creams etc. is a totally different story . . .).

Also, I agree with Claire. If you are only having pain with sex, please look into biofeedback for your pelvic floor muscles as a possible treatment option for you.

Take care,
Heidi
http://lowoxalatefamily.wordpress.com

Heidi

Posts : 28
Join date : 2011-07-17
Age : 55
Location : Missouri, USA

http://lowoxalatefamily.wordpress.com

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Post  Yangle Tue Aug 02, 2011 11:23 am

Hey BlondeLawyer

Sorry to hear about your experiences. It's a hard thing to go through, I completely understand the frustration about it starting so young, I was 21 when my pain started. Especially being able to have pain free sex beforehand it really gets to you.

In response your boyfriend cheating, I have found that my partner doesn't care too much if we don't have penetrative sex, as long as he gets some other things! Also, although it certainly improves things for him, you don't necessarily have to be in the mood for pleasure yourself to give oral sex...and sometimes it gets you in the mood.

I have a lot of trouble getting in the mood and right frame of mind to play around with my partner. I find the fear of it hurting often turns me 'off'. To combat this me and my partner went sex-shop shopping and brought some hypo-allergenic lubrication - that has helped wonders as I too am not often 'wet'. We also brought some body massage balm, some chocolate things (not for 'down there' but other places). I went a bought a sexy outfit from la senza (not sure if you have that shop where you are?). I find that often I can make myself in the mood by surprising my partner, I put some some music, light some candles, change in to an 'outfit' and then call him when he's downstairs and say to come up and help me with something... or similar! Really gets me in the mood and he loves it! Sure it's hardwork and I can't really do spur of the moment things but it's fun nonetheless and has really helped our relationship.

By all means try everything that people say, pelvic floor exercises etc... but also don't only rely on a cure to help things. Try to find work-arounds in the meantime!

Good luck, and remember - you are not alone!
Yangle
Yangle

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Join date : 2011-07-25

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Post  Sarah001 Tue Aug 02, 2011 11:43 am

I second what Aussie said, get your pelvic floor checked out as soon as possible, having painful sex will make the muscles tense up in anticipation so that's a must. If sex isn't so bad after a week of no sex if you haven't tried this already I'd say take some time off penetrative sex and see if it heals the problem. Of course you have no sex drive and don't want to have sex if it hurts, I think some men just don't understand this. My partner left me for someone else after 6 months of my V pain and no intercourse despite the fact he was getting regular blow jobs and hand jobs and you know what, it was for the best really. With him gone it gives me time to focus on trying to resolve this and no pressure in the meantime to have sex and I also think if someone is going to leave you over this then let them because they clearly weren't interested in you as a person so if it happens it happens and you don't need to worry about it. Start doing some deep breathing daily into the abdomen so your belly rises as you breathe in, this relaxes the pelvic floor. Stop worrying about your bloke and focus on yourself for now. The two books Aussie mentioned are definitely worth buying and aren't expensive so get those and have a read. Try meds to see if they help but do avoid painful sex as it will just make the problem worse. If your boyfriend doesn't get it and piles on the pressure let him go and concentrate on getting your life back instead.
Sarah001
Sarah001

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Age : 50
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Post  BlondeLawyer Tue Aug 02, 2011 12:57 pm

Thank you for the words of encouragement guys. I think it is time for me to think about myself. I have just started an amazing new job so I think I am going to concentrate on that. My current gyno is pretty awesome, whenever I can see him. I have done about 3 biofeedback, pelvic floor excersize things at the psyiotherapist. I have been on lyrica. I have tried lidocaine etc. I think I was too much in denial and stubborn to really concentrate on getting better. I think i was just angry and feeling sorry for myself. I really think that I have a couple tears in my vulva, (if I look at a certain angle I can see layers of skin missing)... My doc told me I have a really tight vagina. And my partner is bigger. As for him cheating, Im not sure if I should leave him? He has gotten more supportive, but Im not sure if I can get over the cheating. Is it just because he was unhappy? And if so, does that mean he should be forgiven ? I think if i didnt have this problem he wouldnt of done it, but maybe im just lying to myself... I love him so much. Anyways, thanks for all the support.
I think once this new job starts paying me well I am going to get myself to a therapist to talk about my sex/relationship issues. I definitely need an unbiased third party to help me a bit! Smile

BlondeLawyer

Posts : 4
Join date : 2011-08-01

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Post  Sarah001 Wed Aug 03, 2011 7:43 pm

I don't think anyone can answer the question whether you should leave your bloke or not, some men cheat once and never do it again and some see being forgiven as the green light to keep doing it without consequences. Only you know how you feel about it and only he knows if he'll do it again. Go with your gut.
Sarah001
Sarah001

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