Vulvodynia Support
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» Hope to all my suffering ladies
burning and PVD? EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
burning and PVD? EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
burning and PVD? EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
burning and PVD? EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
burning and PVD? EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
burning and PVD? EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
burning and PVD? EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
burning and PVD? 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!
burning and PVD? 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


burning and PVD?

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Post  ringostarr26 Fri Mar 15, 2013 8:12 pm

MY gyn originally diagnosed me with vulvodynia because i experience extreme burning in the vulva. It is not provoked and I feel it for most of the day. After visiting a pain specialist however he believes my pain is related to the pelvic floor. Is burning a common effect of PVD because I assumed that muscles were responsible for more of an achey feeling. I'm really stressed about what exactly is going on?

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Post  Alana3 Fri Mar 15, 2013 8:21 pm

I have both

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Post  cba321 Sat Mar 16, 2013 11:15 am

I have pvd and I also have the burning pain at times without touch. I think it is more related to irritation of the nerves, when muscles are in spasm they can produce by - products that irritate the nerves. Doesn't necessarily have to be something touching the nerve.

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Post  Sarah001 Sat Mar 16, 2013 5:24 pm

I have unprovoked diffuse burning plus pelvic floor dysfunction and when my physio realigns my pelvis it sets the muscles off on a severe burn for a few minutes afterwards so it's the muscles that are to blame in my case. I had severe burning in my neck and shoulders a few years back from tight spasmed muscles so muscles can definitely cause burning.
Sarah001
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Post  ringostarr26 Sat Mar 16, 2013 5:47 pm

Have you found that physio helps the burning pain? i have been looking to try it for some time. I get burning in my feet every time my V flares up and I never understood why.

ringostarr26

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Post  Alana3 Sat Mar 16, 2013 6:33 pm

It def helps but until I got my vestibulectomtly it did nothing for me because a penis was impossible. Now I do it and it def helps

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Post  Alana3 Sat Mar 16, 2013 6:43 pm

But the burning from vulvodynia was way worse then muscular pain. I know there are different degrees and all but God the v was terrible it is possible to have both but the burning sensations for me were different

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Post  ringostarr26 Sat Mar 16, 2013 6:59 pm

Yeah i'm dealing with a horrible flare right now. I was symptom free for 3 years and just this past summer the burning started all over again. I'm at my wits end. I am currently using valium suppositories for the muscles but the burning is unbearable.

ringostarr26

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Post  Alana3 Sat Mar 16, 2013 9:36 pm

Did you have the surgery or what did you use for the original to stop

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Post  ringostarr26 Sun Mar 17, 2013 1:13 am

i tried amytriptyline with no success and just dealt with the pain. It disappeared on it's own actually which i'm sure is rare. It took over a year for it to be gone completely but I was 3 years 100% pain free.I just can't pin point what started this flare. I made myself believe that I was drinking too much coffee its the midst of exam season but i have no idea. I was told surgery for me was not a good option because my V is not provoked. By PVD i meant PFD i should have corrected myself earlier. I have the more generalized V that burns constantly. It does not get better or worse with sex... not that i have any these days in my agony. Sad

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Post  Alana3 Sun Mar 17, 2013 3:39 am

Ugh idk I guess I was lucky mine actually did go away and then it came back again yuck. Then I had the surgery where are you located

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Post  Sarah001 Sun Mar 17, 2013 2:35 pm

In answer to the earlier question I'm not at the stage where I can have my pelvic floor released yet so I don't know how well it will work but I do know if I keep it relaxed my pain decreases and if I clench it my pain shoots through the roof. The constant burning is just hell, I take Ami for sleep but it didn't help my burning so I'm also on Lyrica now which helps to a degree even though I can tell the sensation of the skin isn't right through it if that makes sense. I would try medication at the same time as other things just to give you some relief. Have you been told your pelvic floor is tight? I'm assuming you have because you've been given the valium but valium won't remove trigger points, the only thing that will get rid of them is internal massage. It's also a good idea to get your pelvic alignment checked out, I keep banging on about this I know but my physio has treated loads of women with V and she almost always finds a pelvic alignment/stability issue that's set the pelvic floor off.

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Post  Loulou Sun Mar 17, 2013 9:16 pm

Hi ringostarr26

So sorry to hear you've had a relapse. But i think you could be right with your diagnosis of PFD and exams being partly to blame for relapse. Presume exam time has been stressful for you? Stress can cause you to tense muscles (stomach, butt, pelvic floor) without you even realising. Holding tension in muscles can cause trigger points and misalignments, all leading to pain/burning. I'm pretty sure now that a prolonged stressful period at work combined with a twisted sitting position at the computer (I would lean forward and over on one hip) were the straws that broke the camel's back for me. I was later diagnosed by my chiro with a misaligned pelvis which i'd probably had for years, muscles had been compensating in ways they shouldn't have, and then bang - an intense period of stress and posture triggers and my vvd started.

So definitely get a physio and/or a chiropractor to check you out for misalignments and trigger points. What's worked for me is getting my pelvis realigned and then doing regular yoga and pilates to strengthen muscles to hold everything in place.

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Post  ringostarr26 Sun Mar 17, 2013 11:41 pm

thank you all for the replies. i definitely think it is all the stress. I also suffer from TMJ! Fun eh? and that too is acting up. I just need to find a good PT so if anyone knows one in Toronto that would be so helpful!

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Post  Loulou Mon Mar 18, 2013 12:05 am

For your TMJ have a look at Peter Egoscue's book 'Pain Free' - he has some specific exercises for relieving TMJ pain and discomfort.

I used his book 'The Egoscue Method of Health Through Motion' to help realign my pelvis (its not a vvd book nor is Pain Free). It really helped and he made a lot of sense.

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Post  Alana3 Mon Mar 18, 2013 1:01 am

Just go to an orthodontist and get a splint I work in the field that's what they do and I have tmj

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Post  Sarah001 Mon Mar 18, 2013 11:43 am

There's also a trigger point in the neck that can mimic TMJ, my friend thought she had it and when I showed her the spot on her neck she pressed it and it reproduced all her "TMJ" symptoms so working on it over a few weeks got rid of the problem.
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Post  ringostarr26 Mon Mar 18, 2013 3:14 pm

I do have a splint, multiple actually. it hasn't helped much. Massage and dry needling helped a bit. I am just hoping once the stress of exams is over my flares calm down.

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Post  Alana3 Mon Mar 18, 2013 3:29 pm

Do you have clicking/popping? sometimes it needs surgery because its too far advanced, and do you still have wisdom teeth? Sometimes that can cause an issue too. I mean I clearly don't know what your problem is, but just saying there are definite ways to help your TMJ. Trust me my jaw is very musical when I eat haha its painful too sometimes. But I'm a surgical candidate at this point blah I've had enough surgery recently! Heat and advil might help if you're having a painful flair. Also, if you sleep with a window/fan on you may consider turning those off because they oddly can trigger pain in you jaw.

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Post  ringostarr26 Mon Mar 18, 2013 4:53 pm

mine is all muscular from what my doctors say. MRI's all came back negative and I don't get popping in clicking. Most of the pain i get is in my ear to be honest so surgery is not an option.I think all my TMJ problems started from having my wisdom teeth removed actually. It seems like it is easier to control the TMJ flares over the V flares though. At least with TMJ doctors know what it going on! This may sound weird but when my TMJ is at its worst my V flare is not bad ad vice versa. I think everything is connected and there is a constant pull on my muscles. I just wish there were better studies out there to help us all suffering with this awful ailment.

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