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Vulvodynia problems doctors aren't helping me

By Anonymous January 20, 2015 - 6:22pm
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I've been suffering with vulvodynia for almost a year and a half now. I know that doesn't seem like a long time compared to how long a lot of other women have had it but for a 20 year old it seems like a century.

It all started when my birth control, loestrin, discontinued. I was then put on the replacement contraceptive. I started having a localized a pain in the entry of my vagina. I at first didn't think much of it, hoping it would just go away. Along with having vaginal pain that started to grow from just a localized point into an awful pain contributing to some swelling. At this time my insurance decided not to accept my new birth control so I was switched to a generic birth control that was supposed to help with cramps (which was the whole reason I went on it in the first place). The new birth control I was on gave me horrible breast pain along with acne and weight gain and to top it off didn't even help with my cramps. This continued to happen with the next four birth controls I was then put on.

Now to elaborate on my vulvar pain. I have a localized pain that fluctuates between a pain I can pin point and a terrible burning sensation. Sometimes I have random swelling that comes and goes. Some days my pain is so bad I find it extremely uncomfortable to even wear underwear.
I have been to SEVERAL doctors and nurse practitioners. I first went to my general gynecologist. She thought at first that it was just a yeast infection and treated me with an antibiotic, when that didnt work I was put on a higher dosage. This not surprisingly didn't seem to be the answer. I was then thought to have a bacterial infection but the test came back negative. So she next thought that I had vaginosis but again it came back to be negative. My doctor had no idea what it was so she then sent me to one of the nurse practitioners hoping to get a second opinion to try to diagnose what I have. This nurse kept asking me over and over again about how many sexual partners I had and if any of them would have cheated and if there was any chance I would have an STD. I kept insisting that I do NOT have one, to just clarify here I have only slept with two people the first I dated for close to three years and the second boy I live with currently and hope to marry soon, did I mention that they were both VIRGINS and very loyal to me. Well with all that being said she tested me for a ton of different stds along with infections when all of that came back negative I was then sent to two other nurse practitioners. One of them tested me for literally everything she could possible test me for even cancer. (so I was tested numerous amounts of times for things I was already tested for giving me a 500$ bill). Finally I was sent to a vulvar pain specialist and that is who I am currently going to now. I have been given estrace (estrogen cream) which made me feel worse, a steroid cream and ointment this did no effect on me at all really. The one thing that has helped a little was the lidocaine I was prescribed, it numbed me for about an hour or two and I still didn't numb me enough for sex. I was also put on a mixture of lidocaine and gabbapentin (spelling?) but only burned and didnt really help that much with pain at all.

I have currently been swollen for two months now with no sign of it coming down at all with a burning sensation anytime something comes in contact with that area.

The worst thing about this whole situation is that my doctor, who is a vulvar pain specialist, believes there is no cure to vulvodynia. Everytime I come in she always states "there is no cure although there is a list of things we can try but ultimately you just need to find something to help with the pain and hopefully it will just go away" with my doctor telling me this information makes me feel like I have no hope for ever having a healthy sexual relationship let alone not having constant pain. I have decided to post this in hopes that someone would know what I am going through and give me some support in all this. I believe that this is related to my birth control and the hormone levels that it can permanently alter (I've done a lot of research). Also I just wanted to say thank you for making it through this all and taking the time to read this and give me some advice and support.

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EmpowHER Guest

Hey! I have a similar story! I had vulvar vestibulitis for like 2 years. I almost cured myself. I wrote an article about the things that hleped me the most here http://health-life-love.blogspot.ro/2015/07/how-i-healedcured-vestibulodynia.html

July 11, 2015 - 9:41am

I'm older than you and went through a similar story. Mine started with a uti after my then bf licked my Anus and vulva- sorry for tmi lol. I went to numerous doctors and tried tons of treatments. The last time I had intercourse I had to take Vicodin and use ice after. I have no sex life and no relationship now. He said it didn't matter but it did. I doubt I'll ever have intercourse again.

It turned out I have type 1 diabetes and none of the stupid docs diagnosed it! I had all the classic symptoms. My vulvadynia is much better now that I'm on insulin. No more yeast infections. But it's not gone. Here is what I do: no underwear, irrigate myself with a wet tissue after urination, loose clothes, try not to have any friction or too much pressure there- I used to have a special pillow it was so bad but I don't need that now unless I'm at a computer sitting for a long time. I still have trouble riding my bicycle.

I also used birth control for cramps for ten years and I think that contributed to everything. If I were you I would stop it and just take pain killers. Bc can cause blood clots too. I had 3 during DKA probably caused by that not the hrt I was on but now I can't use hrt anymore. I do use a water based low dose estrogen only cream on my vulva-( I have vestibular vulvadynia )which helps a lot. I'm in menopause now and the vaginal tissue gets thinner and more fragile You can get this by Rx at the women's international pharmacy. I hope we all get cured one day. So far mine is about 8 years in. While I was in the hospital I also had a bowel blockage and some tearing of that area but that has healed now. I'm lucky I survived everything. I hope you get better soon!

April 20, 2015 - 11:40am
HERWriter Guide

Hi Anon

Thank you for sharing your story with us and it made me quite sad to read all you are going through and all the medical misunderstandings along the way. Not only is all that frustrating but you're also dealing with such physical pain too, with a serious emotional element.  

The cause of vulvodynia remains unknown. Researchers continue to identify a cause and find better ways of treating it.

I found a website, National Vulvodynia Association.

The site offers an online teaching program, which I thought you might find helpful.http://learnpatient.nva.org/

I would like to point out two particular paragraphs:

Adopt a Healthy Lifestyle
A nutritious diet, adequate sleep and daily exercise are important for everyone, especially people with chronic pain. Eat a balanced diet with lots of vegetables and fruits, limit simple carbohydrates and unhealthy fats, and drink at least 6 glasses of water daily. If you need guidance on healthy eating, see a nutritionist. Since sleep, mood and pain are closely linked, it’s important to get enough restorative sleep. If you’re not sleeping 7 or 8 hours each night, or have difficulty falling asleep because of pain, talk to your provider. Although many people with chronic pain hesitate to exercise, unused muscles generally cause more pain than toned, flexible ones. Research shows that aerobic exercise boosts the body’s natural painkillers and enhances mood. Under the guidance of a health care professional, choose an appropriate exercise program. You don’t have to overdo it, e.g., you can start by walking 15 minutes daily. Everyday stress can also worsen pain, but you can learn to control it with meditation or relaxation techniques, such as deep breathing and yoga. Discuss stress-relieving strategies with your provider or a psychologist.

Try a Multi-Modal Treatment Approach
There may not be simple solutions to chronic pain, but that doesn’t mean improvement isn’t possible. Many treatment options exist and you can try a combination of treatments to relieve your pain. You may want to consider a regimen that includes both medical and complementary strategies. No single treatment works equally well for all women with vulvodynia and you’ll probably have to try many treatments before you find the ones that work best for you. Many women find that combining medication, physical therapy and a complementary treatment, such as acupuncture or massage, provides the greatest relief. Psychological counseling should also be considered if you feel anxious or depressed, or want to discuss your sex life or close relationships.

I wonder if the issue is with how your nervous system transmits messages of pain to your brain. Have you been evaluated by a neurologist? Should this prove to be the case, treatment with a medication used to reduce symptoms associated with neuralgia might work for you.

Anon, have you read our blog by "faf" - My Tracks to a Cure, regarding vulvodynia? 

Read it here and let us know what you think:


We hope to hear back from you soon


January 21, 2015 - 6:01am
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