My Story, The Long Version

Every year when March rolls around I take some time to reflect on my life with Endo. Here is my attempt to put it into words and share it with you. It's always been so personal to share on this topic but I share because of the way I have been helped by others who did so.

In my early twenties I was out with friends for lunch, followed by shopping. It was a low key, almost boring event in which I'm sure I didn't tell my friends I was on my period. Everything changed abruptly however when I was gripped by dizzying, nauseating, crippling abdominal pain. I rushed to the public restroom barely able to stand upright and began puking, before asking my friends to quickly drive me home. I knew from experience I wouldn't be able to get behind the wheel of my own car. Thank goodness I hadn't ventured too far from home and was able to go straight home to bed. The next 24 hours held intense pain, overwhelming nausea, continual vomiting, and sheer misery. Another time I was at work when the familiar pains began mid-morning. I knew I needed to make it home before the nausea set in and the vomiting started so I abruptly left work. I was half way home barely able to sit up, driving past my friend's house when I knew I couldn't drive the remaining distance. I made it inside to her bedroom floor where I rolled around in severe pain for the next few hours. Then there was the time my pain induced vomiting didn’t let up for such long hours I had to go to the ER for IV fluids. They tried multiple times to start an IV as my veins collapsed from dehydration. The bruising on my arms took days to fade, reminding me I had no way to stop this from happening again. The ER doctor assumed I'd had a virus and seemed unfazed that I was experiencing this on a monthly basis, as a result of having my period.

I finally learned that I could manage my pain best by staying as warm and comfortable as possible at home with a heating pad and over-the-counter pain meds. I tried my best to manage my pain hoping I wouldn’t become nauseated and begin the endless hours of vomiting. Eventually I could simply glance at my calendar to see the week I'd blocked out with a pink highlighter, my expected menses. I knew I needed to stay home whenever possible during that time. Some periods I did "OK" and others were simply horrible. It became a way of life. My body set strict limitations while I tried to avoid giving my self-perceived "lame excuse" of my "period" being a reason I had to say no to things. I usually tried to gracefully bow out of invitations and events without mentioning my period at all. It hadn’t taken long to find out that other girls had "bad periods" too but somehow it wasn’t stopping them from doing what they wanted to. My severe period pain had begun to scare me, and a trip to the ER because of my period scared me. The doctors I saw didn’t seem to understand or acknowledge that my pain level was directly triggering the nausea and vomiting, perhaps because it was "just" my period and couldn't be to blame.

When I was a young girl my mother had warned me that periods would hurt. This was just the way women in our family experience their periods and it was nothing to be afraid of. It was a normal part of woman-hood, or so they thought. As a late teen, I had once read something in an old, worn medical handbook about a condition called Endometriosis (en-doh-mee-tree-oh-sis). It was described as fragments of uterine lining misplaced and implanted throughout the pelvis. They would bleed every month during the period, causing pain. I now know this to be a commonly held, outdated, and over simplified description. I learned much later that the endometriosis cells are merely similar to that of the uterine lining but not the same. There were no treatments discussed that I recall but it was a long, strange word with a list of symptoms I could identify with. I had to wonder if Endometriosis could be causing my problem.

In my mid-twenties I consulted a doctor who told me my symptoms lined up with something called Endometriosis. There was that long, crazy sounding word again for the second time! Finally my problem had a name, or so I hoped. I was told there was no way to prove I have Endometriosis because they can't see inside my body. I was advised to take birth control pills to control my periods and perhaps feel better. They said if I had Infertility later in life, common with Endometriosis, they could treat me, but until then there was nothing they could do. When I asked how to manage the pain they suggested taking NSAIDS (such as Ibuprofin, Tylenol, etc). I was told that prescription medications are not given for period pain. No matter how severe the pain was, it was still "just" a period. Instead, I was given anti-nausea suppositories to help manage my nausea and vomiting.

By the time I was married I went to another doctor who also told me I likely have Endometriosis. I was starting to get used to the long word that held possible answers to my menstrual problems, (en-doh-mee-tree-oh-sis). This time I asked them how I could find out for certain. They told me insurance companies don't like paying for the surgical procedure it takes to get a diagnosis. Even then, doing surgery wasn't going to help me in the long run. I was advised to wait until I experience Infertility to revisit a diagnosis. I told them I was stuck in bed for days at a time in terrible pain and I wanted to fix it, not live with it. I told them I want to actually know for sure what is wrong with me. I figured there was something they just weren’t telling me. There had to be a better answer. The response I got is forever etched in my memory, an exasperated, "What do you want us to do? Draw blood or something?" "Just take the birth control pills." Or get pregnant, pregnancy could fix it, they said. In essence, they could not treat me for Endometriosis; they could only give me birth control pills for Dysmenorrhea (painful menses) to help control my hormones.

