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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 …

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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 …

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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.

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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 …

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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 …

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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


13 years of vulvar pain, just starting to address it

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13 years of vulvar pain, just starting to address it

Post  NOluckduck on Sun Jun 19, 2016 5:27 pm

Hi everyone just thought I would introduce myself. I have read some of your stories and I can relate quite a lot - though I wouldn't wish this on anyone I am glad that I'm not alone, so thank you for posting. I live in Canada and was diagnosed with vulvar vestibuladyina this year. I have had vulvar pain since I was about 23 or 24 years old (I'm now 37). I first noticed it when I developed painful fissures at the bottom of my vulva during sex. Since then I have had other symptoms like high sensitivity and 'raw' pain at the opening of my vagina. I also have intense itching around my vulva when I have PMS, but not sure if that's related or not. I have seen a few different gynecologists over the years and each has given me different diagnoses and possible cures (hormonal creams, suppositories, CBT etc.) however nothing has worked. Despite this pain I have never had trouble with tampons, I suppose that for some reason, the way they go in doesn't trigger the pain. Despite painful sex I was able to conceive last summer. I told my midwife about my vulvar pain and my fear that birth would result in major tearing because of it. She suggested I go to a vulvar physiotherapist and also referred me to a sexual medicine clinic at the Unviersity of British Columbia. It was through the UBC clinic that I was finally diagnosed with vulvar vestibuladyina. I did begin the pelvic floor physio but unfortunately was highly triggered during one of the sessions and opted not go back while pregnant due to the stress. Because I was pregnant at the time, I was unable to enrol in the UBC program (mvprogram) but do hope to start it as soon as I can. I had a natural vaginal birth (no pain meds or epidural) on March 9, and it was an amazing and empowering experience. My little guy is super healthy and I'm loving being a new mom. I had minimal tearing (much to my surprise) so I thought that I might be one of those lucky women who would spontaneously overcome vulvar pain after childbirth. But, my partner and I finally tried to have sex again last night, and unfortunately I quickly realized that I am not so lucky. In fact it would seem my symptoms have gotten much worse and could not have any penetration whatsoever. I'm pretty blue about this whole thing. I love sex and think it is such an important part of a relationship but now have developed a fear of it. I understand that it will be a very long road to recovery and at this point, and because I have had this condition for so long it kind of seems like it will never happen for me. Nevertheless I'm trying to avoid self-pity and to focus on what can be done. I am going to try the physio therapy again and I am going to sign up for the UBC clinic. Also I really appreciated the posts about chiropractic solutions - I have what's called a hemipelvis which means one of my hips is higher than the other. Perhaps this is contributing to my condition? At this point I will try anything. Anyway, I hope to find connection here and will keep you posted on how the different treatment options work.

NOluckduck

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Re: 13 years of vulvar pain, just starting to address it

Post  NOluckduck on Sun Jun 19, 2016 5:31 pm

I should mention that I have 'provoked vestibuladyina'

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Re: 13 years of vulvar pain, just starting to address it

Post  emalita on Sun Jun 19, 2016 6:34 pm

Hi NOluckduck,

I'm sorry to hear you're in pain, but it is great to hear that you were able to give birth with minimal tearing Very Happy

I used to get vulvar fissures all the time for many years. The fissures finally stopped when I quit using flushable wipes. So just in case you're using any sort of wipe on your vulva or when you have a bowel movement, I would highly suggest trying to eliminate them to see if that makes a difference after a few weeks.

I hope the therapy works for you once you're able to start going again. Keep us updated on how you're doing sunny


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Re: 13 years of vulvar pain, just starting to address it

Post  NOluckduck on Thu Jun 23, 2016 10:03 pm

Thanks emalita - I don't use wipes but thanks anyway for the info Smile

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Cured of Vulvodynia

Post  angelique2016 on Tue Aug 16, 2016 12:42 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 (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as it has the same ingredients, but the ointment protects the skin more when you wee, rather the cream wont stay on as long, but if used just before bed it will mean you will sleep and not have to pee) used sparingly every night only before going to bed, and not to wash to much off in the shower in the morning. (Must not use ointment in the morning, as it will cause more pain due to friction) 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 if taken in low level doses (highly levels are for depression), 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. I have been cured for many years now. 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. I tired everything, so many creams, ointments, lotions, you name it, nothing worked. It was originally caused by a harsh medicated body wash. Just use sorbolene or something like that on your body, and dont wash with harsh soaps or body washes. Just mostly water is fine, and dont sit in hot baths.

