Log in

I forgot my password

Latest topics
» Finally found a place for me...
Today at 4:08 am by mtsp

» UK Vulvodynia Clinics
Yesterday at 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

» There is hope after all!!
Wed May 16, 2018 2:50 am by Cbrimer28

» Getting to the point of wanting to End Everything ADVICE NEEDED
Mon May 14, 2018 6:49 pm by fairlight10

» Looking for advice!
Thu May 10, 2018 8:50 pm by KB365

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: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

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: 4

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: 5

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

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


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

Go down

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

Post  cba321 on 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

View user profile

Back to top Go down

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

Post  Sarah001 on 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.
avatar
Sarah001

Posts : 1164
Join date : 2010-06-11
Age : 44
Location : UK

View user profile

Back to top Go down

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

Post  cba321 on 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

View user profile

Back to top Go down

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

Post  Sarah001 on 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.
avatar
Sarah001

Posts : 1164
Join date : 2010-06-11
Age : 44
Location : UK

View user profile

Back to top Go down

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

Post  cba321 on 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

View user profile

Back to top Go down

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

Post  Sponsored content


Sponsored content


Back to top Go down

Back to top


 
Permissions in this forum:
You cannot reply to topics in this forum