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» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
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» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

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Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



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Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

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Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

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So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

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Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

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Any success with this?

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Any success with this?

Post  Rose86 on Sun Sep 18, 2011 6:09 pm

Hi all,

I have localised provoked vulvodynia (always useful to say that I think because it differs so much). I previously started some physio work at home, but didn't carry it on. But I think i'm going to start it up again, even just to stretch things and get myself used to insertion again. I've got dilators and a biofeedback machine. But i'd be interested to hear about internal stretching/massage if anyone does that?

I'm just wondering if anyone has felt any improvement with this, particularly if you have localised provoked (Vestibulodynia) too. I mainly mean an improvement in pain from the cue tip test, but also improvement in terms of less pain with insertion.

I know it's a very useful treatment, I just found it took up so much of my time and I really needed to feel motivated to do it. So going to try hard at it again, starting this week.


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Re: Any success with this?

Post  Sarah001 on Sun Sep 18, 2011 7:29 pm

Hi Rose, I have generalised unprovoked V plus VVS and I do the internal stretching every night in the bath and it does help temporarily. I also saw a Women's Health Physio and started biofeedback last year and I do find if I can keep my pelvic floor relaxed it helps enormously over a few days however I have a complicating condition that means my pelvic joints are very loose so my PF just tightens back up again to stabilise the joints and I also have a habit of tensing the pelvic floor all the time and tend to slip back into that as soon as I realise keeping it relaxed is helping and my focus is drawn to the PF so I'm going round in circles but I'd be willing to bet money that if my pelvis was normal and stable and I concentrated hard on relaxing the PF that I'd be vastly better than I am now. Can I ask which biofeedback machine you have?
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Re: Any success with this?

Post  lolainslacks on Mon Sep 19, 2011 12:15 am

Can I ask how you do your own internal stretching in the bath? I'm sorry if that's too personal or inappropriate, but I would love to be able to do some kind of physio myself at home and I have no idea how to start.

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Re: Any success with this?

Post  Sarah001 on Mon Sep 19, 2011 5:33 pm

Too personal? God no! We're on a lady bits forum after all! Laughing The way I do it is use a slim dilator for the muscles I can't reach and just stretch them out a bit or hold it on trigger points when I find one. The muscles just inside the vaginal opening I stretch with the thumb or finger of the opposite hand, it's a bit of a reach but my loose joints mean I can do these contortions fairly easily! Once I find the tight muscles (mine are solid near the opening) I press them down and out at the same time which really stretches them out. Once done I skin roll the outer labia and anchor the skin on the pubic bone and stretch the skin downwards gently with the other hand to get a bit of external work going. If I keep doing the external stuff it does help but I tend to be a bit hit and miss with it however I always do the internal muscles every night. If you can keep your pelvic floor relaxed and do that routine in the bath each night (baths are good to help relax the muscles and warmth encourages blood flow) I'm sure you'd feel a difference. Let me know if any of my descriptions aren't very clear!!
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Re: Any success with this?

Post  Rose86 on Mon Sep 19, 2011 6:31 pm

I have the neurotrac simplex, it's good but I don't think it needs to be one that technical. All I use it for is to measure the muscle tension, I don't use it for pelvic floor stimulation or anything like that. It did (when I was using it properly!) help me to realise when I was relaxing/contracting the muscles properly. Sometimes I thought I was relaxing them, but when I looked down at the display I clearly wasn't!

I think half the battle is getting used to having something inserted again, getting over that fear. I think, because I just have localised V, that if I could be relaxed enough, and with enough lidocaine (and wine!) I could probably get to a point where I can have sex again. This isn't ideal though, lidocaine wears off and there would always be the fear that it was going to during intercourse. I really don't think pelvic floor muscle problems caused this, I think i've always had tight pelvic floor muscles but for about a year of having intercourse there was no pain whatsoever. It's so frustrating not knowing what caused it! But I suppose the cause doesn't necessarily link up with the treatment. The academic research on Biofeedback looks pretty promising, and i've read pretty much everything I can get access to!

