As I march ever closer to turning 40, I am often struck by how life can unfold—how beautiful and completely unexpected it can be at any moment. I never could have imagined that I--an actor, singer, massage therapist and intuitive energy healer--would be diagnosed with and later publicly sharing my journey with endometriosis, a disease where the endometrial tissue appears outside the uterus and usually causes severe pelvic pain and other uncomfortable symptoms. Research suggests that as many as one million women in the United States—about one in ten of reproductive age—have the condition, yet most people and even many medical professionals are not familiar with it or just dismiss it as “women’s troubles.” Only recently did I receive treatment for endo that makes me hopeful that I can enjoy a much-improved quality of life and, perhaps, even a longer one. I am sharing my story as a newly minted #endowarrior in hopes that it will help others avoid years of pain, procedures, testing, misdiagnoses, and additional disease.
I don’t remember much about my first period other than I was 12 and it was very painful--a weird kind of pain I had never experienced before. It made me weak, exhausted, and somewhat nauseous. I knew cramps were normal and turned to over-the-counter medications without hesitation. This marked the start of a decades-long search for a painkiller cocktail holy grail, and I was fully committed to my quest.
Inevitably, I’d be in pain during the biggest social event of each month where I’d try to discreetly discover what some of the older woman there did to relieve their period pain. Then the experiments began: Gina’s sister takes two Tylenol every six hours—nope, not strong enough. Lauren’s aunt’s neighbor takes two Midol twice a day—nope, way too slow-acting. If I could just find the correct medication and dosage to take at the correct intervals, I would be just like my friends and the other women in my life who seemed to function fairly normally when they had their periods. They must have all found their perfect painkiller cocktail!
Eventually, I arrived at Advil and then Aleve as my ultimate drugs of choice. While they worked better for me than any of the other over-the-counter pain killers, they were still only about 65 percent effective at best. I tried to accept this as the solution. After all, I only needed the Aleve for two-and-a-half days, max, a month. It basically got me through high school.
If my relentless and only partially unsuccessful experiments with every over-the-counter pain killer weren’t enough to tip me off that something was wrong, a wakeup call came first semester of my freshman year of college. My period pain reached a new level, and I fainted in the shower. A nice, unsuspecting girl found me lying on the shower floor. This was definitely beyond the RA’s purview! He called the paramedics, and an ambulance took me to the hospital. There, I was given some prescription painkillers, and it was determined that I had had a vasovagal episode, a loss of consciousness when your blood pressure plummets. Some people have them when they see something particularly gory. This one was due to pain. My mom’s take on it was “Oh, I think Uncle Jay gets those too! Must be hereditary.”
After college, I developed one of my most persistent and perplexing symptoms: an extremely intense and unrelenting desire to teethe—akin to the feeling of a new tooth breaking through the gum--where my wisdom teeth used to be whenever I was hormonal. At first, this was primarily during my period but fast forward to years later, and it was virtually all the time. Dentist after dentist was at a loss and, aside from a prescription mouthwash which helped a bit, I endured it through sheer will and occasionally by chewing on a self-sanitized pen cap!
By the time I was in my early 30s, I had seen a few gynecologists—all of whom advised me to try birth control. I was hesitant to try birth control because of the studies which suggest it is linked to cancer and the idea of flooding the body with synthetic hormones also never made sense to me. So instead, I begged them for the strongest painkillers they could legally prescribe. I quickly learned, however, that these prescription painkillers would almost always knock me out for the entire day, so they became my emergency solution which I resorted to a couple of times a year. The Aleve no longer worked as directed. I didn’t see any alternative course of action other than to increase the number of over-the-counter pills and the frequency with which I took them. I needed three Aleve every three to four hours to get through the beginning of my period. I knew this was dangerous and unsustainable so I relented—I got an IUD.
The insertion was some of the most pain I had ever experienced, and it took me awhile to recover from it. It did bring me some relief—the same level of relief that Aleve used to bring me in the beginning—so I kept it in for two years and went back to a normal level of Aleve. After a while though, I started noticing weird hormonal symptoms. Since things seemed stable enough, I had the IUD removed. Removal pain was similar to insertion pain.
