Living with an Enemy-- Endometriosis
What is endometriosis?
Endometriosis is a painful, chronic disease that affects at least 6.3 million women and girls in the U.S., 1 million in Canada, and millions more worldwide. It occurs when tissue like that which lines the uterus (tissue called the endometrium) is found outside the uterus -- usually in the abdomen on the ovaries, fallopian tubes, and ligaments that support the uterus; the area between the vagina and rectum; the outer surface of the uterus; and the lining of the pelvic cavity. Other sites for these endometrial growths may include the bladder, bowel, vagina, cervix, vulva, and in abdominal surgical scars. Less commonly they are found in the lung, arm, thigh, and other locations.
This misplaced tissue develops into growths or lesions which respond to the menstrual cycle in the same way that the tissue of the uterine lining does: each month the tissue builds up, breaks down, and sheds. Menstrual blood flows from the uterus and out of the body through the vagina, but the blood and tissue shed from endometrial growths has no way of leaving the body. This results in internal bleeding, breakdown of the blood and tissue from the lesions, and inflammation -- and can cause pain, infertility, scar tissue formation, adhesions, and bowel problems.
A year of fighting...
2011 was a terrible year for me. Except for the last weekend in October when I married my husband. But otherwise the rest of the year is a painful blur. I spent most of the year in hospitals, doctor's offices, and on bed rest. I have hated needles my entire life, and this whole experience made me hate them even more.
Spring 2011. My husband and I were working for the same company and had just received our annual bonuses. We took said bonuses and my niece and nephew and went to Disneyland for a few days. When we came back, my husband came back to mounting issues in his location and the stress wasn't something he could physically handle anymore. We talked it over and decided it was time for him to quit and find something else. We could survive financially on my income until he found something. As they say, "No big deal." Approximately one week into this new arrangement, I was getting ready for work. I was tying my shoe and ready to run out the door when I fell over in pain instead. I had the worst stomach/pelvic pain I ever felt, and it left me unable to move and all I could do was cry. I had no idea what was happening to me. I didn't go to work that day. I went to the emergency room instead. I didn't go back to work for another five months.
in the ER
In the emergency room, I had to wait about 30 minutes before I was seen. I was crying and unable to find a comfortable position in the chair. I thought I was dying while ER workers talked about what they felt like having for lunch. I was daydreaming that my appendix was bursting because I had nothing else I could equate my symptoms to. My husband did his best to try to calm me down. What if this was a painful gas bubble and I'm about to get laughed out of here? They called my name. I was there for approximately 6 hours and had tons of tests done. They took blood and urine. They took x-rays, MRI, and a pelvic sonogram. They gave me morphine while I was there and sent me home with Vicodin. What was wrong with me? I had two cysts on my ovary which "shouldn't be painful." I had an ovarian cyst back in 2005 that required surgery but burst before my appointment. It didn't damage the ovary but I remember how painful the whole process was. Still not as painful as this most recent pain, though. They told me follow up with my gynecologist.
For the next two months I saw 4 gynecologists, my family doctor and visited the ER two more times. I was picked and poked but the search wasn't fruitful. I was tested for all known sexually transmitted diseases, pelvic inflammatory disease, etc. Each gynecologist I saw was more of a joke than the one before. One asked if perhaps the pain was in my head and was ready to refer me to a pain management clinic. My family doctor suspected I might have endometriosis. So with the last two gynecologists, I even mentioned that information and asked if it could be so. They said no, "good luck" and sent me on my way. My family doctor was becoming frustrated too. The only way to know if you have endometriosis for sure is with a laparoscopy. He couldn't do that procedure nor could he demand that someone else do it. I was hung out to dry (die). He wrote me a prescription for birth control as a temporary fix until I could get someone to listen to me. If it was in fact endometriosis, the birth control should alleviate the pain since it prevents ovulation.