Little did I know, I was already on the path to becoming my own best health advocate. Even though my most recent doctor had handed me a computer printout on Endometriosis stating emphatically, "Here, you won't find this on the Internet" (like I couldn't be trusted to find valid information), I went home and read everything I could find pertaining to Endometriosis. I searched the internet, I accessed medical journals and read research studies, I read books. I even printed out long medical journal articles and ran my highlighters dry. I read stories of other women experiencing Endo and learned that birth control had made things worse in the long term for many of them. Lupron (commonly prescribed to shut down hormone production), carried a multitude of negative and serious, long-term health effects. Pregnancy didn't help everyone, and not everyone wanted to get pregnant just to hope they would feel better afterwards. Surgery didn't help for more than a few months to a year. Endometriosis always returned, resulting in endless repeat surgeries. I still wasn’t finding real answers that could help me.

Even if birth control pills could make me feel better for a while it felt like a significant risk. What if the hormones were really fueling the growth of more Endo? Without further treatments available I was terrified to think the disease could get worse by taking the very hormones that were meant to help me. Birth control pills were not our preferred method of family planning so I had no other reason to take them. Instead, I tried to get as healthy as I possibly could through good nutrition, exercise, herbs, whole foods, eliminating chemicals from my daily environment, among other things. I kept on searching, reading, and suffering. Slowly some of my healthy lifestyle changes helped me feel a little better overall, but I still had those excruciating days where I lay in bed and couldn't move, consumed with pain. I still ended up in Urgent Care again with more of the same results. I still had to plan around that week on the calendar every month. There were no predictors for what would bring on my worst symptoms in any given cycle. I even turned to my faith and begged God for healing time and time again.

My most memorable research was in 2007 when I was 27 years old. I read about a doctor in Oregon who was doing surgery for women with Endo. He was having an unusually high success rate for helping women feel better long term after surgery. Instead of the typical scraping or burning the surface of Endo lesions (ablation method) he was EXCISING (cutting) the Endo growths below the surface (excision method). It wasn't growing back, even years later. His patients were flying in from other states and staying at a hotel nearby before and after surgery. His name was Dr. David Redwine. I read everything I could find about him and his work with Endo. I said to my husband, "I might have a chance. If I don't get pregnant, or if pregnancy doesn't fix this for me, maybe this doctor can." I had caught my first glimmer of real hope. Noted to add I still didn’t know at this point that pregnancy is never a cure.

When we decided it was time to start our family in 2009 I became pregnant immediately! My OB doctor was optimistic that pregnancy would eradicate all of my Endo symptoms for at least a good 4 years. If not, he said he'd put me on Lurpon and we'd go from there. I was told again that as long as I wasn't struggling to get pregnant there was nothing they could really do to help. During my C-section delivery they were able to see a bit of Endometriosis on one of my ovaries. Still in the hospital, the day after I’d had my son, my OB gently told me he had seen "chocolate cysts" around my ovary indicating the Endometriosis had been there for a long time. He may have thought I might be shocked to hear I actually had a disease but it was no surprise to me! I'd been having all the symptoms for over ten years. I was relieved to finally have visual "proof” of disease. Endometriosis (en-doh-mee-tree-oh-sis). Now I could finally say with confidence I know what's wrong with me, beyond a shadow of a doubt. Somehow it seemed that this knowledge would help me find a solution.

I felt fine following my pregnancy, for the three months it took my period to return. It was soon evident I was going to continue to suffer with Endo. Some of my symptoms changed and morphed; my family doctor thought I was experiencing Irritable Bowel Syndrome. Things progressed to the point where I was still having severe pain with my periods but now it was accompanied by diarrhea instead of vomiting. Eating anything besides maybe some crackers and water within a three day time frame during my cycle would result in severe menstrual pain. I had a child to care for now and some days I couldn't even get him off to preschool in the morning. During many of my periods I was doubled over in pain and couldn't get out of bed for hours at a time. Even though Endometriosis was a heavy burden on my life and our life as a family I still felt somewhat lucky. I hadn't struggled to get pregnant. My pain was only during my actual period time. Many women with Endo couldn't get pregnant at all or were having Endo pain every day of their life. As difficult as it was to struggle and suffer through I always held onto the thought that “It could be worse”, giving me courage to go on. After all, when I wasn’t having my period I was having a good day.

By the time our son was 2 and I was in my 30's we wanted to continue growing our family. This time it wasn't so easy. After six months and then a year went by, I had various tests that came back with the diagnosis of Unexplained Secondary Infertility. Several fertility consultations later it was decided that my Endo was very likely to blame. This was the point at which everyone over the years had said they could help me. I was pointed to IVF (InVitro Fertilization) which in fact would do nothing for my Endo.

A young, caring and knowledgeable doctor at the Cleveland Clinic recognized that I was suffering more from the pain aspect of my Endo than the Infertility part. She prescribed me some anti-inflammatory meds and offered to do an exploratory surgery to address some of my Endometriosis for both pain and fertility reasons. Their surgical methods sounded pretty good but I was unsure at that point if I was headed down the road of multiple ineffective surgeries. One of things that discouraged me was that even with surgery, every doctor I had spoken with expected Endo to return in the same places they had removed it, within a year or two if I was lucky.

