"Look! She bleeds from her vestibule!"

If you have read my first blog post (if not you can find it here), you know that I have a history of pelvic pain that inspired me to first dabble in Pelvic Health Physical Therapy and then dive in head first. I didn't go into detail about my condition because I didn't initially think hearing about the details was that important to my story. I realize, however, that it actually seems more scary with me glossing over those details in a way and I want to break through the wall of fear and shame and let people instead feel hopeful and informed. So here we go.

I told you that the first time I had sex, it was excruciating. Here's what it felt like to me - from the instant that there was any penetration, it felt like I was being stabbed with a knife in my vagina. It was a very specific, localized, sharp pain. It burned like someone was holding a match to me. It did not get better as sex went on, instead it got worse and more times than not I was not able to tolerate it. If we tried two nights in a row, it was always worse the next night. It never changed for the better, no matter how long we waited in between bouts of intimacy, no matter how much foreplay there was, no matter what lube we tried, no matter how much wine I drank, no matter what. It was an obvious physical problem.

My husband and me in front of our first house in Fayetteville in 2009, shortly before my surgery. #itwasnotactuallyacrimescene #myhusbandisanengineer

My MD at student health had absolutely no idea what to look for when I told her sex hurt. She didn't even look at the area of my pain. She brushed it off as a likely psychological issue and probably assumed that my husband abused me and that was why sex was painful. That is a legitimate concern and I don't ever want to minimize the impact abuse can have on a person's sexual health. However, for me, that was not the case. She gave me no hope, she made me even more confused and scared and ashamed. My poor best friend had no idea what to tell me. She told me that maybe I should keep practicing and it would get better. I did, and it didn't. It's not her fault, because no one talks about pelvic pain, so no one knew what to say to me.

Anyway I digress. My doctor at UNC, Dr. Denniz Zolnoun was my angel. I described my pain and she told me I had vestibulitis without even touching me. She told me that I was most likely a type A personality with lots of anxiety who never stopped worrying and that for that reason I had inflammation that just happened to manifest in my pelvic floor. (Yep, nailed it.) She told me that some people got migraines, others fibromyalgia, but for me, for some reason, I was lucky enough to have pelvic pain. Hurray. Unlike my doctor at student health, however, her first comment after diagnosing me was "We will fix it, don't worry." Umm, wait what? That's amazing, because up until now I feel like all of this was just me being crazy. Which, in a way it sort of was, after all my brain chemistry was out of whack and did make me a little crazy at times. But the thing was, it wasn't my fault!! I knew it!!

She examined me and for the first time ever, actually looked at my pelvic floor. Don't get me wrong, gynecologists and obstetricians are great at their job, but I do think there is sometimes a bit of a gap when someone comes in complaining of pain. Their job is to look at the organs, to rule out all kinds of medical issues like cancer, endometriosis, pregnancy, etc. Obviously that is number one and absolutely has to be done, I can't do that as a PT and I'm so grateful for what they do. To do that, though, often they don't get a chance to look at the tissues, the muscles, the quality of the skin. Dr. Zolnoun did a very thorough and very different exam than I'd ever had. To be honest, I wish I had been practicing pelvic health PT at the time because I feel like it is very similar to what we do with our patients. She looked at the muscles, the sensation, the skin of the vagina. Then she pulled out her Q-tip and touched my vestibule.

To clarify, the vestibule is basically the opening of the vagina. It's sort of where the outside skin transitions to the inside skin, to over simplify it. When she touched this skin with a Q-tip, it was so raw that it bled. The woman was so shocked that she actually acted slightly excited (I mean, she's a researcher so I totally didn't judge her because I'd have been excited too). She began exclaiming "You bleed from your vestibule! You bleed from your vestibule!" Here I am laying there on my back half naked just looking at her like she's crazy now yet also completely digging her enthusiasm for my delicate vagina. She then told me to wait there (sure, no problem, not going anywhere with this paper drape, no worries lady) and went to get a colleague to come in and have a look. "Look, she bleeds from her vestibule!" Good times.

