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Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 3

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

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: 6

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 3

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 10

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: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0


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

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

Post  anikita on Tue Jun 05, 2018 4:13 am

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 and it hurt. At the time, I associated it with it hurting as a result of having sex for the first time. But now that I think back, I always felt some burning when trying to use a tampon or anything of that nature - but up until last September, my previous gynecologist linked my on-and-off burning to either BV or Yeast so it was a cycle of being on treatments, to just managing to the pain. It got to the point where it would burn like crazy at the entrance, and then I'd get into it and just not feel any pain until afterwards.

This past December, I started seeing a new gynocologist who diagnosed me with Ureaplasma and treated me for it. The burning in the same spot remained. I got off Lo Loestrin for a few months and started Kariva back in February. Refrained from anything non-organic and started washing all of my undergarments and clothes in sensitive detergent. I also refrained from having sex during that time.

I'm not sure if it is worth mentioning but the areas around the vestibule, are red and those spots are the ONLY spots that burn to the touch. Sometimes it feels like I'm so severely dry when I check down there and that causes MORE burning around my urethra too - but still concentrated in those places.

In March, my boyfriend and I tried having sex again (with condoms). And the burning was MINIMAL but just for the first few seconds and then would just fade into the oblivion - this made me ecstatic. The burning was still there but not to the extent that it had been, I could tolerate it. This went on for about a month and then stupidly, after I got my period, I didn't use organic pads. Boom, the burning came back as bad as it had been, this time around though, I knew I was making it worse with the fear I was developing about sex hurting.

As of now, my doctor once again has cleared me of any infections and has told me to take baking soda sitz baths nightly if possible, and apply coconut oil to the area - not sure if she hopes this constant manual application of it will desensitize it? I haven't been THAT good on doing the things and I'm just feeling at a loss.

I know so many of you have it so much worse and my heart truly goes out for you. I am scared that it will get worse. I am scared it will not go away. I know that it's not connected to muscle tension because the red spots are the ONLY spots that hurt and they have been there for over a year now - just red sore looking skin. That's where my pain stems from. I fear that I'm psychologically connecting pain with sex and I don't want that. Sometime it burns at first but in a way that is tolerable, other times, it just completely burns and I get so turned off during the act that it burns more because I am so in my head that I just break down.

I don't know what to do, I want to enjoy the physical aspects of being a woman and not having a diagnosis isn't helping too much. I'm doing the baking soda baths but what else can I do? I don't want to turn to actual prescription drugs but I want answers, hope, advice, guidance?

anikita

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

Post  emalita on Fri Jun 08, 2018 3:42 pm

I'm so sorry to hear that you're in pain, and I know how horrible it is to associate something so intimate as sex with fear.

So I've gone through a lot of things to get to the point I'm at now (can have sex regularly with minimal discomfort), and you can read through some of my story at the link in my signature. It unfortunately has been years of trial and error and listening to my body's very subtle clues, but I'm at a much better place today than I was when this all started for me.

Do you ONLY have pain with contact (touching, tampons, penetrative sex, etc)?

Below are some things that helped me:

- A Chinese Medicine Dermatologist suggested I use unrefined hempseed oil on my vulva over coconut oil because coconut oil can clog pores and people tend to have poor reactions to it. She suggested I soak in a warm bath (can add epsom salt if you want) and apply the oil right afterwards before my skin dried to lock in the moisture (oil itself is not a moisturizer, it just locks moisture in).

- Even though the YES brand of waterbased lubricants burns a bit during initial application, I found it was and is the only thing that helps when I feel dry or a little raw after sex. It dramatically improved my vulva pain.

- Use caution with baking soda baths since they can negatively change your vaginal pH.


I wish I could give you a quick fix that would guarantee relief, but I hope some of these may help.

Let us know how you're doing Smile

emalita

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

Post  srbry on Mon Jun 25, 2018 7:22 am


Hi darling, i'm so sorry to hear what you've been going through. I'm on my 8th year myself and only got diagnosed 2 months ago. You said the burning pain was only around the vestibule. I'm sure you've done all the googling you can but have you come across vestibulodynia? Used to be called vulval vestibulitis. I'm absolutely not a dr but i find even gynos dont know much, a lot of the time, unfortunately. I have vestibulodynia and some of your symptoms sound similar so i thought i'd ask? Also where are you based? UK? US?


srbry

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

Post  Snowwhite 03 on Mon Jun 25, 2018 12:46 pm

Hi .. sorry to hear this .. are you on birth control pills ?.. I had the same issue and unless you get off the birth control pill it will never get better . It messes up the hormones and dries it up there .. try vmagic available on Amazon .. it helps .. please try to reconnect the dots and try to see if birth control pills could be causing it .

Snowwhite 03

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

Post  davesjen on Mon Jun 25, 2018 11:08 pm

My heart goes out to you! Please get to Target as fast as you can and get some Vagicaine - it won’t solve you’re underlying problem, but, at least you can numb the areas that are bothering you while you try to solve this mystery...it’s the only thing that has kept me from throwing in the towel - it’s a life saver, literally!! It’s as cheap as can be - $3 - $4....blessings!

davesjen

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

Post  sarisbaris on Sun Jul 01, 2018 4:33 pm

I'm so sorry you're in pain! I had V for 15 years and it was the worst. I've been healed for 2. I followed the protocol by Anthony William. Here's my blog. I would also suggest you also join the Facebook group Vulva Warriors. Most of the women on there are following this protocol to heal their V. A handful of us who have already been healed are on there as well answering questions.

http://myvulvodyniacure.blogspot.com/2018/05/basics.html

sarisbaris

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My Cure

Post  angelique2016 on Mon Jul 30, 2018 7:49 am

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 don't write back nasty things to me, simply because the medication might not be available in your country, perhaps look for a medication that is of a similar nature that will help you. All the best everyone!  Smile

Advantan Fatty Ointment is, in fact, a type of prednisolone, (Look it up) so if you can't get it via prescription, then have a compounding pharmacist make it up for you in with an ointment base, rather than a cream, the ointment stays on the skin and protects it from the urine, which burns the skin even more.

angelique2016

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

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