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» Diagnosed Recently
Thu Feb 14, 2019 6:35 pm by davesjen

» New and need advice and help
Wed Feb 13, 2019 12:42 pm by feeling desperate

» New here would very much appreciate advice at the end of my rope
Wed Feb 13, 2019 12:33 pm by feeling desperate

» MonaLisa Touch
Sat Feb 09, 2019 3:46 pm by Julquint

» New member desperate need of other vulvadynia sufferers
Sat Feb 09, 2019 10:09 am by Tfc13

» The pain CAN get better - What's worked for me
Sat Feb 09, 2019 8:17 am by Ginger

» Remission and relapse and again and again
Thu Feb 07, 2019 1:10 pm by mary jane

» Long term pain after partial vestibulectomy?
Wed Feb 06, 2019 1:56 pm by mary jane

» Recovery story please read !!
Fri Feb 01, 2019 1:33 pm by mary jane

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

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 …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 1

New member desperate need of other vulvadynia sufferers

Fri Feb 08, 2019 6:55 pm by Tfc13

Hi there hope some1 reading this is going through the same shit as me!, I'm new to this so don't really know where to start , I'm Teresa , I've just been diagnosed with vestibular vulvadynia , after countless appointments with GPS being misdiagnosed, tested for god knows everything , eventually under my gynochologist ,who done all her necessary tests, I now have been given a diagnosis I'm in …

Comments: 5

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 …

Comments: 7

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

Comments: 0

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 …

Comments: 3


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.

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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

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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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