The normal treatment plan was using estrogen cream to try and change the skin integrity a bit, use a vibrator to stretch and desensitize the tissue, and to go on oral medication to try and calm down my hyperactive central nervous system (aka my brain that likes to release way too many bad chemicals all over my body). Well, as I said in my initial blog post, none of it worked. The cream was annoying and not effective despite me being compliant with using it, the vibrator did nothing other than to make me feel even more ashamed (shout out to my AMAZING hubby who went to the sex store to buy it for me because I couldn't handle doing it myself, it was way too emotionally charged). The meds didn't help either and I still felt as anxious as ever. The best thing to come out of my time attempting to treat this conservatively was me being brave enough to ask for a different medication for my anxiety. She put me on a second medication and after two weeks I felt like a new (and better) person. I still take it, though I went off of it for years during my pregnancies, and it still works for my anxiety. I love it. It was the best thing I ever did. For my brain, not my vagina.

Anyway, eventually, two years later, I was done with all of it. I needed to be done. I wanted a family, I wanted to have sex with my husband, I wanted to be able to forget this had ever happened. Clearly that won't be happening after this blog, but that's okay. I told them to cut the skin off. It was our last resort. Somehow I ended up seeing a different physician along the way, I think Dr. Zolnoun was out or something so Dr. Steege, who was basically in charge of the program at that time, ended up finishing my care. He had a fellow working with him (I feel terrible that I can't remember his name, Matthew something??) and together they agreed to perform a vestibulectomy. They would go in, cut off the inflamed tissue, and pull healthy vaginal tissue down in it's place. My mom, mother in law, and husband drove me up there, my husband almost passed out watching me get my IV (not the best foreshadowing for my future C-section with twins but that's another story), and I went on back to the OR. I woke up with my cousin's face in my face being saying hello as I was wheeled to my room. My husband slept in the hospital with me and held my hand the entire night. Like literally, he slept on some little cot next to my bed and held his arm up in the arm so I could hold his hand. Those nurses probably though we were super annoying. After three weeks of recovery, I was cured. I don't remember when we had sex for the first time after it but it did not hurt. For the first time ever, I had pain free sex.

I got pregnant some time later, carried my son to full term and had a vaginal delivery with a pretty gnarly tear, but even so I have not had pain with sex since my surgery. The whole healing from a ripped vagina after childbirth is another story, but again, for another time.

I was lucky. Honestly, most women with pelvic pain have it worse. They hurt all the time, they hurt when sitting, when standing, they have to quit their jobs. If they have vestibulitis like I had they also have horrible muscle spasms in their pelvic floor. They are bounced from one physician to another, they have multiple surgeries that don't change their pain, they are so much more debilitated than I ever was. I was actually emailing a friend about this and I told her that part of me feels guilty for sharing my story because it's nothing compared to some I hear in the clinic. However, I also know that if mine were more challenging, I may not be here today writing a pelvic health blog. I'd be in a very different place. I may not have my babies, I may not be working as a PT, it's a very physical job after all. I certainly wouldn't be here sharing this with the internet.

My reasons for sharing these intimate details of my past are so that the next time your best friend, your spouse, your child, your coworker says to you "Something doesn't seem right with me, it hurts when I have sex," you'll tell them there's hope. You'll tell them they aren't crazy and that there are people who specialize in making this better. There are physical therapists just for this, there are physicians who do this every day. There's help and there is hope. Painful intercourse is not ever normal. It's not. Don't let anyone tell you it is. Get help. The right kind. The kind that makes you feel like you're going to be okay, not the kind that makes you feel ashamed. There's nothing to be ashamed about. Trust me, I know.

Here we are in 2016 in Plymouth, MA on an epic 10 day road trip with our three children. We all shared a hotel room so no sex but still, we could have if we had wanted to, which for me is pretty darn exciting even now. 

Dr. Lacy Kells PT, DPT
The Physio Down Low

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