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» Can you guys tell me your experiences with diflucan/Fluconazole?
Today at 1:29 am by ryn207

» So frustrating!!
Today at 1:25 am by ryn207

» Looking for suggestions or encouragement
Today at 1:19 am by ryn207

» Looking for a friend..... and new problems
Yesterday at 10:00 pm by VVSSufferer

» Vestibulectomy recovery question!
Sun Jan 14, 2018 11:37 pm by Kezz

» Prescription creams that work!
Sun Jan 14, 2018 4:46 am by Mintaherb

» Struggling
Sun Jan 14, 2018 4:29 am by Mintaherb

» Went Away and Came Back
Sat Jan 13, 2018 10:56 am by mary jane

» Amitriptyline given for vulvodyina pain
Sat Jan 13, 2018 1:39 am by ryn207

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

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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 …

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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



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Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

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7 years later and life looks bleak :(

Wed Dec 06, 2017 2:50 am by RainyShay77

So 7 years ago I had a case of BV...the antibiotic caused a horrible yeast infection which took 5 months to 'get rid of'. During this time I had allergic reactions to 2 of the yeast infection creams which magnified the pain. Over the past 7 years I've tried multiple rounds of physical therapy (they only slightly helped), chiropractic, nerve blocks, medications to target nerve pain (amitriptyline, …

Comments: 7

Newly diagnosed - and prescribed amitriptyline cream/physio/psychology

Sun Jan 07, 2018 9:38 am by sophiarp

Hi everyone,

I'm so happy to have stumbled across this forum. I have just been diagnosed and am really struggling emotionally. It's nice to find this forum and feel a little less alone.

I've been prescribed amitriptyline cream. Has anyone had success with this? I was happy to have avoided the amitriptyline tablets. I'm also participating in physio and have been told I need to see a psychologist …

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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 …

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Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Hello,
Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

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New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

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CURED FROM VULVODYNIA - PAIN FREE FOR 2 YEARS

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CURED FROM VULVODYNIA - PAIN FREE FOR 2 YEARS

Post  sarisbaris on Tue Mar 17, 2015 1:37 am

I had vulvodynia on and off for 15 years. (I have probably seen 15+ western doctors plus specialists in San Francisco). I tried acupuncture and TCM herbalists which helped but wasn't a cure. I got pregnant and it was horrible. I found a practitioner of Acupoint Nutritional (or Integrative) Testing who finally pinpointed the cause of my pain and alleviated my pain in a few months. It was a slow progress (a few months) but it was a permanent fix. Basically she just gave me a bunch of pills that were all herbal and natural. I was pregnant at the time. I'm so grateful. (This won't allow me to add a link but just google Acupoint Nutritional (or Integrative) Testing.  They have bad online presence, so if that doesn't work google Dawn Dolan in Cotati, CA. She can find someone in your area. Basically, she uses applied kinesiology to figure out the cause of my the problem and the remedy. Sounds crazy but it worked! Now I've been pain free for over a year!  She said that if you are not in the northern California area she can help you find a practitioner who can help. This is legit.  I'm sorry I didn't post sooner, I've been busy with my baby. If you're reading this and you're in pain my heart goes out to you. That pain was freakin unbelievable. Please give this a shot. Let me know if you have any questions.

If you would like a longer explanation of Acupoint Integrative Testing... read this. It's about the gut but it gives a nice explanation. She's pretty funny too!
http://adventuresinwoowooland.com/how-i-healed-my-gut/

I figured out a green drink that would take away my pain away in 25-30 min without fail, at least for me.  

MIRACLE GREEN DRINK
1 bushel of cilantro
½ cucumber
1 celery
2-3 lemons
1 lime (optional)
Filtered water
1 packet of stevia
*It's really all about the cilantro and the lemons. They are the most powerful ingredients.

Reverse Osmosis Water
I also started (and still do) drink only reverse osmosis water. That also helped a lot and you'll never want to drink anything else. Still to this day if I drink tap water for more than a few days my urethra will be irritated.

