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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 …

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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

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 …

Comments: 1


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

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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?

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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.
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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...

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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.
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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


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