Vulvodynia Support
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» Hope to all my suffering ladies
Desperate for hope. Please help  EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Desperate for hope. Please help  EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Desperate for hope. Please help  EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Desperate for hope. Please help  EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Desperate for hope. Please help  EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Desperate for hope. Please help  EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Desperate for hope. Please help  EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Desperate for hope. Please help  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!
Desperate for hope. Please help  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


Desperate for hope. Please help

3 posters

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Desperate for hope. Please help  Empty Desperate for hope. Please help

Post  Livethegoodlife79 Thu Jun 15, 2017 11:04 pm

I just discovered this site and am very grateful to have found it. Although I have to admit some of the posts are freaking me out more. I'm literally at my wits ends. I can't sleep, eat or barely function on a day to day basis my anxiety is through the roof because of this. I really need some words of encouragement if anyone can help me see a glimmer of light at the end of the tunnel.
Background:
I have yet to be officially diagnosed but over the past 4 months I've been to multiple doctors and they all keep dismissing me. I've been told I have eczema or some doctors won't even examin me they just write a Rx for yeast treatment.
Approx 4 months ago I took Plan B. Since then it's been a tornado of random vaginal issues. A few days after taking plan B my vagina swelled up and burned so bad. I thought it was a yeast infection so I treated it like such. It didn't help. I went to a dr who didn't examin me and prescribed more yeast treatment. Still no help. I went to my family doctor who examined me and diagnosed it as vaginal eczema. Prescribed a hydrocortisone ointment. A few days later I was back to normal. I was sexually active and had no issues. Then I got my period and 2 days after it ended I got bacterial vaginosis. Was prescribed antibiotics which cleared it up but I started to show signs of a yeast infection so I took a yeast treatment. 2 days later my vagina is burning again. Went back to my doctor and he referred me to a gynaecologist (still waiting for that appointment) and told me to keep using the hydrocortisone ointment.
Fast forward to today and I'm on week 3 of constant burning but no redness or inflammation. Hydrocortisone ointment is doing nothing so I stopped that 2 days ago. During these 3 weeks I had my period and no relief. I went to a walk in clinic and they checked me but couldn't even see any redness or anything.
I have my gynaecologist appointment in 4 days (seems like a lifetime away). Because I haven't been able to get answers from doctors I've resorted to looking online and this is the closest I can find to match my symptoms.
I've been tested for stds-all negative.
I've changed my laundry soap to un scented etc
Changed my diet to remove dairy and egg and gluten
I have celiac-not sure if this is a terrible side effect that comes with it.
I realize my suffering is short in comparison to some of you on here but I can't live like this. I just starting seeing a guy and I can't even tell him what's wrong. I don't know if I should break things off because if this is how I'm going to be for the rest of my life I can't expect him to stay with me.
I can't imagine going weeks or months or more trying to find the best treatment that only lessens the pain and never having a cure or break from this. Providing I even get a diagnosis.
Please tell me how to function through life like this Sad
I live in Winnipeg, Manitoba Canada and I'm frantically searching online for local medical resources or support groups and there's literally nothing. Im on a tight budget so travelling for medical purposes or trying natural alternatives that aren't covered just aren't an option for me.
Please, I need some words of encouragement.

Thank you

Livethegoodlife79

Posts : 2
Join date : 2017-06-15

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Post  mary jane Fri Jun 16, 2017 1:08 pm

Hey, hang in there...

Don't get the impression that Vulvodynia is incurable and forever, each person is different and I know of lots of women who got better. You probably don't have vulvodynia, just an allergic reaction

So, I am not a doctor but to me, it sounds like that Plan B pill gave you an allergic reaction of some sort. Try to not resort to it again, I used it a lot in the past and ended up with adult acne and PCOS. (they're both under control btw).

The best solution at the moment for you is to
1. First of all, calm down. Anxiety to the extreme can only make you feel worse, not better. Did you know anxiety can even cause neurological symptoms? I did this mistake in the past and it didn't help my situation.
2. Try some over the counter antihystamines, there's one called Atarax, it treats anxiety and allergies.
3. Try and get some over the counter lidocaine gel like instillagel for the area, it will soothe it.
4. You might need a few days to let the area recover, you have been throwing everything at it so of course it's not "happy".

Least of all, relax!
mary jane
mary jane

Posts : 345
Join date : 2013-10-05
Location : UK

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Post  mary jane Fri Jun 16, 2017 1:10 pm

You're catastrophic right now. Never mind what the guy thinks, focus on healing yourself and then you can worry about him. He can wait for all you care!
No, it's not for life., Not even vulvodynia is for life. most women get better
mary jane
mary jane

Posts : 345
Join date : 2013-10-05
Location : UK

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Post  Livethegoodlife79 Sat Jun 17, 2017 12:31 am

Thank you so much for your kind words Mary Jane. I actually had a complete break down this morning and drove myself to the hospital. They did some blood tests for infection/vitamin deficiencies etc but they all came back normal. I should be happy for healthy results (which I am) but I'm still very frustrated not getting any answers. I have to say that's the most anyone's actually assessed me so far (blood test to rule things out) so I'm thankful for that.
It's frustrating getting the run around from doctors and long wait times for appointments. I'm trying to do my own research but it's a catch 22 because I'm reading all these terrible things (and good) but the bad is obviously what sticks. I feel like I'm becoming a hypochondriac or like I'm losing my mind. I was prescribed some pretty strong pain killers by the doctor this morning so I'm going to try those and hopefully I'm able to relax without having to think about the pain.
I wish there were women who lived closer to me that were going through this. It's so hard not having anyone to talk to. So glad I found this site and I'm so grateful that you replied with calming and encouraging words Mary Jane Smile
Thank you to anyone reading this for letting me vent.