Braggs Apple Cider Vinegar Drink
1T in glass of filtered water (helps vaginal burning but I found the green drink worked faster)

Also, don't eat sugar, fried food, anything that is acidic, my vagina is much happier and of course, sex much better. Do some research about the akaline foods in contrast to acidic foods. That helps a lot. (Now that it's been over a year, I eat whatever I want. Sugar and all. Don't worry you'll get there, just let you body heal first)

Shuangliao Houfeng San (to use internally, keep it in your purse and use it during sex... my vagina loves this stuff. Use just a little... it's super strong)
My acupuncturist recommended this to me when the inside of my vagina gets too hot. TCM (Traditional Chinese Medicine) doctors usually recommend this for a sore throat. Use a little bit of organic sesame seed oil (not toasted sesame seed oil or your vagina will smell like Chinese food… I learned that the hard way) and a little little bit of this powder on your finger, insert into your vagina, rub it around and wait a few minutes. Another freakin God-send! When you are doing this for the first time, please use just a little bit of the powder. It’s really really strong.  The first few times, make sure you are next to a hot bath so you can soak if you use too much. The powder smells something awful but who freakin gives a sh-t if your vagina stops burning.  When my vulvodynia subsides enough to have sex (with intercourse) we put a little of this stuff on my partner and it is freakin awesome. You can buy Shuagliao on amazon

Take care!

PS - It's funny but my western Kaiser doctor has encouraged me to spread my vulvodynia story and the cure. So there you go Smile

sarisbaris

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Addition to my post above - LOVE YOUR GREEN DRINK

Post  sarisbaris on Tue Feb 02, 2016 6:54 pm

I sing the praises above for my green drink recipe that would calm my pain down within 25 minutes or so. Now I'm starting to figure out why. Throughout this journey I've gone and done some pretty crazy things to stop the pain. Now that I've been pain free for two years I'm still pretty comfortable with kooky doctors so it wasn't a big step for me to be interested in Anthony Williams. He's a medical medium. Just recently I have been reading his stuff and now I understand why this drink was so powerful. So if you're planning to start a green drink you might want to read Anthony's info first. Maybe just celery juice would do it for you. My practitioner said I had mercury in my system which explains why I loved cilantro so much... it helps remove mercury. If I have learned anything from this, it was how to listen to my body and learn why I was leaning toward certain vegetables/fruit/herbs. (I wouldn't call it craving... I don't think I ever craved cilantro. I'm still working on it Smile

My original green drink recipe was cilantro, celery, cucumber, lemon (I always added some stevia... so I would drink it)
Celery - http://www.medicalmedium.com/blog/celery (he recommend drinking this once in the morning by itself on an empty stomach)
Cilantro - https://www.facebook.com/medicalmedium/photos/a.156133001188553.33942.146789625456224/310341115767740/ (according to Dawn I had some mercury in my system from fillings)
Cucumber - http://www.medicalmedium.com/blog/cucumber-juice
Lemon - http://www.medicalmedium.com/blog/lemons

Side note: My vulvodynia pain was like a chemical burn, inside and out. As a group we should start specifying the pain type because vulvodynia is just not an accurate term for all the different types of issues out there. I've met ladies who had muscular pain which was completely different than my experience.

PS - Has this helped anybody? Some of you have called Dawn so that's encouraging. But if you need any help/support/advice/ I would love to be there for you. I was so alone on this journey. It was frightening and frustrating and incredibly scary, especially when I was pregnant. I would love to help/support you if I can. Just send me a message or reply to this board.

PLEASE DON'T GIVE UP! You might need to go out of your comfort zone but don't lose hope.

Thanks,
Sarah

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Re: CURED FROM VULVODYNIA - PAIN FREE FOR 2 YEARS

Post  emalita on Mon Apr 11, 2016 2:15 pm

I'm so happy to hear you have found relief! I would love to know more about your experience with Dawn. I sent you a PM, and I would love to chat.