I was now in my mid-30s and my massage business was growing exponentially faster than my capabilities as a new business owner. I didn’t have the knowledge, resources, or skill set to manage it effectively. I was extremely stressed trying to figure out how to run a business while doing most of the actual work myself. I was also finding more success as an actor so I found myself running from one physically demanding massage to another all over New York City while simultaneously fielding calls demanding an amazing therapist come “within the hour” and trying to book one of my contractors. Then, I’d get up at 5 am the next day to stand outside in the snow with a giant heavy bag to later sit on the floor of a cramped room all day long hoping to sing eight bars of a song at an open call.
Food had always been an unhealthy coping mechanism for me during times of stress, in addition to the intense cravings I often experienced before my period. My eating habits quickly got out of control. I gained around 30 pounds which only intensified my period pain. Needing to find a better relationship with food and my body, I began seeing a nutritionist and working out several times a week. I started losing the weight. And to my shock, losing weight and being physically active really did lessen the pain! I was back to a much more manageable dose of Aleve and only needed my emergency prescription painkiller about twice a year. I remained as stable as I had ever been. And then the pandemic hit.
Because I worked in a healthcare-adjacent field, I was lucky to be in one of the first groups of the population to receive the Covid vaccine. I ended up getting all the doses I was eligible for and, while I don’t regret it, I believe it set me back to the most horrific level of pain I had ever experienced. This post Covid vaccine time also marked the beginning of some extremely uncomfortable hormonal symptoms like night sweats, headaches, insomnia, ravenous cravings, mood swings, and acne fit for a teenage boy who didn’t shower. I often couldn’t lie on my side due to extreme breast tenderness and breast cysts formed requiring frequent mammograms to monitor them.
Then, once again, my body gave me a sign I simply couldn’t ignore or endure—I began getting my period every two weeks. The first gynecologist I saw diagnosed me with a hemorrhagic ovarian cyst on my left ovary. I learned all about how the ovaries make cysts every month, but that they almost always dissolve on their own. Treatment was to monitor with another ultrasound if I continued to get my period every two weeks.
Fortunately, my period returned to its normal state for the next cycle—a predictable, considerably painful and heavy period every 28 days—and life continued on. At this point in my journey, pretty fed up with the limitations of western healthcare, I turned to holistic alternatives. Maya abdominal massage did reduce my period pain by about 40 to 50 percent if done right before my period. I’m not sure acupuncture or the herbs and supplements I was prescribed did much. My naturopath diagnosed me with estrogen-dominance, though, which seemed to tie all my symptoms together. My body was flooded with estrogen--and somehow, I needed to get rid of it to reduce my period pain and eliminate my hormonal symptoms which were more frequent and severe.
By the summer of 2021, I began spotting and having ovulation pain which was only marginally less than my period pain. Back to another gynecologist. Of all the gynecologists I had seen, he was the worst. Not only did he completely dismiss my symptoms (at this point I was used to regular people and doctors alike doubting my experience), his only solution to my problem was for me to just keep religiously getting ultrasounds to monitor the ovarian cyst on my left ovary. My wife advocated for me: “I think she might have endometriosis” to which his response was “You can’t believe everything you read on the internet.” Meanwhile, the cyst--which he believed to be a typical functional cyst--was growing, and there was now a small cyst on my right ovary. I stopped seeing him right before he suspected I had uterine cancer and insisted we biopsy my uterus in his office.
My health was now occupying a great deal of my energy although I was unaware of just how much. I booked my first theatre contract since the cyst saga started to spiral, and my symptoms got worse. This was an absolutely pivotal moment in my journey, however. Because it was a longer contract with a larger, female-heavy cast and we were divided into two houses, to say we all really got to know each others’ periods was an understatement! One day in rehearsal, one of the girls practically stumbled off stage looking weak and pale—I knew that look, and she confirmed it. She had gotten her period but she wasn’t able to take her painkiller in time.
She explained to me she had had a laparoscopic procedure which confirmed her diagnosis of endometriosis. Aside from occasionally hearing A-list celebrities come out with their diagnosis of endometriosis, this was the first time I had ever heard anyone I knew to have endo. Because the endo celebrity activists usually mentioned symptoms I didn’t have (yet) like vomiting, GI symptoms, back pain, and consistent menstrual pain without even having your period, I had quickly dismissed endometriosis as a possible diagnosis. But here was someone who presented like me. I remember walking around in a daze for a few days and then telling her I think I might also have it. I asked her how she treated it. To my surprise, she explained there really isn’t any treatment and she just lived like me—forever reliant upon and in search of her painkiller holy grail.
