In summer 2020, I was diagnosed with Interstitial Cystitis (IC), an incurable condition that directly affects the bladder but can also cause generalized chronic pelvic pain and tension in the pelvic floor. IC can be triggered by stress (thanks 2020!), diet (goodbye alcohol, coffee, and spicy food), and sex (cue dramatic music).
I’m by no means an expert, I only have a year of lived experience with this condition, but I’m writing this because I wish I had something like this to read when I was first diagnosed. Something that doesn’t leave me worried about how I’m going to live with this for the rest of my life but instead reminds me that I’m not broken or damaged. I hope that by being vulnerable and sharing my experiences and realizations from the last year, I can help someone else feel less alone.
Here are 5 things I wish I had known when I was diagnosed a year ago with chronic pelvic pain:
1. Pain with sex isn’t normal, even if it’s your first time!
Growing up in a conservative state gave me a weird relationship with sex. Even with more progressive parents, I felt like sex was something I was supposed to just ‘get’ even though no one taught me anything. I remember spending half of a semester on STI’s in my high school parenting class, but absolutely ZERO time on how any sex actually works. So I did my best to avoid getting close enough to anyone for sex to be an option until I graduated college.
When I finally felt comfortable and confident enough to have penetrative sex for the first time (which was right before the pandemic, of course), I was not prepared for how painful it was for me. I had grown up hearing from friends, media, and even my primary care physician that ‘the first time might hurt, but it’s normal. So I tried my best to push through the pain, waiting for the pleasure I was ‘supposed to be experiencing. But it was too overwhelming for me, and I had to ask my partner to stop multiple times. Thankfully he was really patient with me, but it was still hard for me to get out of my own head and be present for the rest of our time together. I not only felt the anxiety of being ‘sexually inexperienced, but I also couldn’t help but feel like there was something wrong with me and that I was somehow broken.
Since then, I’ve discovered that ‘common’ and ‘normal’ are sometimes used interchangeably in women’s health. Just because it’s common that 3 out of 4 women experience pain with intercourse at some point in their life doesn’t mean that pain should be normalized. Whether it’s your first time or your 1000th, if the pain doesn’t go away, PLEASE see a doctor as soon as you’re able to and know that no matter what you may discover, you deserve to enjoy sex too!
2. You can still have fun, great sex with chronic pelvic pain
One good thing about not having sex in person for the last year is that I’ve been able to add FaceTime sex into my routine. It’s given me the freedom to grow more comfortable being sexual with someone else without as much anxiety around unleashing the emotional baggage of my chronic illness. It has also motivated me to research and experiment more with toys and lube so that I feel in control over my experiences and don’t feel at the mercy of my chronic illness.
A couple major things I learned in this journey of ‘self-exploration’.
First: Don’t buy a ridiculously large penetrative vibrator for your first one! (Even if the reviews are amazing) This really should have been self-explanatory, but it was the beginning of quarantine, and I hadn’t been diagnosed yet, so I thought my painful first experience was just a fluke. That the pain was just a consequence of my anxiety and that size wouldn’t matter. But it does matter, and I truthfully haven’t used a penetrative vibrator since my diagnosis. I hope to someday, but that’s not my end goal! I just want to get out of my head and enjoy my next in-person experience whenever it happens.
Second: Lube is your best friend! But also be careful when trying new brands and varieties because if you are already sensitive to vaginal sensation, it definitely makes a difference. I had to try a couple before finding one that doesn’t cause additional vaginal discomfort and irritation (thanks, Dame!). I recommend checking out Personal Lubricants 101 and the Best Lubes for Sex list if you want some options.
However, even though virtual sex and trying new toys have allowed me to pretend like my chronic pelvic pain isn’t a barrier to pleasure, I still have to fight against my fear that I will never be able to have ‘normal’ sex. It wasn’t until I took a Sex Ed 101 workshop with Rachel in March of this year that I finally began to change my perspective on what sex is and can be. I remember that she defined sex as a “meaningful experience of pleasure,” and right away, something in my brain clicked. At that moment, I realized that I could still have great sex outside of the virtual fantasy; I just have to shift my mindset away from the limiting ‘penetrative sex is endgame’ mentality and into a more broad understanding of what feels good for me and how to achieve that, both in partnered sex and solo.
Remember: YOU DESERVE GOOD SEX! It just might take a little work to reframe or redefine what sex means for you, and that’s okay.
