Vulvodynia Support
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» Hope to all my suffering ladies
Does anyone else get this? EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Does anyone else get this? EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Does anyone else get this? EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Does anyone else get this? EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Does anyone else get this? EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Does anyone else get this? EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Does anyone else get this? EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Does anyone else get this? 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!
Does anyone else get this? 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


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Post  Aussie 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

Aussie

Posts : 230
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Age : 35
Location : Queensland, Australia

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Post  Sarah001 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.
Sarah001
Sarah001

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Post  Aussie 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

Aussie

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Post  Sarah001 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.
Sarah001
Sarah001

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Post  Aussie 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.


Aussie

Posts : 230
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Post  Sarah001 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!
Sarah001
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Post  Sarah001 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.
Sarah001
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Post  Aussie 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?

Aussie

Posts : 230
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Post  Sarah001 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.
Sarah001
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