When this contract ended in December 2022, I resolved to see the most competent gynecologist I could find--and I did. She was a very warm, down-to-earth woman with a hugely busy, and successful practice. She determined that, not only did I still have both ovarian cysts, I also had two small fibroids. Without performing the laparoscopic procedure, she told me she was almost 100 percent sure I had endometriosis. I am so grateful she did. This was a disease that I had endured for decades without knowing what it was until now. This sent me on a deep dive about the disease, its standing in the medical community and the extremely limited and largely unsuccessful treatment options available. I learned more about the three options: ablation surgery which—at its best--only helps until the endometriosis grows back; an extremely potent new drug which I would need to stop taking after two years at which point I would need to be put into medically-induced menopause; or birth control. I went with option three.
I was shocked by the havoc that the lowest dose of estrogen birth control pills wreaked on my body after only two months. My period pain, the constant teething sensation, breast tenderness, night sweats, cravings, acne and mood swings got even worse. I cannot imagine menopause will be worse for me than what I experienced on birth control. More problematic than these hormonal symptoms, however, was the discovery that both my blood pressure and my cholesterol had shot through the roof. I was relatively in shape at this point but now I could barely resist the cravings. I suspected pretty quickly that the birth control was the culprit.
While on birth control, I was diligent about regular visits to my primary care physician, blood tests, echocardiograms, and ultrasounds of my heart, kidneys and legs. I saw a cardiologist for, among other things, a stress test. But nothing showed up on any of these diagnostic tests to explain my symptoms. I was not surprised, however, when the cardiologist told me he sees this happen to women who go on birth control “all the time.” Suddenly all the patience I didn’t even know I had over the past 26 years evaporated and turned into anger. And action.
I immediately got off the birth control though painfully aware I had now reached the end of the road of conventional treatment options—I needed to do something drastic. Even though my family, friends and healthcare colleagues knew many amazing doctors, not one of them was remotely familiar with endometriosis, let alone with treating it. My dad, a retired veterinarian, explained to me how medicine has increasingly become more specialized over the last 40 years and recommended I see an endometriosis specialist. Okay, sounds great—where do I find one? I told my mom the only people I knew that had endometriosis were my friend from my last contract and Amy Schumer. She suggested I find out who Amy Schumer saw and start there. Thank you, Instagram! He was tagged in her surgery post. I learned that Dr. Tamer Seckin, a surgeon who specialized in endometriosis, was known to fully excise all lesions laparoscopically by hand.
Even though both Amy Schumer and the late Crocodile Hunter Steve Irwin’s daughter Bindi had surgery with Dr. Seckin, I wanted at least a second opinion. I was surprised but not shocked to learn that I was looking at a very small pool of people who can perform this surgery—a handful of people in this country, and probably another handful throughout the world. Adding insult to injury, my search revealed that medical insurance does not cover excision surgery for endo. I’m not sure I can effectively describe how I felt about the implications of this situation but I also believe I was guided here for a reason. Once I accepted the reality of my limited options and the fact that I was beyond fortunate enough to have access to the viscerally jaw-dropping cost of the surgery I needed, it was an easy decision to go with Dr. Seckin.
The ultrasound in the initial visit—probably my 10th in two years at this point--reconfirmed both cysts and two or maybe three fibroids. Next step was an MRI. I was leaving for another contract in four days which was in New Jersey so I could get back to Manhattan for this on a day off. It felt like a very responsible, reasonable plan and I was thrilled to immerse myself in the creative process of rehearsal and not focus on cysts, hormones and endo.
What I did not account for, however, was the fact that I was still detoxing from the birth control during this contract. I had some pain and consistent tenderness on my left side where that cyst was located when I got my period and ovulated. I could feel the cyst if I coughed and, for a few nights, I couldn’t lie on my left side. I was still monitoring my high blood pressure when I woke up and before I went to bed. I was terrified the cyst would rupture before I could get surgery. If it did, I would then need immediate emergency intervention. So I wrote down “3.4 cm cyst on my left ovary” on my medical information sheet for the theatre, made sure my understudy felt fully comfortable and advocated for my physical needs where I felt it was needed. Thankfully, this was not a physical track for me and I was surrounded by a wonderfully supportive company whom I fully trusted.
