Lar's Endometriosis Story
My endo story takes me back to some of the scariest, most painful moments of my life. But one way that I was able to self-diagnose, find the best endo surgeon and not feel as alone, was reading other women’s endometriosis stories online. Cath and I want to share our stories because if they can help others navigate this bewildering disease in return, that makes the retelling so very worthwhile.
I have clear memories of painful periods that punctuate important moments in my life. When I was 16, intense cramps woke me up at 4am on the day I had an important ballet audition. I was away from home and my parents, in an unfamiliar hotel room in the middle of Michigan. I pulled myself out of bed and paced the room for 3 hours because I knew I still had to do the audition -- my parents had spent so much on the program and I was determined to be a professional dancer. I wasn’t going to let any level of pain stop me. So I got out of bed because I also knew that moving would help stave off inertia. I paced the hotel room for three hours, went to the audition with my pained, bloated body sheathed in a leotard and tights. I don’t remember this ever not being normal or even momentarily having the thought that I should listen to my body and rest. Pain on your period is normal and something we push through, right?
In my early 20s I worked in a bookstore and I remember one day I had such bad cramps I had to drag myself to the back room and lay down on the floor for 2 hours. My manager eventually made me go home, but driving home was difficult because the pain was so intense it would sometimes take my breath away. It was only a 15 minute drive but I had to pull over twice to let the pain subside so I wouldn’t careen into other cars on the road.
By the time I hit my late 20s, in addition to intense cramps and very heavy bleeding, I started having an intense jabbing sensation around my colon the week of my period. Sometimes it would literally take my breath away and I thought I would pass out.
Whenever I mentioned my painful symptoms to my primary care doctors or OBGYN, they told me to stay on birth control, keep taking NSAIDs and that period pain was normal and unfortunate but no big deal. When the pain shifted from the horrible cramps to the intense jabs in my pelvis, I knew this couldn’t be “normal” no matter what the doctors were telling me.
I was 27 when I walked into my gynecologist’s office and told her I had endometriosis. She didn’t really question it because she knew of my pain, but she did say that there wasn’t really anything you could do about it except for me to continue birth control and pain killers.
I continued to do my own research about endo (online and reading books) and decided I would try coming off of birth control to see if I could regulate my hormones naturally and perhaps “cure” my endo. I went on the endo diet (cutting out all refined sugar, alcohol, wheat, meat and dairy) and tried to limit any xeno-estrogens in my environment.
Unfortunately, my endometriosis was so progressed by that point that the diet and lifestyle changes didn’t really help. At the time, I had the added stress of moving to a different country and starting a new job.
By the time I was 30, my periods were so painful I had to take a lot of NSAIDs with codeine to make it through a work day. I remember riding the bus to work down at cobblestone Edinburgh street and every bump was like a knife jabbed through my pelvis. I was often holding back tears at work because the pain would sear through me while I was in meetings with clients or trying to get work done at my desk.
Another change happened around this time too. Every other month as my period started I would wake up in the middle of the night with a pain that felt like something had ruptured in my body. The first time it happened I literally thought I was dying, but I didn’t wake anyone at home because I couldn’t move off the floor. After an episode like this, I couldn’t sit, stand or walk without enormous pain for the following days. Once my period was over, the pain would eventually subside.
Apart from the pain, I was worried because I could feel a weird lump on the left side of my pelvis that didn’t feel normal. Once I convinced my OBGYN to do an ultrasound (this took months of persuasion), they found a 4-inch endometrioma on my left ovary. I was just so relieved it wasn’t cancer, I didn’t care when the ultrasound tech told me it was an endometrioma even though I had no idea what that meant.
An endometrioma is a cyst made of endometrial fluid. Unlike other cysts the women can often develop, it will not resolve in the body and must be removed by surgery. I think the pain I had every other month, was this endometrioma rupturing and reforming on my left ovary.
Before the NHS could schedule me for surgery, I had another period where I had that same explosion of pain in my pelvis, but it was worse this time. I literally could not get up off the floor all night. By the time the morning rolled around, Matt called 911 (or 999 because we were in the UK) and the EMTs came. They didn’t believe me when I told them what had happened and couldn’t understand why I couldn’t get up off the floor. They were getting ready to leave when I blurted out “I have a heart condition!” I do have a very mild murmur, but I knew they would have to take me to the ER if I mentioned it even though I knew it wasn’t the reason I was in so much pain and couldn’t stand up.
I ended up in the hospital for two weeks.
In the hospital (the Royal Infirmary in Edinburgh), the doctors first thought it might be appendicitis even after I told them about my ultrasound that showed the endometrioma on my ovary. They disregarded that. Nine hours after being admitted when I guess they decided it wasn’t appendicitis (they didn’t run any scans so I don’t know how they determined this), they sent me up to the gynecology ward. There, they first assumed I had an STD (based on what, I don’t know).