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Re: CURED FROM VULVODYNIA - PAIN FREE FOR 2 YEARS

Post  Sagewoman on Mon Oct 16, 2017 2:22 am

Yes, I would love to hear more, but new to this group and don't know how to send a private PM

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Re: CURED FROM VULVODYNIA - PAIN FREE FOR 2 YEARS

Post  Katiej on Tue Nov 21, 2017 5:05 pm

My pain is more like darting nerves stabbing sometimes and really really itchy all the way to rectum. Not sure if anyone else has it that way. I do have an acid burn feeling sometimes. Id imagine mine was caused by infection and the ten rounds of antibiotics it took to treat the infection. My doc things the whole pelvic area is overwhelmed and so it needs to calm down.

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Re: CURED FROM VULVODYNIA - PAIN FREE FOR 2 YEARS

Post  sarisbaris on Sun Nov 26, 2017 5:13 am

KatieJ,
It's been a few years since I wrote this post but I've learned tons since then and I've gathered it all in one place. Ok, first. Unfortunately, I found that all western docs and alternative docs did not fully understand what's going on. Basically, I recommend following the recommendations by Anthony William. His stuff really works, it worked for me.

According to Anthony William vaginal burning can be caused by an unknown strain of strep or shingles viruses. Current medicine can't detect them in tests. I would recommend learning about both viruses. Here's a link to my blog. Start there. Listen/read the shows (under the necessary reading section) about these viruses. http://myvulvodyniacure.blogspot.com/2016/12/if-you-are-in-pain.html

From your description you might have both. I had both. His strep protocol cured the burning in the inside of my vagina and the shingles protocol worked on the outer itch or burn. He describes the vaginal shingles in his first book titled Medical Medium. He actually specifically states that it goes from the vagina to the rectum so that sounds like your rash. Specifically, lobelia was amazing! I took it internally and applied it externally to the rash. http://www.medicalmedium.com/preferred/supplements

If the rash is driving you crazy... get yin care (the link is on my blog) and for the internal burn Shuangliao Houfeng San (the link is on my blog) saved my sanity when it got really hot. But it stinks something awful so just a warning Wink

And I know it's hard working with doctors and trying to find one that knows what going on. I'm sorry to give you the bad news but I saw 25+ docs (western/alternative/specialists) and they don't have a clue. I'm saying this not to discourage you but to save you time. Understand that it is difficult for us and for them to be in the dark about this but that's where they are right now. But don't worry. I'm cured. I have been cured and I have been living normally for years.

So read through my blog. Let me know if you have any questions. I would like to create a community of those who beat vulvodynia so we can help reach out to other women. Please keep me posted.

Sarah
sarahcamp20@gmail.com


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Re: CURED FROM VULVODYNIA - PAIN FREE FOR 2 YEARS

Post  fairlight10 on Sun Nov 26, 2017 9:46 am

Thank you sarisbaris. I will certainly read your blogs. It certainly sounds logical to me. I was studying at the time and was very stressed. Shingles is not uncommon in my family so l have always thought there was a connection between vulvodynia and the shingles virus. Members of my family had extremely servere case and had to live with post herpetic neuralgia. The pain and burning are the same except the areas of the body affected by the pain. I am being helped immensley with 20 mgs Nortriptyline but it would be wonderful if we could cure this.

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Re: CURED FROM VULVODYNIA - PAIN FREE FOR 2 YEARS

Post  Katiej on Sun Nov 26, 2017 9:49 am

Fairlight I just started amitriptyline. Two weeks ago which is a similar drug. Can u tell me how long it took to work and if it took the itching and pain mostly fully away? I dont think its shingles to be honest I think it's overactive nerves and the drugs came them down overtime. In all the docs ive seen all said it would go away the ones who have to manage a life with it are ones with issues with tissues around opening and who couldnt insert tampons or have sex from a young age. The drugs are actually meant to get to the source of the issue.