The MRI—a particularly unpleasant one—only revealed that two uterine ligaments were unusually thick which the radiologist marked down as “suggestive of endometriosis.” Not exactly a confident diagnosis but enough to stay the course. I booked the only surgery date available that could possibly allow me enough recovery time before my next contract one day while backstage in the dressing room during Act II.
The treatment plan for the surgery itself was complex, and it took a very lengthy discussion with Dr. Seckin’s partner Dr. Chu, my dad and my wife to determine the most effective version of it. At this point, we knew I had three or four large fibroids that needed to be removed along with the left ovarian cyst--and any endo lesions they might find. But we were all pleasantly surprised to learn through imaging that the right ovarian cyst had disappeared!
Prepping for surgery was extensive, similar to prepping for a colonoscopy but less extreme. It was only at the hospital, I learned that I would need to be intubated during surgery—this is devasting news for anyone who uses their voice in a professional capacity because intubation can cause permanent damage to your vocal cords. The lovely anesthesiologist assured me she had intubated several famous opera singers from The Met and would be very careful. My career was now in the hands of someone I met only an hour before surgery! After one last vasovagal episode where my blood pressure dropped to 70/40, I then lay down on an operating table in a freezing room with piercing lights surrounded by more instruments than I had ever seen. But I had a team of some of the most respected and experienced surgeons in the world in there with me.
I woke up in recovery and quickly learned I’d be spending the night because they had to suspend my ovaries in order to prevent scar tissue from forming—something we knew was a distant possibility but had virtually ruled out as actually going to happen. My mom rushed in and relieved my wife while I lay on my back with devices suspending my ovaries (I opted not to look at whatever these could be), a urinary catheter and a giant ballooned stomach that didn’t feel like mine—you are inflated with carbon dioxide so they can see what they are doing in your abdominal cavity.
The first four days at home were rough in terms of my limitations but, ironically, the pain was nowhere near my previous period pain. I downgraded to extra-strength Tylenol pretty quickly. After the first week, I was fully ambulatory and no longer needed assistance. My first period was horrible as expected but now I am over a month out and the two small incisions in my abdomen are healing well. The acne and night sweats were the worst they had ever been by a longshot for the first few weeks while vaginal symptoms I didn’t even realize I had until I no longer had them immediately disappeared! And, for the first time since I was at least 22, my gum teething sensation has lessened by at least 50 percent!
The pathology report found three to four fibroids, and--out of the potential 18 endometriosis lesions they removed--five tested positive for endo. Well technically, three were classified as endometriosis while the remaining two were various types of tissue with “features suggestive of endometriosis.” But the left ovarian cyst was classified as a mucinous cystadenoma with calcifications which, while currently benign, is “recognized as a precursor of ovarian cancer and may slowly transform to borderline tumors and invasive ovarian cancer.” I would be lying if I said this news hasn’t profoundly affected me: five—well technically, three full and two partial--almost invisible lesions less than two centimeters each upended my life in numerous ways I never could have anticipated. I am still cycling through many stages of emotional processing but, at the end of the day, I am holding onto the fact that we all have these kinds of potential medical vulnerabilities--whether we know about them or not. And at least this one has now been removed.
For the first time in my life, I now have a confirmed clean reproductive system. This chance to start a new chapter of life is not lost on me. I often find myself overwhelmed with gratitude for the possibilities that now exist for me--the social events I won’t have to cancel, the professional, creative and service opportunities I can develop, and the relationships I can better cultivate. But mostly, I am overcome by my potential to completely participate in every moment in a way I’m not sure I ever have ever been able to. In short, to live fully in the present.
However, I am also doing my best to maintain realistic expectations for life after surgery. But will I have more energy and need less sleep? Will insatiable food cravings no longer control me and finally subside enough so I can consistently maintain a comfortable weight? Will my gum teething now be gone for good? Time will tell and, in the meantime, I’ll be gratefully learning what it’s like to simply exist in each moment.
