Living with Endometriosis: A Patient's Perspective

In this podcast, Kate O'Keefe, a 40-year-old woman with endometriosis, talks about her journey with endometriosis. She answers questions on how she manages the chronic disease, how endometriosis changed her life, and what many patients want clinicians to know about patients with endometriosis.

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Kate O'Keefe is the Vice President of Advancement at Family Promise of Grand Rapids. She was diagnosed with endometriosis at 27 years of age. Kate lives with her husband, Patrick, and their dog, Pilot, in Grand Rapids, MI.

TRANSCRIPTION: 

Jessica Ganga: Hello everyone, and welcome to another installment of Podcasts360, your go-to resource for medical news and clinical updates. I'm your host, Jessica Ganga, with Consultant360, a multidisciplinary medical information network, along with your moderator, Jessica Bard. Endometriosis can affect more than 11% of women in the United States between the ages of 15 and 44 years, with most women being diagnosed in their 30s and 40s, according to the US Department of Health and Human Services Office on Women's Health. Here with us today to talk about endometriosis from a patient's perspective is Kate O'Keefe. Kate was diagnosed with endometriosis at 27 years old after years of pain and not knowing its cause. Now 40 years old, Kate shares her journey through living with endometriosis. Let's listen in.

Jessica Bard: Let's get into endometriosis now. Tell us about your journey with endometriosis, really take us from the very beginning and how has it impacted your life?

Kate O'Keefe: Endometriosis has completely changed my life probably most drastically due to the fact that I wasn't able to have children naturally. I think the second most major impact I've seen having this disease, is I have a disease that's not seen. So, my friends and my family, and my coworkers don't always understand that I had lived in daily pain. It was constantly learning how to manage my pain and it was anything from going to a family barbecue, or a weekend getaway with my husband and really just feeling like crap, and trying to figure out how to navigate my own life, but also relationships with a disease that's unseen.

So, I started having symptoms at a very young age. In my teens, I was experiencing extreme pain when I had my period. I was 16, 17 years old, I didn't know what was normal. My mom didn't really know if what was happening was normal. We lived in a small rural town, which probably in hindsight, they may not have had all the resources back in the day and known how to help either. So, I just started to manage, and I remember starting to manage my pain at a really early age.

I was really active in sports and that ended pretty quickly, not being able to make practice, not being able to make a game, kneeling on the floor in pain because of cramps and being like, "can't play a game tonight." So, from a really early age, endometriosis affected me. As I moved forward in my 20s, I got married young and realized pretty quickly something was wrong when it came to sex with my husband. That's one of the really difficult things about endometriosis. Sometimes there would be painful sex and I couldn't figure out what was happening. Went and talk to a doctor about it and explained my symptoms. I learned that there—again, I'm 25, 26 years old—and I remember my doctor prescribed, I think it was called lidocaine and it was a numbing gel. I had no experience with this. No one was sharing tips, or tricks, or what this could mean for my partner. I remember we tried using this to help me cope and it just ... it was a disaster. And so from a really young age, I was just learning without having a name that life was difficult.

Endometriosis really affected my gut. I struggled when I had my period. I would have just terrible bowel movement, pain with bowel movements. I couldn't eat pizza. I couldn't eat certain things, but nothing made sense. I couldn't make a case out of what happened. Finally, about 27 years old, I connected with a physician who had a hunch I might have endometriosis. Had my first laparoscopic surgery and she came out of that surgery saying it was the worst case of endometriosis she's ever seen. It was a 4 or 5 hour surgery. It was only supposed to take a couple hours, but it was double the time. In fact, my ovaries were actually twisted in a knot at the bottom of my uterus, so we just ... It was a mess. At that time, my husband and I were starting to have kids, we got ... or starting to think about having kids. We're getting really excited. We were told, "You just had a surgery. Now's the time." And so we started down that road.

