dahlingnicki asked thingsilearnedfromcosmo: Your vulvodynia post is perhaps my favorite and most reassuring thing on the internet. Are you me? My story is IDENTICAL to yours, right down to the supportive boyfriend and me telling him to break up with me because I can’t have sex. (We’re still together, he’s as perfect as ever.) But, I’m not at the successful ending. I too am on a college budget, (read: broke) so do you have any advice for treatment/things that really worked for you? It’s nearly impossible find resources for vulvodynia, ugh.

(Answering this in a new post because it’s a long response and I want to save your dash.)

I am really sorry to hear that you have vulvodynia. It can feel very alienating to be diagnosed with it because it seems like no one else in the world has even heard of it before, let alone knows what it is or how to help. But I’m so happy to hear that you have a supportive boyfriend. It definitely helps a lot!

As for what you can do, I’m more than happy to share the things I tried, but keep in mind that I’m no medical expert and if they don’t work for you, don’t give up!

Disclaimer to those reading: if you don’t like words like “vulva” and “lube” then feel free to skip ahead to sources or return to tumblin’ elsewhere.

I immediately switched from tampons to pads.

I wore loose, white, cotton underwear because it lessened the pressure against my vulva. And, as much as I loved tight pants/jeans, I tried to reduce how frequently I wore those as well, instead opting for dresses and skirts with stretchy leggings.

I stayed away from hot tubs/pools because of the chlorine (bummer, I know), but frequently washed my vulva with cool or warm water. (My boyfriend recalls occasionally using a cool rag to relieve some of the pain. Cold fingers work, too!)

When I was sitting for extended periods of time, I would get up and walk around to try to get rid of the pressure.

What helped the most, I think, was actually something my boyfriend did. As frequently as possible we would lay together in bed and, while watching TV or talking or listening to music, I’d have him massage my vagina. It sounds weird, but it worked just like vaginal dilators and it was free. So, he started by using just his index finger with a little lube and gently massaged my vulva (which also hurt like a motherfucker) and then he’d rub, very softly, in circular motions along the entrance to my vagina. It hurt. But eventually it helped my muscles relax and I got used to the width of his finger, and then he could use two fingers, etc.

On “good days” when my vagina was feeling okay, we also tried sex. It usually hurt something awful and we had to stop and then I’d cry and apologize. I don’t know if it helped, but I guess if I didn’t continue trying every so often, I would never have begun to realize that it was starting to hurt less and less. When we did have sex, different positions hurt less than others, too. For example, I could NOT do missionary anymore without wanting to scream. But “spooning” sex worked really well. And, of course, if sex is off the table (as it was for me most days), remember there are other ways to get off! Mouths and hands work perfectly.

As a last resort, I took myself off of hormonal birth control. I had read somewhere that women who were put on hormonal birth control (like Yaz, Yasmin, Ocella, etc.) early in life were likelier to develop vulvodynia. But since there’s hardly any research, no one can really confirm anything. I was put on Yasmin when I was just 16, so I decided to go off of HBC for the time being to see if it would help me. (I wasn’t having sex, anyway, so I felt like it was worth a shot.) It did help, and eventually I was able to go back on HBC, too. If this an option for you, please be sure to take other precautions to prevent pregnancy. :)

Most of all, I was really, really patient. Well, I tried to be. It took a very long time for things to start to get better. I’d estimate a year? But eventually my vagina was less irritated on a daily basis, which made me want to be sexually active more frequently. I mean, there was a period of time where ALL sex was off the table for me because I was so depressed. If you get to that point, take advantage of your on-campus therapist! Most colleges offer a few free or reduced-cost sessions.

If you have insurance with a low co-pay, here’s a list of doctors who treat vulvodynia.

Other suggestions from this website (which I did not try personally):

• Use dermatologically approved detergent and don’t use fabric softener on panties.
• Use unscented toilet paper that’s soft and white.
• Avoid perfumed creams or soaps, pads or tampons, and contraceptive creams or spermicides.
• Avoid getting shampoo on the vulvar area.
• Avoid hot tubs or pools with lots of chlorine.
• Rinse the vulva with cool water after urination and intercourse.
• Avoid foods that make urine more irritating. This may include foods such as greens, beans, berries, chocolate, or nuts.
• Keep the vulva clean and dry.
• Soak in lukewarm or cool sitz baths.
• After intercourse, apply ice or a frozen gel pack wrapped inside a hand towel.
• Alternatively, topical heat applied with a heating pad can reduce pain in some women with vulvodynia.
• Try relaxation techniques.

Here are some online sources (which you’ve probably already exhausted, but you never know):

• http://vvs-community.livejournal.com/ (you’ll need an account to post)
• http://women.webmd.com/vulvodynia
• http://www.mayoclinic.com/health/vulvodynia/DS00159/DSECTION=lifestyle-and-home-remedies
• http://www.ygoy.com/index.php/vulvodynia-treatment-and-remedies-of-vulvodynia/

Best of luck to you and if you have any other questions, you know where to find me.