Four times in September I was seen in the Emergency Room presenting with pain and nausea, and four times I was sent home with nausea medication and undiagnosed abdominal pain. One month later I had been diagnosed with endometriosis (tissue similar to lining of the uterus growing outside where it is supposed to), and advised my best chance for the diminishment of pain was to have a full hysterectomy. I had waited for an answer for almost twenty years, but I was not prepared for that answer.
Every month since I was thirteen I would have to spend the first day of my menstrual cycle in bed because I was in excruciating pain. My parents were concerned and took me to my doctor, who diagnosed me with an ovarian cyst. I was sent home with pain medicine and would spend the day in bed curled up with the heating pad. This would become a pattern in my life. My doctor put me on birth control pills at fourteen to stop the severe cramping, but that did not fix the problem. I learned to just expect it and I knew I would be suffering at least one, if not two, days a month. As I got older the pain got worse, and I started to experience excessive bleeding, migraines, nausea and vomiting as well. Although I did not know at the time, each of those are symptoms of endometriosis (the two most common being pain and infertility according to the National Institute for Child Health and Human Development.)
I was always on the go in high school, and had an active social life for most of the month. I knew what days to plan around. Overall, I really did not think too much of the pain and nausea because I had other friends who dealt with severe cramps as well. I was hospitalized a few times over the years when my doctor though I may have appendicitis, or a ruptured cyst, or when I was just not able to hold anything down and became dehydrated.
As I aged into my twenties, my symptoms worsened and the doctors always wanted to diagnose me with the same illnesses. Appendicitis was popular (until the CT came back normal), ovarian cysts (which actually did show up on several ultrasounds but were never large enough to warrant surgical intervention), pregnancies (when I was not sexually active), IBS, kidney stones, diverticulitis, and ulcers. I had doctors tell me they thought I was exaggerating the pain, or that I just needed to get used to pain from my period. This is not uncommon. Symptoms of endometriosis are often mistaken for other ailments. The medical bills mounted, but when the pain got too extreme me or I knew I was dehydrated from not tolerating food, I would have to visit the Emergency Room for fluids. This followed me right into my thirties.
Over this past summer, my quality of life significantly started deteriorating. The pain was more frequent, I was not able to sleep, I was losing energy and all I did was work. I lacked the energy to explore and enjoy the new city I had moved to after work. I didn’t want to date. When the weekends came my routine returned of laying on the couch with my dog and the heating pad to watch television; I had lost the energy to even read which alerted me that something was definitely wrong.
Following my ER visits in September I had consults with a GI, urologist, gynecologist and surgeon. My second home that month was the CT scan room, and my best friend became the ultrasound tech for as many times as I was sent down to have an ultrasound. And each time, she would assure me nothing was wrong but comment she could not find my left ovary or appendix during the ultrasound. When you are on a hospital table, hearing that one or more of your organs is not visible? It is a bit concerning.
By this point I was frustrated and scared because I was in constant pain and bedridden. I had to postpone my work plans which were disappointing. I dropped my graduate school classes. My best friend was going through a crisis and I could not fly to be there for her. My life essentially consisted of going from doctor to doctor. I was constantly on the computer researching my symptoms. Finally, while passing by my GI doctor, I mentioned I had done a search on my symptoms and they matched up with endometriosis. He agreed with me and said he would make a note in my chart before I met with the gynecologist.
The gynecologist agreed the symptoms sounded like endometriosis and we scheduled a diagnostic surgical laparoscopy for the following week. The only way to get a true diagnosis is to have the laparoscopy where the doctor surgically looks at the organs for signs of endometriosis and its growths; if there are growths they are biopsied and removed.
The following week I believed that finally, after 20 years I would be getting a diagnosis. I showed up tired the day of my surgery but eager to find out what the issue was with my constant pain in my lower right abdomen. I do not even remember making it to the OR before the anesthesia kicked in (and allowed my first good sleep in a month); when I woke up I was both elated and disappointed. The doctor was gone and nobody had told my family anything except there was some endometriosis he scraped off and the rest would be taken care of with medicine. There was some relief–“See! I wasn’t making it up!” I wanted to tell the doctors that had doubted me (it generally takes up to 9 years for a correct diagnosis due to the vague symptoms), but I wanted to know exactly what my doctor found.
