This post might be more detailed than some of you care to know, but I feel obligated to share. I think it's best if people hear this from me, & understand why we made this decision. I am having a hysterectomy in May to treat my endometriosis, after I finish with graduation & work. This is a definite decision, & Laker & I are asking for support, not opinions. We feel peaceful & confident in this, but we know it is an emotional decision, & many people will not understand why we have made it.
I am sharing now for a few reasons. First, I will be having surgery, followed by a 6-week recovery, followed by a lifetime of not being able to have biological children. People are bound to find out eventually. We already get asked multiple times a week when we are planning to have kids (Why is that an okay thing to ask people? It's so personal), & it's getting tough to avoid answering. Second, I don't want to wait until the last minute to share because I know people will have questions. I would rather open up now than wait until just before surgery & wake up to lots of questions during recovery. That being said, please read all the way through before asking questions, & please respect our privacy in your questioning. Third, I have read so many articles during the past few months about hysterectomies, especially by young women, & it has been helpful reading about those similar experiences. If my experience can help even one person, then it is worth sharing.
March is Endometriosis Awareness Month. Endometriosis affects approximately 1 in 10 women in the United States, yet takes an average of 7-10 years to diagnose. Endometriosis has also drastically affected my daily life, & is now leading to my hysterectomy at age 26. Yet I am learning that many people are unaware or have an incorrect idea of what this disease is.
So many people think that endometriosis is "painful periods" or "bad cramps." This is just a small fraction of what the disease causes.
I think about it like this. When I started having gallbladder problems a few years ago, I woke up in the middle of the night, literally thinking I was having a heart attack. We rushed to the ER, & they said I was having an esophageal spasm, which mimics heart attack pain. They told me it was caused by acid reflux, & to take over-the-counter antacids & I'd be fine. Over the next several weeks, I had more spasms, couldn't stand up straight due to pain, & got sick every time I ate. It turns out, I had so many gallstones, they were spilling out, & one was blocking my bile duct, causing spasms. I had to have two surgeries to remove the gallbladder & stones. Treating gallstones as acid reflux did not work. Having my intense pain minimized to "acid reflux" was also frustrating. There was a much more serious, underlying issue. I wouldn't have needed surgery for acid reflux.
Endometriosis is the same. People think I should take ibuprofen for my "cramps," or that my pain lasts a few days during a "bad period." This minimizes the disease. Ibuprofen is worthless for my pain. I wouldn't have a hysterectomy for cramps. No doctor would even agree to that. This is a serious, daily problem.
I deal with nausea, back pain, & constant fatigue. I've had bloating so bad, I looked like I was a few months pregnant. My diet is restricted because many foods cause inflammation, which worsens symptoms. My weight has fluctuated so much from medication changes, my jeans no longer fit. I have daily pain - sometimes so bad that I'm in bed for days at a time, unable to do anything.
What is endometriosis, though? Endometriosis is when tissue that normally lines the uterus grows outside of the uterus. Mine, for example, has grown in reproductive organs & on my blood vessels, ureters, & rectal wall. This can cause organs to fuse together, cause internal scar tissue, or cause these tissues to shift or tear. I have had bleeding internally from torn scar tissue, which is also very painful.
The only official way to diagnose endometriosis is through laparoscopic surgery. This surgery determines whether the growths exist, & in many cases, the growths can then be removed during surgery. However, they can grow back after surgery, & many women have to have the same laparoscopy multiple times (I met a woman who had this surgery 6 times due to recurring growths). I had this diagnostic laparoscopy in the fall of 2015, but no growths were able to be removed due to their locations.
Other treatments include various forms of birth control & hormone treatments. We have had years of trying various birth control methods, none of which helped with pain, & many of which led to horrible side effects. I also tried a chemical hormone injection, which put me through chemically-induced menopause for several months. Again, this led to horrible side effects - I experienced hot flashes, had awful mood issues, & lost at least 1/3 of my hair from the harsh chemical treatment, with no decrease in pain.
This all leads to our current step: hysterectomy. Hysterectomy is the only conclusive treatment for endometriosis, but it is not a cure. It is possible for endometriosis to grow, even without reproductive organs present. But I am told that this will help with a good portion of my pain, & we have no other treatments to try. Our hope is that, after removing &/or cauterizing the current growths, I will have no further issues with endometriosis. My cardiologist also believes it will help with many of my heart symptoms, which is an unexpected plus. My hope is that God will use this to heal, although it seems scary at first. We have full faith in our doctors, & believe God uses doctors to bring healing. My doctor is a specialist at one of the best hospitals in the state, & has been with me through all of my treatments over the last few years. She knows my medical history & personality. She says she would not recommend a hysterectomy for someone my age if she had not known me so long & been aware of my specific combination of circumstances, as well as observed all the complications I have faced. This is a drastic option, & our last resort, but it is our best choice.
