If you are ignoring my warnings, merely curious, an IC patient or (worse) a Vulvodynia patient, you can keep reading. Just don't say you weren't warned about the topic & content of the following post. This is meant to be a (hopefully) helpful post to any patient who either needs to know they aren't alone in this painful journey, and maybe they can learn from our mistakes & lessons, but if not, at least know they aren't the only one!
Also, as a side note, I discussed writing this post with my husband before I did. He agreed that it made sense to share our trials, if it could even help one person, it was worth it. He knows that there will be a remarkable amount of "overshare" in this post, but his love for me and my desire to help overcomes that. :)
My story of having vulvodynia actually starts back when I developed heavy, painful periods. It is possible I've had VVS (vestibular vulvodynia syndrome) all my life, in fact. My periods were so heavy I HAD to use tampons just to keep from making a mess. But using tampons hurts- a lot. My sisters, whom I confided in, told me that tampons hurting just meant I wasn't using them right. Well, not exactly. In my case, I was using them correctly, but my body wasn't prepared to handle them. I eventually just stopped using them because the pain was annoying, and learned to live with changing my pad every couple hours.
My husband & I were both virgins when we married. Our parents & religions had expected that much of us, and when we found each other we realized there was no greater statement of love than to have saved all of ourselves for each other. Later on, in retrospect, I am so glad we waited, as we were & are so devoted to each other, physical difficulties have not been able to make their dent in our relationship.
My wedding night actually found me driving my new husband home. He woke up once, to help me find the right road, then was back to sleep again. We both fell into bed when we arrived at our house, and any pressures of a "wedding night" dissolved into sweet sleep.
The following day we finally chanced the inevitable, and it was not good. Well, at least for me.
I cried tears, literally, and my husband didn't know what to do. He was hurting me, even though it was good for him, and so he stopped. I can't tell you all the things we were thinking, but I'm sure he, at some point, wondered if we'd ever even be able to have sex. I know I was wondering the same thing.
Later, on our honeymoon, we were able to actually set things right, but still not without pain for me. I wanted to be a good wife. The best wife I possibly could, so I hid the fact that it hurt. I didn't want him to know he was hurting me, especially since it was so good for him! So I found it was just easiest to hide what I really felt. (NOTE- not a recommended course of action!)
We found that relaxing my whole body really helped make the entire sexual experience much better for me, and I really think it played a huge part in helping "switch off" the effects of vulvodynia. Full body massages are pretty much a requirement for me to be able to have intercourse.
From there our sex life got pretty good. I mean, in the first 6 months of marriage, we went from "Ouch, ouch, that really hurts me!" to being able to go to the head of the class. We really thought we were blessed, and that the painful part of my life was over.
We discovered that using a diaphragm wasn't in the cards. I got measured for one, ordered it, inserted it & my entire vagina practically burst into flames. My gyno didn't seem to believe/understand why it didn't work... but that was also explained when I was diagnosed with VVS.
It turns out I was probably in a remission at that point... I ended up being diagnosed with IC, and once my medication started to work, I realized I was having pain down there from more than just my bladder. When I exercised on my lunch break, the pain was so bad I would literally use an ice pack during my drive back to work! I also noticed when I would eat blueberries (an IC-friendly food) in about 5 minutes I would experience spasms of pain.
I went to my PCP, and he prescribed an anti-fungal. After several days of it, the pain had not changed. He suggested trying my Gyno. She diagnosed me for VVS by using the touch test. I had no idea how bad my pain was until she examined me & used a cotton q-tip to gently touch my vulva. I almost leaped off the table in pain. (I suspect those stupid stirrups are more there to keep you from leaving...) Anyway, she gave me an info sheet of vulvodynia, suggested taking calcium citrate & prescribed Elavil (amitriptyline) for long-term pain relief and lidocaine gel for short-term relief. I'm going to make a long story short by saying I don't like how the Elavil makes me feel (and I didn't triple the dose like she had wanted me to) but it did help cut my pain greatly. And so I continue to take it to this day- even though it produces heart palpitations & I have to take another med to stop them.
Lets fast forward to about a year later... I was still having pain upon sexual contact, and I went to my gyno in hopes she would have some help, but she didn't... in fact, she seemed to have given up on me. (I'm currently shopping around, hoping to find a specialist to try, but for now I am trying some alternative methods for relief) That same day we received our first package from the Desert Harvest company- I had ordered their IC aloe capsules, and as an afterthought, added a bottle of their "personal gel", which is recommended for lubricant. We used the aloe lube for the first time that afternoon, and for the very first time in my life- NO PAIN during sex. None at all! In fact, I almost started crying because for the first time in my life... I could enjoy myself with my husband. From there onward, things went from good (as in doing pretty well in the sack, despite the pain) to AH-MAZING (as in finally being able to enjoy sex because we weren't worried about hurting me)!
Unfortunately, a few months later, while on vacation, I stayed in my bathing suit for a photo shoot for my husband... and a few days later I ended up with a yeast infection. Since then, I have been fighting yeast on & off, and I am trying a yeast-free diet & doing a cleanse to see if it will help. I have hope, as we were able to have pain free sex at one point, so it is possible again.
I'm going to include some tips that we've found helpful, in case someone else might like to try them-
- Go to the bathroom beforehand- it helps eliminate UTIs and flareups. It also might keep you from needing to use the restroom during sex. (Been there, done that.)
- Take a short bath (without bath products) in warm water before sex. (Adding a 1/4 cup of baking soda can be beneficial as well)
- Alternatively, a massage (full body) can also be helpful, especially if you are experiencing anxiety over having sex
- Drink a serving of water about 10 minutes before you are planning on having sex- the additional hydration may help with lubrication, and in IC patients, might help protect the bladder from being prodded into a flare
- If you are using aloe vera for IC treatment, take an additional dose prior to sex
- Birth control options can be limited when you have IC &/or VVS. I already mentioned that diaphragms are a no-no. Condoms can cause severe pain as well. Spermicides contain a chemical which causes irritation to tissue and should definitely be avoided as well.
- Lube, lube, lube! There are several alternatives to "store bought" lubricants- try almond oil, aloe vera, or check your local health food store for products like Emerita natural lubricant.
- Even though your partner might not like the idea, making entry s-l-o-w can sometimes really help.
- Try different positions- man from behind, and reverse cowgirl are a couple that might relieve pressure more. Be willing to experiment, and also be sure to stop doing something if it hurts!
- Even though we never can do it for very long, sometimes abstaining from sex (intercourse) is helpful. Doing "outercourse", such as stimulation can be beneficial, especially during flares.
- Post sex, be sure you urinate. (If you have IC, you probably know that it isn't optional!)
- Take a shower after sex as well. We found that I also seem to have a semen allergy (don't I have all the luck?!) and so cleansing immediately seems to help a great deal. Just warm water can reduce inflammation as well.
- Drink more water- we found that me keeping hydrated made a huge difference in my level of pain- and sometimes drinking (or not) was the difference between a flare (or not)!
- My last tip is BE HONEST with yourself, and your partner. Once I finally included my husband in experiences, good and bad, we finally were able to start overcoming the hurdles that were in the path.
Having vulvodynia is not anyone's idea of a good time... however I have learned a great deal about myself & also my relationship with my husband. I am grateful to have such a devoted, wonderful man as my best friend, companion & lover. We have ended up being so well suited for one another, and I am so glad he is willing to help me through these hard times.
If you think you may have vulvodynia, visit the National Vulvodynia Association, and take their online tutorial: http://www.nva.org/ (warning, the site does contain some graphic images, in context to vulvodynia)