No Classes or Events for PFPT, Vulvodynia, Chronic Pelvic Pain

Posted by foxglove21 @foxglove21, Jun 19 3:09pm

I see that Mayo has all types of events for different diseases, and mindfulness for pregnancy and delivery, but I’ve never seen them offer ANYTHING for Vulvodynia, chronic pelvic pain, or mindfulness for us. Why don’t they have events or classes for us?

@foxglove21 hello and thank you for your feedback and recommendation. I'm tagging @colleenyoung as well for awareness as she looks into programming and content opportunities across the different groups.

Can you share with me what you would find most helpful hearing more about and/or what you might have in mind for what would be beneficial to our member community by way of an event on this topic? Thank you so much!

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@foxglove21 I did want to share the following information with you in case it would be helpful.

– Vulvar Pain – Mayo Clinic Women’s Health Clinic:

How long have you been living with Vulvodynia?

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I suffered from this for over a decade and a half.

Why is it the medical professionals are avoiding dietary changes?

Only one doctor is all those years recommended dietary changes. I ignored this doctor for 2 years thinking it was silly or that she was a crackpot and yet kept the idea in the back of my mind. I wanted a pill or a prescription. Most prescribed the topicals like in this video, which helped me not at all and in fact often exacerbated the symptom's. One gynocolgist said he found nothing wrong with me it was in my head, another said it was heat rash and prescribed a compounded steroid! I saw at least 6 gynocolgist's over the years getting nowhere. Out of desperation I began an anti-inflammation diet. Maybe that crackpot doctor was right. I read The Yeast Connect Handbook, by William Crooke Md. This explained how yeast which is living in our body raises our inflammation leading to many diseases. Mind you, I had been swabbed for yeast, had no discharge and no external evidence of yeast was found. Looking back I now know how swollen and red my vulva was, today it is not enlarged and is a darker in some areas and more flesh-like in color lacking the redness. This diet plan gave me some relief beginning in 6 weeks and by 2 months I was pretty sure it was working as the yeast colonies living in the colon die out. The detox period for this diet is 2 months, but I kept it up for 3 months. It is brutal, you will want to eat forbidden foods like Processed Sugar, but I would tell myself, "When will you learn, it's going to make you burn." and pass it by. In three months I was almost itch and burn free, but still had some sensitivity. Yet gone was the feeling like I had acid poured on my vulva and into my vagina. I have followed the maintenance plan of this diet fairly closely for 3 years now and never think about burning itching or pain and have normal, pleasurable intercourse. I do eat several serving of fruit, natural sugar a day and allow myself one meal including a gluten carb and am still fine. Yet zero processed sugar for life. Processed sugar is the fuel that immediately is passed to the yeast in your intestines. If you take that away from the yeast they scream at your brain, "Feed me something sweet, I want sugar", your mouth will salivate simply thinking about sugar. You must be as miserable as I was to attempt this, for me pain is a serious motivator.

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@gardeningjunkie

I suffered from this for over a decade and a half.

Why is it the medical professionals are avoiding dietary changes?

Only one doctor is all those years recommended dietary changes. I ignored this doctor for 2 years thinking it was silly or that she was a crackpot and yet kept the idea in the back of my mind. I wanted a pill or a prescription. Most prescribed the topicals like in this video, which helped me not at all and in fact often exacerbated the symptom's. One gynocolgist said he found nothing wrong with me it was in my head, another said it was heat rash and prescribed a compounded steroid! I saw at least 6 gynocolgist's over the years getting nowhere. Out of desperation I began an anti-inflammation diet. Maybe that crackpot doctor was right. I read The Yeast Connect Handbook, by William Crooke Md. This explained how yeast which is living in our body raises our inflammation leading to many diseases. Mind you, I had been swabbed for yeast, had no discharge and no external evidence of yeast was found. Looking back I now know how swollen and red my vulva was, today it is not enlarged and is a darker in some areas and more flesh-like in color lacking the redness. This diet plan gave me some relief beginning in 6 weeks and by 2 months I was pretty sure it was working as the yeast colonies living in the colon die out. The detox period for this diet is 2 months, but I kept it up for 3 months. It is brutal, you will want to eat forbidden foods like Processed Sugar, but I would tell myself, "When will you learn, it's going to make you burn." and pass it by. In three months I was almost itch and burn free, but still had some sensitivity. Yet gone was the feeling like I had acid poured on my vulva and into my vagina. I have followed the maintenance plan of this diet fairly closely for 3 years now and never think about burning itching or pain and have normal, pleasurable intercourse. I do eat several serving of fruit, natural sugar a day and allow myself one meal including a gluten carb and am still fine. Yet zero processed sugar for life. Processed sugar is the fuel that immediately is passed to the yeast in your intestines. If you take that away from the yeast they scream at your brain, "Feed me something sweet, I want sugar", your mouth will salivate simply thinking about sugar. You must be as miserable as I was to attempt this, for me pain is a serious motivator.

