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Yesterday at 5:05 am by SinclairSassy

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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.

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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 …

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 …

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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 …

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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


Newly diagnosed

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Newly diagnosed

Post  Brevispink on Tue Oct 10, 2017 8:37 pm

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, but the burning and stinging is worse than ever. The vulval dermatologist I have seen has prescribed Nortryptiline and has told me to gradually increase the dose. I am on 40mg each night. She told me to apply Hydromol every day as a barrier cream.

As yet I have had no improvement and now find it very difficult to sit, walk or do anything as the slightest touch of my pants or pant liners sets off the terrible stinging.

I no longer have thrush, but have had thrush repeatedly over the last year or so. I didn't have this problem before the UTI reared its head.

I am due to have some pelvic floor physio next week.

Does anyone have any advice for me? Is there anything out there that actually works? I am in tears every day with this and am gradually withdrawing into the house where I can sit on an ice pack and get some relief.

Thank you so much.

Brevispink

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Re: Newly diagnosed

Post  fairlight10 on Wed Oct 11, 2017 6:30 pm

Hello Brevispink. I am sorry you have been diagnosed with this nasty, spiteful condition. I and all of us on this forum have had very similar symptoms. I have had this condition for over 5 years.I was prescribed 20mgs of Nortriptyline. It has definately helped me but it is not a quick fix. It takes months to gradually desensitise the nerves in the vulvar. Read some of the posts on this forum and believe it will get better.I have read of physical therapy being very helpful. I have had many acupuncture sessions which helped. If nortriptyline in low doses dose not help, there are many other medications to try. I bought a ring foam cushion to sit on in the early days. I now only use it to sit on when I drive. You need your family and friends to support you emotionally. It helped me to be able to talk to someone about how I was feeling. I had not found this forum then. Also,stress and being tense can make this condition worse.I hope this has been helpful.

fairlight10

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Re: Newly diagnosed

Post  Brevispink on Wed Oct 11, 2017 8:57 pm

Thanks so much - it's great to know that there are people out there who understand.

Brevispink

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Thinking of all who wrote these posts

Post  Guest on Thu Oct 12, 2017 6:54 pm

I'm sorry that you're suffering through this. Truly.
I've suffered from a diagnosis of unprovoked vulvodynia and vestibulitis for several years.
I've maintained it for several years but now am in a flare up.
Years ago I had a terrible flare up and spent all kinds of time running to doctors (some who were unkind), getting tests done, suffering from the tests, nothing working and everything a vicious circle. I could hardly leave the house for a year. It was cruel and imaginable. People just don't understand if they don't have it.

The burning and swelling are terrible now. Clothing is difficult, too. I was working regularly and now can barely do so. I can't sit even with a special pillow. This all came about a few weeks ago. I've had all kinds of tests done in the past weeks without any results in and so I've taken yeast pills and am now on an antibiotic, which I hate. It's strong, and I hope it doesn't create yeast. This seems to have a mind of its own. I, too, am in tears and distress each day and afraid. I've many personal responsibilities and feel stressed that I can't tend to them. This all creates stress for me but stress makes this worse. I try to do many stress relievers. I always hoped another flare up wouldn't come.
I can't believe how many women are suffering with this. I feel very sad and scared, and have to find the strength to carry this.
Thank you for sharing.

Guest
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Re: Newly diagnosed

Post  sarisbaris on Wed Oct 18, 2017 3:10 am

Brevispink,
I battled V for 15 years. I now consider myself cured. It wasn’t by accident. After 20+ western docs, I realized they couldn’t help. I saw countless alternative. Some helped by none cured. I followed the information from Anthony William. This is no joke. His advice cured it.

Ok… sounds like you’re battle an unknown/undetectable form of streptococcus. UTI infections are an unknown/undetectable strain of strep. According to Anthony William, 90% of vaginal burning cases are strep. 10% can be an unknown strain of shingles. I had strep in the inside and shingles on the outside. How do I know I had these, if there are no tests? Well I tried his protocol and supplements for the viruses I thought I had and they worked. First I followed his advice on strep. That cured the burning inside. I also had a rash sometimes on the outside, I used lobelia which he recommends and that cured it on contact. No joke. It came back a few times but lobelia would alway fix it. Now I don’t have any flare ups of either. If you have an outside rash, that might be shingles. He mentions this in his first book Medical Medium in the shingles chapter.

