Vulvular swelling for a year and a half. No diagnosis

Posted by hopefulhope @hopefulhope, May 31, 2019

Swollen parotid gland after bug bite on thumb for 2 months, then trich, antibiotics, major vulvular swelling and pain. Couldn't walk. They kept treating for yeast. Kept swelling. All yeast cultures came back negative. Triggers are histimine related, obnoxious oders, all food, heat, cold, vibration. During this swelling episode my left leg swelled for no apparent reason for a month and a half, eyes swelled for 4 months, and stomach swelled massive (I weigh 100 lbs) for 5 months. Couldn't have bowel movement. No doctors know what's going on. Gyn said not a gyn issue. Everything normal. Positive ana. Has anyone heard of this?

Hi @hopefulhope, that must be frustrating to find no solution to your various health issues.

I wanted to tag @ginjax28 as she has also had a swollen parotid gland and may be able to offer you support and share her experience.

Back to you @hopefulhope, it's very interesting what your triggers are. Can you expound upon them further? For example, is it extreme heat or cold?

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Hi, @hopefulhope. I wanted to add my welcome to Mayo Clinic Connect and invite a few other members into this Women's Health Group discussion on vulvar swelling for a year and a half with no diagnosis to see if they may have any thoughts and also provide some support for you. Please meet @gardeningjunkie @lioness @vsinn2000 @harper2018.

How are you doing today, @hopefulhope?

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Anti-biotics as you know kill off the good bacteria in your gut and allow the yeast to thrive. Anti-biotics are a necessary evil.

I've had to take anti-biotics from time to time because of eczema rashes. I've had vulvae swelling which was not obviously related to yeast, as I didn't have the typical vaginal yeast issues. Vaginal swabs negative for yeast. No discharge. It had doctors baffled and yet I had redness in the vulvae tissue, swelling, itching and burning. I did not have your multitude of other symptoms. Although I had vaginal yeast issues when younger I started this vulvae issue around 65 after my hysterectomy. I am now 70. I am not a medical professional.

I did take anti-yeast prescriptions from time to time which helped to a point but symptoms always returned. A last resort was a vulvae biopsy for yeast which my gyno said would be painful, but decided to put off and to try a yeast elimination diet, recommended by a Women's Doctor, who is not mainstream. Understand, I am a mainstream sort of person and thought this doctor was strange, yet I was miserable and searching for alternatives. She said we don't need prescriptions. According to her and Dr. Oz (who I didn't know was even a real doctor) they believed yeast can be harbored inside vulvae tissue and has to be starved to death to kill it out. PX meds, while helpful and can be taken with the diet, won't do the trick cause they don't kill it all. I did a 2 month detox, based on the William Crook, MD book, The Yeast Connection Handbook. After 6 weeks a major improvement and decided to stay with detox for 3 months (some say that's best for a total kill) to make sure the residual yeast harbored in my intestines had finally starved to death. Lacking any form of sugar and carbs for a period of time it dies out. After 3 months and symptoms abated I now follow the Crook anti-yeast plan for life. Never processed sugar, limited natural sugar as in a small piece of fruit every other day and zero gluten for life. Now 7 months later vulvae still appears normal, color no longer bright red, no longer swollen. Yes eating like this is difficult to begin with, took 3 weeks for my mouth to stop watering just seeing a cookie or piece of candy. I still cook normally for my family and seriously it is not a challenge choosing the right food. Your sugar craving will stop once the yeast which is sending messages to your brain to be fed dies out. Just like a junkie goes though detox, you will go though sugar withdrawal. Also understand I have never been overweight or a sugar junkie. Still this diet was a challenge and one has to be hurting enough to attempt a sugar detox. Seem like you are. It won't hurt your body to try it and it's not expensive.
I made up a little jingle I would repeat in my mind when my mouth was watering looking at something sweet,
"When will you learn, It's going to make you BURN"

Liked by Lisa Lucier

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@gardeningjunkie

Anti-biotics as you know kill off the good bacteria in your gut and allow the yeast to thrive. Anti-biotics are a necessary evil.

I've had to take anti-biotics from time to time because of eczema rashes. I've had vulvae swelling which was not obviously related to yeast, as I didn't have the typical vaginal yeast issues. Vaginal swabs negative for yeast. No discharge. It had doctors baffled and yet I had redness in the vulvae tissue, swelling, itching and burning. I did not have your multitude of other symptoms. Although I had vaginal yeast issues when younger I started this vulvae issue around 65 after my hysterectomy. I am now 70. I am not a medical professional.

