Discussions By Condition: Medical Errors

Misdiagnosis: Vulvodynia

Posted In: Medical Errors 2 Replies
  • Posted By: Anonymous
  • December 13, 2008
  • 10:44 PM

I wanted to share my story so those of you who have had a doctor mention vulvodynia as a catchall for pain in your vulvar region so you would have one last hope. What I had was not 1, but 2 food allergies that were affecting my vagina opening and vulva area.

After having burning, red inner and outer labia, and constant pain for SIX MONTHS, it wasn't until I started developing skin rashes on my stomach that I realized I was allergic to something, but what it was was unclear to me.

My first gyno thought I had a bacterial infection and was put on 2 treatments of antibiotics (both cream and oral), only for the burning pain to return. She then thought I had herpes 2, but I tested negative for that. I switched doctors (also visited the emergency room) and Gyno #2 tested my pH and said it was VERY alkaline so put me on antibiotics because she too thought I had a bacterial infection that the first round of antibiotics didn't kill. After that didn't work and her not finding anything upon close examination, she didn't know what to tell me. I wasn't willing to accept for the rest of my life that I just had pain for no reason so after buying ALL free of dyes and perfumes detergent, changing my soap, taking daily baths in Epson Salt or Aveeno and still nothing working, there had to be something I was missing.

What struck me as odd was the burning would get really bad after lunch (around 3:30pm) and sitting in a chair at work made it very uncomfortable and very hard to concentrate. Because it happened after lunch, I got to thinking maybe, just maybe, it was something I was eating. So basically what I did was stopped eating EVERYTHING I typically ate, cut out all breads and sugars and was eating chicken, steak, hamburger, and vegetables. I stopped drinking alcohol and soda. My only drink was water. If I didn't make it myself (to know exactly what was in what I was eating), I didn't eat it. My plan was to slowly add things back in if I got better and find out my culprit.

The issue I then had was that I was STILL GETTING RASHES on my stomach and chest. I couldn't believe it. I was at my wits end and on the phone with my mother when finally had that AHA! moment. Right in front of me was a bottle of SEA SALT. I salted everything with it. That was the only constant that was kept in the diet. I run to get my box of Benedryl and popped one immediately. As the salt made it's way out of my body, over the course of a couple days, my symptoms DISAPPEARED! I couldn't believe it!!!! I did some research and sea salt contain traces of shellfish, as well as an anti-caking agent to separate the salts. Whatever it was wasn't agreeing with my body. It is used at some restaurants to salt chips (Panera's chips for sure) or french fries, and in more gourmet chips at the grocery store.

Now the story doesn't end there.

So I start eating everything I used to eat. I'm in such a great mood, it is glorious to be pain free!!!! Then.....the symptoms return. I had gone to the gym and had worn a thong so I think my V is raw from the friction. I wait a couple days, still burning pain. I get a rash around my anus and one on my stomach and think, great, I have ANOTHER ALLERGY! Crapola, I have watch what I eat again!

So I start thinking....hmmm....what have I been eating lately that was unusual (it had only been a couple days so it was easier).....they it hits me. I had had peanut buttered toast and had been taking handfuls of Peanut M&Ms from a community bowl on the counter. Popped some Benedryl to block the current symptoms and it WORKED. Did this for a couple days - popped a Benedryl every 4 hours until the symptoms disappeared. This stuff can make you tired, be forewarned.

I was thinking back to when I was having the original burning/pain and realized that I was poisoning myself at breakfast (sea salting my eggs), at lunch (I had a peanut butter and jelly sandwich every day at work) and at night (I would use the sea salt to salt everything from salads to entrees at dinner.) Talk about allergy overload! SIX MONTHS OF THIS!!!

My poor boyfriend. He stuck through this all, thinking it was his fault. Gyno #2 put me on sex arrest for a month to let my V heal and I felt horrible telling him we couldn't have sex for an entire month. He stuck through it like a champ, but I am not sure all guys would have. This wasn't easy for both of us and definitely tested the strength of our relationship.

After all the research I did on the V region, I thought it was only fair that I give back and share my story so I hopefully can at least help one person get out of the vulvodynia rut. I obviously wasn't getting any help from my doctor and figured it out on my own - but to pump yourself with anti-depressants/antibiotics/anti-fungals just to find out it's not getting better, the least I could do was to get my information out there. I know what it's like to be uncomfortable all the time, in a bad mood, no attention span, just because there is one thing in your life you can't fix!

I made an appointment with an allergist but unfortunately couldn't get in until mid-January to see if there is anything else I am severely allergic to.

Try it out, what do you have to lose?

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2 Replies:

  • Hmmm...no, I know cell phones are not causing this reaction. Whenever I eat sea salt or peanuts a huge rash comes over my chest and stomach, and the vulvar area has a slight burn to it. It only happens when I eat either one. I went to a restaurant on Monday and ordered seared tuna, and I could taste a crunchy salt on the tuna. Sure enough, full on itchy rash and minor discomfort in my girl area a few hours later. I try to avoid at all costs, because I don't want to be where I was 2 months ago. It was HORRIBLE. I have not had a reaction since I stopped ingesting these two things. I did, however, go to the allergist this morning. They did the skin test which proved nothing. All allergens came up negative, including peanuts. She told me I couldn't be allergic to sea salt. I told her different and said she should have seen my chest last night after eating the leftovers from said dinner. She said that the only thing that would explain all of this was I had a "food sensitivity" to these two items, which caused a reaction. I asked her how accurate the scratch test was and she said 99% (although I've heard different things from the web that they aren't accurate at all.) I told her I could handle with my hands peanuts/peanut butter but when ingested, a few hours later is when I have the reaction. She wouldn't do the blood test on me for whatever reason, but said my primary care physician can do a blood test for known allergens. Good to know, because I wasn't waiting another 2 months to get in there again. I do think that of all the past times I've been in to the gyno for what I thought were yeast infections (burning, not itching) I actually had eaten peanut butter/peanuts at the ball park to cause the minor discomfort, but no where near when I was eating peanut butter and jelly sandwiches/salting everything with sea salt on a daily basis starting last summer, which caused the reaction described above. I have read that for all the antibiotics that doctors are prescribing that they are killing the good bacteria in the stomach/gut/intestines to fight off allergens, so allergies/allergic reactions are increasing with more antibiotic use.
    Anonymous 42789 Replies
    • January 14, 2009
    • 08:00 PM
    • 0
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  • Thank you for sharing this! I have been having a similar issue and have only recently linked the connection to certain foods. My vagina would itch as well as my neck, ears, face, scalp, armpit's, chin, lips and around my lips. This has been going on for over 7 months. I recently made the food connection because I noticed it would happen after eating. I cut out everything except meat and veg and the symptoms went away completely. One day I had soup made with coconut milk and some organic chocolate made with coconut and coconut nectar. The itching returned but this time it was also all over my arms and shoulders as well. I am waiting for results from and allery/ sensitivity test because I know it is more that one's food. Can't wait to find out so I can control this for good.
    Anonymous 1 Replies
    • December 20, 2015
    • 09:29 AM
    • 0
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