First, you need to educate yourself. Go to my blog, scroll down to the necessary reading section and listen to the strep show and read the page. Follow the protocol. Next, listen to the UTI show. He takes about an ice therapy in this show that I think would calm your nerves. Next, listen to the EBV show that doesn’t sound related at all but if strep is present then EBV is the foundation virus opening the door and allowing all this to happen. Finally, listen to the metal detox show. Metal feeds strep and EBV. So you’ll need to do a metal detox.

Shows/pages that will help:
http://www.medicalmedium.com/blog/streptococcus-revealed
https://soundcloud.com/asha-bhuyan/medical-medium-uti?
http://www.medicalmedium.com/blog/epstein-barr-virus-revealed
http://www.medicalmedium.com/blog/heavy-metal-detox
http://www.medicalmedium.com/blog/shingles-virus

My blog: http://myvulvodyniacure.blogspot.com/2016/12/if-you-are-in-pain.html

While you are educating yourself do these things now:
AVOID: eggs, dairy, wheat, corn, aluminium foil, water that is not filtered, canola oil (which is in almost everything
SUPPLEMENTS: licorice root (try this first if you don’t see a difference in a day) then try lemon balm and nettleaf (3 cups a day), esther C, cat’s claw (if you are not plannig to get pregnant), golden seal (2 times a day, 2 weeks on 2 weeks off),
A green juice would also help. Celery juice is great. Celery/cucumber/parsley or cilantro. See metal detox.
FOODS: Note all the foods he recommends. They make a difference. Lemon water/honey upon waking, green juice, then smoothie, salad for lunch… veggies heal.

Only buy the brands he recommends. Trust me. I wasted a bunch of money. No one makes a profit from these recommendations except of course for the company itself Wink http://www.medicalmedium.com/preferred/supplements

Also, because of the antibiotic use you will need to heal your gut.
http://www.medicalmedium.com/blog/understanding-gut-health

Please keep me posted and let me know if you have any questions. Don't lose hope!

sarisbaris

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Re: Newly diagnosed

Post  Brevispink on Wed Oct 18, 2017 9:06 am

Thank you so much. I listened to his programme. I've had a chronic UTI for 16 months and 9 months of antibiotics!! I'm sure my bladder is very inflamed and my nerves are shot to pieces. I must admit, I found all the information quite bewildering! Where should I start?

B12, zinc and liquorice? Nettle tea?

The celery/cucumber/parsley drink?

I have already cut most dairy from my diet, but I have been eating eggs. Since I cut out gluten, breakfast is very tricky.

I'm using ice packs every day already.

I'll do anything that might help!

Thank you again for your really helpful reply

Brevispink

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Re: Newly diagnosed

Post  sarisbaris on Wed Oct 18, 2017 7:42 pm

I totally understand. It can be a bit confusing once you start.

Here's a rough daily plan:
Upon waking water with lemon, honey and ginger
Celery juice - he heals everything including your stomach which you need after all the antiobitics
Morning Smoothie - 1 cup wild blueberries, 1 banana, handful spinach, kiwi, dates then add other fruits that you feel like. Right now I have just a smoothie for breakfast but in the beginning it would leave me hungry. So I ate other things as well. Look at my blog. There is a post titled "what do I eat then and it has a daily food plan in there".
Morning tea - thyme, nettleleaf, just combine them
Morning supplements - zinc in water, elderberry syrup in water, Jarrow formula for women-femdophilus, esther C, B12
Snack - kiwi/pomengranate or other fruits
Lunch - salad with arugula, asparagus, kiwi, lettuce and whatever else you like (recommended dressing: olive oil, lemon juice, honey, salt or coconut aminos). I always eat salad with nuts or sweet potato or potatoes so I'm not hungry. Yes.. all potatoes are great for you! Just keep out the dairy Wink
Snack - kiwi/pomengranate or other fruits
Afternoon tea & supplements
Dinner
Bedtime tea & supplements

*The trick is to not go hungry. You need to fuel yourself to heal. All the things above are medicine. Just add as much of them in as possible. The more veggies/salad/fruit you eat the faster you will heal. Just be careful. Others found lemon juiced triggered more pain. This doesn't mean you body doesn't need it. It means you're detoxing. But we're trying to save your sanity as well as your body. So go easy on yourself.