3. Pelvic Floor Physical Therapy is the best invention since sliced bread (trust me).
Even though pelvic floor physical therapy is the only IC treatment given an ‘A’ grade by the American Urological Association, I wasn’t given any information by my urogynecologist. If I hadn’t stumbled upon @pelvicsanity and @thepelvichealthladies on Instagram, I honestly don’t think I would have even realized it was an option for treatment as soon as I did. Now I can’t say enough good things about it.
Pelvic floor physical therapy is great because it can be tailored to your specific concerns. The physical therapist’s job is to work with your routine and give you the tools to live your life more comfortably! For example, my physical therapist has worked with me on a yoga routine that incorporates poses that relax the pelvic floor, and she’s helped me get started on a dilator program that has allowed me to feel more comfortable with penetration. In our sessions, she uses internal and external muscle relaxation techniques that make me swear that her hands are magic.
Unfortunately, to get the personalized care I was looking for, I had to go to an out-of-network provider. This means I pay 100% of the cost out of pocket. While I am incredibly privileged to have that option, I can only afford one appointment a month even though weekly appointments were recommended. I only bring this up because it’s definitely something to keep in mind if you decide to pursue pelvic floor physical therapy. It might take time to find the right physical therapist for you that you can also afford, and that’s okay! I was lucky and found an amazing physical therapist within my budget on the first try, but don’t be afraid to explore other options if you don’t feel like yours is a good fit! You are hiring them to serve your needs and concerns.
4. Don’t be afraid to ask for what you need.
2020 was the year that this chronic people pleaser finally learned how to set boundaries! Setting boundaries is something I didn’t realize I needed to be doing until I was about to go to the ER for a really intense flare of pelvic pain. I was emailing my boss and co-workers something like, “maybe I’ll still log in this afternoon,” because I felt guilty about taking time off again. (In my defense, I was also an hourly temp employee without paid time off, but still, please don’t do what I did). After that day, I decided that maybe it was time for me to talk with my therapist about setting boundaries with work and other aspects of my life. It was time for me to put myself and my health first finally.
My therapist helped me find the courage to have an honest conversation with my boss about what I was going through and what that would mean going forward. Once I got through that conversation and realized that my boss didn’t suddenly hate me, it gave me the strength I needed to start setting boundaries in other aspects of my life. Realizing that I could be honest about what I needed without losing people in my life has truly been a game-changer for my anxiety, especially when it comes to sex.
A year ago, my only concern was whether or not I was ‘good enough’ in bed for someone else. I was too nervous to ask any questions because I was scared I would look like I was ‘inexperienced’ as I felt. But now I know that I may have to be more vocal about what I need during sex, whether that’s a position change, a break to breathe and reregulate, or taking time to use my dilators before penetration. And I’m okay with that!
Asking for what you need is difficult even without a chronic illness. Still, it is so necessary for a healthy life, both inside and outside of the symbolic ‘bedroom.’ This is your reminder to set that boundary and make space for you.
5. You’re not broken
Around the time of my diagnosis, I struggled to manage my depression and anxiety and decided to pursue therapy for the first time. Not only was I dealing with the stress of a drastically changing world right after graduating college, but I was also grappling with the fact that this illness was going to be with me for the rest of my life.
Therapy has helped a lot in getting me to realize where I get stuck on harmful thoughts surrounding my illness, the most common of which being “I’m broken.” Getting myself to challenge this belief every time it pops into my brain is so hard, and to be honest, I still struggle with it! Every time something I used to eat or drink without issue causes me pain, I hear it. Every time that sex, even with modifications, triggers pain, I hear it. Every time I have to take a week or more off work because I’m in too much pain to function, I hear it. I hear it in every deadline I have to extend, in the plans with friends I have to cancel…it’s loud and annoying, but most importantly, IT IS NOT TRUE!
Without therapy and supportive family members, I don’t think I’d be as comfortable confronting the negative thoughts I have about myself and my illness. If therapy isn’t an option, I recommend finding friends you feel comfortable confiding in or trying to find a support group so that you don’t get stuck alone when the negative thoughts and emotions creep in.
It’s not true for me, and it is certainly not true for anyone else struggling with a chronic illness, mental or physical. We are still 100% a whole person, no matter how much we’ve changed in the last week, month, or year.
Now say it with me… I am not broken.