Yes, you read that title correctly. And yes, I’m going there! I’m going to talk about something that most women want to keep private because of the embarrassment involved.
I have searched and searched and then searched some more for any and all information I can get about this condition. Every article, blog, etc that I have found only talks about women who get vulvar varicosities during pregnancy and are lucky enough to have them just go away on their own. End of story. No big deal. The problem is, however, that is not the end of the story and they are a big deal for some women. A very big deal, in fact. Why are these few unfortunate women overlooked? I really don’t know but I’m hoping I can change that.
Let me start by telling you my story:
When I was 17 I noticed a small lump on my labia. I kept it to myself because it’s not really a subject I knew how to bring up in conversation! After graduating high school I moved out of town and got an apartment with my best friend. This new found freedom meant dating which almost always leads to sex. Being the responsible 18 year old that I was, I made an appointment at Planned Parenthood to have my first gynecological exam. The lump on my labia had gotten a little larger so I asked the doctor about it. What came next was quite terrifying for an 18 year old girl! The doctor said she was referring me to a gynecological oncologist. Now, I was not the most intelligent gal out there but I did know what an oncologist was and I was scared to death!
I asked my mom to go with me on the day of my appointment with the gynecological oncologist. As we sat in the waiting room surrounded by mostly elderly females, I grew more and more terrified at what I was going to find out and the waiting was pushing me over the edge. Finally it was my turn to see the doctor. Doctor Oakley was amazing! He made me feel comfortable and relaxed which almost made me forget why I was there. After the exam I sat there holding my breath waiting for the bad news.
Wait a minute! That wasn’t the dreaded ‘c’ word I was expecting! It was something I not only wasn’t expecting but also something I’ve never even heard of. Vulvar varicosities. So, was this good news? Dr. Oakley explained to me that I had varicose veins on my labia. Just like the kind you get on your legs. Because the lump was gradually getting bigger, Dr. Oakley suggested I have surgery to tie off and remove those faulty veins. This surgery would result in removing the part of my labia where the veins were – a partial vulvectomy. So, definitely better than cancer but not something a young 18 year old girl wants to have happen. I would be deformed. But cancer free so I was quite thankful.
The surgery was a little more involved than the doctor originally thought it would be. He ended up having to remove more faulty veins than expected but it went smoothly and I only had to spend one night at the hospital. The recovery was horribly painful and slow but I got through it and was thankful to be able to start my new life lump free and labia free.
Fast forward several years. I went through three pregnancies and with each one I got vulvar varicosities that did not go away after the pregnancy. Actually, the lumps just got bigger and more painful. It was actually so bad that I couldn’t even wear a swimsuit because the lump was visible through the tight material. So, back to the doctor I go. Unfortunately, not only had I moved to a different town but Dr. Oakley had moved out of state. My obgyn referred me to a general surgeon who performed another partial vulvectomy, although there really wasn’t much vulva left on that side! This time the doctor sent me home the same day as the surgery and my recovery was even more painful than the first time. I was bedridden for a couple weeks and just absolutely miserable. The pain medicine my doctor prescribed was useless and I spent a lot of time crying. I didn’t think I would ever get through the pain but I eventually did and was anxious to look at my new body.
What I saw was horrifying! I looked like some kind of mutilated monster! It looked like the doctor used a chainsaw. Not only was my labia majora completely removed on the one side but my labia minora was also damaged. It had a shredded look to it. From that point on my appearance ‘down there’ became who I was. I was no longer feminine. I was grotesque. Sex with my husband only took place at night with all the lights off. I immediately covered up after showering or changing clothes. There was no way I was letting anyone see my deformity!
As the years went by my physical appearance became only one of the problems I was left with after the surgery. Because of the lack of ‘padding,’ wearing snug fitting clothing, especially jeans, became uncomfortable. Also, I was back to not being able to wear a swimsuit because of the extreme lopsided appearance. Sex also caused some discomfort.
That is when my search for labia reconstruction began as well as my search for other women who may be going through the same situation as me. To my surprise, I struck out with both searches. Sure there were plenty of plastic surgeons doing labiaplasty, but that was just for women needing minor repairs. I needed a whole new vulva!