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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 …

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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 …

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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 …

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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 …

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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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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 …

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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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CURED FROM VULVODYNIA

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CURED FROM VULVODYNIA

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

I UPDATED THIS POST ON APRIL 7, 2018.

I had vulvodynia (unprovoked and provoked) for 15 years. I have probably seen 20 conventional doctors plus specialists in San Francisco and countless atlernative doctors.  I got pregnant and it was horrible. I found a practitioner of Acupoint Nutritional (or Integrative) Testing who helped the most but it still came back a few years later. I also struggled with chronic UTIs, yeast infections, lichen sclerosis, weird rashes, ugh. Then I found Anthony William. His advice and protocols cured everything. Everything.

Basically, according to Anthony William 90% of vulvodynia sufferers probably have an undetectable form of a strep which causes the burning. The strep virus is usually accompanied by an under lining Epstein Barr. A small percentage of vaginal burning can be caused from "Vaginal Area Shingles" which causes a rash near the vagina which is more painful than most rashes found in that area. The "Vaginal Shingles" can also inflame the inside of the vagina and is also incredibly painful but there can also be no rash present. All these strands are currently undetectable by western medicine and most alternative doctors. AW has an entire chapter on shingles in his first book titled Medical Medium and a radio show on strep and EBV. All the links are in my blog. I still don't know which virus I had. I think I had both because the strep protocol worked for one type of pain and the shingles worked for another type of pain. Whatever. I'm cured.

Here's my blog. If you wanna understand these viruses scroll down to "Necessary Reading"
http://myvulvodyniacure.blogspot.com/2016/12/if-you-are-in-pain.html

Lately, I've been finding that the women who visit my blog are a bit overwhelmed by all the info and don't know where to begin. So I've been offering to make them a map or guideline to help them start. Each person is different and each plan is slightly different. My initial goal is just to reduce the pain so they can see straight. Then while they are healing, I recommend that they learn what's going on in their bodies. That initial conversation is making a difference. The women I have been "coaching" have been healing and their burning is decreasing dramatically so that's exciting. For me, that's how it began. I started to get the pain down, then I started to get less flare ups until they vanished all together.

Look... I've been there. When you are struggling with chronic pain (especially lady part pain) life is a bit blurry. It's hard to figure things out. You're lonely and isolated cause who wants to talk about their vagina to their family or friends. I get it. So if you need a hand to hold during this process, please reach out. I am not a practitioner, so I don't charge but I do ask you to keep me updated about your progress. I learn from every person I help which in turn, helps me help others. My blog has all the info.


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


Last edited by sarisbaris on Sat Apr 07, 2018 3:44 pm; edited 3 times in total

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Addition to my post above - LOVE YOUR GREEN DRINK

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



Last edited by sarisbaris on Sat Apr 07, 2018 3:45 pm; edited 1 time in total

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Re: CURED FROM VULVODYNIA

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

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

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

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
sarisbars40@gmail.com


Last edited by sarisbaris on Sat Apr 07, 2018 3:47 pm; edited 1 time in total

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Re: CURED FROM VULVODYNIA

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

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

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

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

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

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

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

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

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

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

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