Anyway the internal stretching sounds like a great idea. I'll try and do that before bed, just with my hands and get used to that first before I get back to the dilators and Biofeedback.

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Re: Any success with this?

Post  Sarah001 on Tue Sep 20, 2011 7:21 pm

The fact you had tight PF muscles before the pain could well mean it's your cause, they reach breaking point if not treated the same as a tight muscle in the back will pull if not dealt with. It doesn't have to be the tight muscles that started it but they can easily keep it going and prevent healing. Localised V usually responds very well to PF treatments so it's definitely worth giving it a serious go.

I'm thinking I should probably have a home biofeedback unit, my last physio said I was such a mess I should wear one all the time!! Rolling Eyes
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Re: Any success with this?

Post  Rose86 on Thu Sep 22, 2011 8:38 am

Thanks Sarah. Yeah it's definitely worth a try. Can I ask, what does an internal trigger point feel like when you find one?

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Re: Any success with this?

Post  Sarah001 on Thu Sep 22, 2011 9:59 am

Very sore! Some of them refer pain to other areas like the sacrum, hips, back etc and some just feel really painful. If you use your fingers they feel like little hard balls in a tight band of muscle. I'm sure you'll know if you hit one!
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Re: Any success with this?

Post  Rose86 on Thu Sep 22, 2011 10:39 am

Thanks Sarah. It's really awkward trying to use your fingers to do it though. Or maybe it's the position i'm in (lying on my back)! Have any tips?

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Re: Any success with this?

Post  Sarah001 on Thu Sep 22, 2011 11:59 am

You can lay on your side and treat each side that way, it does give better reach to be honest. If you really can't reach with fingers a slim dilator could also be used as a trigger point tool. It is awkward and obviously even with long fingers we're never going to be able to reach very far into the pelvic floor but the bits just inside the vaginal opening are frequently very stiff and sore and you can also treat a bit externally by sliding fingers down the inside of the sitbone and up towards the pelvis, you catch some of the pelvic floor there. Just do the best you can and see how you go.
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Unsuccessful Physical Therapy

Post  AroraNightfire on Tue Jan 24, 2012 4:44 am

Ive tried phsyical therapy around this time last year. I wasnt ready. My pain was too high. I remember the physical therapist having me lay down on my tummy and she would use her fingers to put pressure on my ass muscles. It felt like she was pushing down on bruises. She even tried internal physical therapy, inserting one finger and putting pressure on each side of my vagina switching like every 3 minutes for about 30minutes. We tried that twice and I didnt feel any change after.

About 1 month ago my anasthesiologist told me to try relaxing my vaginal muscles everyday, 15minutes everyday. I tried using my slippery stuff and dildo, just leaving it in for 30min however long I could take it. I did it everyday for 1 week and I actually felt more pain during the day. I didnt know if it was the slippery stuff or the physical contact.

This Wednesday I have an appt with my GYNO and the following week I have an appt with my anasthesiologist once again. I dont know what to do anymore. I feel like giving up.

I have pain when Im sitting, pain when wiping myself after I pee. I feel guilty when I end up being intimate with my bf because I know I always pay the price the next few days. I guess I'll just have to will myself to be a nun. Im 27 and Ive been going through this most of my adult life. Frozen gelpacks are the only thing that really truely provide immediate relief. I wish someone could help me. Im on Lyrica and when Im working I take Cymbalta as well....but I know its all just one big bandaid....Ive been given creams...and now the drugs are the bigger banaids which I feel in time will only harm me. Living without Lyrica is cruel and I feel like to curl up and die because I cant move.
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Re: Any success with this?

