If you were to ask me when my endo journey started, my initial response would be that it happened when I was 19, just in time to steal away what should have been my “roaring twenties.” But really it all began years before that. Honestly, I think it’s always been there, lurking, a silent, progressive killer.
My first period came when I was 12 and for the next several years it was irregular, heavy and painful. I remember the cramps being horrific sometimes, but I just thought that it was a normal part of being a woman. I was active in sports in junior high and high school and I can remember how I hated having practice or a game when I was on my period because the pain and heavy bleeding made for a far from pleasant experience.
Finally, when I was 17, my mom took me to my first gynecologist and he diagnosed me with PCOS and started me on birth control pills. As someone who has always struggled with my weight, I despised it when the pills caused me to gain even more, but they did help regulate my periods. I had less pain and lighter bleeding, so I thought the worst was over.
Fast forward now to the fall of 2004, the beginning of my second year of college. Just a few days after I moved into my dorm, I began experiencing severe nausea and vomiting, on top of starting a very heavy, painful period. I couldn’t keep any food or water down and eventually landed in the ER, exhausted and dehydrated. The doctor treated me for a virus, gave me fluids, and sent me on my way, but my symptoms continued over the next several weeks, including the bleeding and pelvic pain. I attended only a handful of classes during that time and quickly fell behind.
I finally made the decision to withdraw from school in order to go home, see my doctor and concentrate on getting well. While I knew I was very sick, I fully believed it was something that would be easily taken care of and that I would be back at school in January. Instead, I saw my doctor and he immediately believed that I had endometriosis. He scheduled me for a laparoscopy in November, which proved his diagnosis correct, and then planned to immediately start me on Lupron. There were complications with the insurance company, though, and I wasn’t able to receive my first Lupron shot until two months after my surgery. By then the pain had already returned and the Lupron did nothing to stop it.
It was clear by this point that I wouldn’t be returning to school as soon as I had hoped. Not only because of my health, but I had also received noticed from the university that I owed nearly $1,500 for the semester and wouldn’t be able to enroll again until the bill was settled. Had I stayed in school, my parents and I wouldn’t have paid anything thanks to scholarships and a federal Pell grant, but my early withdrawal had changed all that, voiding my grant and one of my scholarships.
I had a second lap just three months after the first and my doctor removed more endo. I also had a second Lupron injection, hoping for better results to no avail. My pain continued with a vengeance and that’s when my doctor spoke the dreaded word: hysterectomy. I was barely 20 years old! As great as he had been up to that point, red flags jumped to immediate attention when he so easily suggested a hysterectomy as my next option. I wouldn’t hear of it and began looking for another doctor.
I soon found a wonderful new physician and he was amazing in every way an endo woman needs: patient, compassionate, collaborative, and fully committed to helping me get my life back. He started me on a new form of birth control and assured me that hysterectomy was not in his treatment plan. I continued to be in constant pain, though, despite any medicinal treatments. My new doctor had prescribed strong pain pills, but most of the time they only took the edge off. I hated that this was what my life had resulted in – constant, intense pain, unpredictable bleeding, and a plethora of hormones and pain medicine. Though it had been less than a year, it felt like a lifetime had passed since I was a normal, carefree college student.
In July 2005 I had my third surgery, only eight months after my first. This time my doctor didn’t find any endo, only lots of scar tissue. He didn’t doubt that endo was causing my pain, though; he explained that he believed my endo was deeply rooted in the muscles and tissue within my pelvic area. During my surgery he removed a thin lining of the peritoneum and made cuts to some of the uterosacral nerves in hopes that this would alleviate some of my pain.
Over the next several months, despite the raging pain, I attempted to find a job, if for no other reason than to feel somewhat productive in my day to day life. Going back to school seemed so far out of the question because of the endo and the money I owed, so I wanted to at least try to do something purposeful. And though I had insurance through my dad, I still needed money for prescriptions, co-pays and gas. Between the pain and frequent doctors appointments however, it wasn’t easy to maintain employment. I frequently had to call in sick because of the pain and my boss wasn’t always understanding.
My doctor and I continued exploring treatment options, different birth control pills mostly, and eventually he suggested Aygestin. It was my first ray of hope in nearly two years. It stopped my periods and for the first time in what seemed like forever, the pain wasn’t so bad. By this time it was mid-2006 and while I worked to fix my health, I was also looking for ways to fix my personal life. I was in debt and I desperately wanted to go back to school, to leave the dead end, low paying job I was aimlessly fighting to keep. Just as I was seeing the endo improve, my dad offered help that would allow me to return to school, this time at a community college close to home. I left my job and started classes that fall, and with the Aygestin working its healing and the endo lying mostly silent for a while, I was able to complete my associate’s degree over the next two years.