Please know that this is not a decision we have rushed into. With all of my other health issues, having children is not a safe or realistic option for us, regardless of this surgery. We have known for years now that adoption might be our safest choice, should we decide to have kids. And if we don't decide to have kids, that's okay too. This surgery is forcing us to come to terms with that, & it is tough. But we are learning to be okay with it throughout this process.
Also, it is okay to be sorry for what we are going through, but we do not want pity. & to me, there is a big difference. Our situation is difficult & emotional, & it is okay to be sorry for that. But please do not pity us as people. I am trying to see this as a medical decision, but many people don't see this as a medical treatment - they only see the end of my childbearing options. That is a big part of it, but as I said, I would likely not have been able to have children regardless. We do not want to be treated differently because we cannot have children biologically. I believe adoption is something people should be called to - not a secondary, lower option that is a last resort for those who can't have kids "of their own." I also don't believe everyone is supposed to be a parent.
I don't know what is in store for us next. But I definitely don't believe I am less of a person because I can't carry a child, & I don't want to be treated that way. I am a wife. I am about to graduate with my Master's degree. I am pursuing a career I am passionate about. I am involved in a church that I love. I have a family & in-laws who are supportive & involved in each other's lives. If anything, right now, I am less of the person I should be because of my limitations. I can't do many things I once enjoyed, or many things I still enjoy, because of physical limitations. I miss activities & events, am only in church about half of the time, & have had to find new hobbies. I want to do MORE of the things I love. My hope is that this surgery will help with that. Giving up the ability to carry a child is difficult, but I can be okay with that for the opportunity to be a better wife, sister, daughter, servant, counselor, & maybe, eventually, a parent. I want to be able to function normally, & to not spend every day in pain. This surgery won't fix every issue I have, but any decrease in my pain is a major bonus for me.
This has also been a decision that has been constantly discussed for months, between not only Laker & myself, but also our families, church leadership, & multiple doctors, since we knew we were approaching this decision. There have been many conversations & prayers during that time. Please realize that just because this is new information for many of you, it is not new for us. We truly feel at peace with our decision, & the last thing we need is judgment, criticism, or people second-guessing our decision.
What we need now is support. We have some difficult times ahead, & although we are confident in our decision, it will still be emotional. I am so busy right now with school (I graduate in May, so I am in the process of final testing, & graduation & licensing applications), & also work, interning, & classes. Adding in this stress is a lot. Anything that will help Laker, especially during that recovery period, would be great. He does so much to take care of me daily, & it's much tougher when I'm completely bedridden.
I also want to say special thanks to those who have been supporting us already. Laker, of course, is amazing, & deals with so much more than anyone our age ever should. Both my family & Laker's have been so supportive, & are there to help with whatever we need. Neither of our families have pressured us in any way, & have urged us to do what is best for my health first & foremost. We have had several people at church who have been praying & checking on us, & that has helped to lighten our load. Several of our friends have done the same. I especially want to thank Whitney for always being the first one I can go to with anything... Leah & Sara for being the first to tell me to just take care of me & not worry about what anyone else expects... Brandon for being understanding that I had to bail on being a groomsman in his wedding (which I'm still heartbroken about)... Brooke for sharing my dark humor & offering the most unique response to all of this... & Cary & Sarah for feeling our pain with us.
This is not a disease to take lightly. Symptoms range from person to person, & although some may simply have "bad periods," many women have much more intense issues. Endometriosis is also somewhat unique in that sometimes women can have very small growths with tons of pain, & sometimes women can have deep growths in multiple areas, with no pain at all. Endometriosis also mimics many other causes of pelvic pain, which makes diagnosis more difficult.
Here are some links to more information, for those who are interested. A few of these links have cursing, so I apologize for that, but the content is important. With 1 in 10 U.S. women being diagnosed, chances are, you know multiple women suffering from this disease.
15 Things Anyone With Endometriosis Needs You to Know
The Mighty Video - Cramps vs. Endometriosis
19 Things People with Chronic Pain Want You to Know
18 Women with Endometriosis Reveal what They Want Everyone to Know About Their Struggle
17 Things Women with Endometriosis are Tired of Explaining
Stages of Endometriosis
20 Tips for Men on Supporting a Partner with Chronic Pain (This article makes me teary every time I read it because it is 100% what Laker & I go through daily. The title says it is for men supporting partners, but this information is useful for anyone supporting a loved one with chronic pain/illness.)
It's crazy to think that it's been 6 years since I got sick.
Partially because 6 years seems like a long time. But partially because I don't remember much else.
In September of 2010, at the beginning of my sophomore year of college, I passed out at work. I woke up feeling terrible, & continued feeling terrible for weeks. I experienced weakness, fatigue, dizzy spells, & several other symptoms. After months of testing, I was diagnosed with neuro-cardiogenic syncope, a form of dysautonomia. October is Dysautonomia Awareness Month, & I wanted to inform people about a little of what I have been through with this illness. However, it's been a long road since then, so some of this post will be about battling chronic illness in general.