They did a pap smear which was so painful I cried out during it and the doctor looked at me like I was being overly dramatic. They didn’t find anything, but I did start shaking violently and it turns out I had a 104 degree fever. So they decided it wasn’t an STD, and they would watch me overnight.
For the next four days I had a continuous fever of 104-105 degrees and continued pain in my pelvis. They said they couldn’t operate because my fever was so high and when I demanded an ultrasound, they said it wasn’t necessary. I still don’t know why.
The fourth morning in the hospital, I woke up around 4am with searing pain across my entire abdomen. It felt like my insides were being lit on fire and my pelvis started to swell. I remember at one time crawling off the bed and laying on the floor (I wasn’t thinking straight because of the pain). There weren’t any nurses around, but one of the cleaning crew saw me on the floor and went to get a nurse.
The nurse made me get back on the bed and I started shaking violently because of the pain -- I couldn’t control my body at all and was in so much pain I remember thinking “I can’t do this, I think I need to die.” Maybe a half hour later, a doctor came by and gave me morphine and the pain subsided, but my pelvis had bloated so much, I looked about 7 months pregnant.
At that point, they finally decided that I should have an ultrasound.
The ultrasound showed that my endometrioma had ruptured (probably the day we called 999) and the burning feeling in pelvis and bloating was my body pulling 500ml of fluid into my pelvis as a result. My fever was from my body trying to fight the ruptured endometrioma and the sepsis that resulted.
The doctors finally thought it was time for emergency surgery (5 days after being admitted into hospital).
During surgery, they took part of my left ovary and pulled out the 500ml of fluid. Post surgery, I had more complications (a blocked intestine) and was in the hospital for eight more days.
I left the hospital two weeks after I entered, weighing only 96 pounds but so happy to be alive (see blurry photo to the right).
However, I knew that even though I no longer had an endometrioma, I still had endometriosis and I was TERRIFIED I would develop another endometrioma that would cause the same pain and another terrifying stay in the hospital.
The amount of anxiety and fear I had months following my time in the Royal Infirmary was almost worse than my pain in the hospital, but there was good that came from that. I read as much as I could about endo and what I could do about it. Through my research I found the Center for Endometriosis Care in Atlanta, Georgia. They, along with just a few other surgeons around the world, are excision specialist for endometriosis. Excision surgery (versus ablation), is the gold standard for treating endometriosis.
Six months after my emergency surgery in Scotland, I was scheduled for my second endo surgery -- this time with a specialist in Atlanta.
I will always and forever be so grateful for Dr Sinervo and his team of amazing nurses at the Center for Endometriosis Care. I’ve had almost zero period pain for five years post surgery. The excision surgery itself went very smoothly and they told me I had Stage IV endo. I didn’t have any lesions on my uterus, but a lot around my ovaries and colon/intestines. The endo around my left ovary had yanked it back and down and attached it to other organs in my body. This second surgery removed almost all of it.
Cath and I both had a complication after excision surgery. We both had infections post-surgery which was hard, especially because of the amount of antibiotics we had to take. So recovery was about a month when for most laparoscopic, excision surgery patients it’s a few days or a week at most.
However, I am still so grateful that we could afford to have that second excision surgery. I know not everyone can afford to pay for a specialist (and if Obamacare hadn’t existed, I wouldn’t have been able to either).
It’s been 5.5 years since that second surgery and I am just starting to have pain around my colon again. That area is notoriously hard to excise without damaging the bowel so it wouldn’t surprise me to know that some endometrial cells are growing again.
I’m discouraged but still so grateful that I was pain free for so long and the recurring pain is what has lead us to developing Semaine. When I take Semaine supplements before and during my period, my pain and bloating or nearly nonexistent. If I don’t take them I have about 3 days of intense pain.
In addition to taking Semaine, I’m on the NuvaRing so that I can skip my period as often as possible. I also try to follow the endo diet as closely as possible by limiting or excluding meat, dairy, wheat, sugar and alcohol -- but it’s hard to keep this up long term and I have plenty of “cheat days.” Unlike other diets where cheat days just mean you ate a few more calories, cheat days on the endo diet usually means I pay with a flare-up in pain or with my IBS (which I think is symptomatic of the endo infiltration around my intestines).
The endo diet and Semaine help me to keep my inflammation levels down in my body as much as possible, so that I have little to no pain on my period. I hope that Semaine helps other people with painful period symptoms whether you’ve had an endometriosis journey like me or any discomfort with your period that interrupts your life, leaves you anxious or just makes you feel like a less vibrant version of you.
Thank you so much for letting me share my story with you. It’s so important to me that doctors listen and believe their patients -- especially their female, non-binary, trans, POC patients who so often don’t get the same attention or care that their male, white counterparts do.
I am not an unusual or isolated case. Everyone with endo has a different story to tell, some much more harrowing than my own. The conservative estimate is that 1 in 10 women have endometriosis, and 80% of women will have painful periods in their lifetime. This is my daily motivation to make Semaine available to any person who could benefit from it and feels neglected in their pain.