stage iv endometriosis

Coming Out of the Disease Closet – The Challenges of Chronic Illness

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“When do you come out of the closet?”

“What?!” I replied, half choking on my coffee.

This question came as my friend, a fellow chronic disease sister, and I were getting coffee and discussing the usual thing topics girls in their twenties discuss, work, friends, boys, relationships, boys, world news, boys, you know the usual.

She clarified; “Say you are dating someone, when do you tell them that you are sick… You know, come out of the ‘disease closet’?”

I took a moment to reflect because it was a good question; oddly worded but nonetheless a good, thought-provoking question.

I thought back to the first time I came out of the disease closet. It was after a few weeks of dating this guy I really liked, who was a bit older than me. I was having surgery in a month and I knew I needed to talk about the surgery before it happened (so it wouldn’t seem suspicious if I wasn’t up to going out for two weeks or so). I very hesitantly told him a brief version of my medical history and the impending surgery. He took a few minutes to pause and then finally after what felt like forever he said “So you can’t have kids.” I was 18 at the time and so my response was “I don’t know I haven’t really tried, have you? I mean who really knows if they can have kids unless they’ve tried.” He followed up with the standard ‘you’re a very brave girl’ spiel and that was the end of that. I think we had one or two more dates after that and then two weeks before my surgery he stopped returning my texts and calls. No explanation, nothing, that was that.

I had (or at least I thought I had) learned a lot from that experience; with the main takeaway being ‘my private matters are best kept private.’ I am 21 now and I have been dealing with health issues from the day I was born. I’m not looking for praise or an award, I just want to live a normal life. I graduated high school with honors, I graduated from college in three years and have found a lot of success in the working world. If I never told you I was sick, you would never know that I have stage IV endometriosis with endometrial lesions growing all the way up towards my liver and covering almost the entirety of my reproductive system, causing me crippling pain at least once a month.

When I am in pain you would never know it. Despite being in pain, I will still meet you for coffee. I will still go to class or to work or meet with a client and there will be a smile on my face, because I just want to be normal. I don’t want to have to come out of the closet because someone somewhere decided being ill is shameful. I have nothing to hide. I have stage IV endometriosis, thyroid disease, chronic migraines, weird allergies and narrow angle glaucoma and I’d wear it all on my shirt if I didn’t think that people would judge me as being ‘lesser.’ I wouldn’t be stuck in some ‘disease closet’ if I thought that I could tell people these things without having them give me ‘sad’ eyes or tell me (or not tell me) they don’t want to date me anymore because I have ‘too many problems.’

But I can’t say all of these things openly because there is a stigma attached to people with chronic diseases; those who are disabled, those who fight their bodies on a daily basis. I don’t get to talk about these experiences, the countless hospital visits, the fifteen surgeries that have made me a stronger, better person because I am stuck in this ‘disease closet;’ because to be ‘ill’ is to be abnormal and we are taught to be ashamed of abnormality.

Its not easy but we all need to stop hiding. No one is ‘lesser’ for being different and no one should be made to feel that way. By hiding, we convey that we have something worthy of hiding, something that we should be ashamed of. I’m not saying to go to the next person you meet and say “Hi I am so and so and I have such and such” because that’s just a different way of defining yourself by your illness. Instead, you should be able to talk candidly about what ever adversities have been thrown your way without feeling ashamed. Through openness we teach acceptance of ourselves and of others. I apologize if that sounds like it came out of a fortune cookie – but its true! I’ve learned that the problem wasn’t coming out of the ‘disease closet’ to others, the problem was I hadn’t ‘come out’ to myself.

If you would like to share your story regarding your personal experiences dealing a chronic illness or telling others about your health issues, feel free to do so in the comment section below. Or write a blog for Hormones Matter. If more women would come out of the disease closet maybe we can begin the long journey of curing some of these often invisible illnesses. Come out of the disease closet.

This post was published previously in February 2013.

From Lupron to Fibromyalgia, Hashimoto’s, Pericardial Effusion and More

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My name is Kerri. I was diagnosed with Stage IV Endometriosis when I was 27 years old. I am here to share my story about Lupron so that hopefully someone else does not have to go through what I have gone through and what I am still going through.