OPTIONAL ENDING- I remain so thankful to those celebrities who are raising their voices and using their platforms to promote awareness of this still relatively unknown disease. I am not a famous comedian or daughter of a world-renowned wildlife expert but I feel a tremendous responsibility to share my story now that I am lucky enough to have this chance at a fresh start. I hope that hearing about my experience will reassure you/my fellow endowarriors that you are not alone and that you, too, can find out what it’s like to finally live life to the fullest.
I don’t remember much about my first period other than I was 12 and it was very painful--a weird kind of pain I had never experienced before. It made me weak, exhausted, and somewhat nauseous. I knew cramps were normal and turned to over-the-counter medications without hesitation. This marked the start of a decades-long search for a painkiller cocktail holy grail, and I was fully committed to my quest.
Inevitably, I’d be in pain during the biggest social event of each month where I’d try to discreetly discover what some of the older woman there did to relieve their period pain. Then the experiments began: Gina’s sister takes two Tylenol every six hours—nope, not strong enough. Lauren’s aunt’s neighbor takes two Midol twice a day—nope, way too slow-acting. If I could just find the correct medication and dosage to take at the correct intervals, I would be just like my friends and the other women in my life who seemed to function fairly normally when they had their periods. They must have all found their perfect painkiller cocktail!
Eventually, I arrived at Advil and then Aleve as my ultimate drugs of choice. While they worked better for me than any of the other over-the-counter pain killers, they were still only about 65 percent effective at best. I tried to accept this as the solution. After all, I only needed the Aleve for two-and-a-half days, max, a month. It basically got me through high school.
If my relentless and only partially unsuccessful experiments with every over-the-counter pain killer weren’t enough to tip me off that something was wrong, a wakeup call came first semester of my freshman year of college. My period pain reached a new level, and I fainted in the shower. A nice, unsuspecting girl found me lying on the shower floor. This was definitely beyond the RA’s purview! He called the paramedics, and an ambulance took me to the hospital. There, I was given some prescription painkillers, and it was determined that I had had a vasovagal episode, a loss of consciousness when your blood pressure plummets. Some people have them when they see something particularly gory. This one was due to pain. My mom’s take on it was “Oh, I think Uncle Jay gets those too! Must be hereditary.”
After college, I developed one of my most persistent and perplexing symptoms: an extremely intense and unrelenting desire to teethe—akin to the feeling of a new tooth breaking through the gum--where my wisdom teeth used to be whenever I was hormonal. At first, this was primarily during my period but fast forward to years later, and it was virtually all the time. Dentist after dentist was at a loss and, aside from a prescription mouthwash which helped a bit, I endured it through sheer will and occasionally by chewing on a self-sanitized pen cap!
By the time I was in my early 30s, I had seen a few gynecologists—all of whom advised me to try birth control. I was hesitant to try birth control because of the studies which suggest it is linked to cancer and the idea of flooding the body with synthetic hormones also never made sense to me. So instead, I begged them for the strongest painkillers they could legally prescribe. I quickly learned, however, that these prescription painkillers would almost always knock me out for the entire day, so they became my emergency solution which I resorted to a couple of times a year. The Aleve no longer worked as directed. I didn’t see any alternative course of action other than to increase the number of over-the-counter pills and the frequency with which I took them. I needed three Aleve every three to four hours to get through the beginning of my period. I knew this was dangerous and unsustainable so I relented—I got an IUD.
The insertion was some of the most pain I had ever experienced, and it took me awhile to recover from it. It did bring me some relief—the same level of relief that Aleve used to bring me in the beginning—so I kept it in for two years and went back to a normal level of Aleve. After a while though, I started noticing weird hormonal symptoms. Since things seemed stable enough, I had the IUD removed. Removal pain was similar to insertion pain.
I was now in my mid-30s and my massage business was growing exponentially faster than my capabilities as a new business owner. I didn’t have the knowledge, resources, or skill set to manage it effectively. I was extremely stressed trying to figure out how to run a business while doing most of the actual work myself. I was also finding more success as an actor so I found myself running from one physically demanding massage to another all over New York City while simultaneously fielding calls demanding an amazing therapist come “within the hour” and trying to book one of my contractors. Then, I’d get up at 5 am the next day to stand outside in the snow with a giant heavy bag to later sit on the floor of a cramped room all day long hoping to sing eight bars of a song at an open call.
