Log in

I forgot my password

Latest topics
» 7 months since the diagnosis
New and need some help EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
New and need some help EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
New and need some help EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
New and need some 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!
New and need some help EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
New and need some help EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
New and need some help EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
New and need some help EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
New and need some help EmptyMon Apr 08, 2019 7:54 am by Jo44

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


New and need some help

Go down

New and need some help Empty New and need some help

Post  LindafromNJ on Wed Feb 21, 2018 4:30 pm

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some days are better than others.  I had something like this last April after a labia biopsy and also had Lavatore Ani.  I was going to physical therapy which helped the Levatore Ani.  It all went away for 6 months and now the vaginal issue has returned.  The vaginal creams all say external which is confusing if they are vaginal.  My issues are around the entrance and a little inside.  I have Aquaphor which I have not tried and the Vaginitis Center prescribed a cream that is compounded with antidepressant, nerve pain killer and something else.  Have to get from compound pharmacy.  I have concerns about the cream as I heard it burns more than the condition it is treating. I live in New Jersey where I see no support groups as far as meeting and talking in person.  Would really like to talk to someone.  What have others been using?  Oh and by the way I have been on Estrace Cream for the last 8 months for vaginal atrophy.  I am so depressed but have a wonderful husband that is supportive.  I am retired and want to enjoy my retirement but in discomfort.  Any help is appreciated.  Thanks.  ps.  I am not the most computer literate so don't know what is meant by attach files are for. Please explain.

LindafromNJ

Posts : 8
Join date : 2018-02-21

Back to top Go down

New and need some help Empty Hang in there!

Post  Sad on Thu Feb 22, 2018 12:49 am

I am also new to this site so I can't really offer any help but to say that you are not alone. I sometimes feel like if I were to try to explain the problem to others that people would look at me like I'm from another planet. I too am in my 60's and my husband is very supportive also. I've had this problem for 20 years and have tried so many different things but nothing really helps long term in my experience.
I guess the only thing that helps (mentally) is knowing that there are others like me and I'm not some kind of freak.
If you find something that works I'm sure we would all love to know about it. ????
In the meantime I wish you the best and hope you find something that works for you,
Sad
Sad

Posts : 6
Join date : 2018-02-18
Age : 62

Back to top Go down

New and need some help Empty What has helped you

Post  LindafromNJ on Thu Feb 22, 2018 10:37 pm

Just wondering what you have done and what has given you temporary relief. I wish more people would respond to my post.

LindafromNJ

Posts : 8
Join date : 2018-02-21

Back to top Go down

New and need some help Empty Re: New and need some help

Post  fairlight10 on Fri Feb 23, 2018 1:12 pm

Hi I have had vulvar vestibulitis for almost 6 years. I was given Nortriptyline 20mgs and it started to help within a few weeks so I have stuck with it, because it is not a quick fix it can take months for you to feel comfortable again. Also,acupuncture can bring relief by bringing down your stress levels and help you deal with this horrid condition. Some of you recently have made a connection with being stressed and this condition flaring up. For those ladies who are postmenopausal, there is a vaginal moisturising gel called YES.VM that I use. It is water based contains no irritants. It can be bought on line. I would not want to put lidocaine inside me but I have used YES.VM and it was ok. Hope this has helped you.

fairlight10

Posts : 72
Join date : 2016-04-17

Back to top Go down

New and need some help Empty post menopausal

Post  LindafromNJ on Sun Feb 25, 2018 6:13 pm

I m post menopausal and had vaginal atrophy so was put on Estrace Cream which helped for 5 months. Still on the Estrace but again have pain at the entrance of the vagina. This is so depressing

LindafromNJ

Posts : 8
Join date : 2018-02-21

Back to top Go down

New and need some help Empty Not much relief that I have found

Post  Sad on Fri Mar 02, 2018 1:52 am

Boy that's a tough one! I found that cutting out all soy products gave me some relief but not as much as I had hoped.
I was on nortriptyline for awhile but that didn't help much either.