I did take anti-yeast prescriptions from time to time which helped to a point but symptoms always returned. A last resort was a vulvae biopsy for yeast which my gyno said would be painful, but decided to put off and to try a yeast elimination diet, recommended by a Women's Doctor, who is not mainstream. Understand, I am a mainstream sort of person and thought this doctor was strange, yet I was miserable and searching for alternatives. She said we don't need prescriptions. According to her and Dr. Oz (who I didn't know was even a real doctor) they believed yeast can be harbored inside vulvae tissue and has to be starved to death to kill it out. PX meds, while helpful and can be taken with the diet, won't do the trick cause they don't kill it all. I did a 2 month detox, based on the William Crook, MD book, The Yeast Connection Handbook. After 6 weeks a major improvement and decided to stay with detox for 3 months (some say that's best for a total kill) to make sure the residual yeast harbored in my intestines had finally starved to death. Lacking any form of sugar and carbs for a period of time it dies out. After 3 months and symptoms abated I now follow the Crook anti-yeast plan for life. Never processed sugar, limited natural sugar as in a small piece of fruit every other day and zero gluten for life. Now 7 months later vulvae still appears normal, color no longer bright red, no longer swollen. Yes eating like this is difficult to begin with, took 3 weeks for my mouth to stop watering just seeing a cookie or piece of candy. I still cook normally for my family and seriously it is not a challenge choosing the right food. Your sugar craving will stop once the yeast which is sending messages to your brain to be fed dies out. Just like a junkie goes though detox, you will go though sugar withdrawal. Also understand I have never been overweight or a sugar junkie. Still this diet was a challenge and one has to be hurting enough to attempt a sugar detox. Seem like you are. It won't hurt your body to try it and it's not expensive.
I made up a little jingle I would repeat in my mind when my mouth was watering looking at something sweet,
"When will you learn, It's going to make you BURN"

Jump to this post

You do have multitudes of other symptoms and I focused on the yeast for my vulvae, but should also mention my Allergic Contact Dermatitis, ACD issues. I wouldn't doubt you have multiple causes. ACD is a form of eczema which had been a cause of multiple parts of my body having a host of symptoms and vulvae swelling previously, yet I had gotten that under control because of elimination of contacts. I had the 5 Day Extended Patch Test which showed I was allergic to a number of allergens, in fact about 90% of my clothing, furniture, my bed, my pillow, my grooming products, cleaning products shoes and so on . Some of these allergens were in contact with my privates as in clothing (underwear), linens, detergent, soap and most grooming products, preservatives, even cortisone and some steroid topicals-which were the recommended treatment. I eliminated all these items and found replacements and yes my symptoms abated elsewhere yet only 80% in my vulvae, but now I know I had multiple issues. Not just my ACD contacts, but yeast.

Not sure what soap you are using but the safest soap I am aware of is Grandma's Soap for Face and Body, previously know as Grandma's Lye Soap for Face and Body. It has only 2 ingredients, Lye and Lard. The Lye becomes glycerin during the soap making process, so only glycerin (moisturizing) and lard (moisturizing) contact your skin. This is how soap was made for centuries before a host of chemical additives were put into our products. Why add various chemical preservatives to make a bar of soap last for centuries? Who needs a bar of soap to last a hundred years? For example one of many allergic preservatives added is MI/MCI, look it up look. This allowed preservative is often added to soaps and detergents and has been banned in many European countries for a decade. The manufacturer loves chemicals that extend shelf life. The chemical companies make money selling these chemicals and have powerful lobby groups in Washington, DC. Just like with tobacco, big money gets its way in congress. Grandma's soap has no added preservatives, fragrance, emulsifiers and so on. The price did go up last year when it became a Mayo SkinSafe product, but still it is not expensive. I buy on Amazon.