Food had always been an unhealthy coping mechanism for me during times of stress, in addition to the intense cravings I often experienced before my period. My eating habits quickly got out of control. I gained around 30 pounds which only intensified my period pain. Needing to find a better relationship with food and my body, I began seeing a nutritionist and working out several times a week. I started losing the weight. And to my shock, losing weight and being physically active really did lessen the pain! I was back to a much more manageable dose of Aleve and only needed my emergency prescription painkiller about twice a year. I remained as stable as I had ever been. And then the pandemic hit.
Because I worked in a healthcare-adjacent field, I was lucky to be in one of the first groups of the population to receive the Covid vaccine. I ended up getting all the doses I was eligible for and, while I don’t regret it, I believe it set me back to the most horrific level of pain I had ever experienced. This post Covid vaccine time also marked the beginning of some extremely uncomfortable hormonal symptoms like night sweats, headaches, insomnia, ravenous cravings, mood swings, and acne fit for a teenage boy who didn’t shower. I often couldn’t lie on my side due to extreme breast tenderness and breast cysts formed requiring frequent mammograms to monitor them.
Then, once again, my body gave me a sign I simply couldn’t ignore or endure—I began getting my period every two weeks. The first gynecologist I saw diagnosed me with a hemorrhagic ovarian cyst on my left ovary. I learned all about how the ovaries make cysts every month, but that they almost always dissolve on their own. Treatment was to monitor with another ultrasound if I continued to get my period every two weeks.
Fortunately, my period returned to its normal state for the next cycle—a predictable, considerably painful and heavy period every 28 days—and life continued on. At this point in my journey, pretty fed up with the limitations of western healthcare, I turned to holistic alternatives. Maya abdominal massage did reduce my period pain by about 40 to 50 percent if done right before my period. I’m not sure acupuncture or the herbs and supplements I was prescribed did much. My naturopath diagnosed me with estrogen-dominance, though, which seemed to tie all my symptoms together. My body was flooded with estrogen--and somehow, I needed to get rid of it to reduce my period pain and eliminate my hormonal symptoms which were more frequent and severe.
By the summer of 2021, I began spotting and having ovulation pain which was only marginally less than my period pain. Back to another gynecologist. Of all the gynecologists I had seen, he was the worst. Not only did he completely dismiss my symptoms (at this point I was used to regular people and doctors alike doubting my experience), his only solution to my problem was for me to just keep religiously getting ultrasounds to monitor the ovarian cyst on my left ovary. My wife advocated for me: “I think she might have endometriosis” to which his response was “You can’t believe everything you read on the internet.” Meanwhile, the cyst--which he believed to be a typical functional cyst--was growing, and there was now a small cyst on my right ovary. I stopped seeing him right before he suspected I had uterine cancer and insisted we biopsy my uterus in his office.
My health was now occupying a great deal of my energy although I was unaware of just how much. I booked my first theatre contract since the cyst saga started to spiral, and my symptoms got worse. This was an absolutely pivotal moment in my journey, however. Because it was a longer contract with a larger, female-heavy cast and we were divided into two houses, to say we all really got to know each others’ periods was an understatement! One day in rehearsal, one of the girls practically stumbled off stage looking weak and pale—I knew that look, and she confirmed it. She had gotten her period but she wasn’t able to take her painkiller in time.
She explained to me she had had a laparoscopic procedure which confirmed her diagnosis of endometriosis. Aside from occasionally hearing A-list celebrities come out with their diagnosis of endometriosis, this was the first time I had ever heard anyone I knew to have endo. Because the endo celebrity activists usually mentioned symptoms I didn’t have (yet) like vomiting, GI symptoms, back pain, and consistent menstrual pain without even having your period, I had quickly dismissed endometriosis as a possible diagnosis. But here was someone who presented like me. I remember walking around in a daze for a few days and then telling her I think I might also have it. I asked her how she treated it. To my surprise, she explained there really isn’t any treatment and she just lived like me—forever reliant upon and in search of her painkiller holy grail.