It took awhile before I felt like the birth control was lessening my pain. During that time, I had gone to the ER again with the same pain that brought me to my knees and immobilized me. They ran every test as before and told me to follow up with my gynecologist. I begged them to do something else. I told them what my family doctor thought and how gynecologists were doing nothing for me, barely even listening to me. They referred me to a gastrointestinal doctor instead. After a consult, I was scheduled to have a colonoscopy to look for things like Crohn's disease or irritable bowel syndrome. It was only a colonoscopy, but I was terrified. I had surgery as a baby, but obviously didn't remember it. Surgery scared me. Being put to sleep scared me. Waking up (or not waking up) scared me. But I had to know what was wrong with me. Preparing for the colonoscopy was the worst. I spent the weekend before the procedure drinking a liquid poison that completely flushed me out. It would have been bearable if it didn't taste so bad. I really hope I never have to do that again, or if I do, medicine has advanced past having to drink the gross stuff. My colonoscopy went as well as it could, I suppose. They told my husband to wait in the wrong room and then I woke up without him and no one could find him. I also had to pay $500 dollars after insurance for the procedure (I was on medical leave by this point). The doctor said I had the healthiest colon he'd seen for a woman my age (yay?). He also noted that when he got to a certain part of my colon and applied pressure that I began making noise and my heart rate went up. He asked me very matter-of-factly, "Do you have endometriosis?" I began to cry and said I don't know, no one will tell me, no one will look. He said he was sorry to hear about my bad situation and said I just had to keep trying to find someone who would listen to me.
The next day I did some googling and found a surgeon. I gave myself a pep talk before calling. I wasn't taking no for an answer. "I'd like to schedule a consultation for a laparoscopy, please. That day sounds fine, thank you." I couldn't believe it. It couldn't have been that easy. The following week my husband took me to the surgeon's office. It really was that easy. He looked over my films from previous tests and couldn't believe that no one was listening to me. He did a quick pelvic exam and scheduled my surgery. I was thrilled! I couldn't believe it. Even if I found out I had something terrible, at least I had someone who was going to look. My surgery was scheduled for the first week of June. All of my fears revisited me, but I made it out okay last time. My husband took me and waited until he was told where to go wait. I was very panicky, especially when I was told the anesthesia was heavier than what is administered for a colonoscopy. So this wasn't really just like last time. They gave me a sedative to help calm me down. I don't even remember falling asleep but I remember waking up in more pain than I went in with. My surgery took longer than expected and the surgeon had to quickly leave for another surgery, so I didn't get to see him. I asked the nurse if he found anything. She said she was pretty sure I had endometriosis, as the surgeon removed some material, but that he could tell me more at my post-op visit. I finally had the answers! Kind of. Not really. I went home and rested. And boy do I mean rested. The laparoscopy required to incisions, one at my belly button and one just above my pubic hairline. My belly button had steri-strip tape and the other had a few little stitches that would dissolve on their own. Getting up and down was a real chore. I felt like I had been hit by a car.
I had about two weeks to kill before my post-op appointment. I did a lot of sleeping and resting, but also had to get up and move to promote healthy circulation and deter blood clots. Getting out of bed was really tough. My husband was still taking care of me, as he found work to do from home using our computer. To get out of bed, my husband had to kind of yank me to my feet by my arms. I say yank, because any slower and it really hurt my incisions. About 5 days post surgery, I began experiencing some chest pain. I normally had it in the morning and it would be gone later in the day. I thought it had something to do with the way I was sitting in bed with my laptop or perhaps just all of the "yanking." Have you ever coughed so much from a cold that you thought you had a broken rib? I figured I must have pulled a muscle in my chest in the same fashion. By day seven of this same routine, my husband offered to take me to the ER. I laughed and said I'm not paying the ER any more money to tell me I'm perfectly healthy. I took a nap instead. As the day progressed, the pain got worse and was traveling from my chest to the right side of my neck. What began as a pulled muscle type of pain, had now turned into feeling like someone was sitting on my chest. I could barely talk or breathe. I was becoming very scared, which only labored my breathing more. I gave in and let my husband take me to the ER. I was checked in with difficulty breathing and chest pain. If those aren't red flags, I don't know what are. I figured they would race me to a doctor asap. They very quickly put me in a wheelchair and parked me in the waiting room. I waited a half an hour. I was upset, but figured I had to blame myself a little too.