Post  Sarah001 on Tue Jan 24, 2012 12:21 pm

To be fair physio takes alot longer than that to help, the dilator work should be done daily for 3 months to make a difference and any work on muscles with trigger points which I suspect were what you describe as "pressing on bruises" can take weeks to make a difference and has to be done along side relaxing the muscles through the day or they just jump right back in there. To give physio a decent shot you really need to be persistent with it or it's a waste of time and you need to know why you have all those trigger points to completely remedy the situation. Muscles get trigger points when they are overloaded and the fact you had alot in the buttocks shows something is going on there.
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?

Post  AroraNightfire on Tue Jan 24, 2012 3:21 pm

No idea what is going on there. I had an mri last spring to my pelvis which didn't show anything wrong internally. All it showed was scar tissue on the fat surface.

Im currently sitting on frozen gelpack in the waiting room for my mom who is having a procedure done. Im her drive home. I hate sitting and wish there was a way for me to recline back more. Ill just have to rely on my gelpacks and stand some of the time. This sucks.
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quick question

Post  yuffie623 on Sun Jan 29, 2012 10:28 pm

I don't mean to interject, but I have a quick question.

I don't live anywhere near a physical therapist, so I have to put off seeing one until I move to a city that does. So I haven't had the opportunity to ask one this question, and my doctor was recommending other doctors (far away in another city it's not practical for me to go to, like I said, until I move to one) because she admitted she didn't know what to do for me. Anyway, I wonder if those physical therapists forbid patients from masturbating to orgasm during the weeks/months/years of treatment, because of orgasms' effect on the pelvic floor.

I think I would go completely crazy without orgasms, though, so I'm hoping it's not the case. If I had to abstain for a few weeks, fine, but any longer than that, I just...I can't imagine.

Thanks

edit: Yes I sound stupid. Oh and I'm in upstate New York, USA.

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advice

Post  AroraNightfire on Tue Jan 31, 2012 6:55 pm

To be honest when I went for physical therapy the begining of last yr she told me that orgasms are good for your vagina. She said blood flow is good. What I think is that as long as ur not in pain when your mastrubating its ok. If it hurts to finger yourself DON'T. If it hurts to rub your clit fast do it slow. DON'T DO ANYTHING THAT WILL HURT! I know its easier said than done because the excitment builds and you want to get there faster. Just be very gentle and I don't see how you could be harming yourself.
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Re: Any success with this?

Post  mars215 on Fri Feb 03, 2012 6:08 pm

Hi all...

Just to add... I also have provoked VV (diagnosed 9/2011)... my home treatment plan includes self-massage for about 10 minutes, then dilating for another 10-15 minutes. I also do core-exercises to strengthen surrounding muscles. Oh, and deep breathing exercises.. I think they're called diaphramatic?

I try to do this every night, or every other night and I really feel a difference. It's a lot of homework, but the last 10 weeks have shown a lot of improvement. I've moved up from the XS dilator to the Medium one already.

I should add that I had a pubic shear(had no clue til i went to the PT!)... which basically means that one of my pubic bones was completely out of alignment and caused my pelvic floor muscles to overcompensate for the imbalance... I know PT doesn't work for everyone... so I guess it depends on the causes of your VV =/

Hope this helps,
Mars

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Re: Any success with this?

Post  Rose86 on Sat Feb 04, 2012 11:34 am

Hi Mars,

Have you noticed any difference in the pain of your localised provoked vv? I am trying a very similar approach, although focusing more on the massage than the dilators at the moment.

Rose

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Re: Any success with this?

Post  Sarah001 on Sat Feb 04, 2012 1:08 pm

Hi Mars,

I'm very pleased you shared this with us and that you're getting relief from your physio homework. This is why I urge all ladies with VVS or V to get their pelvic alignment checked because it's such a common problem and as in mine and your case pelvic misalignment/instability has set the pelvic floor off which can cause the problem. I'm doing very similar things to you but with only a tiny bit of massage and dilators do help the V but my pelvis isn't stable enough for that yet but it's a very similar situation and I'm working on the muscles around the pelvis to try and help decrease the spasm of the pelvic floor. Keep us updated on how you're doing, it's really great you chose to share this with us all.
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Re: Any success with this?