I suffered through years of horrifically painful periods when I was in high school. My cramps were often so bad that I would be crawling around on the floor every month.  I would develop fevers from the inflammation and the pain. I started getting sick a lot.  I was dismissed by almost every doctor I went to. I just consistently heard, “You are young, don’t worry about it, “or “You are just stressed out.” But I know my body and I knew something was wrong. My hormonal fluctuations were also a nightmare. I suffered waves of depression and extreme irritability. It was not until I was rushed to the hospital for pancreatitis that my doctor noticed a deformity in my uterus through a CAT Scan. I decided to see a new gynecologist and he immediately sent me for a pelvic ultrasound. I had cysts everywhere. After my first laparoscopy, I was diagnosed with Stage IV Bilateral Endometriosis. All the visible endometriosis was removed along with the cysts.

I continued to be proactive and go for regular pelvic ultrasounds. Unfortunately, the cysts and endometriosis progressed rapidly. My doctor said I was the most progressive case he had ever seen. I then went on to see a Reproductive Endocrinologist. He did an in-office ultrasound on one of my visits and told me I needed immediate surgery. After surgery, I was told that the endometriosis had spread rapidly to my entire pelvic region as well as my kidney, my liver, my bladder, and my intestines. He said to me, “We are going to start you on Lupron. Your case is too progressive. This is your only hope.”  I was also told I would never be able to have a child of my own.

I went home and researched Lupron myself. There was nothing, but horror stories about it online. I was especially concerned with the alarming amount of fibromyalgia diagnoses’ after use of Lupron. I addressed my concerns to my doctor. He reassured me by saying, “You can’t believe everything you read on the Internet. This is a good drug.”  I decided to trust in my doctor, even though my gut instinct was telling me not to take this drug. However, I was living a life of pain and wanted desperately to get my life back.

I received my first dose of Lupron through injection August of 2007. I was told that my only side effect would be hot flashes.  I never got a hot flash from Lupron. Instead, I experienced crippling fatigue and involuntary muscle twitches and facial tics.  At the end of the month I still got my period. Lupron is supposed to suppress your period. I called my doctor and told him. He did not seem concerned. Therefore, in September I received my second Lupron injection. My fatigue and muscle twitches increased and I, again, got my period at the end of the month. My third and final shot of Lupron was administered in October. I remember being at work and saying to my co-workers, “I don’t feel right. Something is not right.” Every muscle in my body ached and my joints were hurting.  I could not bend my fingers. I put a call into my doctor.  I was not able to reach him, but spoke with the Nurse Practitioner. I told her what my symptoms were and she just told me, “That is not from Lupron.” She seemed annoyed that I kept asking questions. I had to call out sick to work the next day because my entire body hurt. It took me a week of calling everyday to even get the doctor on the phone and the only answer I did get from him was, “You must have a virus. Go see your regular doctor.”

I went to see my regular doctor. I told him my situation. He went home and researched Lupron on a website that he used for his own practice. He called me personally and said, “I don’t know why your doctor told you that this drug doesn’t cause fibromyalgia because it does.”  I will forever regret deleting that voicemail message by accident. Needless to say, my reproductive endocrinologist never saw me again. I, also, have not been able to work full time since October of 2007. My life was forever changed.

I was sent to a rheumatologist and was diagnosed with fibromyalgia. I was bed ridden for six months. I went from walking 2 miles a day to not being able to go up and down the stairs without pain.  All of my muscles felt like I had spent the day lifting weights when I had actually been in bed all day. I ached from my head to my toes. I had to resign from my job teaching children with Autism. It was too physical and I could no longer handle it. My entire world had been turned upside down. I was offered Lyrica for my fibromyalgia, but after my experience with Lupron I was terrified to try it. My immune system crashed and in the following months I was diagnosed with thyroid disease, fluid around my heart, Epstein Barr virus, vitamin deficiencies, and food allergies. In addition, the Lupron did nothing for my endometriosis. It was still growing and spreading.

In February 2013 my bladder shut down and I was completely catheterized. The belief was that the adhesions, scar tissue and cysts were causing the bladder problems. Therefore, in April of 2103, I underwent a full hysterectomy. My bladder, unfortunately, is still not operating on its own and I have also been diagnosed with a neurogenic bladder. This is concerning because I was born with only one kidney and a neurogenic bladder is one of the main causes of kidney failure. My urologist believes I may be a candidate for a bladder pacemaker which may or may not even work.

