Real Talk: Vaginal Pain with Noa Fleischacker of Tight Lipped

Vulvovaginal pain conditions like pain with sex will impact 3 out of every 4 women at some point in their lives. Unfortunately, we live in a society where talking about sex in any context can open us up to being judged, disrespected, dismissed, or worse — even if that conversation is happening in a doctor's office. Which is why we do what we do at Origin, and why the voices of advocates like Noa Fleishacker, Executive Director of Tight Lipped, need to be amplified to the max.

As part of Origin's Real Talk series, we're excited to share the incredible conversation we had with Noa about her own experience with vulvovaginal pain and why she's so passionate about creating a community where anyone with pelvic pain can be heard and get the help they need. Watch the video or read the full transcript below.

Hi, Noa! Tell us a little bit about yourself and Tight Lipped.

I'm Noa Fleischacker, the Executive Director of Tight Lipped. Tight Lipped is a storytelling and advocacy organization by and for people with pelvic and volvovaginal pain conditions. We came together a couple of years ago to bring awareness to these conditions, break down stigma, and talk about what it's like to have a vulvovaginal pelvic pain condition.

We're focused on changing how the healthcare system treats people with these conditions so that people can better access diagnosis, treatment, and generally get the care that they need.

When did you realize you had a vulvovaginal pain issue?

I could never use tampons, trying to put in a tampon just felt like actually impossible. I was like, where is this supposed to go? And when I first went in to get a pelvic exam, they couldn't even do it.

What did this pain feel like for you?

When I would take dance classes, I had these really intense teachers who would make you do the splits and then push you while you were in the splits to try to stretch you even further. And it's that feeling that you're like, I don't think my body is supposed to do that, like that pain. It feels unnatural and it feels like this kind of burning, stretch feeling or stinging feeling, and that's what pelvic exams felt like for me. That's what sex felt like for me.

How did you GYN address your pain?

When I first tried to get a pelvic exam, the doctor said to me, You're just nervous. You'll calm down, and once you're calm, we'll be able to do the pelvic exam. She actually prescribed sedatives because she was like, we, if we can get rid of your nervousness, we'll be able to do the exam. That didn't work at all for me, and ultimately she said I needed to go under general anesthesia in order to get my exam because it was impossible to do my exam while awake.

There was no point during that process of trying to get through my first pelvic exam where she stopped and said, wait a second. This is not supposed to be this painful. Let's figure out what's really going on.

Why do you think pelvic pain is so often ignored?

You have this kind of pain. And the people you tell, whether they're your friends or your family or even your doctor are kind of like, Oh, are you sure? Maybe you're just nervous. Maybe if you just calm down... The worst, worst medical advice I've ever heard: Maybe if you just drink a glass of wine and calm down... Things that really dismiss people and also make it seem like whatever you have is all in your head. It's something that if you can just kind of overcome it, it will go away.

And so I think that leads a lot of us to put up with these symptoms for a lot longer than we should. For years, for decades. I mean, I've met patients who have had vulvovaginal or pelvic pain for literal decades and since no one told them this is a real condition, they just kept going.

What are some surprising symptoms of vulvovaginal pain?

There's a whole range of symptoms that we talk about. My personal experience is that I have pain with insertion or penetration, but I also have low back pain and I also have tailbone pain. And for a lot of people in our community, they could have spontaneous pain, right? They could just be walking around in the middle of the day and feel like a stabbing feeling or an electric shock feeling in their vulva.

And then there are folks who have pain with wearing tight pants or sitting for long periods of time. And then these experiences where people will feel like, oh, it's just a UTI or it's a yeast infection, and will get diagnosed with a UTI or a yeast infection over and over and over again when, actually, they don't have a UTI or a yeast infection; they have a chronic pain condition.

We've said it before and we'll keep on saying it: Pain is never normal.

I think a lot of people kind of accept their symptoms at a certain point as like, Okay. I guess this is just life, I guess this feeling or the pain is something normal. I was actually just talking to a community member who was telling me how she didn't even realize she had pain. She thought, Okay, what? What's happening when I have sex? That's just like, what sex is? What's happening when I try to put a tampon in, that's just putting in a tampon. I'm in extreme pain during my period, but periods are supposed to be painful.

She even had constipation. She thought that her bowels were moving just normally. She thought everything that was going on was just like part of life until she went to pelvic floor physical therapy and the pelvic floor physical therapist actually took a comprehensive history and went through and asked her all these questions.

It was like a light bulb moment for her. And when she ultimately had pelvic floor physical therapy she said it was the first time she realized she'd been in pain for all those years because she didn't know what it was like to be pain-free. And so then she realized, wait, I actually am in pain all the time, but she didn't know it, which I think is actually a pretty common experience, especially for people who have all these different symptoms that they just haven't like put the full picture together yet.

How did pelvic floor physical therapy help you?

I know for me, when I first went to pelvic floor physical therapy, the thing that was most striking is they would say things to me like, try pulling in your muscles, try releasing your muscles.

They would use this language, and I would be like, am I doing it or not? I actually couldn't tell whether I was clenched or whether I was released. I just had no idea. And so a huge part of physical therapy for me at the beginning was learning about my own body and process of realizing I am clenching my pelvic floor all day long, all the time. But I had no idea because that was just what normal felt like for me.

And so now it's still, it's a work in progress. But I have that awareness. I'll be sitting and realizing... I think I even just now, right? I think I just spent the last five hours clenching my pelvic floor and I had no idea.

Literally right now. I just realized that because I'm talking about it.

Let's keep talking about it! Book a visit with an Origin pelvic floor physical therapist to discuss your pelvic pain symptoms and consider joining the Tight Lipped community to get and give support.