Post  mars215 on Sun Feb 05, 2012 2:47 am

Hi Sarah,

Will keep you all updated Smile Thank you for your support and I'm glad that you found my post useful Smile


For Rose,
I have noticed a difference with the pain... I went from having excruciating pain during my Q-tip test, literally every area around "the clock" was painful... now, I only have a couple of trigger points. I think your focus should def be a personal decision and depends on your VV. Most of my VV trigger points were right around the opening of my hoohaa... so that's what I treat when I do my self-massage...I use the dilators to help with tightness and relaxing general pelvic floor muscles (i have high tone pfd)... and i do notice a difference...in the beginning, it was unbearable when my uro would examine me with her finger...and now i'm almost to "partner size" in my dilator!

i also find the dilators useful bc i can tell when my body is clenching down there, something that i did unconsciously when i would get stressed.

How long have you been working on the self-massage/dilator? It took me 3-4 weeks to start noticing anything... so if it's new i would give it time Smile deep breathing during is also key. and with the dilators, i had to take it very slow and be patient with myself... my Uro cautioned me to only move up to the next size after the current one could slide in and out easily.

i really hope your pain decreases... good luck! sending you lots of good vibes!!

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Re: Any success with this?

Post  Rose86 on Sun Feb 05, 2012 11:22 pm

Hi Mars,

Thanks for all your info, and it's great to you know you have seen a difference. I've been doing it for a couple of months now, but i've had a couple of yeast infections in that time, which made things a bit sore and tense again, so i think that undid my good work! These trigger points you talk of around the entrance, were they on the inside or outside? And do you mean trigger points as in hard bits of muscle that move underneath the skin when you press on them? I have loads of those, but can't seem to get rid of them! It's really frustrating! Though I know i'm not doing a good enough job of relaxing my PF muscles during the day for it to have any long term effect. Must keep trying.

Rose

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Re: Any success with this?

Post  mars215 on Thu Feb 09, 2012 7:32 pm

Hi there Rose,

(Sorry for this late response) My trigger points are right on the entrance of my vag. in the inside, so i would directly massage muscle tissue. I'm not sure if trigger points feel the same for everyone, but mine are more like very tight areas of muscle/tissue... after i press on them for a bit, they are usually more loose and flexible. so that's what i try to find. i can usually feel the muscles elongating (in very small ways) when i do it. and remember, deep breaths Smile

oh, and i usually do my self-massage at night, right before i go to bed with water-soluble lube. if i feel tight in the morning and have time, i sometimes do it after waking up too.

i hope this helps!
mars

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Re: Any success with this?

Post  Sarah001 on Fri Feb 10, 2012 8:59 pm

Just out of curiosity mars when you do core exercises do you use the pelvic floor or have you been told to keep it relaxed and focus on just the transversus abs? I'm currently trying to do them without PF contribution and finding it difficult to maintain if I try and move!
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Re: Any success with this?

Post  mars215 on Sat Feb 11, 2012 12:16 am

Hi Sarah,

Just the abs Smile It took me a while to get a hang of it... cause i would clench down there when i first started... and my pt said that's not good... it also took me a while to be able to breathe while doing the exercises... it's still tough!

mars

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Re: Any success with this?

Post  Sarah001 on Sat Feb 11, 2012 1:47 pm

Thanks, I'm having trouble with the breathing bit too! A pilates teacher once told me to aim the contraction of the transversus abs no higher than bikini line to make it easier to separate that contraction from breathing higher up and it does help when I remember to do it! Anyway, do keep us updated I'm thrilled you're doing well.
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Re: Any success with this?

Post  Rose86 on Sat Feb 18, 2012 12:44 pm

Has anyone here considered botox to help the pelvic floor muscle stay relaxed?

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Re: Any success with this?

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