It's endometriosis awareness month.
First, here is an awesome Facebook post with some info about what Endo is and what it is not:
I'd like to write about my current cycle in honor of raising awareness.
A little personal history, for context.
I've had extreme periods since I was 17. When I started to use menstrual cups, I counted how much I bled on the first day of period over years. I normally filled my size 2 Diva Cup 3-7 times full in the first day of my period. The average person fills their cup 1-2 times full through their entire period. Along with this heavy bleeding was excruciating pain. Full body pain. I could move a toe and feel it cramp up my leg and trigger pelvic pain that felt like someone stabbing me with a knife repeatedly. I also had relentless diarrhea, which was super painful. I could sit on the toilet and feel my heart rate skyrocket to the point where I was seeing stars, seeing my vision slowly go black, and I would gasp for air. All while my body purged itself beyond my control. Yes, I've fainted from all this. I took up to 12 ibuprofen on the first day of my period for years, and it didn't work well. I kept taking more hoping for any pain relief at all. I was like this for years and years. Finally, a doctor told me my liver was in poor condition, and I admitted taking all these painkillers (and a daily Allegra D) to him - he warned me to stop because that was causing a lot of damage to my liver. So I was left with no real option for managing my allergies and pain in the conventional way. (I always refused birth control as an option for religious reasons, but also because I read all the side effects and didn't want them. Doctors did drop me because I refused birth control.)
In 2013 I started to work with a Naturopathic Doctor in New Hampshire. We did a lot of work to improve my health. By following his advice, over a few years my periods slowly became about 50% less intense. My bleeding reduced down to 1-3 full Diva cups on the first day (still heavy, but manageable.) My pain was still intense, but he made a tincture for me that actually worked. It blocked estrogen receptors, which did reduce my pain a ton, but it also knocks me out. So when I take it, I sleep for hours through the worst of my symptoms. He put me on natural progesterone and hormone-balancing herbs, which made a big difference over time too. He changed my diet, which made a big difference. My PMDD was not as long or severe, my cycles were more regular, I didn't bleed as heavily, I was more stable during my periods with less fainting issues, and my level of fatigue wasn't as strong anymore. But I stopped getting better. Everything improved about 50%, which was miraculous to me, but I stopped improving more.
In 2018 I was first diagnosed with POTS, and the next week I had a $14,000 laparoscopic surgery to look for Endometriosis. My surgeon was a local gynecologist doing the Davinci Robotic surgery. She was sure she wouldn't find endo - in fact, she was doing the surgery just to help me stop feeling convinced that I had it. She told me it would be a 30-minute surgery. She was wrong. It was 3.5 hours long, and she did find endo. She took a biopsy and confirmed it in the report, but refused to give me a "diagnosis" in my chart. Why? I don't understand that part, seriously. So when doctors see my medical records they only see the surgery, but not the result. Anyway, she removed endo from my Pouch of Douglas / Cul-De-Sac, which was probably where the majority of my pain was coming from. She also found it on my uterus and ovary. She was unable to fully remove it from my ovary without removing the whole ovary. The problem with endo is that if you don't have it fully removed, it grows right back. She also found that my uterus was tilted backwards. In the year after the surgery, my periods were the lightest they had been in my life. My pain was a little better too. But the results didn't last longer than a year.
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| After my surgery, I was still bloated from all the air they pumped into me and my scars were bruising. |
In the last few years, my periods have been slowly getting worse and worse again. My PMS has been turning back into PMDD again. My cycles are less regular. What has changed? Well, a lot of stress in my life. I've stopped using the herbs as regularly. My diet has loosened up a little. And I think, most importantly, I've been unable to have regular acupuncture treatments in the past 2.5 years. Acupuncture made a huge difference for me.
I've always had to call in sick on the first day of my period. I never improved enough to be able to work on the first day of my period. I had to miss very important events in my life because of it. And despite all the medical care I've been though, all the extremely strict diet and lifestyle changes I stuck to for years and years now, and all the praying and therapy I've tried, nothing helped enough to give me a "normal" first day of my period. It always made me so sick that was bedridden with major pain, fatigue, and vertigo for the day.
