So thankful to have found this!

Hello! I am glad to have found this and I will be posting my story later, but reading through the other stories was quite refreshing and I am glad to have this opportunity to discuss with others about this within the forum. I have been suffering from this for almost 2 years now and only myself and my boyfriend know. It is really hard and upsetting when you have no one to talk to or understand what you are going through. Especially doctors! I just recently went to a different doctor (she actually did one of the pap smears I got out of the many within the last year) and she actually sat and listened and I searched the internet and found Vulvodynia about a month prior. I told her about it and after the exam she determined that I indeed had it.

She told me to get Tea tree oil ( I believe that is what it was called) and to call her in a month. If it is still bad she is going to send me down to a specialist in Saint Paul, Minnesota. ( I live in Saint Cloud, MN). So wish me good luck and I do with all of you! I am happy to meet you all!

Hi Ellie and welcome to the forum. Just a quick word of caution though, tea tree oil can be a real skin irritant so be careful with it!

Thanks Sarah, and actually what does the oil actually help? My doctor didn't really further explain it, she just told me to check it out =O

Tea Tree oil is supposed to be anti-fungal and anti-bacterial so it will only help if you have a yeast or bacterial infection but to be diagnosed with vulvodynia those things should be ruled out first with swabs so as far as being a vulvodynia treatment it isn't going to help. It is however very irritating to the skin and I don't think I'd put it on my lady bits! Have you had infections ruled out? If not you can be tested for everything at a GU clinic, they're not just for STIs these days and they will be able to tell you if you have a yeast or bacterial infection.

That's interesting about that oil then. I have been tested for yeast, bacterial and urine infections at least once a week when I first was getting symptoms about a year and half ago. More recently I have been getting tested but it has been coming back fine with no infection, but I still feel irritated. She did do a swab and would know in about a week, but it will prob come back negative like it has lately. That is strange though, when she had my test results right there describing what I just told you.

It's typical behaviour from the medical profession unfortunately, they don't know what it is so they tell you to use things for yeast etc. A nurse at our practice told me to use Canesten cream which was a terrible idea because it burnt really badly and as I ddn't have a yeast infection was just making things worse. This is why us ladies have to research as much as we can and know our stuff when we see people so we don't get sent on wild goose chases.

Do you have other symptoms? Urinary symptoms or any other conditions?

Hi Ellie and welcome..I do second Sarah's words of caution with the tea tree oil..I am actually quite allergic to it! I cannot use it anywhere..used it on my face once and was itchy and stinging! I would not recommend it at all for the vulval area!

I have not found creams to be soothing and find its best for me to use nothing down there! I only rinse the vulval area with water and use no soap or creams at all.

I would also recommmend not wearing knickers when you can as it prevents them from rubbing and its good to get some air to the area!

I would recommend asking to see a vulva specialist..ask your dr to refer you to a vulval clinic as well as a pain clinic to look at controlling the pain

Good luck and keep posting

Sebby xxx

I appreciate your warnings about it! I have found also that creams haven't really helped much down there and have been more bothersome. The only meds I use from time to time now is Boric Acid that was prescribed by my Urologist. I have taken it after sex to help prevent any further pain ( itching, soreness, causing an infection). Lately it has been sharp pain around the entrance and just hurting in general on and off. I might take your advice about no underwear though because I have noticed it to be a bother at times >.<

Oh and my doctor said if I'm still hurting (which we all know I will be) at the end of this month she will refer me to a vulval specialist. I am very excited to actually see someone that might point me in the right direction.

Ellie,

Welcome. I live in Minnesota. I would love to talk w/ you about the docs here (St. Paul) and meds. I sent you a private message w/ my e-mail address. Just look at messages. Let me know if you can't get in. I have seen doctors in St. Paul.

Jules

Hi!

Your post intrigued me. I've been suffering for 15 years jumping from specialist to specialist with no success, with each doctor managing to make things worse. I am in dire need of finding an amazing specialist. I live in St. Paul MN. Do you have someone you can recommend.

I'm a 30 year old who is now at the point of afraid of dating because it causes too much anxiety due to past relationships. I'm willing to try anything. I've done 15 different creams and oils, acupuncture, nerve pain medications that have made my whole mind numb, allergy testing... I need someone who is willing to be more aggressive who won't just stick me on anti-anxiety meds for 2 years telling me each month that we should wait another month to see if it starts to help. I want a family and children and my symptoms are so bad that sex is not a possibility in my life.

ANY HELP would be appreciated!!!!!

Hey Cosette

I havent seen Ellie post here in a while....maybe if Sebby could give you her e-mail you would have better luck getting through to her.

Good luck

noni

Hi there

In case Ellie has opted out of recieving emails when posts are replied to I have emailed her myself to let her know

I can't give out any members email addresses without their permisson

I will let you know if I get a reply

I will also contact Jules as she is on our Facebook group and she has also seen drs in St Pauls

cosette51

hello, Sebby got a hold of me via facebook. i live in St. Paul and of course, have done EVERYTHING you have. there is one doctor at the University of MN. Women's health clinic who has experience in treating women w/ V. Her name is Dr. Jane Van Dis. It took me two months to get in w/ her. She was OK. I recently saw a doctor named Dr. Feldman at the U of M sexual health center. I did need a referral. I liked her a lot better than Dr. Van dis. I go to MAPS pain clinic in Midway. I have had the most luck there. I am on a few diff. meds that help w/. the pain. I also will be going back to a physical therapist at Sister Kinney in Bandana Sq. I'm going to send you my e-mail in your box so we can talk further. I'd love to chat.

jules