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Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» Finally found a place for me...
Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

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 cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

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: 5

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


New to the support group and have just been diagnosed

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New to the support group and have just been diagnosed

Post  KaseyT85 on Wed Jun 07, 2017 1:37 pm

I am so glad to have found a forum of women who understand and have experienced symptoms similar to mine.

This is my story so far, I have only just been diagnosed with provoked vulvodynia with a side of dermatitis after experiencing symptoms for 14 years. Yep, that's not a typo - FOURTEEN years.

During this time, I have been on an emotional rollercoaster. The amount of times that I cannot count, I tried to get help from various GP's and/or specialists. I can understand that it is a hard thing to diagnose, but I was only referred to the right specialist 14 months ago. I had my appointment with them yesterday.

The symptoms that I have suffered from over this time are: itching, burning, soreness, pain (stabbing like knives), the feeling that my skin has been cut, tearing of the skin on spots over the whole area of the inner skin of the vagina and around the anus, feeling like acid has been poured over the area, dryness, pain during sex on the inside and outside of the vagina, not able to use tampons due to pain, feeling like I have a urine infection or thrush but results coming back clear.

I am now 32, I have been suffering symptoms since I was 18. I was never really able to use tampons from the beginning due to pain, but I just didn't use them and only started experiencing other symptoms around the age of 18.

I am married, to a man who is so understanding that I cannot thank my stars enough. Currently we would be lucky to have sex 1 -3 times a year because of the symptoms that I experience. We used to have oral sex but as time has progressed, our sex life has diminished into non-existence. I am hoping that the ideas the specialists gave me yesterday will work over time and we will be able to start having some form of sex life in the near future.

What I have found with the medical industry while I have been trying to gain an answer for my issues is that each time I tried to gain an answer, I was swabbed for thrush, STD's and a bacterial infection each time and when they all came back clear, I was advised to do everything I could to eliminate perfumes and anything that might inflame the overly sensitive skin that I have compared to other women down there. Well, how many times can a person be told this before they start thinking, maybe it's all in my head, I just have to put up with it.

So over the years, other than this, I have been referred to a couple of specialists and the treatments below were prescribed:

- Gynecologist: during the appointment, the gyno looked over, took swabs and douched the highly inflamed area with vinegar to check for any cancer. The vinegar douche was both painful and embarrassing. After completing this, I was given suppositories for thrush and advised that the thrush has obviously worked under several layers of the skin, which I would never be able to fully get rid of by I would be able to maintain. I was also advised to review my diet for sugary/yeast items. I did all this, no change.

- IVF/Conception Specialist: I was sent to this doctor as my Husband and I have wanted to try and conceive a child for around 8 years. This doctor tested for thrush, STD's and any bacterial infections. He also took biopsies and while I was asleep for those, checked all the inner workings to ensure that there was no issues with conceiving inside. He tested my partner's sperm, which there are no issues with. The results from the biopsies of the skin taken from the vulvar where that they could see there is obvious inflammation but they could not determine a cause. As mine and my inner partners workings were fine, that was where this specialist advised that he could no longer be of assistance as it appeared to be a dermatological issue.

- Dermatologist specializing in Vulval issues: Again, swabs for thrush, STD's and bacterial infections, come back clear. Advised to use steroid cream, antifungal tablets, barrier cream and wash with aqueous cream. Didn't work.

Vulval Clinic at the Royal Women's Hospital in Melbourne, yesterday:
I seen both a doctor who got her boss to review the examination yesterday. She took swabs for thrush, STD's and bacterial infections but advised that they believed that I have provoked vulvodynia with dermatitis (acting as a red herring).
For the dermatitis I have been prescribed a month of steroid cream, use of aqueous cream as a substitute for soap all over the body and barrier cream to be administered 3-4 times during the day.

For the provoked vulvodynia, I was referred to the physiotherapist, who I was able to see the same day and she has explained the issue with the pelvic floor muscles and prescribed the use of dilators. I have a review with both the specialists in 4 months.