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Re: CURED FROM VULVODYNIA - PAIN FREE FOR 2 YEARS

Post  fairlight10 on Sun Nov 26, 2017 11:30 am

Hello Katiej . I noticed the pain signals were being interupted at about 10 days. I was off work for 4 months before l felt confident enough to go back to work. It would sometimes let me know it was still there. If l got upset, stressed or hot. Very hot weather or sitting on a hot surface would set the nerves off in that area. You get used to the sensations that you can get down there. Tingling , mild stinging or even a mild burn. But, l do not have the severe burning and cutting pains that you can have with vulvodynia. The type of vulvodynia that young women have with the first time they have sex or use tampons can be primary. The other type is were an event for example an infection has upset the nerves is known as secondary. Mine is definately secondary. I got to age 57 years with no problems in that area. My gynaecologist told the tablets were not a quick fix. He was right there! Anyway, stay calm and positive that the meds will help you live a normal life and one day it could be gone or they find a complete cure. I have not had itching but you could try an antihistame to see if helps. Antihistames have been researched as an aid for this condition.

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Re: CURED FROM VULVODYNIA - PAIN FREE FOR 2 YEARS

Post  Katiej on Sun Nov 26, 2017 11:38 am

Okay great thanks. I noticed at about 10, days a difference also it has gotten better. Yes mine is secondary also. He said no quick fix meaning it can take a while? ,I too am off work for 2 months now. . Id like to go back but I need to see a massive difference. Im 17 days on the meds and its getting better defo. Ive so much anxiety with it. Its unbelievable. Did ur doc not tell u it would go away ? All of diff gynes and docs said it would go. I have had the stabs that felt likw knives but that calmed once I relaxed a bit. Its mostly itching n stinging and an ache. It scares.me so much im 27 and never had issues untill last year after infection and tonnes of antibiotics.

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Re: CURED FROM VULVODYNIA - PAIN FREE FOR 2 YEARS

Post  fairlight10 on Sun Nov 26, 2017 3:36 pm

No one has told me it will go away. I prayed it would, but l know it is still there. I tried to drop to 10mgs Nortriptyline but it starts to sting and irritation starts and then l start to urinate more. So up l go to 20 and it calms back down. During my first year of vulvodynia l had acupuncture. The acupuncurist also a gp. He was very supportive and also was counselling me at the same time. I really was going out of my mind and the acupuncture relieved the stress and tension l had. I did ask him how long would it take. His reply was, until you are comfortable. Until you can function without thinking constantly about what you are feeling down there. Going back to work helped with that. I can not drive my car without sitting on a round cushion with a hole in the middle. I able to sit normally at home. When l go out to a restaurant l have no problem asking them to change the chair! Intimacy is ok.

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Re: CURED FROM VULVODYNIA - PAIN FREE FOR 2 YEARS

Post  Katiej on Sun Nov 26, 2017 3:41 pm

Well thats good. Why havnt they told u it would go away. Two gps two gynes a pt and a accupunturist all said I have the one that will go away. But can take a while. Did they tell u its the nerves that are aggrevated? Id love to go back to work but because im so upset and panicked its hard. Only on the meds two weeks tho. I can see a difference. Would u say about 4 weeks till symptoms die fully down? I burn when I pee im constantly itchy front to back have an ache down there and sometimes knife stabs when im really really anxious. Im happy to hear u went back to work and ur functioning that gives me hope that it can at least be managed. How did u get it. I was told to stay on the amitriptyline for three months and come off and ill be fine. Weird urs has a diff opinion

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Re: CURED FROM VULVODYNIA - PAIN FREE FOR 2 YEARS

