Vulvodynia Support
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» Hope to all my suffering ladies
PVD - The problems might not only be in your pelvic floor EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
PVD - The problems might not only be in your pelvic floor EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
PVD - The problems might not only be in your pelvic floor EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
PVD - The problems might not only be in your pelvic floor EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
PVD - The problems might not only be in your pelvic floor EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
PVD - The problems might not only be in your pelvic floor EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
PVD - The problems might not only be in your pelvic floor EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
PVD - The problems might not only be in your pelvic floor 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!
PVD - The problems might not only be in your pelvic floor 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


PVD - The problems might not only be in your pelvic floor

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Post  cba321 Mon Mar 04, 2013 11:52 am

I have PVD with spasms in the pelvic floor. For the last 8/9 years all I have ever focused on was the vag area...well it turns out I have muscle imbalances and boney issues in multiple parts of my body specifically overactivity in mainly the obliques and piriformis in addition to the pelvic floor muscles. Significant internal rotation of my femur/knee joint leading to pronation of my feet (no arches), twisting of my left tibia (I should probably point out here that I am 27 years old...not 87). Multiple weird bone misalignments of my feet, twisted pelvis, limited use of gluteus medius and minimus further exacerbating internal rotation of femur and starting/feeding overactivity of the coccygeus muscle and leading to squeezing of my butt to maintain some form of stability however poor a compensation it may be...All of this in a body with hyperflexibility of the lower limbs probably due to ligament laxity - the more flexible a joint the easier it is to damage. I should also indicate that I have no "pain" in my lower limbs excepts when they are massaged deeply and it is excruciating pain as bad if not worse that the pelvic floor pain I get with sex. Hence why I never checked anything out...The physio I see pointed out that in her experience the body will compensate for problems with a short term goals in mind, to maintain function with no pain if possible, despite the long term detrimental affects this may have. Additionally a tense overactive muscle usually doesn't cause pain except when touched ---I can see our bodies point but can also lead to serious and epic fails...

Is the pelvic floor the chicken or the egg ladies...the multiple health professionals I see go both ways. Starting with an exercise physiologist to assist with retraining the dormant muscles and put them back to work and stop the poor compensation

The health professionals I currently see are:
Chiro - for spine and pelvis
Chiro - for feet and orthotics
Physio - for pelvic floor muscles and botox
Physio - spine and pelvic pain general type physio
Remedial massage - myofascial massage (not the normal type, he simply puts his hands on you and your muscles melt! no pain!)
Psychologist and exercise scientist
Exercise Physiologist to start soon

And yes, this is costing my a fortune...

Anyone have anything similar?

cba321

Posts : 69
Join date : 2012-07-14

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Post  Sarah001 Tue Mar 05, 2013 8:43 pm

Yes indeed I do! I have Hypermobility Syndrome so all my ligaments are lax and my pelvis is the worst area and i also have problems up and down the chain the way you describe. I'm 39 and mine became symptomatic when I was 30 so the last decade has been given to pain. My V started after the other problems however when a physio gave me the advice to use more pelvic floor activity than I was doing and it was the straw that broke the camels back and that was 3 years ago. It's taken me ages to find a decent physio and I'm lucky enough to have just the one therapist to see for all the issues. Her advice is deal with the external stuff first then release the pelvic floor that will be hanging on for dear life. Do you have asymmetry in your muscles, especially your obliques and the glutes? Also have you considered prolotherapy? It's only available privately and I'm seriously considering it for my SI ligaments on the right. You're not alone though, lots of us have these issues all over that finally decompensate and cause pain and problems.
Sarah001
Sarah001

Posts : 1164
Join date : 2010-06-11
Age : 50
Location : UK

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Post  cba321 Wed Mar 06, 2013 7:44 am

Thanks Sarah. Can't believe no one picked it up before now, guess i should be grateful it was picked up early before pain in my lower limbs began. My pelvic floor began when I was 19, my first sexuality encounter, not sure how long the other stuff has been a round, but I'm guessing for some time. How did you get diagnosed with hyper mobility syndrome? I'm only lax in my lower limbs. Don't know about asymmetry will ask my physio. What is prolotherapy? All my therapists are private anyway. So stressful, going from everyone telling me there was nothing wrong, to so much being wrong... What else has been missed...

cba321

Posts : 69
Join date : 2012-07-14

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Post  Sarah001 Wed Mar 06, 2013 3:07 pm

I've had problems with my hypermobile joints for all my life with lots of sprains and injuries but when I started having pelvic pain (not V at that point) and went to physio after physio they all remarked I was very hypermobile and had my doctor looked at me but it was only when it had spread to lots of different joints and I had a very loose pelvis, a shoulder that dislocates, an ankle I frequently couldn't walk on and a knee that required a constant support they sent me to Rheumatology and that's where I was diagnosed. People with hypermobile joints are just hypermobile but people with pain from hypermobile joints have Hypermobility Syndrome. They have a series of movements you do and you have to have hypermobility in so many of the joints out of the ones tested plus pain in joints for over 6 months to "pass" and have Hypermobility Syndrome. Pretty much all doctors know next to nothing about it and it's a Rheumatology specialist area.

It's so easy to compensate for a while so you look normal but actually you're using all the wrong muscles to move and stabilise it can go undetected for decades and only come to light you have all these problems when pain finally kicks in and your body can't compensate anymore. The reason I asked about asymmetry is usually with the pelvis it's one side being looser than the other that causes problems and I just wondered if they had you doing different exercises for the differing problems from side to side? Alot of physios I've seen haven't realised this and they've had me doing the same on each side which obviously didn't help.

Prolotherapy is where a private doctor injects an irritant solution into the ligaments to set off an inflammatory response so your body lays down extra collagen which in turn thickens and strengthens the ligament. It doesn't always work but I've spoken to lots of people online it has worked for and I've been struggling with my right SI joint in particular so severely and so long I'm seriously considering it. If I could stabilise that joint I'd be able to have my pelvic floor released much sooner. I plan on talking to my physio about it next time I go then booking a consultation at the clinic near me that does it. Only doctors do it in areas such as the SI joints but if you google it along with your area it should show you the nearest clinics that do it. Prices vary, the clinic I plan on going to charge £110 a session which is a pricey risk but if it works well worth every penny.
Sarah001
Sarah001

Posts : 1164
Join date : 2010-06-11
Age : 50
Location : UK

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Post  cba321 Sun Mar 10, 2013 1:15 am

At this point in my life my hypermobile joints aren't causing direct pain just contracted muscles and biomechanical problems with use of muscles and alignment of bones. Guess I am lucky that I can try and correct it with therapy. Doesn't seem like I have hypermobility syndrome, I'm just hypermobile and how much of that has contributed to V...I don't know.

My left sided muscles are a lot more tense that the right, my left foot also has a lot more problems than the right. My physio hasn't given me exercises as yet as I am going to an exercise physiologist next week to work out the best exercises. I will mention about one side being more contracted than the other

The prolotherapy sounds very interesting! Will have a look into it.

Thanks for the info


cba321

Posts : 69
Join date : 2012-07-14

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