Vulvodynia Support
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» Hope to all my suffering ladies
Please tell me this can get better EmptyFri Oct 23, 2020 12:04 am by ringostarr26

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

» By no means cured, but doing much better!
Please tell me this can get better EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Please tell me this can get better EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Please tell me this can get better EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Please tell me this can get better EmptySat Jun 15, 2019 5:22 pm by mary jane

Please tell me this can get better EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Please tell me this can get better 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!
Please tell me this can get better 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.


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

Please tell me this can get better

7 posters

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Please tell me this can get better Empty Please tell me this can get better

Post  Bx11 Mon Feb 19, 2018 12:03 am

After 8yrs of pain and suffering I’m just about at my wits wend. I feel I have missed so much with my husband and put him through so much. The lack of sex is killing my sex drive and we have been robbed of so many special nights including engagement dn wedding. Now it’s stopping us trying for a baby when all my fiends are on number one or two and the family who are in the dark are getting suspicious. I don’t no who to turn to and the pain today has as good as had me in tears. I feel like all the options lead to a dead end and I don’t no what to do anymore. I cannot get any help through the Doctors and feel totally lost and alone. Sad


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Join date : 2018-01-21

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Post  anon99 Mon Feb 19, 2018 2:10 am

Please do not feel discouraged. Know that you’re not alone and many of us can empathize with you. I found during my toughest times that counting my blessings helped to keep my psyche in check. If you dwell too much on the pain, it can take over you.

I will pray that you find relief from the pain. Please don’t give up. There were times when I hated my life because of the pain. However, today I am better and I’m glad I didn’t give up. Please know that better days are ahead.

Sent from Topic'it App


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Join date : 2013-11-11

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Post  Alana3 Wed Mar 07, 2018 3:26 pm

You will make it out just fine! I understand the discouragement, but know that YOU are better than this shit disease. Stronger too!


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Join date : 2012-09-25

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Post  sarisbaris Fri Mar 09, 2018 4:05 am

I'm so sorry you're going through this. Don't lose hope! I am cured and I battled it for 15 years. (It doesn't take that long to heal). Once I figured out the cause and did the protocol, I was fine. Literally fine. I can have lovely sex and it's great. So now I troll the internet trying to help others. Here's my blog. Read through it.

Lately, I've been talking to women over the phone to help them come up with a plan and place to start, since there is so much to do. I just did this alone for years and I just want to help.

Please read and if you want to talk, just email me. My email address is on the bottom of the blog.



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Join date : 2014-02-17

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Please tell me this can get better Empty What kind of treatment are you trying?

Post  wuhujen Sat Apr 14, 2018 7:45 pm

I am so, so sorry for the pain you're experiencing (both physical and mental/emotional!). What types of treatment are you doing? My symptoms started improving dramatically after finding the right drug combination and an amazing physical therapist. In PT I don't just do exercise, but we use a combination of dry needling, trigger point therapy, and guided exercises. I highly recommend finding someone who has expertise in pelvic floor physical therapy. What part of the world are you in?


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Join date : 2018-04-14

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Please tell me this can get better Empty this may help

Post  amf329 Sun Apr 15, 2018 11:31 am

Hi everyone,

I wanted to share a free resource with all of you that's been hugely helpful to me in healing!

It's a free webinar that I participated in about a year ago and then signed up for Lorraine's course, which has been very beneficial.

If nothing else, listen in to the webinar - you'll feel heard and understood and most definitely not alone. It's free, and I told her I wanted to share it here because I feel so many of you would benefit from it.



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Join date : 2017-03-08

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Post  Guest Sat Jul 28, 2018 6:33 am

I am trying to get the word OUT!!! 20 years of “vulvadynia”, ic, vestibulitis. Whatever the docs want to calll it. It’s been beyond depressing and has made me feel downright crazy at times. Incredibly painful, living in silent pain, going to doctor after doctor just to hear that “my mind is causing my vestibular area to flare up”.
It’s a VERY hard bacteria to find!! Does NOT show up in urine cultures!! There’s a very specific test to find it and you MUST insist on being tested!!!! PLEASE BELIEVE ME!!! After 20 years of this craziness I FINALLY was diagnosed with this bacterial uti and THIS is what has caused the vulvadynia!!!
Doctors don’t even know about this. My new primary care tested me after showing up with a Walgreens uti rest showing positive leukocytes. The urine culture came back negative as usual. She had a sad talk with me about vulvadynia.
I don’t know what came over her to send the urine off to a lab and get it checked for ureaplasma, but she did. I am SO grateful. I am FINALLY HEALING quickly!!
Ueraplasma only responds to certain antibiotics. I’m on doxycycline. 14 days and it may take several rounds. This is a serious bacteria and it can kill you.
Some doctors will dismiss this test and bacteria and say it’s part of our flora. NO-INSIST. If it shows up as an infection because it’s colonized, it IS the cause of vulvadynia.
I’ve been through biofeedback, neurontin, creams, specialist after specialist.
I’ve found small handful of other ladies on the internet who have posted the SAME about their ureaplasma diagnosis. They are doing cartwheels like I am!!!
I am really trying to get to word out!!! I promise you ladies!!!! There is a CURE!!!
DO NOT GIVE UP!!!!! Trying to reply to as many women as I can!


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Post  sammykramer Sat Jul 18, 2020 7:38 pm

Alana3 wrote:You will make it out just fine! I understand the discouragement, but know that YOU are better than this shit disease.  Stronger too!

I have had vulvodynia for 28 years. There was no google, or social media to turn to for help. I went from doctor to doctor. Some said "I had to get used to it." Then, someone recommended a gyno to me. He didn't know the treatment, but sent me to a dermatologist at Emory, Dr. McKay. She put me on 85mg. of amitriptyline, and it totally worked. I have been on it for 28 years, and I'm pain free. So, you can be helped.


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