Vulvodynia Support
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» Hope to all my suffering ladies
It's not vulvodynia EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
It's not vulvodynia EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
It's not vulvodynia EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
It's not vulvodynia EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
It's not vulvodynia EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
It's not vulvodynia EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
It's not vulvodynia EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
It's not vulvodynia 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!
It's not vulvodynia 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


It's not vulvodynia

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Post  mary jane Thu Nov 28, 2013 1:11 pm

Just got back from the vulva clinic at St mary's hospital where they told me I have neither vulvodynia nor vestibulitis, nor pudendal neuralgia (seeing how I DO NOT HAVE BURNING PAIN)
they don't know what's wrong with me. f..
they're sending me for an MRI and blood tests (again).my biggest problem remains the inflammation...If anyone applies pressure on the vulvar tissue it swells and then I have a lot of pain until it subsides.
I don't know anymore, I am teary ...and my trush does not show up in their tests either.
I have unexplained vibrations in my body as wel...gaahhh
mary jane
mary jane

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Post  zarli Thu Nov 28, 2013 8:21 pm

'You will be ok ' maybe its better that it might be something else and not V.  
I will be thinking of you. I still don't understand how they can rule out V just because you don't have burning pain ??
I've seen 3 vulva specialist and they have never said that to me and I never have burning pain. Did they do the q tip test on you ?? Is there another vulva clinic or specialist you can go to ? Vulvodynia has many forms but I do know that neuralgia pain and nerve endings buzzing are strong symptoms so its a mystery to me.

zarli

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Post  Alana3 Thu Nov 28, 2013 8:50 pm

Have you been told abut endometriosis where it is usually found on the inside it can travel and cause inflammation in the hooha. Not saying it is but ivr heard similar complaints with other girls with endo esp the vibrating you mention

Alana3

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Post  mary jane Thu Nov 28, 2013 9:54 pm

hi girls,
I had the Q tip test again, only this time it did not hurt....it usually hurts like a b....however, immediately after the pressure of the Q tip I began feeling "movement" down there and now I have inflammation again...I don't know anymore....but with me, this has been from the start .....If I press on the labia majora, it starts to swell....and I have not been able to find anyone with this exact symptoms....again, my pain was triggered by an infection of the bartholin glands, although it never turned into an abcess, it just ruptured and caused some type of crazy immune response (??) I don;t know...

Alana, the doctor did actually mention endo to me, however I do not see how this can cause my vulva to swell after touching it ....
I am on 50 mg Ami/Elavil at the moment....NSAIDs have quit on me, even naproxen won't touch the swelling down there....

Am considering a rare disorder right now, or a combination of rare disorders

karma, girls, for replying to a fellow sufferer
mary jane
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Post  Alana3 Fri Nov 29, 2013 3:06 am

Because endo can grow outside of ur vag in rare cases like the cervix area dont quote me but ive heard of your problem with other endo girls... of course idk for sure but just repeating their stories. Are you absolutely positive that they were your glands that ruptured? Like dr diagnosed? I'm not trying to start anything but ive heard of similar stuff and it relates to endo (how fun I have it and its absolutely terrible) let us know

Alana3

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Post  mary jane Fri Nov 29, 2013 8:57 pm

hey alana, my doctor did mention wanting to check for endo and spinal problems.

so again, I had small cyst of the bartholin's/ vestibular gland, because it was pretty high up on my labia majora.
I swear I will soon produce a drawing for my doctors.
I took Naproxen (an NSAID) to unclog the gland basically..and it did ....but I think the infection triggered something because that same night I had vibrating pain (I know it sounds stupid, can't describe it with fancy words)...and then upon pressing on the labia majora it started swelling=inflammation=pain.
That is all I know. I was also on Yasmin at the time and I did not take any antibiotics for the infection (stupid of me). Maybe the infection with the medical cocktail triggered something? I feel like a medical mystery. pale 
And then the pain and swelling spread to the other labia majora! Amitriptyline 50 mg is working for the unprovoked pain, but I still have pain if I press on the labia. So I don't know what is wrong, honestly last night I was researching autoimmune illnesses and rare vulvar disorders and none of the photos looked like what I have. I even looked at vulvar chron's !!

now I am tormented by vibrations everywhere. my right foot, buttocks, back, random pains. Herpes?????
mary jane
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Post  Alana3 Fri Nov 29, 2013 11:22 pm

You do not have herpes haha chill out you sound like me its probably a nerve or if you have endometriosis (which I do) it can cause muscle.pain which can sit on nerves which causes the feeling you're describing. Herpes are blisters. It sounds like muscle or nerve but what do I know? I don't want to lead u in a bad direction

Alana3

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Post  tinkerbelle2 Sun Dec 01, 2013 8:59 pm

Sending hugs maryjane! I don't even know if vulvodynia is what I have either. What even is vulvodynia. The whole condition is really vague
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Post  mary jane Tue Dec 03, 2013 1:17 pm

@ tinkerbelle.... I remember reading of some women who shared your symptoms on this forum: http://www.pudendalhope.info/forum/index.php?sid=28491809e473dc4574f07472bb16bab6

I'm not saying you have PN, but it is one of the few places where they complain of vaginal burning...

on a different side note, I finally found which category shares my type of pain: LABIAPLASTY PATIENTS.
I shall mention this to my GP. dear me
mary jane
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Post  tinkerbelle2 Tue Dec 03, 2013 3:14 pm

Thanks Mary Jane! I did look into pudendal thingy I just don't get any relief from lying down etc. But will check it out! I hope you manage to find people with your symptoms too!
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Post  orchid27 Tue Dec 31, 2013 4:08 pm

This probably isn't a main source and doesn't help you diagnose your swelling response but.. years ago in college I had a serious panic attack. Once I came out of it I had this uncontrollable jerking that started as a vibrating sensation in my lower back and made my legs thrust up and upper back curve down -- seriously freaky. What I am suggesting is that anxiety of pain and not having an answer can manifest physically in some people. Maybe your vibration sensation is a form of that? Doesn't help explain the swelling..

orchid27

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Post  mary jane Tue Dec 31, 2013 5:49 pm

Hi Orchid....
I did have bad anxiety and depression in the first 2 months plus panic attacks, I have calmed down a lot since then....
my buzzing of the nerves I think is a side effect from the amitriptyline...unless I have a tarlov cyst or spinal problems as I have had mysterious sciatica symptoms...I can now differentiate between anxiety and real symptoms as I have calmed down since the background pain dissappeared thanks to the ami at 50 mg...
I suspect my vulval swelling to be some kind of autoimmune reaction to the infection I had...though not lichen sclerosus.

I don't believe the doctors anymore. I think I have overlapping conditions: vestibulitis on the right side from an inflamed bartholin gland, vulval neuropathy (I suspect like all 3 nerves involved: ilioinguinal, genitofemoral, and pudendal) plus some kind of inflammation reaction to something .... they have also found leukocytes in my urine twice !

If I were a doctor, and a good one, I would order 300 mg Lyrica, long term diflucan for the YI, cryoablation of the ilioinguinal and genitofemoral and some pudendal nerve blocks plus a 3T MRI of the stupid bartholin gland.
but I am not, I am at the mercy of the GP system.

mary jane
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Post  orchid27 Tue Dec 31, 2013 7:09 pm

Just be your own advocate! You will find a doctor that is willing to listen and willing to you and believe you enough to try what you think. You definitely have overlapping conditions, and most of us do. Good luck with everything!

orchid27

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