My Endo Life Part One
Spoiler Alert - The following includes my struggle with endometriosis with brief TMI moments. I'm not embarrassed anymore to discuss this. You can only retell your story so many times before discussing periods (and worse) becomes as second nature as discussing dinner ideas. Feel free to skip my story and go right to my other posts about endometriosis.
My Endo Life Part 1 - My Story
Thirteen days after my 13th birthday, I got my first period. One year and one trip to the ER later, I was diagnosed with endometriosis and I have been battling it ever since (19 years at the present).
At the age of 14, I was on birth control to ease my symptoms even though I didn't really understand what was going on in my body. The following year I refused to go back to the doctor to re-up my prescription due to the traumatizing first exam. (FYI, it is NOT true that a rectal pelvic is easier on a virgin than a traditional pelvic! I am still glad that doctor only examined me once.) So at 15 years old, I was introduced to herbal healing. My mom and I looked up supplements I could take in place of birth control pills. I took Evening Primrose Oil, St John's Wort, vitamins and I believe Red Clover Leaf. Because I was unfamiliar with natural healing, I didn't really understand how the supplements were supposed to work. I was used to "take a pill, feel better instantly, stop taking the pill." I didn't understand enough about the process, or even my condition, to understand that I needed to focus more on healing my body as a whole and less about treating a single symptom. After awhile, I stopped taking the supplements. I either thought they were down doing what I needed them to or I didn't feel like they were working. To be honest, it was so long ago that I really don't remember the reason why, I just know I stopped taking them.
By the age of 18, I knew I needed to go back to the doctor and get back on the pill. My hormones were insane around my period, I was starting to suffer from depression, and I had very heavy, very long periods. My new doctor was the absolute best. He didn't probe my butt for one, but he also took the time to really listen about what I was going through. He put me on Yasmin, which was fairly new to the market and happened to be the pill his wife was on. He worked with me over the years to treat my PMS depression and eventually diagnosed me with PMDD.
While on Yasmin, he helped me tweaked my cycle so I bled every 49 days instead of 28, taking the first 3 weeks of one pack followed by all 4 weeks of a second pack, having my period only during that 7th week. It was freaking awesome! I didn't care that my period was 9 days, it didn't happen that often. (This was also a few years before Seasonique hit the market and delaying periods was not something normally talked about in health class.) I still had horrible cramps but my periods did lighten up. Not by much, but enough for me to notice.
At the age of 22 or 23 (dates have started getting a bit blurry after so long), I had my first abnormal pap. Because my doctor was also my mother's doctor and had solid knowledge on my medical history, he decided that instead of doing another pap, he was going to do a colposcopy just to make sure I was OK. Turns out, not so OK. In those few weeks between the pap and colposcopy, the cells had morphed from abnormal to stage 1 cancer. So we scheduled me for a LEEP. Between those two procedures, they morphed to stage 2 cancer. The good news was that because I was put to sleep during my LEEP, the doctor was able to cut a little deeper and removed everything in one go. Even those I had abnormal paps a few more times, after several years of paps every 3 then every 6 months, I finally got a clean bill of health in 2008.
(Side note, yes I had cancer, but no I didn't have HPV. The number of people who assume that all cases of cervical cancer come from HPV is shocking. For me, I was genetically predisposed to it because my mom had it. And there is nothing more annoying than rude people who don't know you making assumptions about your bedroom habits. Long story short, don't be an ass and assume someone has HPV when they say they have cervical cancer. While it is passed around like a cold, not everyone gets it or gets the strains that cause cervical cancer. Stepping off my soapbox now.)
In 2009 I hit a major depression wall. I had lost my job, lost my long-term boyfriend and had moved back home with my parents. My awesome doctor had moved away not long after my LEEP, but my GP had stepped up and had been knocking it out of the park. She helped me realize that the antidepressants I had been on needed to be changed. I only took them around my period, and they turned me into a zombie. She found one that made me normal. Except I ate like a stoner. For a year, I could barely eat anything that wasn't carbs or that needed utensils. Pizza, fries, nuggets, burgers, milkshakes, I ate it all and didn't notice. I did however notice the scale creeping up. But I was too busy being high to care. Luckily my doctor noticed and actually cared.