It has now been six years since I took Lupron and I still experience all the side effects from it. It is my opinion that this drug shut my immune system down and led to all of my other health problems. I have done so much research and numerous women are experiencing the same side effect. This NEEDS to stop!  I struggle everyday with the memory of the life I used to lead. It is a sad realization when your life stops, but the rest of the world keeps living. It sounds silly, but I would love to go back to the days where endometriosis was my only health concern. I have tried my best to become my own health advocate and it pains me to say that I have lost faith in those doctors who treat on a universal level, rather than a case by case basis. It is my hope that my story can help spread awareness and maybe help someone else out in the end.

There is not a day that goes my where I wish that I didn’t listen to my gut instinct that day.  I have lost my career, my health, my finances, and most of my friends in the process. I have been humbled by this and never take good moments for granted. I would love a day of no pain. I have to believe that if I keep fighting, there will be some light at the end of this very long, grueling journey. I hope the universe will allow me the opportunity to pay it forward.

To learn more about Kerri’s health struggles, click here.

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The Road to Baby: Fertility and Endometriosis Treatment

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Waning Fertility

I have always wanted to be a mother. Growing up around my grandmother’s day care, I relished taking on nurturing roles from a young age. I have always enjoyed spending time with children, reading to my younger cousins, and making up games for us play. I even earned my degree as an Early Childhood Educator, and have dreams of someday writing children’s books. My decision to work as a nanny while I finish my graduate degree has changed my outlook on my career goals, and I now hope to open my own preschool in the future. Caring for children has always come naturally to me, and has become my passion. At the age of 28, I am now four years past my peak fertility, according to several reproductive endocrinologists I have seen. Even though I am young, in the area of reproductive medicine, I have already lost the most fertile years of my life. This comes as no surprise to me. Knowing I have endometriosis, I expected that I would have trouble getting pregnant. I never expected how intense my road toward baby would be.

Endometriosis and Fertility

My husband and I were already together when I was first given my tentative diagnosis of endometriosis at the age of 22. In the same breath, my doctor assured me that she would get me pregnant, “even if we have to do in-vitro fertilization (IVF)!” I nearly fainted. Right then and there. I had barely graduated from college, and was still years away from starting a family! My fertility loomed over my relationship with my husband for nearly 5 years before it became a tangible part of our life together. My first laparoscopic surgeon informed us at my post-operative appointment that after trying birth control pills, progesterone, Lupron, and surgery to manage my then-stage III endometriosis, I was out of options and needed to get pregnant immediately.

My husband and I were given the choice to start trying for a baby, or go back on suppressive therapy, meant to eliminate estrogen and stall the growth of the disease. Pregnancy and breast feeding can offer a period of relief from endometriosis pain, since the body does not menstruate. For me, suppressive therapy options were Lupron or Mirena, both invasive and potentially dangerous treatments. I did not want to go back on easier methods, including progesterone pills, which my body could not tolerate. I had already tried progesterone for four years, and had suffered medical and emotional side effects. There was no easy choice.

I had wanted to start a family for years, but my husband and I were not in a place financially or otherwise to get pregnant, so we chose to go with Lupron while we got our ducks in a row, and told our families. Unlike my first experience with Lupron injections, this time, the Lupron did not help; I was still in excruciating pain during my period, and I even lost some hair and bone density. With our options at an end three months later, we started trying to conceive.

Although I was excited about becoming a mother, the following months were some of the most stressful of my life. With the looming return of my disease while being “untreated,” the immediacy of our need to conceive was overwhelming. When most couples decide to start a family, there might be a period of excitement, some adjustment, and taking the process slowly, while hoping that a positive pregnancy test (or Big Fat Positive to us online groupies) might happen easily. I jumped straight into charting my basal body temperature, cervical mucus, and peeing on sticks to see if my luteinizing hormone had triggered ovulation. I bought a stack of pregnancy books, and a few hard-to-come-by infertility books. So much for romance! I soon began using an app on my smart phone to track all the data for me, which sent me into an obsession with checking my chart every hour (for no reason whatsoever), in the hopes that today might be the day my precious egg would pop. But it never did.

Trying to Conceive: The Complications

Two months into my trying to conceive (TTC) journey, my obgyn suggested a reproductive endocrinologist. Most women get 6 months to a year before seeing a fertility specialist, but my doctor wanted me on the fast track. We were using a pregnancy as a treatment, a chunk of time without period pain, so we had no time to delay. One late evening visit later to a specialist at Brigham & Women’s, I was diagnosed with an anovulatory cycle (no ovulation), and given 5 days worth of the fertility drug Clomid to begin taking once my next period arrived. Five days after my 28th birthday, I started my first fertility treatment.