When it is really bad, sitting in a very warm bath (as hot as you can stand) sometimes temporarily helps. I also tried some special cream (can't remember the name of it) but that didn't really work either.

I am not willing to do any kind of surgery even though some people says it helps, I've also heard other people say it was a nightmare.

I was seeing a physical therapist briefly who said that working on your pelvic floor muscles helps.

The only thing that really helped for about six months was numbing shots they inject directly into the areas that have pain, but it hurt like heck and caused a lot of bleeding. I wouldn't do that again, it was quite traumatizing.

I wish I could offer you some better options as I also wish that I could find.
Sad
Sad

Posts : 6
Join date : 2018-02-18
Age : 62

Back to top Go down

New and need some help Empty RE: New and need some help

Post  Antaea on Fri Mar 02, 2018 7:28 pm

I am 68 and got have my diagnosis since nearly 2years, after an episode of one year in 2008 due to very low estrogen levels. In my case, the V is linked mainly to hormones, but this is only one aspect. I got my diagnosis 6 weeks after onset, and have taken Gabapentin since.Together with Ovesterin cream (Estrace in your part of the world), I am pain free more or less. After major stress over a long time I normally get a flare, where I have to increase the Gabapentin and also have to take HRT for one month, half a tablet each day. (Otherwise my migraines are back...) The last flare lasted 7 weeks. Now I'm back to 400 mg Gabapentin every 12th hour and Estrace cream twice a week.
It is very important to educate oneself about the different therapies and treatments. You will find an "awsome" lot of intormation here.
I also recommend to try Gabapentin. Amitryptiline is (at least here in Scandinavia) a Second Choice, it is only prescribed after at least 6 months of Gabapentin, when this drug does not work properly. It has very severe abstinence effects when you stop the medication, and some can become irreversible. Both drugs alter the perception of pain impulses in the brain. They are not pain killers.
Gabapentin is much more gentle and you can take a fairly high amount.... (3600mg a day).
During my flares I also used Tramadol at night sometimes and Parcetamol/Codein tablets. (Don't know the brand names in English). Lidocain/Xylocain also does help, even it burn in the beginning. But that is more a feeling of local heat. Cotton underwear, rinsing with lukewarm water after every visit of the bath room, using only washing oil, maybe some food changes..... I use a lot of coconut oil several times a day. I even eat a teaspoon of it every day.
For making a long story short: Everybody has her own kind of V. For us seniors, essential V often is linked to estrogen levels. What helps me, must not help you. Information is crucial, finding out what helps, too, without trying a lot of different ointments "downstairs". An equal communication with doctors and health personal, maybe demanding a promising therapy/treatment.
Antaea
Antaea

Posts : 29
Join date : 2016-05-11
Age : 70
Location : Gotland/Sweden

Back to top Go down

New and need some help Empty Tramadol worked for awhile

Post  Sad on Sat Mar 03, 2018 1:11 am

I did use tramadol for awhile but after using it for quite a long time it started making me extremely itchy. I would usually take it at night to help with the pain so I could sleep, but when it made me itchy thenI couldn't sleep because of that. So the short of it is I can't use it anymore.
Sad
Sad

Posts : 6
Join date : 2018-02-18
Age : 62

Back to top Go down

New and need some help Empty Re: New and need some help

Post  davesjen on Sat Mar 03, 2018 12:48 pm

Go to Target...as fast as you can get there...Vagicaine...their house brand, less than $3.00 a tube...it’s the only thing that’s kept me alive - works better than ANY prescription med - burns a little at first , but, nothing compared to the pain I’m used to everyday...and then numb...for a few blissful hours, I can feel nothing...blessings to all my sisters out there who suffer...

davesjen

Posts : 8
Join date : 2012-11-19

Back to top Go down

New and need some help Empty vagacaine

Post  LindafromNJ on Sat Mar 03, 2018 10:54 pm

Doesn't that burn if it gets inside? My burning is at the entrance of the vagina.

LindafromNJ

Posts : 8
Join date : 2018-02-21

Back to top Go down

New and need some help Empty Re: New and need some help

Post  Sponsored content


Sponsored content


Back to top Go down

Back to top


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