In the meantime I had begun my research on having excision surgery. I wanted to have a doctor whose patients were getting better for the long term. I was sorely disappointed to find Dr. Redwine had since retired. He can't be the only one, I thought. If this is working there have to be more doctors doing it. I found Dr. Sinervo at the Center for Endometriosis Care in Atlanta, Georgia. They were performing excision of Endo via laparoscopy (a minimally invasive surgery) with a great track record. They even kept follow up records on their patients to track success of excision (cutting out the lesions) compared with typical methods like ablation (burning away the lesions). Many if not most of their patients had found permanent relief. When a repeat surgery was needed for any reason, they were seldom finding Endo back in the same places they had removed it from. Not only that, they were able to handle complicated cases of deep disease in women like me who had been suffering for many years, which other doctors were often less skilled at. I also found Nancy's Nook Education and Discussion Group on Facebook. Nancy is a nurse who worked with Dr. Redwine for years. She keeps tabs on doctors around the country who are effectively performing excision of Endo. She made a list of doctors' names who she’s contacted herself to verify their surgical methods/outcomes and/or received patient feedback on outcomes. She's a voice of experience and education I never could have found in my younger years before the internet.

The Center for Endometriosis Care (CEC) is one of a handful of places around the country using an effective surgical method (true excision) and having long term success at treating women with Endo. I knew I needed to go there. Everything fell into place and I had a surgery date set for July of 2014 which I later cancelled. I had to do a lot of investigating to find out how our health insurance was going to handle an out of network provider, crossing state lines, and what bills we might be left with. It was very difficult to get a clear picture of our financial outcome having this surgery. During that time I somehow heard about another doctor who had spent time at the CEC for training and was also doing excision surgery with good results…in St Louis, MO. To top it off I didn’t have to go out of network on my insurance to go there. I contacted this doctor and had many email exchanges and several phone discussions before booking my consultation and surgery for October 2014.  Dr. Yeung is caring, highly skilled surgeon. I never had to doubt I was in good hands, which isn’t something that comes easily for me.

I went in for surgery on October 14, 2014. To calm my nerves I held an optimistic view that I would be in and out within the typical 2-3 hours. Even though my symptoms had been severe all those years, I held hope that I would be an easy fix and they would find a minimal amount of Endo. The funny thing about Endo, although the word funny and Endo should never be used together, is that it’s a very individual disease. No two women will have Endo in exactly the same spots, even though it’s generally found in similar areas. The pain is varied as well and does not indicate the amount of actual disease they will find.  I could have a few Endo spots and have the same severity of pain as someone with tons of endo. Or some don’t feel pain at all and only discover their Endo because of Infertility. Well I wasn’t as lucky as I’d hoped; it took 7 hours to complete my surgery that day, including a Bowel Resection. I had Stage 4 (the highest stage rating) Deep Infiltrating Endo known as DIE (yes I felt like dying a number of times over the years). Endo had even infiltrated my bowel wall. Normally I would have needed a second surgery to address the bowel but my case was so severe the doctors knew it was riskier to wait. In the end, I’m incredibly lucky. I have since said goodbye to “Irritable Bowel Syndrome” and couldn’t be happier! I’ve also said goodbye to crippling period pain. No more nausea, vomiting, and diarrhea; no more pink highlighter blocking out a week every month on my calendar. I’m free!

Sometimes I have felt some intense anger and frustration for those 10+ years I spent at the mercy of a disease that had a solution all along. At the same time I wouldn’t be who I am today without that experience. I’ve discovered I am not alone. Endometriosis takes an average of 10 years to get a proper diagnosis, let alone proper treatment, and affects 1 in 10 women. I think diagnosis and treatment times are changing for the better ever so slowly and I want to be part of that change. I wouldn’t wish my experience on anyone and I will do anything I can to shed light on the path for others who come behind me. It’s the stories of women like me who make me know I am not alone and make me want to share mine.

If I were ever to have a daughter with Endo I would know how to help her. I would know that maybe she was born with it, a theory based on finding misplaced cells similar to that of the uterine lining in female fetuses at the same rate Endo is found in women. I would know that early treatment of Endo via excision surgery (until we find a cure) would preserve her fertility. I would know she’d be spared years of crippling pain. I would know how/where to find the right doctors who can help.  All the things it took me more than ten years to find out.

Inferility. I’ve learned that digital etiquette calls for a Trigger Warning on this topic these days. So Trigger Warning: Infertility. My excision surgery for Endo solved all my big problems except for Infertility. I won’t get into all the details since that’s not the focus of this blog post. However I did go for another surgery with Dr. Yeung for fertility reasons. So far we have not had the result we were looking for, a pregnancy. The years keep ticking by. I hold a lot of grief and sadness that one thing Endo took from me is my ability to have more children. Endo broke my body and sometimes breaks my heart but I won’t let it break my spirit. I have a lot of joy left in life and a lot of life left to live. The word that comes to mind is Resilience. I don’t doubt that there’s anything ahead of me I can’t get through.