Log in

I forgot my password

Latest topics
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: 0

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

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: 1

New member desperate need of other vulvadynia sufferers

Fri Feb 08, 2019 6:55 pm by Tfc13

Hi there hope some1 reading this is going through the same shit as me!, I'm new to this so don't really know where to start , I'm Teresa , I've just been diagnosed with vestibular vulvadynia , after countless appointments with GPS being misdiagnosed, tested for god knows everything , eventually under my gynochologist ,who done all her necessary tests, I now have been given a diagnosis I'm in …

Comments: 5

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 7

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 13

Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

Comments: 0


painfree for 3 years!

Go down

painfree for 3 years!

Post  ilseke on Mon Aug 03, 2015 1:50 pm

I'm from Belgium and I have suffered from vulvodynia since I was 20. Back then gynaecologists found nothing wrong with me. I visited a lot of them...When I was +/- 35 I watched "embarrising bodies" on tv and heard of 'vulvodynia'. I knew that was it. I searched for a doctor who was specialised in it. He prescribed PLO-gel with 4% gabapentine. I applicated it for about a year and it resulted in three ab-so-lutely painfree years!!!!! Now the pain starts again and I will use the gel again. We all deserve a painfree life with nice sex. Don't stop dreaming about it!

ilseke

Posts : 5
Join date : 2015-08-03

View user profile

Back to top Go down

Re: painfree for 3 years!

Post  A2015 on Mon Aug 03, 2015 6:04 pm

Hi Ilseke,

It is encouraging to read the words "pain free", as I don't see it written often.

I had VVS when I was on the Contraceptive Pill, when I stopped taking it, I was also completely pain free and normal.
This year, I have VVS again after a yeast and bacterial infection.

Could I ask if you could describe your symptoms in some more detail? Was/is your pain confined to the vestibule and did/do you have redness/inflammation?

How did your pain start when you were 20 and what has caused the pain to begin again?

I am from London and want to ask my Vulval Dermatologist if I can be prescribed Gapapentin cream here.

Thank you so much,
A2015

A2015

Posts : 53
Join date : 2015-05-21

View user profile

Back to top Go down

painfree for 3 years!

Post  ilseke on Tue Aug 04, 2015 8:19 am

Hello

It started combined with my first sexual relation. My doctor (gynaecologist specialised in vulvodynia) says that's not uncommen. I had a lot of vaginal itch and pain: candida after candida infection and after several months it developed into vulvodynia but the vestibular variaty. I only had (burning raw) pain during intercource. If jou consider the vagina like a clock, my pain is located at 12h, where most women have it at 6h. The groep of 6h should be less resistent to therapy, according to my doctor. He said i had to use it for 4 or 5 months. With no result after that i should give up. But i just kept on using it for about a year and gradually the pain lessened and it stopped.

My gynaecologist was part of a multidisciplinary team with a psychologist, kinesitherapist and so on. But since i had experienced orgasms before my condition i didn't had to see them. And yes, after the pain subsided i experienced a lot of great sex and orgasms. cheers

I think it started again because i am vulnerable for it. I have a husband, so i have sex, wich often leads to mild candidasymptoms. And i didn't used the gel because the problem was gone.

It is still a less aggressive pain compared to when i was younger but i know it will become worse without the gel, so this afternoon my gel will be ready in the farmacy. Luckily i still had the original prescription and i just went to the towndoctor. I didn't have to pay him since he could copie my prescription and will give it to other paitients. I sent a mail to my gynaecologist. Should he say something valuable i will post it on this forum.

The gel is really expensive, but i need it. You have to buy a whole box of pills and you only need 1 or 2 pills to make the potion.

Gabapentine are pills for people with epileptica. They do something to the painreceptors in our vagina. (In Belgium that medicine is named Neurontine, but generic name is gabapentine)The pharmacist mix the pills (the powder) with a cream that is most often used for vaginal use: Pluronic Lecithine Organogel. My original prescription was 4% but there also was a note on it to prepare the gel 6%. My towndoctor prescribed me the 6% one. I hope to suppress the painreceptors rapidly... I wrote you the prescription below.

prescription for 100g gabapentine gel (4%):
take 10 pills Neurontine (or generic) 400 mg capsules gabapentine
make them into powder
look at the weight of the powder
calculate mass of pluronic hydrogel* (PLO)-fase=80% x (100g - weight of powder)
mix powdermass and PLO
add lecithine (ad 100g)
mix untill gell is homogene

for 6% gel use 15 capsuls of 400mg
* can be ordered at Fagron ( Fagron PLO kit 200g, code 2399350)


Don't give up on yourself. Get that gel and applicate it every evening. After all, what alternative do we have?
Ilse


ilseke

Posts : 5
Join date : 2015-08-03

View user profile

Back to top Go down

Re: painfree for 3 years!

Post  A2015 on Tue Aug 04, 2015 9:44 am

Hello Ilse,

Thank you so much for your detailed reply. It seems my symptoms are quite similar.

I have redness of the whole vestibule, slight inflammation, sore/raw/burn to touch, vestibule skin tears during sex because the skin is inflammed/delicate (I tear at the 6o'clock and either side just inside the opening), frequent on/off itching of the vulva (even when there is no candida found), prone to infections.

Did you continue to experience candida infections during the 3 years you were pain-free without using the gel?

Did you notice any visible changes to your vestibule skin?
Every doctor I see tells me my vulva looks "normal" to them, but I know for a fact it is red/slightly inflammed. I can say this with certainty because when I was cured from VVS after coming off the Pill, my vestibule skin tissues returned back to their normal colour & I knew I was 100% healed. When it started this time after an infection, I knew my VVS was back.
I am concerned that any nerve relieving creams won't reduce the redness so I'll never feel fully cured, but I suppose I have to start to accept that I may not be fully cured and any treatment can just help.

Could I ask if you are/were ever on hormonal birth control?

Did your pain start again without being triggered by an infection, it just started to burn during sex again?

I think mine started again (after being absolutely pain free when I stopped the Pill), because I am vulnerable to VVS after having it once before. Perhaps my body has a memory of how it responded to an infection (when I had VVS before), and that's why my symptoms have come back.

I very much hope I am able to get this cream in the UK and that my Vulval Dermatologist will prescribe it to me. I will bring your description with me, thank you very much.

A2015

A2015

Posts : 53
Join date : 2015-05-21

View user profile

Back to top Go down

Re: painfree for 3 years!

Post  ilseke on Tue Aug 04, 2015 3:06 pm

During the 3years i had sometimes an itch or candidelike symptoms, but very mildly, nothing that couldn't be solved with cold wather. I didn't have to take any medication. When i was 20 i had some monstreous candideinfections and they discolored my skin permanentely. I know that, because i can compare it. Doctors think it is just normal.
I never took birthcontrolpills. Maybe condoms are better because there's less bodyfluid and less chance to invoke an potential infection.
The vvs just restarted like that. At first a very little bit of pain, i didn't noticed it wright away.
But here we go again Wink

ilseke

Posts : 5
Join date : 2015-08-03

View user profile

Back to top Go down

Re: painfree for 3 years!

Post  Sponsored content


Sponsored content


Back to top Go down

Back to top

- Similar topics

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