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» Vestibulectomy
Fri Aug 18, 2017 12:39 pm by Hopeitworks

» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

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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 …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

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Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

Comments: 2

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

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: 0


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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