Kate O'Keefe: As I fast forward, 10, 15 years later, I had a total of 4 surgeries. And at one point my doctor just looked at me and said, "Kate, I just don't think it's going to happen for you." She said, "The environment in your uterus and cervix, is just not ... I think even if you get pregnant," she said, "I don't know if you would be able to carry a child. It's just a mess in there." That's when we started talking about a hysterectomy. So at this point, I would've been 39. It was the first time I've heard that word, so I was really scared. I was not open to a hysterectomy at first. I had my period for a year, in fact, when I was 39. Every day, I had a period. Every day I had cramps, every day I had pain, indigestion, heartburn. I just decided that this is no way to live and so if a hysterectomy could do anything, I think I got to a place where I was like, "I'm willing to try it."

Well, that changed my life. A hysterectomy completely changed my life. I'm 40 years old today. Actually, [I] must have had my hysterectomy when I was 38, been 2 years since. I have a new lease on life. I go on weekend trips and I don't have to pack everything under the sun. I don't have pain. I don't have pain during bowel movements or if we're having sex. I don't have a period. It's just been fantastic, to be quite honest. So, that's my journey from about 16 to 38, I had a disease and it really affected my life.

Jessica Bard: Oftentimes pain for women, particularly on their period, can be normalized. Not knowing if your pain was quote unquote "normal" and then actually going through finding out that you have endometriosis, finding out that it's the worst case your doctor had seen, not being able to have children naturally. Take us through what, from a patient's perspective, all of those feelings for you. I can imagine it was extremely difficult.

Kate O'Keefe: It was. The first thing that pops into my mind when you asked me that question, it brought me back to the days of questioning myself. I heard from a lot of doctors that I had stress and I wasn't able to manage it. I knew it wasn't stress. I had pain and I wasn't believed. As a woman, I was not heard. I was not sat down with and said, "You've got a problem. Let's figure it out." It was, "Try some birth control, probably try to manage your pain, maybe eat a little healthier." And we're talking about a chronic disease that I had and was told for about 10 years to just ... "Figure it out. Here's a little medication." So, just trying to manage that disease live through it, understand it. I learned my own body. I became my own advocate. I started trying different things, but mostly when I look back on that time, I think I wasn't believed and I needed help. I needed somebody to step in and believe me.

Jessica Bard: So, now that you've entered the healthcare system, take us through that journey. What was that like for you? What was the experience like for you with the healthcare system?

Kate O'Keefe: Yeah, I think when it comes to endometriosis as a patient, I've read several times that it takes about 10 years for someone to be diagnosed. I just want to pause on that because when we think about having chronic pain every day and 10 years before a diagnosis comes. So, when I finally was diagnosed, I had a woman physician, that same woman who did the surgery. And she did believe me, she started saying ... We tried a couple things and right away, she was like, "Kate, I think we need to do surgery." I was relieved that I was heard. I was relieved that a physician was going to take time with me to start talking with me.

When I think about my interactions with the medical system, the first little bit was rough. The second half was better. I felt like I connected with physicians who heard me, who believed me, who were curious, who wanted to learn more about this disease with me, would ask questions. And that's really, really empowering as a patient. When a person—specifically a woman—comes in and presents with pain, most people aren't trying to take advantage of things. They just really have pain. So to be heard, to be believed, and to start getting some care, was priceless. I often think of my 16-year-old self and I wonder, if I would've talked to the right doctor, could they have done something that may have allowed my body to experience less trauma and maybe would've led me to a journey of motherhood? I think if I could had a surgery a little bit earlier or maybe managed some of the trauma inside of my uterus, maybe that would've been a reality for me, but it wasn't.

Jessica Bard: I'm sure that's a painful thought.

Kate O'Keefe: Yeah.

Jessica Bard: Is there something that you wish that the healthcare system would improve on, looking back?