Liked by lioness

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I had a lot of swelling in face & body. My eyes were almost swelled shut. All this started with stomach ache & heartburn. No doctor could figure it out so I paid to have my blood tested (after doctors ran all their own blood tests, etc) from a functional medical doctor & I had alarmingly high levels of C-reactive protein, my blood RA levels were some of the highest any doctor had seen. I go to National Jewish Hospital for monitoring but I have refused to take any prescriptions they want me on. I found out this immune response came from leaky gut that somehow lets particles of food, toxins, etc. into my bloodstream which has caused the RA symptoms – my body was always super inflamed & my immune system was attacking my joints & tendons – so very painful. Lots of other horrible symptoms went along with this 2 year nightmare. I am being treated by functional med doctor & natural pathic doctors now. I started on a regimen of oil of oregano & grapefruit seed oil + plus protein powder & a powder that helped my digestion. It is working & I have since been put on other herbals that help with inflammation, etc. It's been a long process but I am 100% convinced this is saving my life. If you can afford to have pay for blood work that is not usually ran by doctors (insurance issues) then I strongly suggest that you try this. I can not tell you how many doctors blew me off, told me it was all in my head, etc. Now they have all been very seriously involved in trying to heal me but I am not doing any western medicine as it just masks symptoms. I needed to & did get to the root cause & am on a much better, healthier path to recovery but it's been very hard – there are no easy paths to true healing – must find CORRECT TYPE OF DR, endure, follow strict diet, be patient & heal slowly.

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@ginjax28

I had a lot of swelling in face & body. My eyes were almost swelled shut. All this started with stomach ache & heartburn. No doctor could figure it out so I paid to have my blood tested (after doctors ran all their own blood tests, etc) from a functional medical doctor & I had alarmingly high levels of C-reactive protein, my blood RA levels were some of the highest any doctor had seen. I go to National Jewish Hospital for monitoring but I have refused to take any prescriptions they want me on. I found out this immune response came from leaky gut that somehow lets particles of food, toxins, etc. into my bloodstream which has caused the RA symptoms – my body was always super inflamed & my immune system was attacking my joints & tendons – so very painful. Lots of other horrible symptoms went along with this 2 year nightmare. I am being treated by functional med doctor & natural pathic doctors now. I started on a regimen of oil of oregano & grapefruit seed oil + plus protein powder & a powder that helped my digestion. It is working & I have since been put on other herbals that help with inflammation, etc. It's been a long process but I am 100% convinced this is saving my life. If you can afford to have pay for blood work that is not usually ran by doctors (insurance issues) then I strongly suggest that you try this. I can not tell you how many doctors blew me off, told me it was all in my head, etc. Now they have all been very seriously involved in trying to heal me but I am not doing any western medicine as it just masks symptoms. I needed to & did get to the root cause & am on a much better, healthier path to recovery but it's been very hard – there are no easy paths to true healing – must find CORRECT TYPE OF DR, endure, follow strict diet, be patient & heal slowly.

Jump to this post

By the way if you have yeast the oil of oregano & grapefruit seed oil should kill it off after a couple months. Tea tree oil is also another "kill all" product that helped my skin, sinuses, glands, etc heal.

Liked by lioness

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Hopeful,
Have you paid to have your own blood work done? You can really get to the bottom of issues when you do this with a functional med dr. I went through way to many dr's & all blood work came back normal. Then I paid myself to run blood panels for lots of odd things & I did get results that the specialists dr's could not detect. After 2 years of super bad swelling of face & body, pain, etc.I am healing (not masking with meds) my body. My neuro & RA specialist started running tests after I paid for my blood work & they ALL finally saw that I was really, very ill. I refuse to take any western meds for my issues as they will just mask the illness. I can tell you that oil of oregano, grapefruit seed oil & tea tree oil have greatly helped – killing off yeast, parasites, bacteria, etc. I am recovering slowly but I am really healing. I can not stress how much a good functional med dr can help.

Liked by lioness

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@hopefulhope Thank you Lisa for inviting me to respond. You need to take a good probiotic when you take antibiotics Wash with Grandma,s soap dry completely Did you get the stinger out of whatever bit you.There is a product called Black salve Icthammol ointment black salve easier to pronounce It is a drawing salve I just bought some and it works ask your Dr about it.I had a swollen cyst used it several days at night cyst is gone.Just my experience.I might suggest seeing an Infectious Dr.Also don't wear tight fitting panties