Unfortunately for me, the RE who prescribed these drugs did not monitor my hormone levels or the size of my follicles. I was told how to time intercourse, and to call the office when I got a positive pregnancy test or started my period. I ended up developing right side abdominal pain, something I was fairly accustomed to, and which the resident in my RE’s office found to be a nearly 5cm complex cyst. To my dismay, the RE could not fit me into her schedule for over a month. I was left to wait and see what happened. When my next period arrived (no BFP for me), so did the most intense pain and bleeding I had ever experienced. After nearly fainting from the blood loss, and doubling over in pain, a trip to the ER confirmed that the cyst had ruptured. The nurse at my RE’s office suggested taking a month off of fertility drugs to heal, then starting up again, but could not fit me in for an appointment for several more weeks.

I was shocked by how unimportant I seemed to this doctor. Why didn’t she feel like a ruptured endometrioma might warrant squeezing me into her schedule? Wasn’t my advanced disease serious enough? I guess she figured that was my obgyn’s job, but she had prescribed the fertility drugs that sent my hormone levels soaring, likely causing a flare in my endometriosis. Did she not feel she was somewhat responsible for my care? I felt abandoned. I never went back to that RE.

I decided to take that month, and do some research of my own. My obgyn suggested IVF when I saw her to follow up about the cyst. It was all happening too fast! I had always wanted to avoid IVF, which I found too invasive and highly taxing. Not to mention I was in my last semester of graduate school, and doing an internship. At this point, my husband and I had only been trying for four months. Most couples get three times that amount of time before considering daily injections, multiple embryos, and possibly life-threatening complications. Tears rolled down my face as I read books about other women’s experiences with IVF, and spoke to others like me on fertility forums about the process. I was not ready for this.

Excision Surgery

I began researching endometriosis and excision surgery, a technique few gynecological surgeons can perform adequately. It involves cutting the endometriosis out like a cancer to ensure that all of the disease is completely removed. After immersing myself in endometriosis literature and surgical sites, I considered several excision specialists from all over the US. Eventually, I found a plan that would work for me, and a doctor I felt I could trust.

I flew to St. Louis in June to have an excision surgery, despite obvious contention from my obgyn and the IVF specialist she recommended in her practice. They could not understand why I would fly halfway across the country when there were plenty of doctors here. My obgyn’s argument was that my first surgery had complications, and my recovery period was long. However, my gut told me that I had made the right choice. In the end, my surgeon found that my disease had progressed rapidly in the 11 months since my first surgery, far beyond anyone’s expectations. Besides the involvement of my bladder, bowel, ureters, rectum, appendix, and pelvic lining, the disease had ravaged my reproductive organs. Both of my ovaries had endometriomas, were being pulled behind my uterus, and attached to the back of my pelvis. My left fallopian tube was kinked shut. Adhesions, sticky bands of scar tissue, had distorted my anatomy to the point where nearly all of my pelvic organs were stuck together. My surgeon worked for six hours, even reconstructing my ovaries to avoid leaving raw tissue exposed and vulnerable to more damage. At my post-operative appointment, we discussed my options for fertility, and made a plan.

Road to Baby – Back on Track

Now, 10 months after starting on the Road to Baby, we are trying on our own naturally, without the help of fertility drugs. My first and only experience with pumping my body full of hormones was enough to turn me off of it completely! For me, the experience caused real damage to my body, and I am not eager to do it again. It feels like we are starting over, with a fresh canvas. We found a local fertility specialist who comes recommended by endometriosis patients like me who believe excision is the answer to this disease. He seems on board with our decision to wait a little longer before considering drastic measures. IVF may still be an option for us if we continue to struggle, or if there is any male factor infertility, something none of my previous doctors even bothered to test for. But for now, no one is pressuring us to jump in a race car and speed toward the finish line. We have time to take in the scenery and enjoy the ride together.

And that’s exactly how it should have been all along.

 

About the Author: Kelsey is an Early Childhood Educator and blogger from the Boston area. She chronicles her journey using sewing as a positive outlet while living with chronic pain and Stage IV Endometriosis. Diagnosed at 22, Kelsey has spent six years learning about her disease, and has recently become active in Endometriosis research and advocacy. She is a published poet who dreams of writing children’s books, and opening her own preschool that supports reading development. To read more about Kelsey’s daily dabblings in sewing, as well as recipes, preschool curriculum ideas, and information about endometriosis, visit her blog at www.silverrosewing.blogspot.com