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Mon Apr 16, 2018 5:49 pm by Sad

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

» Pressure to have sex.
Sun Apr 15, 2018 2:00 am by Sad

» Vulvodynia and other neurological diseases?
Sat Apr 14, 2018 8:00 pm by wuhujen

» I'M NEW - Do I listen to my gyno who I feel has it wrong?
Sat Apr 14, 2018 7:57 pm by wuhujen

» I wanted to share a resource that has made a huge difference for me
Wed Apr 11, 2018 9:28 pm by amf329

» Loneliness
Wed Apr 11, 2018 11:36 am by sophiarp

» I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone
Fri Apr 06, 2018 4:06 am by Warrior2010

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 4

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 3

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0

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 …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


Does anyone else get this?

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Does anyone else get this?

Post  Aussie on Thu Jul 28, 2011 5:25 am

After trigger point work (especially when physio does it) I get awful burning, lasting about an hour before going back to daily pain level. Can anyone give any indicaiton as to why something classed as 'theraputic' and 'good' for this condition cause me such pain? It causes the same amout of pain as sex.

Thanks,

Claire

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Re: Does anyone else get this?

Post  Sarah001 on Thu Jul 28, 2011 12:15 pm

Any type of manual work can increase pain for up to 3 days, it's really good that it only lasts a brief time for you. Basically you're pressing and stretching irritated areas which is going to irritate them further temporarily and sometimes, especially with the stretching, will cause microtrauma to the muscle which is the way muscles both heal and can become dysfunctional in the first place so that causes pain. It's a necessary evil with trigger points unfortunately but obviously feels like it's not doing what it should if the trigger points have to be repeatedly worked on, I totally understand why you're thinking this because I'm head to toe trigger points and spasm and have to work on all of these daily to keep myself at the level I'm at and I'm sure if I did some trigger point work and experienced long lasting results it would be less of a bother than having to do it daily and seemingly get nowhere. As for V work, sometimes that flares things up for 12 hours for me and other times for several days so I have to be careful.
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Re: Does anyone else get this?

Post  Aussie on Fri Jul 29, 2011 1:00 am

Thanks Sarah,

it just seems as though it is doing me more harm than good. I go for trigger point work and I get more pain not less. Very frustrating. I don't know if I should be contiuning or not. My daily pain is at a 2 providing I don't wear jeans or sit for too long and then after physio it goes up to a 5. The burning that was there yesterday is still at the same intensity today. Sad

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Re: Does anyone else get this?

Post  Sarah001 on Fri Jul 29, 2011 1:06 pm

Maybe the physio is being a bit too enthusiastic? Sometimes they work a bit too hard on areas in my experience. Does she have any ideas about why the trigger points aren't resolving long term? Are you still clenching the pelvic floor at times? Or is there another muscle group that isn't pulling its weight so the pelvic floor has to compensate? How are your SI joints doing now, could they need stabilising more to prevent these trigger points from popping right back in?

I use arnica ointment after I've done a bit of work on the PF muscles, it seems to reduce the soreness and get me back to my usual pain level faster. You could always try skipping a session and see what happens, perhaps you could drop down the amount of sessions you have rather than stop altogether.
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Re: Does anyone else get this?

Post  Aussie on Mon Aug 01, 2011 2:43 am

Sarah,

Spoke with my pt and she asked how often we were having sex. I said well at the moment my daily pain is not too bad so 3 times a week ish. She said to just do the trigger point work before sex.

I have a theory; let me know what you think:

The daily pain and the sex pain are from two different origins, or at least the muscles tightening are making things much worse during sex. I think the daily pain is nerve related, which can make the muscles tighten. The sex pain, most if not all is related to muscles, this explains why I had pain free sex for a period of time. I was constantly working the muscles.

I believe however, that the trigger point work angers the nerves which tightens the pelvic floor.

My physio said my trigger points are the best she has ever seen them. Which seems strange because I have not done trigger point work or seen a physio for 1 month prior to this appointment, you would think if the pain was purely muscular it would be the exact opposite situation.


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Re: Does anyone else get this?