Post  fairlight10 on Sun Nov 26, 2017 4:36 pm

How did l get this? Well, l was very stressed at the time. I started feeling uncomfortable in that area. I thought it might be thrush. I had urinary problems and was under the hospital for frequency. I had a cystoscopy while awake.l had an abrasion on the bladder wall and a tiny stone removed. They told me this was probably the answer to blood in my urine and irritation causing my frequency. 6 months later at the clinic still blood in my urine and leukocytes present. Another cystoscopy and urethral dialasion in the April 2012 under anaesethsia. Woke up in pain and frequency worse than before. So, l thought they had upset the nerves in that area. Kept going back to the gps. One told me l had thrush and threw canestan at me which made me burn down there. One did a swab. You have staf infection in your vagina. Lots of antibiotics then. Another gp who had me on HRT said l had atrophic vaginitis. Prescribed estrogen creams. They made me burn. This same gp decides l need a new mirena coil put in. Trys to remove the old one and can not find it. She said l must have expelled it. Puts new one in. Nurse argues with dr about how l have been treated. I am hysterical because this is so painful. Gave up with my surgery. Found private gynaecologist who told me l had vulvodynia. I paid for a scan to see how many mirena coils l had and there were TWO! Gynaecologist shaking his head in disbelief. Put on nortriptyline. Had new coil removed by gp who put it in. She arranged for me to see the gynaecologist l privately on the NHS. 6months later he removed lost coil and performed histoscopy/vulvoscopy. Then confirmed his diagnosis of vulvodynia / vulvar vestibulitis. Oh and l changed my surgery. Given up with urologists they did not accept they may have injured me and did not accept that l got a staf infection when they operated on me. So, somewhere in there is the answer l just do not know. Sorry this is so long. This is the first time l have written all this down.

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Re: CURED FROM VULVODYNIA - PAIN FREE FOR 2 YEARS

Post  Katiej on Sun Nov 26, 2017 4:43 pm

Wow that sounds like u had alot going on. This vvd is very differnt for everyone. I just had a bad infection and lots of antibiotics and home remedies thrown at me then vulvodynia. Doc said cause it was caused by the antibiotics or infection that the nerves just need to be calmed down with the amitriptyline and then itl go after a few months and ill be brand new. So lets see . Hopefully thats the case. Docs told me not to read all stuff online cause its not accurate all the people who recover dont come back to say it.

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Re: CURED FROM VULVODYNIA - PAIN FREE FOR 2 YEARS

Post  mary jane on Sat Dec 09, 2017 4:51 pm

Katiej wrote:Wow that sounds like u had alot going on. This vvd is very differnt for everyone. I just had a bad infection and lots of antibiotics and home remedies thrown at me then vulvodynia. Doc said cause it was caused by the antibiotics or infection that the nerves just need to be calmed down with the amitriptyline and then itl go after a few months and ill be brand new. So lets see . Hopefully thats the case. Docs told me not to read all stuff online cause its not accurate all the people who recover dont come back to say it.

Don't worry, it does go away ! I read that chronic pain si created by body memory, so the infection was remembered by your body and now manifests as pain, by taking these pills you try and make your body "learn" it should stop sending pain signals Smile

https://www.kcl.ac.uk/ioppn/news/records/2016/May/Cells-carry-memory-of-injury,-which-could-reveal-why-chronic-pain-persists.aspx
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Re: CURED FROM VULVODYNIA - PAIN FREE FOR 2 YEARS

Post  Katiej on Wed Dec 13, 2017 5:17 pm

Good to know Smile im seeing a pt who is really helping. She basically explained that all the antibiotics I was on for infection would imbalance the body causing the nerves to over react and then because I was sore I was clenching in pain for so long tightening the muscles which were compressing the nerves. That knife like shards of glass feeling I had gets better each time I see her and she releases more of the tension. I still burn mildly and itch n tingle. Seems to be up n down now whereas before I was all down. Have a few hours a day almost symptom free. I am 5 weeks on the amitriptyline and about 3 weeks on 25mg which is what they wanted me on. I would have thought by now all the itching and burning would be completely gone but it now seems to come and go instead of all fully there should this continue to get better ? I think I read u said took a few months to be symptom free from the ami? Can I explain if it was like that also Smile thanks so much .

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Re: CURED FROM VULVODYNIA - PAIN FREE FOR 2 YEARS

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