When this contract ended in December 2022, I resolved to see the most competent gynecologist I could find--and I did. She was a very warm, down-to-earth woman with a hugely busy, and successful practice. She determined that, not only did I still have both ovarian cysts, I also had two small fibroids. Without performing the laparoscopic procedure, she told me she was almost 100 percent sure I had endometriosis. I am so grateful she did. This was a disease that I had endured for decades without knowing what it was until now. This sent me on a deep dive about the disease, its standing in the medical community and the extremely limited and largely unsuccessful treatment options available. I learned more about the three options: ablation surgery which—at its best--only helps until the endometriosis grows back; an extremely potent new drug which I would need to stop taking after two years at which point I would need to be put into medically-induced menopause; or birth control. I went with option three.
I was shocked by the havoc that the lowest dose of estrogen birth control pills wreaked on my body after only two months. My period pain, the constant teething sensation, breast tenderness, night sweats, cravings, acne and mood swings got even worse. I cannot imagine menopause will be worse for me than what I experienced on birth control. More problematic than these hormonal symptoms, however, was the discovery that both my blood pressure and my cholesterol had shot through the roof. I was relatively in shape at this point but now I could barely resist the cravings. I suspected pretty quickly that the birth control was the culprit.
While on birth control, I was diligent about regular visits to my primary care physician, blood tests, echocardiograms, and ultrasounds of my heart, kidneys and legs. I saw a cardiologist for, among other things, a stress test. But nothing showed up on any of these diagnostic tests to explain my symptoms. I was not surprised, however, when the cardiologist told me he sees this happen to women who go on birth control “all the time.” Suddenly all the patience I didn’t even know I had over the past 26 years evaporated and turned into anger. And action.
I immediately got off the birth control though painfully aware I had now reached the end of the road of conventional treatment options—I needed to do something drastic. Even though my family, friends and healthcare colleagues knew many amazing doctors, not one of them was remotely familiar with endometriosis, let alone with treating it. My dad, a retired veterinarian, explained to me how medicine has increasingly become more specialized over the last 40 years and recommended I see an endometriosis specialist. Okay, sounds great—where do I find one? I told my mom the only people I knew that had endometriosis were my friend from my last contract and Amy Schumer. She suggested I find out who Amy Schumer saw and start there. Thank you, Instagram! He was tagged in her surgery post. I learned that Dr. Tamer Seckin, a surgeon who specialized in endometriosis, was known to fully excise all lesions laparoscopically by hand.
Even though both Amy Schumer and the late Crocodile Hunter Steve Irwin’s daughter Bindi had surgery with Dr. Seckin, I wanted at least a second opinion. I was surprised but not shocked to learn that I was looking at a very small pool of people who can perform this surgery—a handful of people in this country, and probably another handful throughout the world. Adding insult to injury, my search revealed that medical insurance does not cover excision surgery for endo. I’m not sure I can effectively describe how I felt about the implications of this situation but I also believe I was guided here for a reason. Once I accepted the reality of my limited options and the fact that I was beyond fortunate enough to have access to the viscerally jaw-dropping cost of the surgery I needed, it was an easy decision to go with Dr. Seckin.
The ultrasound in the initial visit—probably my 10th in two years at this point--reconfirmed both cysts and two or maybe three fibroids. Next step was an MRI. I was leaving for another contract in four days which was in New Jersey so I could get back to Manhattan for this on a day off. It felt like a very responsible, reasonable plan and I was thrilled to immerse myself in the creative process of rehearsal and not focus on cysts, hormones and endo.
What I did not account for, however, was the fact that I was still detoxing from the birth control during this contract. I had some pain and consistent tenderness on my left side where that cyst was located when I got my period and ovulated. I could feel the cyst if I coughed and, for a few nights, I couldn’t lie on my left side. I was still monitoring my high blood pressure when I woke up and before I went to bed. I was terrified the cyst would rupture before I could get surgery. If it did, I would then need immediate emergency intervention. So I wrote down “3.4 cm cyst on my left ovary” on my medical information sheet for the theatre, made sure my understudy felt fully comfortable and advocated for my physical needs where I felt it was needed. Thankfully, this was not a physical track for me and I was surrounded by a wonderfully supportive company whom I fully trusted.