Post  Sarah001 on Mon Aug 01, 2011 12:51 pm

Well it could be but you'd think if it was nerve pain and your pelvic floor is now the best it's ever been that wouldn't be the case, surely if it was nerves tightening the muscles up it would be pretty tight recently? I may have misunderstood of course. I actually think alot of my diffuse constant pain is coming from the problems in the external muscles, how are your adductors? I find if I press into some of the many trigger points on mine it reduces the constant pain. As far as I know the muscles that could be contributing to diffuse constant pain are abdominals, adductors, hip rotators especially the piriformis and obturator internus, iliopsoas and sometimes the quadratus lumborum which are all associated with pelvic stability. The SI joint can refer directly to the vulvar and a very tight hip can also refer pain there so if you haven't already maybe it's time to get the old tennis ball out and start sticking it into muscles to see if they're sore and pressing all the way down the adductors to see if there's any knots, don't forget the adductor high on the leg at the back as that refers directly to the genitals. Also spinal mobility can cause V pain, the tennis ball should alert you to any stiff sore areas if you lay on it and work up your back both sides. I think as you did so well with the intensive course it's probably still a muscular problem and the focus maybe needs to be external as well as internal. And yes I know it will take a long time to do all these muscles, I spend about an hour and a half on all those areas each day but I break it up into bits so I'm not trying to do them all at once. Let me know what you find!
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Re: Does anyone else get this?

Post  Sarah001 on Mon Aug 01, 2011 12:55 pm

I forgot to say, I think you mentioned you have flat feet? If so start with the piriformis as it tends to get overworked and full of trigger points when the feet don't function correctly and also is perfectly capable of trapping the pudendal nerve.
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Re: Does anyone else get this?

Post  Aussie on Tue Aug 02, 2011 12:11 am

Sarah,

I think you may have missed what I was trying to get at. I meant that the trigger point work sets off the nerves which makes me flare. - Ie tightens the muscles. It appears my muscles are tighter when doing constant pt (3 times a week) as apposed to not at all (best she has ever seen them)

After many massages the trigger points in my adductors settled and I have very few now aside from just in my hips. The massages seemed to nock it out. I don't feel sore anywhere except my v, perhaps I will try the tennis ball again just to make sure.

All of this doesn't explain why I came back from Adalaide so well though. Very confused!!

How are you doing?

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Re: Does anyone else get this?

Post  Sarah001 on Tue Aug 02, 2011 12:02 pm

In that case I'd guess the trigger point work is making them tense up because it increases pain for a while so perhaps less often might well be the answer, you can always try it and see how you go. I'm currently trying to loosen up my left hip as it's so tight from muscle spasm it's dragging my pelvis along with it every time I move it! Rolling Eyes I was trying to work out my finances to go back to physio but realised I'd be better off having an attempt at this hip myself beforehand so we don't waste weeks on that while I'm payng for it.

As for your hips, I noticed in another thread you mentioned they were out and I assume you were referring to your SI joints (some people mistakenly call the pelvis their hips but I know you know the difference Wink ) so there's definitely going to be trigger points in the area somewhere. Check your hip mobility too, get your husband to hold your pelvis as you do some hip stretches in all directions and tell you if it moves as you do them, tightness around the hips can refer directly to the vulva so it's well worth doing and the tennis ball is definitely going to reveal something if you have flat feet, SI joint dysfunction and TMJ. It's also worth remembering the upper back is relevant too, any stiffness there will put extra stress on the pelvis and the lats are part of the stabilising slings for the SI joints so they may well be dysfunctional and knotty too. If you have tight upper traps work to release them too and try and keep your shoulder blades down and in on your back as the lower lats tense the thoracolumbar fascia as part of the stability for the pelvis, you don't use the lower ones it won't tense properly. I think the trigger points around your hips are a good place to start and I also think you may be like me and need your motor control tuning so you fire the deep stabilisers (including the pelvic floor) at the correct time. Posture is also a big deal and with flat feet people often either have the pelvis in anterior rotation as a whole or use the swayback posture and lock the hips into extension and "hang" from ligaments. I'd love to see what your posture is like I'm a total nerd about this and often get totally distracted following someone with bad posture down the street listing all their muscle imbalances in my head as I watch them! Rolling Eyes Laughing

One other thing is the neck muscles, there a few muscles there that can give you TMJ so it may all be part of the whole postural problem.
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Re: Does anyone else get this?

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