Before my first episode, I was very active & energetic. I was a cheerleader throughout high school, & I enjoyed going climbing, running, & going for walks. I was pretty outgoing, & I was always out with friends. I was always doing something, & was always around people.
Once I had my first episode, everything was different. I was constantly sick & tired. I could no longer do the things I enjoyed, & most of my friends didn't stick around since I couldn't be active anymore & was often tired. Even worse, I had friends who accused me of faking or pretending things were worse than they really were to get attention. I had people ask if there were un-confessed sins in my life that were causing me to be punished. It was a lonely time.
Since my first diagnosis, I have a lot of limitations. I am not supposed to lift more than 10 pounds. I am not supposed to stand for more than 30 minutes. I can't do anything that causes an adrenaline rush. I can't do anything that puts stress on my heart, like cardio workouts. If I ignore these limitations, my heart starts to beat too fast. I have palpitations, which are painful. If it continues to beat too fast, my heart will "pause" to reset itself (the doctors don't like to say that it stops until it reaches 45 seconds, & the longest mine was recorded "pausing" was about 20ish seconds). When this happens, I pass out, & once I'm laying flat, my heart resets & starts beating normally again. I know my symptoms well enough now to be able to tell when it's happening, so I can generally avoid passing out, but I still have dizzy spells, palpitations, & other symptoms often. I have to avoid anything that could trigger these reactions. Normal 19-year-olds don't have this lifestyle. Normal 25-year-olds don't have this lifestyle. Normal middle-aged women don't have this lifestyle. Things have been different for me.
After my initial diagnosis, things continued to add up. I was diagnosed with neuropathy in my hands & feet, as well as complicated migraines (migraines with stroke symptoms). I have endometriosis, & I was recently diagnosed with lupus. I had my gallbladder out a couple of years ago, & I still have dietary & digestive issues. My restrictions & limitations have continued to pile up as well. Sometimes it's difficult to focus on what I can do, because I'm so focused on all the things I can't do.
Pain & illness are a common, daily thing for me. I have been to the doctor dozens of times in 2016, & that is not an exaggeration. The contact list in my phone has over an entire page filled with my doctors & specialists. I don't get to skip work because of allergies or colds. I don't do "yearly checkups," because I go to the doctor often enough that they already know what's going on. I take about a dozen or so medications on a daily basis. & that's when I am having a normal day, not a "sick" day. I look fine a lot of the time, so people assume that I am. & I try to act like it. But when I push myself too hard, the symptoms pile up & catch up to me. Sometimes things sneak up, & I have episodes in public, which is embarrassing. I don't say all of this to gain sympathy or make people feel guilty. I say this because I often think back to those initial comments I dealt with.
If you know someone who is dealing with chronic illness, they likely don't know how to talk about it. This is the battle I go through: My illnesses affect every area of my life, & so they influence every decision I make. If I talk about being sick too much, I'm afraid that I will become annoying or seem whiny. If I don't talk about it, then people don't realize I'm sick & judge me for missing events or "being lazy" at things. I try not to complain to anyone outside my inner circle of support, so if I do say something about my pain, it's likely pretty bad. & I'm used to handling pain, so that means something. I won't try to assume that this speaks for everyone who is dealing with chronic illness, but I am sure that anyone in that situation can relate on some level. Please don't assume someone is faking, or pretending it's worse than it is.
Most of all, know that this is not a punishment. John 9:1-3 talks about a blind man. When the disciples ask, "Who sinned, this man or his parents, that he was born blind?" Jesus answered, "It was not that this man sinned, or his parents, but that the works of God might be displayed in him." I have full faith that God will use every pain, every illness, & every experience for His glory.
My faith plays a major part in my illness. The weekend after my first episode, I went to church & a man spoke who claimed to have the gift of prophecy, saying he could sense medical ailments in the crowd. I wasn't raised in a church where that was a common occurrence, so I thought to myself, "Let's see what you've got." The man said that he could sense someone who had fainting & dizzy spells, & who had a pain in their right side, from their hip to their shoulder. I hadn't mentioned it to anyone, but when I passed out, I had hit my right side, & it was bruised from my hip to my shoulder. I went up to pray with the man, & as he prayed, he said, "God, I want to thank you for the gift of counsel in this girl's life, & that she will use the experiences she goes through to help the patients I see her working with in the future." I had never met or even seen this man before, so he had no idea that I was going to school to become a counselor for kids who are suffering from terminal illnesses. I have no doubt that God used that man to show me that not only was I on the right path for school & my future career, but also that although this would be a long journey, it would be for a purpose.
Here is some more info on dysautonomia & my heart condition.
More information on neurocardiogenic syncope can be found here.
Here is a great article about how to care for loved ones with chronic illnesses. It's written for spouses, but I think it can be a great resource for anyone who is a caregiver.
Christ. Laker. Lily. Padfoot. Puns. Polar Bears. Travel. Tea. Tattoos. Tigers. Books. Belle. Buffaloes. Wonderland. Creativity.