The issue with having problems in the vaginal area is that to discuss it is taboo. For many females, it is hard to work up to discussing with a doctor or asking for help, and each time you try to do that and feel like your issue is being swept under the carpet, the harder it is to gain the confidence to ask for help again.

I really don't know how my marriage has survived over the last 14 years, especially the last 6-8 where the sex has been pretty much non-existent. I feel bad for my husband, there have been times that I have told him that it would be ok if he wanted to leave me because I cannot be the wife that he deserves. The immense lows that I have felt during this time have been awful. Feeling like I am worthless, not a woman, not a wife, not able to have a normal marriage, not able to have children (which I yearn for), feeling anxious, not knowing if I would ever have an answer and anger and frustration. Anger and frustration at myself, at the medical system, at other people who have normal lives. At times, I felt like I was going insane. Insane because of the questions I couldn't answer or the physical symptoms of a unnamed monster I couldn't do anything to alleviate.

I can't tell you what caused it. I can tell you that I want to get rid of it or manage it though. I will try ANYTHING.

At the moment, while slightly relieved, I am scared and unsure. It hasn't been long enough to know if the doctors are right.
I hope they are and that soon I am able to write a more positive post Wink

KaseyT85

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Re: New to the support group and have just been diagnosed

Post  mary jane on Wed Jun 07, 2017 2:23 pm

Hi and welcome,

Doctor are stupid,fuck them.

I used to have the stabbing pain and later the itching in 2013 .. so I empathise
Has anyone offered you medication at all? Lyrica is the best for nerve pain.

Personally I was never embarassed to tell anything to my doctors, I think we think too highly of doctors in general, they are people just like you and me. They get paid A LOT for their jobs, I don't care, don't tell me they don't.

There is a plethora of treatments to try, combinations of medication, lidocaine creams, lidocaine patch for local anesthesia, pelvic phisio, desensitization therapy (you can do it yourself), trigger point injections, and then the big guns like nerve blocks (more of a last resort).

do you now when your v started? what triggered it ?
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Re: New to the support group and have just been diagnosed

Post  mary jane on Wed Jun 07, 2017 2:26 pm

I also had inflammation problems in 2013 ...It may be neurogenic inflammation.
Ever tried antihistamines? You can take atarax, some patients will respond to it. It treats anxiety as well as the allergy
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Re: New to the support group and have just been diagnosed

Post  KaseyT85 on Thu Jun 08, 2017 9:00 am

mary jane wrote:Hi and welcome,

Doctor are stupid,fuck them.

I used to have the stabbing pain and later the itching in 2013 .. so I empathise
Has anyone offered you medication at all? Lyrica is the best for nerve pain.

Personally I was never embarassed to tell anything to my doctors, I think we think too highly of doctors in general, they are people just like you and me. They get paid A LOT for their jobs, I don't care, don't tell me they don't.

There is a plethora of treatments to try, combinations of medication, lidocaine creams, lidocaine patch for local anesthesia, pelvic phisio, desensitization therapy (you can do it yourself), trigger point injections, and then the big guns like nerve blocks (more of a last resort).

do you now when your v started? what triggered it ?

Hello Mary Jane,

Thank you for your response, I appreciate it.

I have been experience symptoms since I was approx. 18 and and I am now 32.
I can't pinpoint what triggered it. Like a lot of people, I and Drs. treated it like it was thrush to no avail.
I have started with treating the dermatitis with steroids and barrier cream.
The physio has asked me to start using the dilators, so I will attempt that as well.
I guess if the dilators don't work I might be prescribed something different.
I'm not currently experiencing a flare up as I haven't recently had sex or done anything else to affect it.