She helped me come off my medicine and we switched me over to SAM-e to help balance my moods. This supplement was one of a few I had tested out over the years. I had taken CoQ-10 for my migraines, used garlic to heal instead of traditional antibiotics (only needed them once during this time for a case of strep I caught too late) and superfood supplements to ease the side effects of coming off the prescription antidepressants. The difference was this time a doctor told me it was OK to opt for natural healing. This changed how I viewed my relationship with my doctor and what I look for in new doctors. I realized that modern, western medicine has it's place but when you have an open-minded doctor, true healing of the entire body and not just it's symptoms can happen.
Over the next couple years, I dieted and exercised. I discovered mediation. I was beating the depression bug into the ground. I didn't lose much/any weight, but overall I was happy and only felt fat occasionally (but I have seen the photos, I was fat, there is no denying it). I got back on my feet and moved back out. But then 2011 struck and I was noticing unflattering changes to my body. I was having hot flashes, I was experiencing what can only be called "sand in your vagina" dryness and my hormones were starting to go haywire. Being on the pill for almost a decade (and probably from being mixed with the antidepressants), my body was starting to experience a false menopause. I still had a period, but I was right there with my mom going through The Change. So my doctor immediately took me off the pill.
During all this time, my endometriosis hadn't been a problem. In fact, we all kind of forgot about it. I had other more important health concerns. I had assumed that the pill cured endo. Now I know there is no cure. (Sad but true.)
So I came off the pill. And what a glorious time it was! I had been exercising and dieting for years and FINALLY the weight and inches started melting off. I had a libido again. My skin cleared up. My depression vanished. My PMDD wasn't even PMS anymore. The only downside was my cycle length. I naturally run a 24 day cycle. So I went from having a period once every 7 weeks to once every 3.5 weeks. And I still bled for 7-9 days. But other than that, life was perfect! (Not to mention I met my now husband during this time. I am grateful every day that he got to see me during that healthy year, otherwise he might not have wanted to stick around someone so sickly. And I would not have blamed him!)
About 10 months after I came off the pill, I started having the worst stomach issues during my period and my periods got heavier. I assumed the stomach issues were from stress. I had been a heavy drinker for years before cutting back then cutting it out. I drank my problems away. After meeting Phil, I had to choose between gas money for our long-distance relationship or drinking. Since I loved him, I chose seeing him 4 days a week over alcohol. I think I made the right choice. But I wasn't sure how to deal with stress. And I was stressed out to the max. I was moving my whole life from my hometown to the Myrtle Beach area to be with him. We had only been together 4 months (but knew each other for 3-4 months prior). So I assumed the stress was giving me the worst periods and period symptoms.
Once I moved and got settled, I realized the stomach issues weren't getting better. In fact, I suffering from endo belly almost daily. (Endo belly is when your gut swells, sometimes in a matter of minutes, and you look pregnant. I don't mean 10 weeks pregnant either, I am talking going from normal belly to 5-8 months pregnant in the time it takes you to pump gas. I can't even describe the pain. It's beyond words sometimes.) My flare-ups happened when I was on my period and just after my fertile window. I barely recovered from one before I had another flare-up. I was taking handfuls of ibuprofen to ease my swelling and pain but unfortunately after a flare-up passed, I would suffer from withdraw from the medicine. If I was lucky enough to recover from that before the next flare-up, I thought myself very lucky. But truth be told, I was killing my body with medicine.
Things took a turn when during a flare-up with endo belly and all, I started bleeding rectally. Panicked, I called my mom who told Phil to drive me to the ER. A few hours, a lot of screamed into my fist swearing and many flashbacks to that first exam at 14 later, I was sent home with the diagnosis of an anal fissure. I had pooped so much, I tore myself. I still say Dr. Meaty Hands did more damage than I did, but I digress. He told me to keep drinking my Gatorade to stay hydrated and keep eating my yogurt for the probiotics. The bag of twice daily suppositories still makes me shutter to think about, but I did every.single.one.
Because of the fissure, I needed to find a new way to stop my pain. Ibuprofen isn't exactly the best medicine if you have an open, bleeding wound. I started using the herbal medicines I had used for migraines to ease my swelling, which worked as well as ibuprofen provided I started taking them at the very onset of a flare-up and even a few days before my period started. The doctors weren't sure what was wrong with me. They just kept saying to rest, keep doing what I was doing and to stay away from anything that made me feel ill. But everything made me ill. So yeah, that wasn't helpful and I gave up on doctors for a bit.