If your urethra still hurts/burns... rinse every time with cold filtered water. Rinse after every bath. Faucet water has lots of chemicals in it. To this day if I drink more than a few glasses of tap water my urethra gets upset. Sigh. Also, if your urethra burns put a little of this on it while you are in the bath. No joke. It's amaze balls at least for me but super strong. Don't get another brand, I've tried lots. The only one that works is this one:
https://www.amazon.com/Melaleuca-Tea-Tree-Oil-T36-C5/dp/B0027V3W96/ref=sr_1_10?ie=UTF8&qid=1508355494&sr=8-10&keywords=melaleuca+essential+oil

Next steps:
Once you feel comfortable with this protocol your afternoon smoothie should be the metal detox smoothie.
After you added this try adding another glass of celery juice right before you go to sleep

Summary of the UTI show:
Foods to absolutely avoid if you have UT issues: Butter, Cheese, Milk including half and
half in coffee, Yogurt (will feed more pathogens than provide probiotics), Corn (big deal,
it used to be healthy a long time ago, but it is altered and bacteria is raised in lab on corn),
Canola oil (nightmare for cystitis), Eggs-even the best ones on the planet (not good for
yeast, itching, burning, discharge, UTIs), Wheat has to go when dealing with this stuff.
Cystitis foods to eat views are many. Some foods stop the fire of cystitis, but don’t help
you heal. You may feel better on eggs and dairy, but the inflammation is not going away,
and not being irritating; however these keep the inflammation there.

Top foods to heal UT: Wild blueberries (cranberry on steroids-except cystitis?),
raspberries, strawberries, cranberries, cucumber juice or lemon water (may burn a little
going out), garlic (strep cannot get resistant to this), red/purple grapes, arugula, lettuce
and spinach. Bring in more of these things. Asparagus is a secret weapon-cleanses it all,
lower yeast. Kiwis, thyme tea is a big deal/secret weapon to propel you away from
chronic UTIs. Ginger water-he loves it. Pomegranate helpsmend the walls of the bladder, cleans the inflammation, burns like hell going out; gets
blamed on being an irritant, but it actually helps you heal. We don’t have to eat pom, we
can eat other foods that don’t make it feel bad.

Supplements: grapeseed extract, monolaurin, elderberry water/tea 3 x a day is secret
weapon, nettle leaf is another weapon-long term every day you will build up your
immune system and reverse whole problem with UTIs. D-mannose. Jarrow formula for
women-femdophilus protects and balances UT and repro system. Cranberry extract.
Wild blueberry powder. Ester C-calcium ascorbate won’t irritate UT but battle the
bacteria. Ascorbic acid would make it on fire. Zinc-must have this, it’s critical to build
immune and protect from strep/e coli/yeast. Zinc is not just in blood, it gets low in
organs and systems. Liquid sulfate is the best one. B12 with adenosyl/methyl-helps
pudendum nerve that is irritated by UTIs

sarisbaris

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Re: Newly diagnosed

Post  Brevispink on Wed Oct 18, 2017 8:54 pm

Thank you so, so much. I can't imagine how long it must have taken you to type all that! I've been unable to eat fruit for over a year because even natural sugar has sent the infection sky high. I can eat vegetables, however. I usually have a baked potato at lunch time, but I admit, I've been eating it with cheese. If I tried tuna, would the mayo be a no-no? I could just have a huge salad and avocado.

Breakfast is difficult, but I usually have gluten free porridge with almond milk.

I'll get hold of the supplements and the nettle tea.

I'm so grateful.

Caroline S

Brevispink

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Re: Newly diagnosed

Post  sarisbaris on Sat Oct 21, 2017 8:55 pm

Caroline,
You're not alone. My struggle was so difficult. I'm grateful to help since the doctors are unable to right now.

As for fruit... according to AW if you're having reactions with fruit it means that the detox is too strong. Basically the fruit is too medicinal. So yes, stay away from fruit but try to bring it in little by little. It will detox you faster. Can you do sweet potato?

Sarah

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Re: Newly diagnosed

Post  sarisbaris on Sat Oct 21, 2017 9:50 pm

Caroline,
I'm guessing other doctors have convinced you that fruit has increased the infection. In my experience none of their tests/remedies worked for me. So I stopped listening to any of their logic because none of their advice worked. So if your pain increases with fruit it isn't about the increased infection but the detox. But please, remember we are also trying to save your sanity! If something increases the pain don't eat it. But I just want you to understand that healing power of fruit. So just start with a little.

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Re: Newly diagnosed

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