Chronicittles- My Endometriosis Story

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{Chronicittles Disclaimer: Those that are sharing their personal chronicittles stories are sharing just that- their stories. They are people that are struggling {or have struggled} with the ins and outs of a chronic illness and have found ways of surviving and thriving. Their stories are meant to encourage, inspire, and challenge those that are struggling but are in no way meant to be a physician's advice. Please be aware that this is a space for learning and encouraging and not a space that will allow critical comments of any persons story. A reader should consult with his/her physician regarding any information gleaned from these stories. Thank you so much for reading!}

Endometriosis

Some of you may be aware that March is Endometriosis Awareness month. Endometriosis is a disease "that occurs when cells from the lining of the womb (uterus) grow in other areas of the body. This can lead to pain, irregular bleeding and problems getting pregnant (infertility)." (US National Library of Medicine) I wanted to start off this Chronicittles Series sharing with you about my struggle with Endometriosis. As with any chronic illness the story can vary and my heart goes out to all of my endo sisters in their struggles. I hope that my story can be a little bit of an encouragement to you.

In the early winter of 2004 while I was attending graduate school in Virginia Beach, my life changed forever. It started unexpectedly amidst ordinary days that as I look back on now still seem surreal. As I know now, endometriosis had affected me for a long period of time but was about to become a front and center all consuming issue like it never had before.  Valentine’s Day approached and as I was single I was not looking forward to the holiday as many couples do. One of my friends invited me to join a group of people for a Valentine’s Day dinner and mentioned that a friend of his was coming in from out of town. Since I had no plans for the evening (other than eating chocolate) I accepted.

And I met the man that I thought I would marry.

He was handsome, intelligent, intriguing and most importantly he was a Christian. It was perfect! As he stayed for the weekend we had lots of time to get to know each other better and with every conversation I was convinced that this was my time for my love story to come true. In addition to this, although we currently lived thousands of miles apart our futures were going to be intertwined. I was completing my graduate courses in Virginia Beach and was planning on moving to England to complete my PhD program.  He was in the navy and was stationed to move to England the same month that I would be starting school. After the weekend ended we kept in touch through emails, phone calls, visits and life to me was perfect.

But the future did not end in the way my heart had hoped or dreamed. Nine months later, in November 2004 nothing was the way I had planned. Through many different circumstances my life was dramatically different than I had hoped.

First, I found myself NOT in England as I had imagined, but in Virginia Beach teaching at a local christian high school and financially I had to give up my dream of moving to England to do my PhD. Second, all of my friends had graduated and were involved in serious relationships while I felt ridiculous without a plan. Third, my family was dealing with several monetary and health issues that were serious. And fourth, the guy- with whom everything was wonderful- for a variety of reasons was no longer in the picture and I truly was heartbroken.

 In addition to all of this I had a persisting pain (which had once been intermittent in my life) now  in my lower right side that was growing steadily worse by the day. I saw several doctors, but was assured by all of them that the stress of the past year was the source of the pain. I believed the doctors, but in the back of my mind I had a suspicious feeling that something was terribly wrong.

Several months later in March 2005, a week before my birthday, after a day of teaching I was sitting on my couch lacing up my shoes to go to the gym with a friend when I felt like the insides of my body exploded. With no explanation at all the pain that had become a daily existence intensified a hundred times over. My friend found me collapsed on the floor and rushed me to the emergency room. The doctors found that I had ten cysts about the size of baseballs that had burst at the same time. I was told by the doctors that these cysts that had been growing had been the cause of  the intense daily pain I had been experiencing. I was given some pain medications, assured that I would be fine and sent home.

By May it became obvious that I was not “fine” as the pain had only grew worse on my lower right side. The pain continued to intensify until May 20, 2005 when I again ended up at the emergency room where the doctors informed me that I would have to have emergency surgery.  Through x-rays the doctors told me they had found a large mass the size of a football inside my body on the lower right side. It was so large that the doctors could not see several of my organs.  One ER doctor told me to brace myself for having an aggressive form of Ovarian cancer.  Another one told me that if I believed in God it might be a good time to start praying for a miracle.