Reality hit midway through my second year when I turned 23. I was notified by the insurance company that 23 was the magic number that meant I could no longer be counted as a dependent on my dad’s policy and my coverage ended thirty days after my birthday. I could no longer afford the Aygestin, which was $200 a month without insurance. By the time I graduated in May 2008, my periods and the constant pain were back. Not wanting to give up, though, I enrolled in a nearby university for the fall semester, with plans to enter their social work program, but I barely made it through the term. With no insurance and little money, my only treatment for the endo was pain medicine and I struggled to afford my doctor visits. I was in horrible pain and bleeding for weeks at a time. The whole semester felt eerily similar to a time just four years earlier.
In March of 2009, as I was struggling through a second semester at the university, my doctor suggested another surgery, this time to remove my left ovary since the majority of my pain had always centered around it. Without insurance, though, I had little option. I talked with my dad, but he was unwilling to help with a surgery he saw as unnecessary. He hadn’t been the most supportive or understanding regarding my endo, even telling me that it was just cramps and something I had to deal with. Feeling defeated and with no desire or physical ability to finish a semester I was already failing, I withdrew from school again, upsetting my dad even more.
Because he was my primary financial support, however, I had little choice but to listen when my dad proposed I get another opinion, suggesting my stepmom’s OB/GYN. Not wanting to leave the wonderful doctor I already had, but feeling helpless with no money or insurance and no way to afford the surgery my doctor had broached, I conceded, making an appointment with the new physician. He immediately suggested several different forms of birth control that we should try: pills, the Nuva Ring, and Depo Provera. Knowing my previous lack of luck with such methods, but again feeling helpless to find any other options, over the next year and a half I tried them all. I had the most success with the Depo Provera, which gave me results similar to the Aygestin for the first 6 months. After that, though, the effects seemed to fade and it no longer provided any relief.
During this time, both to please my family and myself, I determined to finish my degree one way or another. I knew the pain kept me from succeeding in traditional classes, so I enrolled in an online school and by December 2010 I had completed my bachelor’s degree in psychology. I immediately began looking for a job, even though I knew full time work would be just as hard as, if not more than, full time classes. I felt like it was what everyone expected of me, though, and I both wanted and needed my financial freedom and health insurance. I started a job in mental health counseling in April 2011, but the stress of ten hour work days and the general nature and circumstances of my job quickly took their toll. By June I needed surgery to remove my gallbladder, and then in September my fourth lap for endo. To their credit, my employer was very accommodating considering I was so new to the position, but eventually my frequent absences and the need for extended leave after my lap left them no choice but to terminate. Just six months after I started, I was fired.
On the same day that I lost my job, I also had a follow up with my doctor. I was still in so much pain, even after my surgery. He had already told me that he only found one spot of endo on my ureter and that he did not remove it because he feared damaging the tube. Looking back now, I question his skill and thoroughness. He readily prescribed me pain medicine, acknowledging that I had a legitimate need for it, but in nearly the same breath he told me that there was nothing else he could do for me and that I just needed to get pregnant. He was very cold, matter of fact, and I left his office in tears, knowing that I wouldn’t be back.
Aside from one recent ER trip, I haven’t seen a doctor since that day. With no job or insurance, it has been impossible to afford an office visit, especially since I need a new physician and almost any new doctor requires payment in full. My husband and I were married in May 2012 (my amazing ray of sunshine during the past year), but the insurance offered through his job was just too expensive, especially with finances already extremely tight. Finally, in November, we made the difficult decision to move in with my mom in order to save money and allow him the chance to find a better paying, more beneficial job. While it was a big shot to our pride, ultimately it’s been a huge blessing. My mom, having dealt with it all herself, is amazingly supportive of my disease, and just having the chance to relax and make a fresh start has taken so much stress away.
That’s not to say I haven’t had my bad days, though. I’ve had some major pain flares and bleeding episodes in the last few months, each one lasting days to weeks at a time, and most days I don’t manage more than a shower, if that. I’ve broken down in tears several times recently, my emotions ragged and often hysterical. I worry that my lack of healthcare has left my insides vulnerable, an easy target for the endo to prey on and destroy. The best treatment I can provide my weary body right now is ibuprofen, hot baths, and my heating pad. I rest as much as possible, but I don’t sleep well and stay constantly fatigued. Always at the front of my mind is my desire to be a mom and the fear that I never will.
I’m hopeful, though, and my faith, however battered, is intact. I waver, sometimes daily, but I’m here and taking it one day at a time. I’ve slowly learned over the last eight-plus years that my life may not be what I dreamt of or pictured, and it’s certainly not what others expected of me, but it is still my life and it’s blessed. In the midst of the pain, there is still beauty, if only I look for it. Things may not have turned out the way I thought they would, but they did turn out, and I’m still here. I can’t give up now. I may not have had my roaring twenties, but maybe, hopefully, my best days are still ahead of me.
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.