Liked by Lisa Lucier

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@ginjax28

I had a lot of swelling in face & body. My eyes were almost swelled shut. All this started with stomach ache & heartburn. No doctor could figure it out so I paid to have my blood tested (after doctors ran all their own blood tests, etc) from a functional medical doctor & I had alarmingly high levels of C-reactive protein, my blood RA levels were some of the highest any doctor had seen. I go to National Jewish Hospital for monitoring but I have refused to take any prescriptions they want me on. I found out this immune response came from leaky gut that somehow lets particles of food, toxins, etc. into my bloodstream which has caused the RA symptoms – my body was always super inflamed & my immune system was attacking my joints & tendons – so very painful. Lots of other horrible symptoms went along with this 2 year nightmare. I am being treated by functional med doctor & natural pathic doctors now. I started on a regimen of oil of oregano & grapefruit seed oil + plus protein powder & a powder that helped my digestion. It is working & I have since been put on other herbals that help with inflammation, etc. It's been a long process but I am 100% convinced this is saving my life. If you can afford to have pay for blood work that is not usually ran by doctors (insurance issues) then I strongly suggest that you try this. I can not tell you how many doctors blew me off, told me it was all in my head, etc. Now they have all been very seriously involved in trying to heal me but I am not doing any western medicine as it just masks symptoms. I needed to & did get to the root cause & am on a much better, healthier path to recovery but it's been very hard – there are no easy paths to true healing – must find CORRECT TYPE OF DR, endure, follow strict diet, be patient & heal slowly.

Jump to this post

My anti-inflammatory diet to control yeast also recommends taking oil of oregano. It grows easily in my mid-west garden all year round, doesn't die even covered with snow in my zone 6. I often add it to smoothies.

REPLY
@ginjax28

I had a lot of swelling in face & body. My eyes were almost swelled shut. All this started with stomach ache & heartburn. No doctor could figure it out so I paid to have my blood tested (after doctors ran all their own blood tests, etc) from a functional medical doctor & I had alarmingly high levels of C-reactive protein, my blood RA levels were some of the highest any doctor had seen. I go to National Jewish Hospital for monitoring but I have refused to take any prescriptions they want me on. I found out this immune response came from leaky gut that somehow lets particles of food, toxins, etc. into my bloodstream which has caused the RA symptoms – my body was always super inflamed & my immune system was attacking my joints & tendons – so very painful. Lots of other horrible symptoms went along with this 2 year nightmare. I am being treated by functional med doctor & natural pathic doctors now. I started on a regimen of oil of oregano & grapefruit seed oil + plus protein powder & a powder that helped my digestion. It is working & I have since been put on other herbals that help with inflammation, etc. It's been a long process but I am 100% convinced this is saving my life. If you can afford to have pay for blood work that is not usually ran by doctors (insurance issues) then I strongly suggest that you try this. I can not tell you how many doctors blew me off, told me it was all in my head, etc. Now they have all been very seriously involved in trying to heal me but I am not doing any western medicine as it just masks symptoms. I needed to & did get to the root cause & am on a much better, healthier path to recovery but it's been very hard – there are no easy paths to true healing – must find CORRECT TYPE OF DR, endure, follow strict diet, be patient & heal slowly.

Jump to this post

What foods can you eat on a leaky gut diet?

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@lisalucier

Hi, @hopefulhope. I wanted to add my welcome to Mayo Clinic Connect and invite a few other members into this Women's Health Group discussion on vulvar swelling for a year and a half with no diagnosis to see if they may have any thoughts and also provide some support for you. Please meet @gardeningjunkie @lioness @vsinn2000 @harper2018.

How are you doing today, @hopefulhope?

Jump to this post

@lisalucier Do you know how to post here from another article There's information about studies in fibromyalgia @Lyme disease Is like to post but don't know how you do it Thanks in advance

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@gardeningjunkie

My anti-inflammatory diet to control yeast also recommends taking oil of oregano. It grows easily in my mid-west garden all year round, doesn't die even covered with snow in my zone 6. I often add it to smoothies.

Jump to this post

@gardenjunkie Can you use the essential oil for this I do smoothies also

Liked by gardeningjunkie

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It depends on the essential oil. I am not allergic to oregano so imagine I could use the oil, yet with fresh so available I don't see the need to try it. Glad you are getting some relief.

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@gardenjunkie There is a website http://www.digestivecenter.com. A good video on there by the Dr. I'm going to try the oil of oregano I'm doing as well as I can but pain keeps me company hope your doing well

Liked by ginjax28

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We both just keep collecting aliments, yet we are both fighters! I am living proof studying my health issues has improved my life, to improve we must do more than just stick with what the traditional doctors recommend. If traditional medicine worked that would be fine with me, but in my case and others we don't want to settle for half way results. We want to feel like we used to.

Liked by ginjax28

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