I was fearful and afraid. I wanted to run away from the body that all of a sudden I had no control over. I was only twenty-five years old. The next day the doctors performed emergency surgery and found that the large mass was not Ovarian Cancer, but Stage IV Advanced Endometriosis.

When I woke up from the surgery I was extremely groggy but the first person I saw was a cute doctor whom I thought might be fun to go on a date with. That soon changed as the first words that he told me when I came out of the surgery was “welcome to a life of pain- you might want to just end your life now as the life you once knew is over.” (He didn't look so cute anymore.)

I am a strong person and I refused to accept this “health sentence” and made appointments with several additional doctors who unfortunately agreed with the doctors grave news. One of the doctors did hold out an olive branch of hope when he mentioned that I had some treatment options that included heavily prescriptioned drugs with side effects that sounded scary, but at least I would live without constant pain.

On one hand I was very happy to have a name to the pain that I had experienced throughout the years. On the other I was terrified of what this would mean. I was told by several doctors that many women (statistically seven out of ten women) have Endometriosis (or endo as survivors call it.) I learned that Endo is usually not a fatal disease and depending on the stage, case, and experiences of the girl, many women lead normal lives and would never be bothered with this strange disease. As I learned these facts I decided that I would be fine and tried every conceivable drug that the doctor suggested. I was determined to not let this ruin or run my life and that I was going to move on from this.

Despite the drug treatment options that I choose to pursue in May 2005 it became quickly obvious by the beginning of August that none of the ideas, suggestions, or treatments that typically work for women in my situation were going to work for me. I consulted with several additional doctors (around the world) and went to a well known endo doctor/surgeon (who was listed as one of the best) who prescribed heavier drugs and after several weeks it became obvious that these too were not going to help me regain my usual life. Because the medicines were prescribed at such high dosages they were extremely difficult to take because of  the side effects. Some of these side effects included nausea, my hair turning white, hair falling out and the hardest was losing some of my memory that to this day I can still not remember without looking at my journals. What was even harder was that I lost friends who wouldn’t or couldn’t try to understand what I was going through. By the end of August I was taking doctor prescribed pain medications at a very heavy dosage rate and despite being on several pain medication drugs it was difficult to move out of my bed or off the couch because the pain was so great. The latest drug option/regime a round had failed for me and it appeared that the surgeon had been right- there was nothing I had left to live for.

I can not describe the pain that I was in at that moment, nor the horror at having my parents help me with all of life’s needs. My life at twenty-five was wasting away in a bed in my parents home and my dreams were crashing down with it. I contemplated suicide as I thought I had nothing left to live for. I contemplated it desperately as I did not see an end in sight to the horror that I found myself in. What stopped me was the knowledge that God was alive. Psalm 46 and Psalm 18:6 came to my mind every time I thought about ending my life. The Lord’s quiet still voice and presence met me right where I was at and God became my closest companion. We continued to hope for a cure and we prayed day and night for something to change. I begged the Lord to be merciful.

My parents are the true behind the scenes heroes of this story. Despite my hopeless feelings surrounding my life and what was happening, they never gave up. Their persistence in hope and finding an answer is what changed everything. They were the cheerleaders on the sidelines never stopping their crusade.

At the beginning of September my parents and I found a way to contact one of the leading surgeons in the endometriosis field about my case and he agreed (after many examinations over records and tests) to perform surgery on me. In October, I flew across country with my mom, checked into a hospital and on October 25th, 2005 had surgery. The predicted one and half hour surgery ended up lasting several hours. Unfortunately what this doctor found was that the disease had spread so aggressively that he had to remove diseased parts of many of my organs or muscles. I was the worse patient that he had seen of my age group and because of the severity I was told that I ended up in several medical journals on the effects of this non-fatal disease.

