Log in

I forgot my password

Latest topics
» 7 months since the diagnosis
Just Diagnosed with Vulvadynia  EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Just Diagnosed with Vulvadynia  EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Just Diagnosed with Vulvadynia  EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Just Diagnosed with Vulvadynia  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!
Just Diagnosed with Vulvadynia  EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
Just Diagnosed with Vulvadynia  EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
Just Diagnosed with Vulvadynia  EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
Just Diagnosed with Vulvadynia  EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
Just Diagnosed with Vulvadynia  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


Just Diagnosed with Vulvadynia

Go down

Just Diagnosed with Vulvadynia  Empty Just Diagnosed with Vulvadynia

Post  CherryTree23 on Tue Aug 02, 2016 9:11 pm

Well, I was just diagnosed today, yay...my symptoms are just burning pain in vaginal opening. This all came about after taking Bactrim, Monistat, Clindomycin and Diflucan. This doctor was extremely confident I have Vulvadynia. Also told me my vaginal skin isn't red. Yes, it is, mine isn't typically electric red. He prescribed Ampytripline (sp) said, I have a very mild case, and worse case scenario we'll just remove the skin...yikes. This doctor was a jackass. Now, getting depressed, scared and a burning vagina. Someone please help

CherryTree23

Posts : 11
Join date : 2016-08-01

View user profile

Back to top Go down

Just Diagnosed with Vulvadynia  Empty Re: Just Diagnosed with Vulvadynia

Post  emalita on Tue Aug 02, 2016 11:12 pm

Vulvodynia simply means "chronic vulvar pain without an identifiable cause" (per the National Vulvodynia Association). It is a diagnosis of a symptom, not a disease. The cause of the pain or burning is different for everyone. It can be caused by things like nerve issues, irritants/allergies, disrupted flora (inflammatory vaginitis - this is part of my issue), undiagnosed skin conditions (lichen sclerosus, lichen planus, etc.), pelvic floor dysfunction, etc. So don't be too nervous because the doctor basically just told you that he has no idea what's wrong with you, and I would personally be very leary of a doctor who starts talking surgery so soon.

I would really recommend finding a vulvovaginal specialist who treats women with vulvodynia on a VERY regular basis. They are your best bet for proper guidance with treatments, but sometimes they can be useless idiots, too.

You've only had this pain since May (not diminishing your symptoms in any way); so you are still in the early stages, and hopefully you can help prevent it from getting worse. My advice is still the same...do not put anything on your vulva or in your vagina. Please give your lady bits a chance to figure themselves out. Certainly take the amitriptyline as prescribed since it is, I'm assuming, in pill form, but if your issue was caused by antibiotics and then irritated by antifungals, I can tell you with absolute certainty that throwing more lotions and potions at it is only going to make things worse.

Please be kind to yourself and take a few deep breaths before using another vulvar or vaginal treatment. You will get through this and will more than likely have a greater respect for your lady parts in the end Very Happy

emalita

Posts : 249
Join date : 2016-03-29
Location : USA

View user profile

Back to top Go down

Just Diagnosed with Vulvadynia  Empty Re: Just Diagnosed with Vulvadynia

Post  CherryTree23 on Tue Aug 02, 2016 11:30 pm

Thanks so much for your reply! The Doctor was just so cavalier about it! He was so sure these nerve pills would get rid of all the pain in a few days...From my reading it looks like it can take much longer!

I will definitely not be putting on any lotions, that's for sure!! This whole thing is so confusing. I guess I wasn't looking at this as a broad diagnosis. It's hard to really understand what exactly this is!

CherryTree23

Posts : 11
Join date : 2016-08-01

View user profile

Back to top Go down

Just Diagnosed with Vulvadynia  Empty I am cured of Vulvodynia

Post  angelique2016 on Tue Aug 16, 2016 12:13 pm

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) used sparingly every night only before going to bed, and not to wash to much off in the shower in the morning. I did this for about 3 months, took the Nortriptyline at night before bed and used the ointment at night before bed. This worked, why, because the Nortriptyline, is for pain, and makes the brain stop thinking about the pain, as it has now become persistent pain, and the ointment, soothes the skin and it has properties in it to help heal the skin. Anyway I stopped posting on here as I was getting abused by people that were not able to get a hold of the medications in other parts of the world. So if anyone is interested in this information, and if you can get these medications, then it will cure you, you will need to do your pelvic floor exercises after you are cured to help strengthen the muscles again, but I hope that this information can help some people out there, as I know how extremely excruciating this problem is, it bought me to tears, and no sleep and could hardly sit, wanted to go to the hospital so many times, I nearly went crazy with the pain, and of course no intercourse what so ever, could barely even wee without pain, had to wear loose clothes, not tight jeans what so ever.

