Vulvodynia Support
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» Hope to all my suffering ladies
My story: Please help and thank you for this site! EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
My story: Please help and thank you for this site! EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
My story: Please help and thank you for this site! EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
My story: Please help and thank you for this site! EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
My story: Please help and thank you for this site! EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
My story: Please help and thank you for this site! EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
My story: Please help and thank you for this site! EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
My story: Please help and thank you for this site! 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!
My story: Please help and thank you for this site! 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


My story: Please help and thank you for this site!

3 posters

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Post  jmcmil Sat Jul 07, 2012 3:29 am

I am 36, almost 37 yrs old. I reconnected with my high school boyfriend from 20 yrs ago and we had a sexual encounter and he was very rough and I bled afterwards. It had been 3 yrs since I had had sex with anyone and I am tight in the vaginal area. That’s when my nightmare began. This was last Thanksgiving (Nov 2011), 7 mos ago and I haven’t been the same since. I had pain afterwards that never went away. I went to my gyno and was tested for STD’s, all negative and I had a biopsy of skin which revealed lichen schlerosis. I was tried on a variety of steroid creams, even a compound cream and none of them took the pain away. I was prescribed Amitryptaline 50 mg at night. I tried over the counter Candula cream, Cortisone cream, and a variety of others. My pain is a burning sensation all of the time. I then went to a dermatologist, which he gave me a steroid shot and some more creams, none of them relieved my pain. He would hardly even look down there and acted embarrassed. At times I felt like the creams helped, however other times the creams did not relieve the pain and the burning continued. I then went to a gyno who specialized in vulvodynia 3 hrs away to be diagnosed with generalized vulvodynia. I had to fight back tears because I had researched the diagnosis and I did not want to hear it. He increased my Amitryptaline to 75 mg a night. For about a week, the medicine helped and I thought I would be pain free.

Then the pain came back the next week. I am miserable. I am so blessed to be able to work from home, however I sit in a pair of boxers with no underwear and sit on ice packs all day. I feel like someone took a heating iron to my vagina. Also, I feel like something is sticking me down there alot. I do daily vagina checks and can’t understand why I feel pain when it looks normal down there. Then at times, I’m blood red for no reason. The only time my vulvodynia is better is when I am on my period. I don’t understand that. Also, I have pain near my rectum area or the area between my vagina and rectum (perineum area). Today, I have a new boyfriend who is supportive, as well as my parents. I feel so isolated because I can’t talk about this with just anyone so I am so thankful to find this site. I feel like my vulvodynia rules my life. I have decreased my Amitryptaline back to 50 mg at night b/c I was so tired during the day. I can’t tell a difference from the decrease. I have pain regardless. I will give anything for any suggestions to help me be pain free.

I know everyone is different and has to find their own cure. Has anyone tried acupuncture? Does anyone else feel better during their period? Any feedback would be greatly appreciated!! Thank you so much!! I can’t imagine being pain free again!

Jackie


jmcmil

Posts : 10
Join date : 2012-06-27
Location : US

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Post  evanrude Sat Jul 07, 2012 4:08 am

Hi Jackie,

I'm so sorry to hear that you're suffering. It is so unfair. I'm lucky compared to some of the women I've read about.
My pain is pretty mild. I haven't sex in three years. The last time I tried it hurt really bad and that's when I found out
that I had vulvodynia. I don't know if it will ever go away, but I'm trying to stay hopeful. I'm too scared to have sex
again because I'm afraid it will hurt and that will just re-confirm that I'm still not better.

Anyway, my pain is usually worse when I'm on my period. Sometimes I don't notice the pain and I think maybe it's
gone for about a month. then it comes back. I don't think it is as bad as when this first started about 3 yrs ago.
I just hope it will go away on it's own one day. Since this first started I've become better at accepting it and
not so depressed about it. I've tried may things but the only thing I really do for it now is:
Take calcium caltrate daily, try to heathy, take a liquid probotic and put Aquaphor ointment on everday after I shower.
For me, it works better than vaseline or anthing else I've tried.
I keep thinking that vulvodynia must be caused by some imbalance in our vaginas.
Hopefully some doctor will figure it out soon so we can all get relief.
I pray for every woman out there who is suffering with this. It's nice to have a place to talk about it with others that can relate.

Please stay posutive. There has to be an answer out there somewhere.

evanrude

Posts : 15
Join date : 2011-11-01
Location : USA

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Post  jmcmil Sat Jul 07, 2012 4:26 am

Thank you for your supportive feedback. I will look into some of the things you listed to try. I am desperate to try anything at this point. I try to stay positive and am thankful for my good days. Most posts I have read on this site are related to sex and although I am definitely not interested in having sex when I am burning, I have a constant most all of the time. Sitting on ice seems to numb it, however I dread having to get dressed and go out because I never know if I am going to burn or not Sad I pray that the docs find a cure and that everyone on this site gets healed.

jmcmil

Posts : 10
Join date : 2012-06-27
Location : US

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My story: Please help and thank you for this site! Empty A Chiropractor has helped me!!!

Post  KathyH Sun Jul 08, 2012 4:20 pm

Hi Ladies,

My problem started in January this year after I had a hysterectomy. I was in pain from 4 days after the operation and I was examined by so many Doctors and none had an answer as to why I was feeling what I was feeling, they all said the same that they couldnt fine anything wrong. In the end I was in suc h a state that they admitted me and did a second operation as they thought there maybe some scare tissue causing my pain, this done I was still the same. My GP told me that I would have to get used to the new feelings I had down there and that it would become the norm, and that when I felt pain when out walking I should stop and listen to the birds singing and then I would forget about it, what a joke, dont know how you forget about a burning hot neddle sensation digging in your bits!!! I have since changed my Doctor.

I saw my Gynecologist again last month and when I explained all my symptons he said he thought it may be nerve entrapment in my back due to the position I was put in during the operation and that he would send me for an MRI scan and then to see the back Doctor. While waiting for these appointments I took matters into my own hands and went to see a Chiropractor, who said she thought my Gynecologist was probably right about my back. She as very wary as to what treatment she would do but used some special blocks and light manipulation and I am delighted to tell you that I am 80% better!!! so much so that my husand and I even had intercourse for the first time since before my first operation, and the lubrication we used didnt sting, I couldnt believe it
as every cream, lotion and gel I had used to try and sooth my pain only made it worse. I know every ones situation is different but I would say that going to see a Chiropractor may be an option you could try, who knows, it might just do the trick and its certainly worth a try.

I wish you all good luck and hope and pray that you all find an answer to your problem very soon. God willing the medical profession may come up with an answer before long so no other woman has to suffer this terrible complaint in the future.

KathyH

KathyH

Posts : 3
Join date : 2012-06-21
Age : 74
Location : Channel Islands

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Post  jmcmil Mon Jul 09, 2012 2:43 am

Hey Kathy,

That's great that a chiropractor helped you!! I used to see one years ago and maybe I should go see one again. The problem is that I live in a rural town and our chiropractors wouldn't know what vulvodynia is, however I could go and not mention vulvodynia to see if it helped. Anything is worth a try..thanks for the info and your supportive reply. I wish you the best of continued success! I pray too that the docs find a cure because there are so many women affected..

Take Care,
Jackie

jmcmil

Posts : 10
Join date : 2012-06-27
Location : US

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