What I Wish I Knew: Endometriosis
Kate March is a performer, painter, poet, endometriosis warrior and advocate. Earlier this summer, we stumbled onto an art piece Kate made that incorporated a Knix Every Bodysuit. We fell in love instantly, and knew we wanted to learn more about her art and process. We learned that the bodysuit had become a special piece of history for her, as it relayed a personal moment of attempting to push through the isolation and loneliness she was feeling at the time.
Through learning about the piece, Kate also told us about her experience with endometriosis. We asked her to talk about her journey, what it’s taught her, how Leakproof plays a role in her recovery, and how she finds her strength. Meet Kate.
It’s been a weird summer. First and foremost, I have been trying to stay sane during a pandemic by taking long walks in nature. Though quite honestly, I have been mostly focused on the process of IVF. TMI?? I have severe and aggressive endometriosis.
I think in order to share the entire breadth of my journey with endometriosis, it would take several books. Suffice to say, living with endometriosis has been my biggest test of strength and endurance by far. I pretty much have had to understand what severe pain is from my first period. The excruciating cramps, agonizing back pain and referred pain in various other body areas has quite literally brought me to my knees. I've passed out on the street more than once from being suddenly debilitated. I've projectile vomited as a bodily response to the level of pain. My hands have gone numb with anxiety because of such all consuming agony. I get migraines that last for 3-4 days without relief.
I always understood I most likely had endometriosis because of the genetic aspect of the disease and my mom's own struggle with it. But I wasn't officially diagnosed until I was 30 years old— so I had lived with it for 17 years without genuine concern or help from doctors. You can only really get a diagnosis from a laparoscopic surgery by a specialist who is truly familiar with the disease.
The first surgery I had was to remove a giant ovarian cyst which was entirely made up of endometriosis tissue (an endometrioma). Since that surgery I've had 3 other laparoscopic surgeries specifically to deal with my aggressive endometriosis. I finally found a doctor and surgeon who is actively trying to help me feel better. Having a health professional and supportive medical team you trust helps the recovery and overall health maintenance.
Unfortunately, as a result of how fast and ruthlessly endometriosis grows in my body, I have had an additional 3 related surgeries for appendicitis and kidney stone - which all my doctors seem to agree were most likely the result of endometriosis scarring, lesions, or adhesions disrupting my body's normal health. Seven surgeries and I'm only 35.
Recently, I had to reckon with the fact that my body would not conceive naturally and so my husband and I opted for IVF. Between the insane amount of hormones being pumped into you and their side effects; the constant monitoring and probing of your body; the failed embryo transfer attempts; and the related cascade of anxiety, stress, and sadness — I quickly became aware that endometriosis had led me to another draining and intense process in IVF.
One of the aforementioned laparoscopic surgeries had to happen this past month after my IVF doctor realized I had fluid building in my fallopian tube which was negatively impacting the ability for implantation to occur. Both my tubes were removed because of how much damage they had from endometriosis. IVF Is the only way forward if we want a child.
Endometriosis makes me angry. It has robbed me of A LOT of joy, comfort, activities and normalcy. Even, and more aptly especially, as someone who relies on their physicality for their livelihood, endometriosis has made me feel betrayed by my own body. But after all that I have gone through, endometriosis has taught me of my own resilience, strength, stamina and the power of hope in healing. Every time I've felt at my worst, I have ultimately come out the other side feeling even stronger physically and mentally. It has opened my eyes to the deep inequalities women face in the healthcare system. Having a relentless disease like this doesn't define me, but it certainly has gifted me fearlessness and a deeper sense of instinct. If something feels wrong to you, don't question it, find medical help and don't stop until someone really listens.
Make sure you read about other people's experiences and educate yourself about the symptoms of endometriosis. Know that having an extremely painful period is not okay; having bad pelvic pain at other times of your cycle is not okay either. Get regular health check ups and find an OB-GYN that listens to you and takes your pain seriously. Try to find sources of comfort you can rely on in times of pain or stress. For me, foot reflexology has been something I rely on to feel good. I don't drink a lot of alcohol because I know it makes me feel worse. Other people find a vegetarian diet or specific foods offer relief over time. I've started acupuncture with the hope that it will aid in blood flow and help lessen the anxiety that occurs at certain times of the month in anticipation of pain.
The pain during my period can be all consuming. There is no way that sticking a tampon in feels comfortable— so I also find comfort in wearing Leakproof Underwear too. When I first tried them it changed my period routine completely. Now when I know my period is coming, I've got a system. I get my Leakproof panties all ready to go and I don't get anxiety about the discomfort of shoving anything in an area that already feels extremely sensitive. I feel comfortable even on my heavy flow days wearing Super Leakproof panties for hours and hours. Not having to worry about changing a tampon or pad or being distracted by the prospect of a leak, allows me to totally focus on finding comfort (heating pad, resting, yoga stretching).
I've also found Leakproof Underwear to be perfect post-surgery. After waking up and trying to heal from surgery, when you want to feel as unencumbered as possible and are most likely bleeding a little bit, it's perfect to have these in your arsenal! Leakproof helps to give some sense of ease in an uneasy time when you have endometriosis (or adenomysosis, or other women's health conditions that are associated with pain/heavy bleeding).
Through all of my advice, my main point here is that not every journey with endometriosis is the same. Many women find long lasting relief from 1 laparoscopic excision surgery. Many women feel a huge impact from a combination of pain medication, being on birth control, and incessant heating pad use! Lots of women find therapy and meditation helps them overcome extreme flare ups and also helps deal with the emotional effects of the disease.
The most important thing is to find what works for you and know that endometriosis isn't a one size fits all disease and likewise, the treatments will differ from one individual to another. Just know you're a badass and if you can handle all that comes with endo, you are a freaking warrior who can literally handle anything.