So I wish everyone all the best, please dont write back nasty things to me, simply because the medication might not be available in your country, perhaps look for medication that are of a similar nature that will help you. All the best everyone! Smile

angelique2016

Posts : 14
Join date : 2016-08-16

View user profile

Back to top Go down

Just Diagnosed with Vulvadynia  Empty Re: Just Diagnosed with Vulvadynia

Post  Linda Williams on Sat Jul 22, 2017 2:13 pm

So, what type of treatment have you had with any luck.
I was diagnosed about a year ago but am sure I have had this longer although no doctor has ever diagnosed that. I have a very long history of UTI's. I have had a, hysterectomat age 51. Then painful test to see if I had IC., again infection after infections.intercourse very painfu. I had bladder repair in 2006. Went for quite some time without infections but I intercourse still painful. Then infections started again. The urologist did 1 exam in almost a year. I would have a UT I antibiotics ...finished them infection again. Finally found a doctor ob/gyn, sub specialty bladder. I have had several, infections. Then diagnosed with vestibulis, and vulvadynua. I have used nystatin, clove tail & topic or plus Premarin vaginally. Last week he had a compound of baclofen, gabpentin, & amitriptylene, it burns but was SO red down thre...this medicine may take weeks to help Any of you ever used this? Wondering about seeing a dermatologist.

Linda Williams

Posts : 6
Join date : 2017-07-21

View user profile

Back to top Go down

Just Diagnosed with Vulvadynia  Empty My cure for Vulvodynia

Post  angelique2016 on Sat Jul 22, 2017 2:34 pm

Hi Lyndia, my doctor prescribed the following Advantan Fatty Ointment, applied sparing once a day and only at night before going to bed, around all the affected area, try not to wash it all off the next day in the shower it helps to heal the skin.  This product is available in Australia and only a few other countries, it might not be able in the UK or US.  To alleviate the brain thinking of the pain, take on tablet 10mgs of Allergron Nortriptyline Nortriptyline is a second-generation tricyclic antidepressant marketed as the hydrochloride salt under the trade names Sensoval, Aventyl, Pamelor, Norpress, Allegron, Noritren and Nortrilen  Take this just before you go to bed, it is used to stop the brain thinking of the pain, it used for pain management in low doses.  It takes about 3 months in total to get it under control, no intercourse, and thereafter pelvic floor exercises to strengthen the muscles again.  This worked for me very well, but I am not sure if you will be able to get the Advantan Fatty Ointment, it must be the ointment, it stays on the skin and prevents the urine from burning the skin constantly.  Anyway I hope this helps either yourself or someone else, as I know how painful this dreadful skin problem is.  xxxoo

Advantan Cream is available below on a UK pharmacy where you can buy online.  It might still work, may not be quite as effective, but it has the same ingredients.
https://www.unitedpharmacies-uk.md/Advantan_Cream_Methylprednisolone_Aceponate_01_15g_Tube_p_1411.html

or maybe here
http://o-t-c.co.uk/advantan-buy-online

angelique2016

Posts : 14
Join date : 2016-08-16

View user profile

Back to top Go down

Just Diagnosed with Vulvadynia  Empty Re: Just Diagnosed with Vulvadynia

Post  Linda Williams on Sat Jul 22, 2017 3:17 pm

Thank angelinue! Is this a prescription or over the counter ?

Linda Williams

Posts : 6
Join date : 2017-07-21

View user profile

Back to top Go down

Just Diagnosed with Vulvadynia  Empty Re: Just Diagnosed with Vulvadynia

Post  angelique2016 on Mon Jul 24, 2017 1:57 am

prescription medication.

angelique2016

Posts : 14
Join date : 2016-08-16

View user profile

Back to top Go down

Just Diagnosed with Vulvadynia  Empty Re: Just Diagnosed with Vulvadynia

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