Wait and see how these treatments go Smile

KaseyT85

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Re: New to the support group and have just been diagnosed

Post  KaseyT85 on Thu Jun 08, 2017 9:01 am

mary jane wrote:I also had inflammation problems in 2013 ...It may be neurogenic inflammation.
Ever tried antihistamines? You can take atarax, some patients will respond to it. It treats anxiety as well as the allergy

Hi Mary Jane,

I have not tried antihistamines - I might give them a go Smile

KaseyT85

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Re: New to the support group and have just been diagnosed

Post  mary jane on Thu Jun 08, 2017 9:39 am

KaseyT85 wrote:
mary jane wrote:I also had inflammation problems in 2013 ...It may be neurogenic inflammation.
Ever tried antihistamines? You can take atarax, some patients will respond to it. It treats anxiety as well as the allergy

Hi Mary Jane,

I have not tried antihistamines - I might give them a go Smile

You should definitely try it !

I am reposting what I found on another forum:

Originally Posted by Rebecca___p View Post

"Hi girls, I've had this pain for as long as I can remember (I'm 17 due to the pain being sometimes unnameable and just made me so fed up nothing could be done). I've been to 2 gynaecologists 1 of which helped me out so much and can thank my treatment for. I didn't even realise I had this until he told me, and was shocked that my previous gynaecologist did not see this. Vulvar vestibulitis (aka vulvodynia) is caused mainly by having thrush multiple times, making the nerves in the vulvar more sensitive. He told me that he had a treatment and I was so happy. -I am easily susceptible to thrush:((-
He prescribed me Atarax (an anti anxiety medication) it has been succesful in treating my discomfort. He first prescribed me 10 millagrams as he wasn't sure how I would be with the side effects/will cure my VVS with this low dose, (which are just drowsyness but can be managed by taking in at night -I didn't get any of the side effects-) it helped out my VVS but not treated it completely (I only took this for 28 days). He then prescribed me a higher dose of 25mg (which I am currently on for 3 months till my next check up). If that has treated it I will have to take the pills for 6 months for it to go. However if I still have it I will have to move to 30mg. But he is so helpful and said either way we are treating it. I hope this helped girls. It's hard to find a good gynaecologist that knows what vulvodynia is and how to treat it well."
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mary jane

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Re: New to the support group and have just been diagnosed

Post  mary jane on Thu Jun 08, 2017 9:40 am

KaseyT85 wrote:
mary jane wrote:Hi and welcome,

Doctor are stupid,fuck them.

I used to have the stabbing pain and later the itching in 2013 .. so I empathise
Has anyone offered you medication at all? Lyrica is the best for nerve pain.

Personally I was never embarassed to tell anything to my doctors, I think we think too highly of doctors in general, they are people just like you and me. They get paid A LOT for their jobs, I don't care, don't tell me they don't.

There is a plethora of treatments to try, combinations of medication, lidocaine creams, lidocaine patch for local anesthesia, pelvic phisio, desensitization therapy (you can do it yourself), trigger point injections, and then the big guns like nerve blocks (more of a last resort).

do you now when your v started? what triggered it ?

Hello Mary Jane,

Thank you for your response, I appreciate it.

I have been experience symptoms since I was approx. 18 and and I am now 32.
I can't pinpoint what triggered it. Like a lot of people, I and Drs. treated it like it was thrush to no avail.
I have started with treating the dermatitis with steroids and barrier cream.
The physio has asked me to start using the dilators, so I will attempt that as well.
I guess if the dilators don't work I might be prescribed something different.
I'm not currently experiencing a flare up as I haven't recently had sex or done anything else to affect it.

Wait and see how these treatments go Smile

Do you live in UK? Go see Wendy Reid, she sees lots of cases like yours, one of the best out there. For the dermatology aspect, there is Karen gibbon
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Re: New to the support group and have just been diagnosed

Post  KaseyT85 on Mon Jun 12, 2017 9:02 pm

Do you live in UK? Go see Wendy Reid, she sees lots of cases like yours, one of the best out there. For the dermatology aspect, there is Karen gibbon[/quote]

Hi Mary Jane,

No, I am in Australia. The Royal Women's Hospital here, including the vulval clinic, are meant to be very good.
I have another appointment with them in August.

Kasey

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Re: New to the support group and have just been diagnosed

Post  EverythingIsDifferentNow on Sun Jun 25, 2017 11:48 pm

Hi please read my posts! It might help!

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Re: New to the support group and have just been diagnosed

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