Vulvodynia Support
Would you like to react to this message? Create an account in a few clicks or log in to continue.
Log in

I forgot my password

Latest topics
» Hope to all my suffering ladies
Big Hugs and Hope EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Big Hugs and Hope EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Big Hugs and Hope EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Big Hugs and Hope EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Big Hugs and Hope EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Big Hugs and Hope EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Big Hugs and Hope EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Big Hugs and Hope 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!
Big Hugs and Hope 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


Big Hugs and Hope

+2
Mouse
noni
6 posters

Go down

Big Hugs and Hope Empty Big Hugs and Hope

Post  noni Mon Jan 10, 2011 10:56 pm

hi ladies

So my nightmare began all of a couple months ago. The burning, itching, and general discomfort. My search for help started with me going to the walk in clinic and them sending me to a gyno. He basically just dismissed me and gave me yeast antifungals and cream, you all are familiar with this. Then when i returned two weeks later still complaining...he gave me diflucan. Obviously that didnt work. Then got tested for stis those came back negative. Have probably seen five medical professionals, however the last one a dermatologist, upon examining me immediately diagnosed me with vulvodynia, and now i am waiting for my next referral to a vulvar clinic.

I am very frustrated and feeling alone. I can no longer ride my bike, walk comfortably, sit, or feel like a normal person. Also being told I was crazy or a former sexual abuse victim, has not helped my mental state. I have no one to confide in. Going to work is horrendous as I am constantly being reviewed by supervisors and having to interact with people in a relatively chirp manner, all the while in terrible discomfort.

Ladies help me out, could i simply have a terrible allergic reation to a soap i used in the past, as in this is just a skin thing, or is that what vulvodynia is...f-ed up vulva skin tissue.... or is it my nerve endings...
do u think the vulvar clinic will finally help me...what if they again say they dont see anything

I DO NOT like being acutely aware of the girl bits. This is what people dont understand, its like if you have a bad knee, then you are constantly aware of it. Same with this b.s.

PS : i am so sick of these quacks prescribing cremes that only provide temporary relief at best. I am terrified of putting ANYTHING down there. The cremes are nasty and thick and greasy, just gross.

Please: Any words of wisdom for me, especially when i am on the rag, i just feel so much worse, maybe its my mood or maybe something else. The pads feel like sandpaper down there....


Thank you for reading. tongue

noni
noni

Posts : 242
Join date : 2011-01-10
Age : 36
Location : Ontario

Back to top Go down

Big Hugs and Hope Empty Re: Big Hugs and Hope

Post  Mouse Mon Jan 10, 2011 11:25 pm

Hey there, well you are in the right place! We are all going down the same road and have mostly been treated like fools by the medical profession. Over the Christmas break I ran into the gyny (twice! I'm avoiding that cafe now) who told me to see a sex therapist and take evening primrose. She treated me like a fool and all via email or her bloody receptionist because she wouldn't give me an appointment! Oh that was until I got fed up and asked for a referral somewhere else. She then needed to see me and charged me $90 for the pleasure of saying she had no idea what to do and she'd never seen it before. Pick up a book lady!

The vulval clinic is a great place to start, that's where I found my new improved specialist. She specialises in vulval pain... I think I love her... no crazy fool comments from her.

I don't think there is an easy answer but there are a number of things you can do. First, don't use soap down there at all. Wear cotton underwear or none at all when you are at home - up to you whether you do it when you go out I suppose! Sebby has posted a list somewhere, have a hunt around. A few of us are trying the no sugar/yeast free diet. Alcohol and coffee are triggers for me so I try to avoid them.

Being constantly aware of your girl bits is a curse, wouldn't it be much easier to have a headache? I'm having plenty of those as well - caffeine withdrawal!!! Aaahhhhh! I haven't been able to cross my legs since this started but I can now sleep in most positions. When it kicked off I could only sleep on my back.

I have a different sort of V but there are others who have the same and we all have plenty of advice.

I'm pretty keen on therapy, strange because if she'd given me that advice to my face I proabably would have hit her. Having someone to talk to is REALLY important.

Also check out the FB group, if you want to join you need to give sebby your details. It's completely private and doesn't post to your wall ... pheww!!! We are a small but perfectly formed group and it's lovely to put faces to names.

Good luck and welcome
Vicki


Mouse

Posts : 303
Join date : 2010-09-09
Location : New Zealand

Back to top Go down

Big Hugs and Hope Empty Re: Big Hugs and Hope

Post  noni Mon Jan 10, 2011 11:45 pm

Thanks for your support and kind words of encouragement Vicki. Yes I will definitely ask the doctor at the vulvar clinic about support groups in my area. I think the psychological impact is just as, if not more, influential on my well being. The general population has never ever heard of this. I never heard of it before my journey began. So I need to talk to women who actually KNOW this is REAL hello!!!

Yeah...I dont know what worries me more about my next appointment, being told I have nothing (as per usual) or being told I conclusively have vulvodynia by a vulvar expert.

I dont know anymore.

All I know is there's something wrong.

Thanks again this is very much appreciated. Wink
noni
noni

Posts : 242
Join date : 2011-01-10
Age : 36
Location : Ontario

Back to top Go down

Big Hugs and Hope Empty Re: Big Hugs and Hope

Post  Sebby (Admin) Mon Jan 10, 2011 11:57 pm


Welcome to the forum!

I think Vicki means this link https://vulvodyniasupport.forumotion.net/t171-secret-suffering-website-tips

A few good tips I got from another site.

There are a few theories on the causes of Vulvodynia, some think its pelvic floor dysfunction, nerves, skin disorder etc...

I seem to think it could be a little of all..which is often why a multidiciplinary approach seems to have better results.

