posted
this is yet another thing i was diagnosed with. can lyme cause this? it is a like a very raw feeling around the vulva and inside the vagina. if its not lyme what could cause it?
Posts: 723 | From boston,ma | Registered: Jan 2011
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posted
Ok..don't know if this will answer your question or not...
When I first got sick this area, my feet and ears felt like someone was burning me with hot lava.
I had never experienced anything like that raw burning and throbbing feeling inside before. I went to countless docs and gyns no one could figure out what would be causing this horrible pain there.
Finally, I was told I had vulvadynia *after being diagnosed with lyme). My gyn said since lyme affects the nerves - it could be hitting there, as well.
Needless to say, after a year of lyme treatment, it has gotten alot better. Every now and then, a jolt a stab or a quick hot spot, but nothing like in the beginning.
Still don't know if lyme is cause...but, through my experience...I'd say YEAH !
Posts: 72 | From Virginia | Registered: Nov 2009
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posted
hmm, i was told that i couldnt have this because diet doesnt affect my symptoms and i dont have to pee frequently. i thought this IC makes you burn when you pee ALL the time? anyways the pain is really only sometimes when i have sex or if i have rough sex. which doesnt have to be too rough. its probably actually gentle sex if i were to look into other peoples bedrooms.
Posts: 723 | From boston,ma | Registered: Jan 2011
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posted
Have you looked into oxalates as a cause? My daughter has an oxalate issue and now we know she has lyme. I don't know if the two are related, but it wouldn't surprise me.
posted
i tried taking citrical for that and it didnt really help, so im pretty sure its not that
Posts: 723 | From boston,ma | Registered: Jan 2011
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posted
There's a Lyme doc in the SF Bay area who specializes in helping Lyme patients with pelvic pain. If you're interested in more info, you're welcome to pm me.
Btw, I fixed all my pelvic pain by stretching in the pool for nine months - doing any stretch I could find. And little by little, the pain subsided.
I did that two years before I found out i had Lyme disease - all I knew is that I had flunked pt and I wanted to do something, so I made it up as I went along, simply by my own feeling, and it worked. My own program, and it was free...
Posts: 13117 | From San Francisco | Registered: May 2006
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posted
Citracal (calcium citrate) is helpful when you're on a low oxalate diet. It binds up some of the oxalate from your diet. But, if you're eating large amounts of oxalate, then the calcium can't do the trick becuase it just can't bind enough. Some of the super high oxalate foods are spinach, chard, some herbs, and many others. You may want to investigate further. The diet has really helped some women.
Posts: 59 | From Seattle WA | Registered: Feb 2011
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posted
katrina... For me, there is plenty of frequency .. and pain ALL the time ... NOT when peeing believe it or not!
Mine is way better since treatment for Lyme and babs.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
There are a few posts on this...you might want to do a search. Based reading personal accounts (and my own experience), I believe it can come out with lyme, but not sure what the specific cause is. Seems that many with lyme have it.
I have read that vuvlodynia can be from HPV (which most of the population has)...I am trying an herb that is supposed to get rid of HPV...it is Essential Detox (Badmaev 269). I am still treating, but I feel it has helped some. You can google it. My practitioner uses it to treat HPV and she says it can completely eradicate it. There is no mainstream med that can do this.
ticbkattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
This book might help. I haven't read it, yet.
Vulvodynia was one of my first symptoms. I had a Fibromyalgia diagnosis at first. It's common with Fibro...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
I was diagnosed with IC before Lyme. I did not have the peeing all the time and anything I ate or drank (including coffee, sodas..) didn't change the pain. My pain is in the pelvic area and it feels like horrid labor -all the time.
My uro-gyno told me that there was a link between IC and Lyme. I think the reason I got diagnosed as soon as I did was because of the connection made by my Dr.
Best to you, ain't no fun.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
I've had vulvodynia since 2005 and I don't have IC.
I think it's from Bart - but can't be100% cedrtain. My Lyme Dr. attended the break out session that Dr M (the CA GYN that treats lyme and vulvodynia) did at one of the Lyme conferences and she thought it was Bart related, too.
What helped me overnight was a more alkaline forming diet. If you like coffee I highly recommend that you cold brew it (it removes the acid and tastes awesome)
I've had physical therapy, and many other therapies but I think what's helped me most recently is that I'm beating down the germs with rifing for Babs and/or Bart.
this is definately related to lyme & Co.
I can now wear very soft slacks (no jeans since 2005) for a couple hours a couple times per week. Mostly I'm in a nightgown (no panties).
Here is a great forum that saved my sanity when I thought I was the only woman in the world that had this:
Unfortunately I'm an expert on this - feel free to pm me with any questions.
Posts: 1761 | From USA | Registered: May 2006
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
Other tips:
No soap down "there" Wear large underpants white cotton only (or none if you can't tolerate them) Use non toxic laundry detergents (not free & Clear but something like Ecos) Use non toxic soaps, shampoos, lotions, etc. (Aubrey Organics and Kiss My Face Olive Oil are good) No fabric softener sheets!! Never use Always products - they can actually cause this problem. No bleach on sheets, towels, etc or double triple rinse
Posts: 1761 | From USA | Registered: May 2006
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
OH one more thing!
