by: Katie Weiss
People who know me, close friends, family members, acquaintances, and co-workers, know that I like sex. I like to know how people do it, why people do it, how often people do it and with whom. I like to talk about the ways to do it and the types of protection to use while doing it. I even like to evaluate the ways we teach youth about doing (or not doing) it.
It should be no surprise then, that when I started doing it, I was well prepared. My boyfriend of the time and I had researched it, talked about it, made sure we both consented to it, consulted friends about it, and protected ourselves (with 5 methods of birth control) from it. So when we stopped analyzing it long enough to actually do it, and it hurt, I knew that that was pretty normal.
What I hadn’t been prepared for, what my months (years, let’s be honest) of research hadn’t equipped me for, was when it didn’t stop hurting.
At first, I figured the pain that came along with sex was normal because virgin-boyfriend and I were both so new to it. Plus, we were kind of awkward already and our relationship had been slowly dwindling. What I later came to find out, over the next four years of painful sexual relationships, was that my work would be cut out for me if I ever wanted to be successful, and happy, while doing it in my future.
When my senior year of high school started, I was diagnosed, due to severe pain in my hips and the constant feeling of a urinary tract infection (without actually having one), with having Interstitial Cystitis or IC. IC is when microscopic holes exist within your bladder and react to the acids in your urine causing a myriad of symptoms including bodily pain, frequent urination, and, if you can guess, pain with intercourse.
I was frustrated. I was mad. I was relieved.
My doctor told me that watching what I ate would help with my pain during sex. So I started watching my diet specifically along IC restrictions. I no longer drank caffeinated soft drinks and decaf and regular coffee drinks were out. I limited my intake of orange, apple, pineapple, and cranberry juices. I kept an eye on citric acids, avoided tomatoes, and more. It wasn’t easy and, even though regulating my diet stopped many of my symptoms, it didn’t help with the pain I was experiencing with sex.
When I met my first real, long-term partner, a guy I’ll call my Last Big Squeeze, I thought everything was fixed. The first month or two we were messing around everything seemed to be mostly better with pain here and there. And then, it just wasn’t anymore. There was pain all the time and no matter what we did, no matter what I googled on the internet, I couldn’t find a solution. Squeeze was obviously doing it wrong. I was obviously doing it wrong. And people on the IC chat rooms who had the same problem I did all avoided sex, so I had no solutions from them either. At this point I had been trying for three years to find some kind of answer, any answer. My situation felt hopeless.
What’s worse is that Squeeze and I were really trying to make it okay. He was trying, really trying, to make sure my body didn’t hurt. But we were both young and so frustrated. Plus, his last girlfriend had been really, really into sex. So going from a girl who wants to do it five times a day to one who can barely manage sex multiple times during the week, was extremely difficult for him. I felt like I wasn’t good enough because I couldn’t have sex like he wanted me to. I just couldn’t be excited for it when I was anticipating the pain that ultimately would go along with it.
You don’t realize how important sex is to a relationship until you are afraid to do it. Squeeze was afraid of hurting me. I was ashamed and embarrassed. The internet wasn’t helping and there was only so much my supportive and understanding mother could help me with too. I set up doctor’s appointments in my home town and all four physicians I saw told me to use more lube. Squeeze and I tried that. Because of my IC, I was allergic to the glycerin in many lubes and had a few bad reactions- something they hadn’t thought about. I was lucky enough to have helpful coworkers who pointed me in the way of vegan lubes (all natural!), which helped a little bit.
What was most frustrating about trying to find a solution is that my doctors never seemed to understand what an issue this was for me. When I told them lube hadn’t worked, it was as if they shook their heads at me and just thought “she’s too young to get it.” Even though it had been happening for years, they just kept saying the same things despite my protestations that it wasn’t working. I was so desperate after my doctors failed me, I even called sex therapists to ask if they had any solutions, but they really didn’t. Their advice was basically to grin and bear it. Just deal with the pain.
It should be no surprise to anyone then that Squeeze and I were doomed. To me, he was too set on wanting me to be “normal.” Though we definitely had our differences, it was our inability to connect about what to do about my problem – not our problem – that made me desperate and him unavailable. When we broke up, I dramatically told myself that I should never date again. Not only was I crushed from losing my first true love, but I was disgusted that it was my fault – that anyone who was only 21 could be so deficient.
I know now that Squeeze and I didn’t break up because sex hurt. There were a lot of other aspects at play there. But I think that feeling of inadequacy because of what I wanted and needed to have a positive sexual relationship, many people know very well. I am still ashamed by this part of me. It’s not something I’m proud of. It’s not something I necessarily want anyone to know. However, the amount of time that it took me to find the beginnings of an answer is ridiculous. Five years. Five years.
It was eight months after Squeeze that I met my Nice Guy. We had a brief three month fling but he cared deeply and passionately about me right away. When I confided in him about my problem, with a lump in my throat, he told me liked me just the way I was and we would be fine. He told me I was beautiful and smart. Whereas Squeeze had kept asking what was wrong with me, Nice Guy kept telling me how we could work together to make it right.
I searched for a doctor that was a specialist in IC. Though I had already seen a urologist at my home and I thought that it would just be another useless meeting, I took a chance. I didn’t want to go, but the weight of knowing that I could be a sexual burden to someone yet again pushed me to it.
I came out with solutions. I came out with answers. I came out with people who understood what I was and had been going through. I came out with hope.
After that first doctor’s appointment, I had physical therapy (for all of your personal parts!) set up. I had medications that could help – with a 60% cure rate. I had the possibility, if it really kept being so bad, of surgery – with a 90% cure rate. I had options.
My physical therapist was excellent. She did both internal and external work to show me how my muscles functioned. She gave me stretches to help loosen my extremely tight hamstrings. She explained how to stop my mind from over-thinking the pain when sex was going to happen. She even got mad with me about people who didn’t know that there were people like her out there to help. I was also put on a special steroid medication that my doctor thought would prove to be beneficial.
And you know what? It started to work.
The first time I had sex without pain, I cried. I clutched Nice Guy to me and sobbed. From happiness. From relief. From a raw mixture of the two.
This is not a quick solution. I have a lot more work to go, both in getting over my discomfort, embarrassment and shame and in physically working to make it better where this is concerned. But it has been getting better. And I can’t imagine that it won’t get better still.
I think it is important for people to know that this is not something to be ashamed of. Even though I am still pretty uncomfortable with it, I think it’s necessary for people to know that whether it’s five months or five years, there are solutions; that painful sex is a real thing that affects both the person suffering from it and any partner they might have.
The best advice I could give is to be open with your partner(s) about your body. Be clear about what feels good and what doesn’t. Be willing to talk about sex. I don’t believe that any intimate relationship is easy, but with open communication and a willingness to work with one another, I think just about any problem can be overcome.
Most importantly though, I’ve learned that it is essential not to think about this as a problem. This is just a part of who I am and who I have become.
You know, acceptance is the first step towards recovery.
Katie Weiss is a recent graduate of DePaul University who loves Hershey’s with almonds, her teapot collection and hoop earrings. She spends her time as a hard-working admin at National Louis University, an all-out bro at Mad River and a nerd-loving Merlin on Netflix. She is consistently inspired by her amazing peers and thinks everyone is cute.