After months in and out of the hospital, months of rehab and recovery at home I finally started to live a normal life-one day at a time, one moment at a time, and one pain-free day at a time. Many doctors from around the United States that I saw afterwards said my case was a miracle and several well-known doctors said that it must have been “something higher” that had healed me. It is about to be eight years in October and I am so thankful to share that I have had no side effects, no additional surgeries, no medicine, and no endometriosis problems. WHAT AN AMAZING BLESSING. Seriously amazing. There is not one day that goes by that I do not thank the Lord for being endo free.

As we recognize the heroes that are still struggling with endometriosis this month please consider giving to research for endometriosis or maybe just giving a woman with endo an extra hug! Thanks for listening and thank you so much for supporting endometriosis awareness month!

Encouragement, Thoughts, Advice

1. Research, Research, Research. I can't stress this enough. My first doctor (after I received the official diagnosis) told me two things that could have changed the course of my life for the worse. She told me (1) that I needed to get an immediate hysterectomy and (2) that endometriosis was a boring disease and that she fell asleep reading medical journals about it. As for point 1: After my extensive surgery in October 2005 I was shocked that one of the only places I didn't have endo was on my uterus. A hysterectomy would have been worthless. As for point 2: I thanked the doctor for her help and promptly fired her. You need a doctor who is familiar with your chronic illness. You need to find someone who can support you and help you through the long journey.

2. While I know that the surgery was needed, I also found great relief and help in natural remedies that I am convinced helped me with symptoms before surgery and also helped me heal quicker after surgery. I would highly suggest a doctor who believes in alternative methods(who is familiar with endometriosis) to consult with. I know that these are difficult to find - in fact I found mine in a totally different state so I had phone consultations but it was definitely worth the time, energy, and money.

3. I (and I know many others have also) found help and encouragement in endo support groups. I have several friends are brilliant, beautiful, and strong ladies who I met in a support group that had great practical advice. {Beware though of groups that only complain- you need support!}

4. I researched and read so much I probably got a doctorate in endo! But the book that I found most helpful:

  * Endometriosis: A key to Healing & Fertility through Nutrition (By: Dian Shepperson Mills) - Honestly, this is my all-time favorite. This book is one that I tabbed, highlighted, and found amazing.

5. The Endometriosis Foundation of America has some wonderful resources and they are doing incredible work to bring awareness of this awful disease.  

6. Be EXTREMELY sensitive. My heart hurts to share this point but as I have shared my story at different places around the United States I have found this point to be incredibly helpful to many people.  Two years after surgery and I was doing well(in 2007) I had a good friend who at the time was struggling with endo and desperately wanted to get pregnant. She had recently gotten married (about 11 months before) and she saw several doctors who told her that she needed to be patient but (understandably) she didn't want to. She finally found a doctor who was willing to do the surgery, she was extremely excited, and this doctor promised her that she wouldn't have scar tissue. I immediately had red flags because I was concerned about scar tissue (because it can be painful) and jumped to share the information that I had found (years before) about this doctor. What I never foresaw coming was the end of our friendship. She accused me of not understanding, making up lies about her doctor, and accused me of having no experience with her issue. My heart was in the right place. I had heard that this doctor had his patients in repeat surgeries every 11 months to several years and I didn't want that for my dear friend. Unfortunately I have heard that she has had several surgeries and still struggles. I share all that to say while I do not regret sharing the information that I did, I look back now and see that she was very fragile and the way that I overloaded her with my information was not helpful at all. While I thought I was helping and connecting with her, she viewed it very it differently. I was recently on the receiving end of some "excited advice" for the health problems I am currently having and let me tell you... it wasn't so fun. Honestly, I was annoyed. I know my friends heart and that friendship is strong BUT I definitely have learned to be extremely sensitive to anyone struggling with a health crisis and to listen. And then listen some more.

7. Stay strong. You CAN do this. YOU are not alone.