Instead I started researching what was causing my issues and one word from my past kept popping up - endometriosis. I learned that endometriosis isn't just the inability to fully shed your lining, I learned it can happen outside the uterus and even attack your other organs. I learned that the hysterectomy I had begged for years ago wouldn't cure the condition (if only they had told me that when I first asked). I learned about estrogen dominance and that taking progesterone helps balance this dominance. This reminded me that Yasmin was different because it used progesterone. So I started using a natural progesterone cream. I also started taking tinctures to balance my hormones, much to my disgust. The tinctures didn't last long as I couldn't stomach the taste. But the cream seemed to be helping. Things started looking up. Then something weird happened. I got hives.
Randomly, I developed hives with no known cause. They started in January with just a few here and there. By April, I was COVERED head to toe with them. I saw a doctor who was too afraid to touch my skin, even with gloves. He tossed me a bunch of prescriptions and gave me a referral to an allergy specialist. The specialist tweaked the antihistamines I was on to stop the reactions but due to the fact I lacked insurance and allergy tests aren't guaranteed to find a cause, we skipped the in-depth testing. I was in a constant state of drinking coffee without end in order to stay away from the 3 different antihistamines I was on.
The medicine helped to a degree but everything seemed to be a trigger for the hives. I had to stop the progesterone cream. I couldn't take ANY anti-inflammatories, not even natural ones like turmeric and pepper. If I took them or was exposed to mold in any level, my lips and nose would swell (thankfully, never my throat). Pollen was a huge trigger. Extreme weather changes were a trigger. Anything pressing into my skin, including clothes, triggered hives. Sweating triggered hives. Showers at the wrong temperature or for too long triggered hives. If I wasn't careful on my period and I had a bad outbreak, it wasn't uncommon for me to pass out if I stood up too quick. As the seasons changed, my hives would lessen but never went away. They just became tolerable. Summer and winter were the worst since I would constantly be exposed to sharp temperature changes just walking outside to my car but spring and autumn were the best since I could open windows and be in a fairly consistent temp all day.
During this hive outbreak, Phil and I moved back to Wilmington (and got married). The hope was that my hives would go away since I was back in an area where I hadn't experienced them before but they did not. However, in trying low histamine dietary changes, my flare-ups became easier to manage. In fact, before everything when to shit one more time, my flare-ups lasted a day, two at the most.
In May 2017, I found out I was pregnant. I had been told during my cancer era that while conceiving a child would be hard, keeping it would be next to impossible. So needless to say, when I found out and we decided we would do this, I was over the moon. A week later, I lost my baby. I won't go into details here as I have gone over this story in other places. But because of the pregnancy, we discovered I had a 10.3 cm mass on my right ovary. It had to be removed quickly because they were concerned that it could be cancer/that it would twist and cut off the blood flow to my ovary. The good news is that I dodged the cancer bullet this time. It was just a large, gross endometriosis cyst that was easily removed. The bad news was my flare-ups became as bad as they were when I previously attempted to rip myself a new one.
To start off, my flare days became flare weeks. I was once again homebound on flare days because the pain was beyond anything I was used to. My ovary felt like it was raw, because it essentially was, and any pressure near it caused intense pain. I could only wear pants with huge, blown out elastic waists or yoga pants or I would risk endo belly. After returning to work at the end of July, sitting at my desk without pain was next to impossible, though I still showed up every day that I could. None of my usual remedies for easing my pain really worked. My body was in too much pain. My fissure which was healed reappeared with a vengeance. My depression returned between the endo and the miscarriage (and who could blame me for being depressed?) and I was once again ready to run away from the life I had starting building with my new husband.
But there were some perks. I knew without a doubt what I was fighting. I lost more weight and was about 10 pounds from my goal pre-surgery and my month on the couch during recovery didn't send the scale back up. My hives had almost completely vanished with only the occasional one or two hives popping up. My bosses, all men by the way, knew that I had a chronic condition that sometimes requires me to spend more days working from home than from the office. I could take anti-inflammatories again, both natural and traditional. I joined support groups on Facebook and began connecting with other endo sufferers. And I made the decision to not go back on birth control and to treat myself as a whole person and not just focus on symptoms.
So now you know my history, my story, my background. Now let's move from my past to my present and my new normal.
Until next time my lovelies!
-M