If you have hemrhoids this will really aggrivate vulvodynia.
Uses a product called Stone Root (can get it at vitacost) and it will totally heal your hemrhoids (I went from bleeding to GONE in about four days)and will make a huge difference.
Try to stay "regular"
Posts: 1761 | From USA | Registered: May 2006
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posted
I'll second the suggestion to check out the low oxalate diet. My son and I have been on a low oxalate diet for 2 years, and I attribute my mild Lyme symptoms to following this diet. I'm not sure what the connection is between Lyme and oxalates, but I'm sure there is one. Before I lowered my dietary oxalates, I was going downhill fast. After the diet I improved enough to function normally, even though I didn't discover that I had Lyme until about 2 months ago.
There is a very active Yahoo group called "Trying Low Oxalates," run by a brilliant researcher in the Autism community named Susan Owens. So many people on forum are getting relief from all kinds of medical problems, including Vulvodynia, IC, Fibro, CFS, MS, Autism, and even Lyme. (And you may notice that many of the diagnoses listed are ones that often are mistaken for Lyme--there must be a connection).
You'll find the most updated and accurate list of low oxalate foods in the Files section of the Yahoo group.
I am happy to help anyone get started on the diet or answer any questions--just PM me.
Posts: 39 | From Traverse City, MI | Registered: Oct 2010
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
Update.
Now I'm thinking that Babs may be responsible for my VV. Not exactly sure but I have seen an improvement in pain since I've been rifing for Babs.
An alkaline diet helped me the most - I can eat the highest of highest oxalate foods with no issues.
So it's good to try different things and see what works for you.
Posts: 1761 | From USA | Registered: May 2006
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posted
Mojo, Just a thought . . . Susan Owens, the oxalate scientist I mentioned, has discussed how you wouldn't notice a reaction to high oxalate foods. It's only after going on a low oxalate diet that you'd have a reaction to a food too high in oxalate.
It has to do with the blood level of oxalates and how your body "equilibrates." When we're eating a diet high in oxalate, the blood level of oxalates will remain high (constant). Your body will simply absorb the excess oxalate into various organs and tissues, resulting in problems such as VV.
However, when you decrease your dietary oxalate to a low enough level, the level of oxalate outside the cells (fluids/blood) will be lower than inside the cells. This causes the body to "equilibrate" or "dump" oxalates from cells/tissues where it had been stored. Only after you have begun dumping stored oxalates will you "react" in any obvious way to dietary oxalates.
The only sure way to know if oxalates are a problem is to go on a low oxalate diet for a few weeks. What typically happens is that at first you'll feel great--it's called the "honeymoon" period when you've reduced the oxalates circulating in your body. Then your body will start to dump. This could take only a few days to a few weeks (it takes me only 2 days to start dumping). Then you start feeling horrible and get a flare of all kinds of symptoms. The dumps will come in cycles, since different parts of your body will release stored oxalates at different times.
I do realize that everyone is different and that some things work for some people but not for others. But I just thought I'd explain how oxalates can still be a factor even if you don't react to them right now.
Cheers.
Posts: 39 | From Traverse City, MI | Registered: Oct 2010
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mojo
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posted
I was on a low oxalate diet for 6 to 8 months with no relief and I was very strict. When i went off the diet to a high alkaline diet I noticed over night relief and once I got my body more alkaline (over time) the relief continued.
I know of many women that benefited from the low oxolate diet, though.
At one time if I ate tomatoes, egg plant or spicy food I would burn the next day. I found out that the foods that made me burn or cause a flare were night shade vegetables that are very inflammatory.
My hubby and I used to juice vegetables and our juice included spinach. I drank it everyday and it helped my pain because it was very alkaline forming - spinach is very high in oxalates.
Now, having said all of this - I'm thinking of putting my daughter on a low oxalate diet even though she doesn't have V pain. She shows a lot of oxallates in her urine and has fatigue issues, etc. I'm wondering if it will help her.
She's adopted so thankfully I didn't pass anything along to her.
Posts: 1761 | From USA | Registered: May 2006
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posted
I'm glad you've found something that works for you, Mojo. We're all so different! And I hope your daughter finds relief, too.
Posts: 39 | From Traverse City, MI | Registered: Oct 2010
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sparkle7
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Member # 10397
posted
I'm starting to think that there may be a connection between threadworms & Vulvodynia.
"Occasionally, "abnormal migration" of threadworm may occur in girls - this is where female worms leave the anus & enter the vagina. This can lead to vulvovaginitis - inflammation of the vaginal area - with symptoms being extreme irritation & vaginal discharge.
Threadworm-induced vulvovaginitis is not considered a major health threat, as worms will survive for only a limited time in this region. ... "
I suspect the - is not considered a major health threat, as worms will survive for only a limited time in this region. ... - is not necessarily true. This is from a drug company website. Most doctors look down upon suffering due to "female problems". Just my opinion. Historically, it's been the case.
They have ads on TV for Viagra. Ever hear any mention of Vulvodynia? I can tell you - it really causes alot of suffering - physically, emotionally, socially, spiritually, etc.
I hope this helps you gals out there. Try doing an anti-parasite protocol & see if it helps. Each one of us is different, though. There may be various causes.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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