For instance I know my skin is sensitive so I do not use any products down there, no purfumed products nothing apart from water and lube to use with my dialators

Also as I mentioned Im going to get refered to a womens physical therpist and am also doing home dialators as well as biofeedback very soon.

I am waiting to see if the pelvic floor route yields any results...

The Vulval clinic is a great place to start, also get refered to a pain clinic and see a women's physical therapist..may as well get it all rolling!

Good luck and take care

Sebby
xx
Sebby (Admin)
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 43
Location : London UK

https://vulvodyniasupport.forumotion.net

Back to top Go down

Big Hugs and Hope Empty Re: Big Hugs and Hope

Post  [Sara] Tue Jan 11, 2011 4:06 am

Hi noni cheers

You came to the right place. I found this forum a couple weeks ago and it has helped me so much. It's so much better to talk about things instead of internalize them (that's what normally gets me depressed about everything). My symptoms are a little different than yours; I don't have the itching and my therapist thinks my symptoms are from pelvic floor dysfunction. My pelvic floor is almost constantly in spasms, it burns like a UTI when I pee, and with penetration I feel the rawness, burning, and stabbing pains. Sometimes I take muscle relaxers to help relieve the spasms (sometimes they are very painful), and my therapist is having me do pilates type exercises to stabilize muscle groups surrounding my pelvic floor; it seems to be helping make penetration less painful now. I also starting using dilators (just put one in and leave it for 5-10 minutes) and I think that's helping as well.

It's funny you mention not being able to ride your bike anymore, because we think that's what caused my vulvodynia. My husband and I went bikeriding a lot this past spring, which was when I started having the symptoms. I hadn't been bike riding since I was in Jr. High and never had any problems with it then. My therapist thinks that my floor suffered trauma from the recent bike riding. I think it's safe to say that I will never ride a bike ever again, even if I ever do get cured of this horrible condition. Laughing

[Sara]

Posts : 26
Join date : 2011-01-01

Back to top Go down

Big Hugs and Hope Empty Re: Big Hugs and Hope

Post  noni Fri Jan 14, 2011 3:13 pm

I just feel for you guys so much. Keep the faith.
noni
noni

Posts : 242
Join date : 2011-01-10
Age : 36
Location : Ontario

Back to top Go down

Big Hugs and Hope Empty Re: Big Hugs and Hope

Post  Sarah001 Fri Jan 14, 2011 7:28 pm

This is to [sara], can I ask what exercises specifically you are doing around your pelvic floor? I'm heading in that direction too and find if I exercise certain muscles around the pelvis it helps relax the pelvic floor off but areas I'm struggling to strengthen without upsetting the pelvic floor is the transversus abs and multifidus because obviously they co-contract with the pelvic floor. I can't do adductor work as mine are tight and it makes things worse so mainly I do glute medius, glute max and try to contract the transversus abs without the pelvic floor but so far I haven't been very successful at that. I was taught originally to initiate a local system contraction from the pelvic floor so I'm struggling to separate it now! Do you do TrAbs work and manage to keep your pelvic floor quiet? If so any hints on how you were taught to do this?
Sarah001
Sarah001

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

Back to top Go down

Big Hugs and Hope Empty Re: Big Hugs and Hope

Post  [Sara] Sun Jan 23, 2011 10:08 pm

To Sarah001-

When I have access to a scanner I will scan my exercise sheets for you. Here are the titles at the top of each exercise:
  • Rib Cage Arms
    Twist
    Parallel Side Lean
    Swan Prep
    Single Leg Kick
    Prone Single Leg Raise
    Side Kick
    Side Leg Lift
    Inside Leg Lift
    Over/Back: "Hot Potato"
    Clam
    Bridge


When I did biofeedback therapy we found out that my abs abnormally contract and also have spasms. My pt's goal is to get the muscle groups stronger so that they work together, instead of against each other. The muscle tissue of my abs is very tight and still feels like I'm flexing even when I am at rest. I have trouble separating my abs from my pelvic floor as well when doing contractions, so I'm afraid I don't have any tips on how to separate them. Neutral


[Sara]

Posts : 26
Join date : 2011-01-01

Back to top Go down

Big Hugs and Hope Empty Re: Big Hugs and Hope

Post  Sarah001 Mon Jan 24, 2011 7:54 pm

Similar kind of things to what I'm doing, trying to correct muscle imbalances. Are you what physios term a "breath holder"? I used to do that all the time and grip with the upper abs so they always looked contracted, took alot of effort for me to stop that particular faulty pattern too! I really struggle to avoid the pelvic floor with the Tr Abs work, my pelvic floor just leaps right in there and my abs don't do much, it's very frustrating but I expect practice is the only way to get to grips with it.

Immediately after an exercise session I feel noticeably better but it doesn't last at this point but at least it's motivation to keep going. I'd be very interested to see the exercise sheet, I'm always on the lookout for more exercise to stabilise my pelvis.
Sarah001
Sarah001

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

Back to top Go down

Big Hugs and Hope Empty Dermatologist in Melbourne Cured my Vulvodynia

Post  angelique Tue Feb 01, 2011 10:48 am

Please read the information I have posted on the Dermatologist and Advantan Fatty Ointment, I was in the same boat with the very harsh soaps, it destroyed the vulva skin and I was in so much pain, the Dermatologist prescribed the ointment for skin healing and Allegron 10ml for pain relief. Perhaps speak to you doctor about these medications and going to see a dermatologist.
angelique
angelique

Posts : 9
Join date : 2011-02-01
Location : Melbourne Australia

Back to top Go down

Big Hugs and Hope Empty Re: Big Hugs and Hope

Post  Sponsored content


Sponsored content


Back to top Go down

Back to top

- Similar topics

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