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I have a PhD in biomedical sciences My medical specialty is Infection Control & Prevention. I am always amazed how some medical professionals achieve it to write a book covering simple common knowledge, packaged in big words, and adding some fairy tails to it! I think he simply promotes what we generally call a Mediterranean diet. But than comes a bit of a fairy tale, sugar is sugar is sugar, no matter if you eat cane sugar sugar from sugar beats, or sugar from honey, it is still sugar! and it is a good idea to eat as little of it, as possible.
But how the yest colonies from your colon get to your vulva, is a mystery to me. As long as you wipe from front to back. Yeast has no feet or anything like this! You also cannot detox your body, because your kidneys and liver do the detoxing job, If they don't work, you are in real big trouble.

I do not know why the other physicians you visited, were not able to diagnose you properly, but you surely did not harbor some mysterious toxins inside your body.

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Dr. Crooke is a forerunner in believing our diet causes many disease. He was ridiculed by the medical profession in the 80's. Today his theory is gaining more acceptance. I do recommend the Yeast Connection Handbook, it is the only treatment that ever worked for me and still is working today. I sit here free of burning or pain.
Even though Dr. Crooke is an MD, his book is not packaged in fancy words, quite the opposite. It's inexpensive too. He is not selling any fancy meds. You don't need to see a doctor at all to follow this. It is simply written with hand drawn diagrams. I recommend you read the book because I may not be wording it correctly, but from what I understand his concept is that yeast, which lives in large colonies in our intestines is raising our inflammation and is the cause of many diseases. This is a quick read, someone with your background could read it in under 2 hours. Please take the time and keep an open mind.
I also believe, even though I didn't get the biopsy into my vulva tissue because I tried this diet first, yeast was residing throughout the inside of my body. HIs theory is that as we age our intestinal lining thins, the leaky gut theory, the living yeast passes waste through our thinned linings and into our bloodstream and this raises our histamine army. Yes sugar is sugar, it's just that it's more concentrated in processed sugar. Sugar is the food for the yeast. Yeast doesn't simply live only in the colon, but it lives throughout our bodies, women who get vaginal yeast infections often have a milky discharge from the yeast activity. If you starve the yeast it will die.
We're talking about a sugar detox to kill off the yeast. During the 2 month detox to kill off the yeast colonies zero sugar is allowed. No processed or natural sugars or even carbs which turn into sugar. Today some authors say it takes 3 months to do this. I was feeling better after 2 months and motived to keep it up another month just to make sure my yeast colonies died out. True we can't kill it all and it will be reintroduced and he goes into the foods that do this. However the massive yeast colonies are killed off. This book was written in the 80's before the Keto diet became the rage. His ideas were scoffed at. As I mentioned, in all the years I suffered only 1 doctor at a women's medical clinic ever suggested dietary changes. I am 5'6 and have never weighed more than 130 lbs, except during pregnancy I got up to 140. I couldn't help but loose weight during this detox and got down to 121, too low for age 71, but on the maintenance program am back to 126. I didn't overdo sugar, but did eat a lot of fruit.
His maintenance program after the initial detox is less stringent and not as challenging as a Keto diet. A serving or two of natural sugar and carbs is allowed per day, mainly proteins in meat, poultry and fish and lots of vegetables, all foods I love.
I went to at least a 6 gynecologists' and medical professional like you in the 15 years plus I suffered from my burning vulva and vagina, no pill or topical helped me. I had been given Diflucan pills in my younger days and this would help with the classic vaginal yeast infections only to return. After mesopause I never had the typical vaginal yeast infections- I knew the discharge and other symptoms of the classic yeast infection , my vulvodynia was different.
I was diagnosed with vulvodynia by some of the gyno's, some thought is was heat rash, some thought my red swollen tissues looked normal. They couldn't feel that they were on fire. Except for the biopsy they did all kinds of swabs and visual internal exams. My area has regional first class medical facilities with many choices and I had top of the line medical insurance to pay for it all. Try to keep an open mind about alternative medicines for people like me for which the medical community failed in helping us. What choice do we have? I'd like to know what you would suggest to a patient for which every know treatment failed. I am not a medical professional. I am simply a women healed of vulvodynia hoping to inspire others into trying a simple treatment, no cost other then a book which I bought used, no prescription to buy, no surgery and so on. What do these women have to loose in trying it?

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