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» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Vestibulectomy
Sun Aug 13, 2017 9:54 am by infinitelywondering

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 4

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

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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: 22

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 …

Comments: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

Comments: 2

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

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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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