The MRI—a particularly unpleasant one—only revealed that two uterine ligaments were unusually thick which the radiologist marked down as “suggestive of endometriosis.” Not exactly a confident diagnosis but enough to stay the course. I booked the only surgery date available that could possibly allow me enough recovery time before my next contract one day while backstage in the dressing room during Act II.
The treatment plan for the surgery itself was complex, and it took a very lengthy discussion with Dr. Seckin’s partner Dr. Chu, my dad and my wife to determine the most effective version of it. At this point, we knew I had three or four large fibroids that needed to be removed along with the left ovarian cyst--and any endo lesions they might find. But we were all pleasantly surprised to learn through imaging that the right ovarian cyst had disappeared!
Prepping for surgery was extensive, similar to prepping for a colonoscopy but less extreme. It was only at the hospital, I learned that I would need to be intubated during surgery—this is devasting news for anyone who uses their voice in a professional capacity because intubation can cause permanent damage to your vocal cords. The lovely anesthesiologist assured me she had intubated several famous opera singers from The Met and would be very careful. My career was now in the hands of someone I met only an hour before surgery! After one last vasovagal episode where my blood pressure dropped to 70/40, I then lay down on an operating table in a freezing room with piercing lights surrounded by more instruments than I had ever seen. But I had a team of some of the most respected and experienced surgeons in the world in there with me.
I woke up in recovery and quickly learned I’d be spending the night because they had to suspend my ovaries in order to prevent scar tissue from forming—something we knew was a distant possibility but had virtually ruled out as actually going to happen. My mom rushed in and relieved my wife while I lay on my back with devices suspending my ovaries (I opted not to look at whatever these could be), a urinary catheter and a giant ballooned stomach that didn’t feel like mine—you are inflated with carbon dioxide so they can see what they are doing in your abdominal cavity.
The first four days at home were rough in terms of my limitations but, ironically, the pain was nowhere near my previous period pain. I downgraded to extra-strength Tylenol pretty quickly. After the first week, I was fully ambulatory and no longer needed assistance. My first period was horrible as expected but now I am over a month out and the two small incisions in my abdomen are healing well. The acne and night sweats were the worst they had ever been by a longshot for the first few weeks while vaginal symptoms I didn’t even realize I had until I no longer had them immediately disappeared! And, for the first time since I was at least 22, my gum teething sensation has lessened by at least 50 percent!
The pathology report found three to four fibroids, and--out of the potential 18 endometriosis lesions they removed--five tested positive for endo. Well technically, three were classified as endometriosis while the remaining two were various types of tissue with “features suggestive of endometriosis.” But the left ovarian cyst was classified as a mucinous cystadenoma with calcifications which, while currently benign, is “recognized as a precursor of ovarian cancer and may slowly transform to borderline tumors and invasive ovarian cancer.” I would be lying if I said this news hasn’t profoundly affected me: five—well technically, three full and two partial--almost invisible lesions less than two centimeters each upended my life in numerous ways I never could have anticipated. I am still cycling through many stages of emotional processing but, at the end of the day, I am holding onto the fact that we all have these kinds of potential medical vulnerabilities--whether we know about them or not. And at least this one has now been removed.
For the first time in my life, I now have a confirmed clean reproductive system. This chance to start a new chapter of life is not lost on me. I often find myself overwhelmed with gratitude for the possibilities that now exist for me--the social events I won’t have to cancel, the professional, creative and service opportunities I can develop, and the relationships I can better cultivate. But mostly, I am overcome by my potential to completely participate in every moment in a way I’m not sure I ever have ever been able to. In short, to live fully in the present.
However, I am also doing my best to maintain realistic expectations for life after surgery. But will I have more energy and need less sleep? Will insatiable food cravings no longer control me and finally subside enough so I can consistently maintain a comfortable weight? Will my gum teething now be gone for good? Time will tell and, in the meantime, I’ll be gratefully learning what it’s like to simply exist in each moment.
OPTIONAL ENDING- I remain so thankful to those celebrities who are raising their voices and using their platforms to promote awareness of this still relatively unknown disease. I am not a famous comedian or daughter of a world-renowned wildlife expert but I feel a tremendous responsibility to share my story now that I am lucky enough to have this chance at a fresh start. I hope that hearing about my experience will reassure you/my fellow endowarriors that you are not alone and that you, too, can find out what it’s like to finally live life to the fullest.