Livethegoodlife79

Posts : 2
Join date : 2017-06-15

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Post  mary jane Sat Jun 17, 2017 8:42 am

We have a great subforum here in success Stories. If you go through them, you can see that many improve and recover

all the best
mary jane
mary jane

Posts : 345
Join date : 2013-10-05
Location : UK

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Post  EverythingIsDifferentNow Sun Jun 25, 2017 10:39 pm

Livethegoodlife79 wrote:I just discovered this site and am very grateful to have found it. Although I have to admit some of the posts are freaking me out more. I'm literally at my wits ends. I can't sleep, eat or barely function on a day to day basis my anxiety is through the roof because of this. I really need some words of encouragement if anyone can help me see a glimmer of light at the end of the tunnel.
Background:
I have yet to be officially diagnosed but over the past 4 months I've been to multiple doctors and they all keep dismissing me. I've been told I have eczema or some doctors won't even examin me they just write a Rx for yeast treatment.
Approx 4 months ago I took Plan B. Since then it's been a tornado of random vaginal issues. A few days after taking plan B my vagina swelled up and burned so bad. I thought it was a yeast infection so I treated it like such. It didn't help. I went to a dr who didn't examin me and prescribed more yeast treatment. Still no help. I went to my family doctor who examined me and diagnosed it as vaginal eczema. Prescribed a hydrocortisone ointment. A few days later I was back to normal. I was sexually active and had no issues. Then I got my period and 2 days after it ended I got bacterial vaginosis. Was prescribed antibiotics which cleared it up but I started to show signs of a yeast infection so I took a yeast treatment. 2 days later my vagina is burning again. Went back to my doctor and he referred me to a gynaecologist (still waiting for that appointment) and told me to keep using the hydrocortisone ointment.
Fast forward to today and I'm on week 3 of constant burning but no redness or inflammation. Hydrocortisone ointment is doing nothing so I stopped that 2 days ago. During these 3 weeks I had my period and no relief. I went to a walk in clinic and they checked me but couldn't even see any redness or anything.
I have my gynaecologist appointment in 4 days (seems like a lifetime away). Because I haven't been able to get answers from doctors I've resorted to looking online and this is the closest I can find to match my symptoms.
I've been tested for stds-all negative.
I've changed my laundry soap to un scented etc
Changed my diet to remove dairy and egg and gluten
I have celiac-not sure if this is a terrible side effect that comes with it.
I realize my suffering is short in comparison to some of you on here but I can't live like this. I just starting seeing a guy and I can't even tell him what's wrong. I don't know if I should break things off because if this is how I'm going to be for the rest of my life I can't expect him to stay with me.
I can't imagine going weeks or months or more trying to find the best treatment that only lessens the pain and never having a cure or break from this. Providing I even get a diagnosis.
Please tell me how to function through life like this Sad
I live in Winnipeg, Manitoba Canada and I'm frantically searching online for local medical resources or support groups and there's literally nothing. Im on a tight budget so travelling for medical purposes or trying natural alternatives that aren't covered just aren't an option for me.
Please, I need some words of encouragement.

Thank you


Hi there, I hope you're doing okay. This might help. I'm no doctor, but I believe your body is in a huge state of imbalance. You said you have ezcema. Ezcema is an autoimmune illness, which inevitably means there's toxicity in your liver (possibly gallstsones). I know countless of people, especially one guy who had a horrific case of ezcema, who tried liver flushes and healed 90%+ of their skin conditions including ezcema. You can't even tell he has ezcema, and now he works at one of the finest restaurants catering to people Very Happy You tried birth control, and this threw you off because your hormones were already in a state of imbalance prior to even trying it. This means there's something wrong with your thyroid. Don't worry, this is more common than you think. Sooo many people have this it's insane, actually. You have celiac, this means you have leaky gut syndrome. Your gut is in a condition where too much bad bacteria has hosted the area, and there's not enough good bacteria. Try bringing your body back to balance by 1.) maybe reading my posts lol 2.) probiotics/prebiotics to restore your gut flora 3.) liver flushes will immensely help you 4.) coffee enemas 5.) remove gut irritating foods. follow the AIP protocol. There's actually a lot more than this but this is a basis that will make a huge improvement on your health if you actually look into and pursue it. I recommend doing as much research as you can. That's how I got cured - I researched everyday almost every second. Hope you see this and hope this helps sunny

EverythingIsDifferentNow

Posts : 33
Join date : 2014-09-13

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