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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 …

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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 …

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

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Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

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Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

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 …

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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: 4

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

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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


Cured of Vulvodynia

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Cured of Vulvodynia

Post  angelique2016 on Wed Aug 17, 2016 1:39 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 (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. Tried to have intercourse, which made it worse as the skin was so delicate now, it just made the skin split with masses of microscopic splits, which was diagnosed by the oncologist/gyno who examined me with a high tech microscope thingy! LOL So it took longer to heal. The skin doesn't heal down there because it is moist all the time and because of the urine and the friction of movement and rubbing from clothing, this is why the ointment works, and only used at night when you are resting, not moving around. This is why vulvodynia just keeps going on and on and on forever with no relief.

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. I feel for everyone that posts on here as I know how painful this problem is, and I know how desperate the situation gets, and how it affects every aspect of your life, This worked well for me, and it might not work for everyone, but at least give it a go!

angelique2016

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Re: Cured of Vulvodynia

Post  lindsey_taylor on Sun Aug 21, 2016 8:02 pm

It is so awful that people were writing nasty things to you! I, for one, am thankful to know that someone has been rid of this awful problem and I am very grateful to have read your story. Thank you for sharing with us! Smile It helps us with ideas of treatment options.

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Re: Cured of Vulvodynia

Post  Sarah001 on Sun Aug 21, 2016 8:24 pm

I recall way back when you used to post and mentioned Advantan Fatty Ointment, it was purely the name of the ointment that reminded me!! I don't remember anyone being nasty about it but I do remember looking for it myself in the UK and not being able to buy it here, I've just had another look and still can't find any here, however... it seems to really just be a hydrocortisone ointment as opposed to a cream and if anyone in the UK is interested in trying an ointment version Boots do one called Derma Care and it's only about £3.60 a tube, I use it if I'm using steroid ointments for anything and it's good. I can't comment on V being cured by it because it depends on the cause of the problem but if anyone in the UK fancies ointment as opposed to cream pop to Boots.

Angelique2016 very pleased to hear you're still doing well. Very Happy
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Re: Cured of Vulvodynia

Post  Ldc on Mon Aug 22, 2016 4:15 pm

Angelique2016, I would like to ask you what were your simptoms like. It makes me feel hopeful and happy reading this kind of successful stories, but before giving if a try I would like to be sure if your Problem was similar to mine. Anyway, glad to hear you are still doing great. I would consider this treatments in a while if mine doesn't work (my doctor is trying other approaches right now).

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Re: Cured of Vulvodynia

Post  sgw11 on Tue Aug 23, 2016 10:36 am

Hey,

I'm just curious, I'm from Melbourne too and also see a female dermatologist. I'm about 95% cured too after having botox injections and peudendal nerve blocks. I'm currently on amitriptyline orally and in cream form too, but I'm decreasing the meds. What was her name? I see Dr Tanja Bohl. Would highly recommend her Smile

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95% cured

Post  CarolRD on Thu Sep 08, 2016 10:41 pm

Did u have vulva pain, did you have a biopsy? Did the cream help?

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Re: Cured of Vulvodynia

Post  Suzie on Wed Sep 21, 2016 3:33 am

Hi does anyone experience yeast infection symptoms with Vulvonydia, mainly a week or so after your cycle?? Please share any remedies, supplements or products that you use..
Thank you

Suzie

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Re: Cured of Vulvodynia

Post  tinkerbelle2 on Fri Dec 09, 2016 3:09 pm

Sarah001 wrote:I recall way back when you used to post and mentioned Advantan Fatty Ointment, it was purely the name of the ointment that reminded me!!  I don't remember anyone being nasty about it but I do remember looking for it myself in the UK and not being able to buy it here, I've just had another look and still can't find any here, however... it seems to really just be a hydrocortisone ointment as opposed to a cream and if anyone in the UK is interested in trying an ointment version Boots do one called Derma Care and it's only about £3.60 a tube, I use it if I'm using steroid ointments for anything and it's good.   I can't comment on V being cured by it because it depends on the cause of the problem but if anyone in the UK fancies ointment as opposed to cream pop to Boots.

Angelique2016 very pleased to hear you're still doing well. Very Happy


Sarah, you're back! You were gone for so long. I hope you are doing OK! X
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Re: Cured of Vulvodynia

Post  Sarah001 on Fri Dec 09, 2016 9:58 pm

Hey Tinkerbelle Very Happy nice to see some familiar faces here even if it's not for the best of reasons.
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Cured 90% with Eumuaide first aide ointment

Post  Silvergirl on Sat Mar 18, 2017 4:15 am

Ladies. I'm going on my 10th using this ointment 3x a day. It's so nice not to continuously think about the pain. It's still there but better every day. Well worth the $48. First few days I did get relief but it's better each stay. Stick with it.

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Re: Cured of Vulvodynia

Post  tinkerbelle2 on Thu Sep 14, 2017 6:09 pm

Sarah001 wrote:Hey Tinkerbelle Very Happy  nice to see some familiar faces here even if it's not for the best of reasons.

Yes, I agree! Very Happy
Anyway sorry OP, so glad you found a cure and are so much better! Always inspiring to read. I love you
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Re: Cured of Vulvodynia

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