Kate O'Keefe: Ooh, that's a great question. Well, I'll tell you my first thing, is to believe women when they say they have pain, especially women of color. I know as a white woman myself, having walked this journey, I have friends who are women of color who have a completely different experience and are not believed when it comes to the pain that they experience. So, I just want to be really transparent and vulnerable about that fact. Other things I wish that the medical system, or physicians, or PAs would've asked me along the way, or done differently. One of the things after having 4 surgeries—I was on my last surgery—I was connected with a physical therapist who does pelvic floor therapy, and that was life changing for me. I don't want to even minimize that. That was life changing for me. I had trauma in my belly and in my abdomen and nobody had ever done any physical therapy or worked through some issues that come after surgery.

You think of other surgeries, everybody gets that, right? That's a natural. You have knee surgery, hip surgery, everybody has physical therapy. I had 4 surgeries and I didn't have anything. So, connecting me to a physical therapist for pelvic floor therapy was life changing. So, I wish somebody would've done that and I think just more quickly on the journey, having resources and helping me understand what endometriosis really is. I, myself, I advocated for mental health services. So I connected to therapists pretty quickly, but those 2 fields seem very disconnected in my journey, but talking ... If there's physicians listening today, I needed to hear from them what this disease looks like long term. I needed to hear from them that my mental health was also impacted by this. I needed more support from the physicians around me. And you think of a 25-year-old woman, new disease, newly married. What does that look like for her and all those women who were yet to be diagnosed? Sitting down and really helping us understand what it means to have a chronic disease and to live with that.

Jessica Bard: Sounds like pelvic floor therapy was probably a high point. Is there any other high points in your journey with the healthcare system that you would do again, double down on?

Kate O'Keefe: I'm actually connected to a physician assistant right now who's my gyn. And one of the things I love about being her patient is she's curious. She's curious, she just asks questions. We talk about different things, I feel heard. Other high points, I'm not sure if this is great for the podcast, but I ... and I'm not sure this is everybody's end journey, but that hysterectomy was life changing for me. I'm so grateful to the physician who just said, "This isn't normal and something could be different." Those are some of the things that stick out to me, about high points.

Jessica Bard: Sure. From a patient's perspective, what do you want clinicians to know when managing patients with endometriosis?

Kate O'Keefe: I'm going to sound like a broken record here.

Jessica Bard: That's okay.

Kate O'Keefe: Yeah, just speaking from my own perspective, better understanding, making sure you're hearing your patients being proactive. I needed somebody to follow up with me. I needed more information about chronic pain in endometriosis. Endometriosis doesn't just affect the patient, it affects my relationships. I go back to the beginning of our conversation. My friends and my family and my husband, whether they know it or not, have all been deeply affected by this disease. There are times where I didn't show up. There are times where I couldn't show up. I wasn't myself, I was frustrated. Managing intimacy between my husband and I, and figuring out what that looks like, I have acquaintances whose marriage just crumpled because they had endometriosis, think about that. A disease where you're physically affected and also, relationships are affected. So, those things are real and they need to be taken into consideration. People have lasting effects, right?

Jessica Bard: Absolutely. Well, thank you so much for sharing your experience with us. Is there anything else that you'd like to add, do you think?

Kate O'Keefe: I touched on this a little earlier, but I think growing up in a rural area where we didn't have big healthcare systems, it was just 1 small doctor's office. I don't mean to make that not small and not to belittle anything, but when you're in a rural community and there aren't as many resources ... and to any physicians, I want to just say to any physicians who are listening, who may be in those smaller rural communities, to advocate for patients, to ask those questions. Endometriosis is, there's 5 different signs, and to ask those questions to patients, I didn't know, my family didn't know. So, just hopefully, physicians feel empowered to advocate for their clients when it comes to endometriosis.

Jessica Bard: Well Kate, thank you again for your time. I'm really happy you were able to get some answers and have a new lease on life. Thank you again for sharing your experience.

Kate O'Keefe: Thanks so much for the opportunity.