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, or go onto ebay and buy the cream. It takes time to heal, 3-6 months but you will get there, just be patient. This worked well for me, and it might not work for everyone, but at least give it a go!

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Re: 13 years of vulvar pain, just starting to address it

Post  fairlight10 on Tue Aug 16, 2016 2:00 pm

Hi angelique 2016 Thank you for telling us your story today. I too am on nortriptyline and it has given me my life back. Not 100% yet but I am getting there.

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Re: 13 years of vulvar pain, just starting to address it

Post  PainBlogger on Tue Aug 16, 2016 4:31 pm

Thanks for the info, Angelique. I can't believe people would get nasty just because a product that works for you isn't available to them! - Or actually maybe I can. But what is wrong with people! Anyway, it's great to hear you have found a way through this horrible condition. Smile

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My cure for Vulvodynia

Post  angelique2016 on Wed Aug 17, 2016 12:59 am

Thanks for the replies back, yes it was so disheartening, that I stopped posting how I was cured because people where getting nasty and sarcastic, yet all I was trying to do was to give them the information they needed to help be cured of this dreadful illness. Anyway I am glad to hear that you are on nortriptyline Fairlight, and great to hear it has given you your life back, if you are able to get a hold of the cream and use this in conjunction then you are well and truly on your way to full recovery. Like I said, go onto ebay, they are selling it in germany and one other place and will ship it internationally. Cream will be the next best thing to the ointment and to healing the skin.

advantan fatty ointment ebay or try this ADVANTAN-CREAM-15g-OINTMENT-Itching-And-Irritation-Of-The-Skin-in-Eczema in google and it should come up with what is on ebay, so you can buy it. Hope this helps a few more people, as I know how painful this illness is, in fact I only decided to post here again and I read a little girl aged 13 has posted here and she talks about how much pain she is in, and it bought me to tears to think that such a young girl is suffering so much.

All best everyone, please give these things ago, you have nothing to loose, it gave me back my life, but it is not an overnight cure, it is a 3-6 months process and use the cream or ointment very sparingly, that is the key to it also, nortriptyline 10 mgs (if for a child then I would be thinking the dosage is going to be even smaller again maybe half or quarter of the 10mg tablet) both only used at night before bed, it takes about 2 weeks to get used to the nortriptyline as it bombs you out at night, but that effect starts to wear off after a couple of weeks :-) I probably wont be posting again after this, but if anyone does read this and wants more information, if they reply I will receive an email notification and I will pop back on. And if anyone else does follow this information and get cured, perhaps they too might come back on and share their good news story too! xxxooo

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Re: 13 years of vulvar pain, just starting to address it

Post  emalita on Wed Aug 17, 2016 1:10 am

I just read that Advantan is a corticosteroid and is available only with a doctor's prescription. I'm thrilled it worked for you, but I would caution women not to buy prescriptions through ebay.

Maybe if someone is interested in trying it, they could bring the Advantan information into their doctor to discuss getting it prescribed or something similar if the brand isn't available in their location Smile

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Vulvodynia

Post  angelique2016 on Wed Aug 17, 2016 1:24 am

Yes it is a prescription medication and yes if they want to talk about it with their doctor this is fine, but it is only sold in Australia I believe, so this is why I was trying to say it can be bought from ebay. And once again, this is the reasons why I stopped posting on here because of the negativity. All the best everyone, I wont be posting again, just trying to help a few people that are suffering terribly!

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Re: 13 years of vulvar pain, just starting to address it

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