My period story is wrapped up in my endo story and so it 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 think I must have been feeling some good painkillers at this point
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.