And now, for the present.
So let me talk about my current cycle, to give a glimpse into the turmoil I live with every month. I use the Clue app on my phone, and I pair with my Oura Ring. I'm not good at tracking all my symptoms, but I am very good at recording the first day of my period. So let's look at Clue for this month:
Each dot represents a tracked symptom per day. The red phase was my last period, and I only tracked for 3 days of it before I forgot. I bed 5 days, I think. The days with 2 dots are because of information my Oura Ring automatically sends to Clue: sleep and body temperature. Then the blue phase, which is ovulation, you can see extra dots. That's because I bleed dark purple thicky sticky blood for 3 days during ovulation. Then, when the 3 dots appear again, is when I started to record my PMS symptoms. I had symptoms for a few days before I started to record. I had acne, bloating, mood changes, scalp tenderness/ sensitivity, and fatigue issues, but they were not bothering me enough to think to record it. So I've had about 10 days of PMS symptoms. What does that mean for me? It means gaining a pants size in bloat, relentless hunger (even eating high protein with some extra carbs), very sensitive mood that causes me to feel everything too deeply, moments of unprovoked anger, days of irritability, feeling super anti-social, withdrawn into my head and difficult time being in reality, random cystic acne around my mouth and on my chest, ringing in my ears, deep fatigue that caffeine can't cure, nights of insomnia and then nights when I sleep 13 hours, very achy deep throbbing pain down my legs, vertigo and dizziness that makes me really unbalanced, sharp throbbing cramping all over my pelvis, feeling a bowling ball growing in weight in my pelvis, unpredictable bowel movements, throbbing aching teeth, swollen tender breasts that hurt to touch, sharp nerve pain in my breasts, inability to completely empty my bladder, and I'm sure there are symptoms I'm forgetting.
My period is late. "Late." I've had years with my average cycle lasting 30 days, and years when it was 35 days on average. I've just been in a 30 day average cycle this year, so now this looks late.
The problem with me being late is that I've had many days of symptoms that marked what should be the beginning of my bleeding: major cramping, vertigo, and fatigue followed by an improved mood. All the symptoms that tell me it's time to lay in bed with my heating pad and stop doing anything else. Except that my bleeding didn't start. I've been in this state for about 5 days now, feeling on the verge of starting my bleeding. I had two shifts at work that were difficult for me to endure, but I didn't get bad enough to have to go home sick. I was mainly concerned about fainting, so I drank lots and lots of salt and took licorice root pills to keep my blood pressure high enough.
Since I can't read my symptoms reliably, thankfully my Oura Ring gives me a clue that I can almost rely on:
(I recorded my period start day one day earlier last month, so the apps don't agree. That's because I started bleeding a tiny bit the day before, but without all the symptoms of my first cycle day. So I recorded a different day in each app to help me predict my next period.)
Ok, look at the body temp graph. The line is my baseline average body temp. Each day marks if I was higher or lower than my average. I tend to increase by a half degree to a full degree in the last 5 or 6 days of my PMS, and when I see my body temp drop below average, I'm usually ready to start bleeding. So you can see why this month is confusing: 3 days ago my temp dropped, but not below average. Yesterday it did drop below average, and I had all the symptoms that said my bleeding should start (including my breast pain going away.) But I only bled a tiny little drop all day. Ok, so today my temp was below average again. I checked my Diva cup this morning and it had a small stream of very dark black blood on the edge. I haven't bled more since then.
I called in sick to work today. I am only writing this blog because I drank enough green tea to help warm me up, and I hoped the caffeine would encourage bleeding. The reality is that I'm sitting very still at my computer to type this. I'm taking lot of breaks to breathe and rest. I'm getting really dizzy at moments. I'm getting immense pain for brief moments. There's no way I can stand up for 5 hours to do my job like this. And I won't improve until I bleed. I am in limbo. I'm unable to function until I bleed.
This is a glimpse into my reality with endometriosis. When I say it dominates my life, you can see why. I get maybe 1-2 good weeks per month where it doesn't limit me or control me.
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