I had a painful recovery and talked the surgeon’s nurse into allowing me to see him Monday. My feet had swollen to the point my ankles had disappeared, I was in terrible pain and I could not keep any fluids down. My doctor did not have the best bedside manner as he would not explain so much as tell me what I was going to do–receive a shot to clear up the rest of the endometriosis. When I asked about the side effects I was told it was what treated endometriosis and the side effects were minimal. What the surgeon did not tell me was what stage endometriosis I had, any details of my disease, my chances of pregnancy, or the fact the next month would be hell.
Upon my own research I discovered Lupron is a medication that decreased estrogen. The shot of Lupron (a Gonagotropin-releasing hormone [Gn-RH] agonists and antagonist) turned out to be a $400 monthly injection that basically tricks your body into believing it is pregnant and suppresses the endometriosis.
Lupron works wonders for some patients, and is poison for others; it turned out to be poison for me. I ended up hospitalized because I could not keep down any food or fluids for a majority of the month the medication was in my system. My doctors from that time, who I have since declined to go back to, believed I needed to just live with it. I have come to realize most of the male doctors in my area are Good Old Boys, and have no idea how to treat any complication in women’s issues.
I have since switched my treatment team to women and they know what they are doing. They figured out what was wrong with my not keeping food down, that there were alternatives to Lupron, and actually went over the surgical notes so I knew what stage I had (Stage One is good, Four is the worst. I am a Three/Four). Apparently my endometriosis is moderately to severe. My left ovary that the ultrasound tech could never find? It was glued outside of the wall where it was supposed to, along with my right ovary which caused the pain. I had deep implants (growths) on my pelvic lining and adhesions (scar tissue). Basically, at this stage it is really difficult to not only conceive but carry a baby. I also found out there is nothing I did that brought this on–it can be genetic, but there are not any factors I had control of that cause it.
I would rate my quality of life right now as fair . I am still in constantly uncomfortable, trying to wait out this Lupron shot, which generally lasts up to six weeks. The pain medication is not really touching the actual amount of pain I am in. I still have not been able to explore the new town I live in, or meet new people, or go on dates. I can barely walk my puppy. My doctor and I have a plan, though. Right now she is treating the symptoms until the Lupron wears off; I am going to try a pack of birth control pills, which has never helped in the past but I want to try something before going to the drastic last step. And if it does not work again, my last option is a full hysterectomy.
I have no children yet. I thought I had plenty of time for children. I never knew that the very part of me that allows me to have children is the same part of my body that would betray mr. The symptoms of my disease seemingly worsen every year. If I do opt for the hysterectomy, my doctor has advised it will have to be a full, not partial, and I will lose my ability to have children and go through menopause at 32-years old. I have thought about it, made a pros/cons list, and talked to every doctor and nurse–they all have the differing opinions. It all comes down to whether or not I can live with the pain and the diminishing quality of life, accepting the loss of activities I once loved because I am in pain or too tired.
My outlook of life has certainly changed. I am young and have so many opportunities–I am working on the startup of a new business, taking classes I always wanted to take, and just basically going wherever life took me. I knew what I wanted to do, and I was doing it. I had plans to visit old friends. I wanted to join some volunteering activities and meet new people. Then everything changed within the span of one month — Luckily, I am able to write because of my laptop. And support groups exist. There are not any in my community but they do exist online, and it is very comforting to know others are going through the same situation and can relate. We all seem to use them after doctor visits, because a lot of doctors are not educated in this disease.
The biggest question for me is whether or not to move forward with the hysterectomy. I have not met the man I would like to marry yet. How is he going to react when I tell him I cannot have children? Then I look at the other side– I just spent this weekend too sick to eat, and a short trip to the store left me in such distress I had to take pain pills and was wiped out for the rest of the day.
The hysterectomy question is the one I will need to answer soon. I have been hoping and praying for any other solution, but I have a feeling I am going to be bringing in 2011 with a surgery.
Jelovesek, F. “Hysterectomy for Young Women with Endometriosis”. http://www.wdxcyber.com/ Retrieved 13 Nov 10
“Endometriosis”. National Institute of Child Health and Human Development. http://www.nicd.nih.gov/publications. Retrieved 09 Nov 10
“Treatments and Drugs”. www. Mayoclinic.com/health/endometriosis. Retrieved 15 Nov 10.