They did lots of tests. Some were new to me, some were old, and some I don't remember. After about 4 hours, they told me that I had approximately 15 blood clots in my lung. They were small enough that they passed through my heart, and that was the good news, if there was any good news. The bad news (for me), was that I was going to have to stay the night. I was scared all over again. I never stayed the night in the hospital. My husband stayed with me every night for a total of 8 nights. First I was in intensive care and then I was moved to telemetry. It was a terrible week. Every two hours, they had to come get blood, or do an x-ray or Doppler test, or give me a breathing treatment. At night, I had a difficult time sleeping. The pain would wake me up with a "stab" and I couldn't talk or breathe. I was getting morphine every few hours for the duration of my stay. I was hooked up to machines and IV medicine that would help thin my blood and start to dissolve the blood clots.
Level 3 Endometriosis
My husband had to cancel my post-op appointment since I was still in the hospital. I was discharged and continued to rest at home. I was put on a blood thinning medicine for life as they had found I had two blood clotting genetic mutations (factor II Leiden and lupus anticoagulant mutation). I also could never take birth control again. By the time I saw my surgeon, there was a lot of information to digest. He showed me pics from during the surgery and confirmed that I did (do) in fact have endometriosis. They assign it a level based upon severity, from 1-4 (4 being the worst). I was diagnosed with level 3, as the disease had spread and was growing on the outsides of my uterus and intestines. It had caused my intestines to adhere to the lining of my abdomen. I asked, “What do we do next?” He said women usually take birth control as a therapy (which I could not, unless I wanted another pulmonary embolism). Or they have a baby, hysterectomy, or both. We wanted a family, someday. We weren't even married yet. Finding out time wasn't on our side, we began to plan our wedding.
I had a follow up appointment with the hematologist who saw me in the hospital. We talked about babies and how a pregnancy for someone like me won't be easy and comes with risks. I began weekly blood therapy and was told to wait with any baby plans. At this point I was still on medical leave. I got a call from my area manager who informed me someone had been given my job (which is perfectly legal in my state after this much time has passed), but that my location was closing in the next month. I returned to work for approximately one week on light duty to essentially close down and clean out my location. It was very sad. I also was not transferred to another location. I had lost my job. Eight months later, I'm still looking for work.
As a Christmas gift of sorts, my blood therapy doctor called me a few days after Christmas to let me know I was healthy enough to try to become pregnant. This was great news! The last four months have been unsuccessful. In the back of mind, I worry that the endometriosis will make this difficult. It can leave women infertile or just make it very difficult to conceive. I realize that entirely healthy people can have months and months of trying under their belts before success, but it's in my mind from time to time. I try my best to stay stress free and leave it up to God. I've always been a person of faith and this whole experience showed me a side of myself I didn't know was there. I stayed pretty strong the entire time. I never fell into (as Anne of Green Gables would call it) the depths of despair. I never questioned God or asked Him, "Why me?" I really amazed myself. In the end, I am thankful. I am alive. Everything happens for a reason (or so I believe). Telling this story will hopefully help someone. If it does, then it's all worth it. I married my husband that October and I couldn't have married anyone better. He was so committed to taking care of me and being by my side, before we were married.
So how is my health today? I have good days and bad days. I have days where I have the same pain that brought me to the ER. My most prevalent, everyday pain is a surge of electricity that begins in my pelvis and travels down my legs. This is something to do with nerves, and while I had tried physical therapy to help alleviate it, nothing seems to help. Sometimes it's as tame as the pins and needles you feel when your foot falls asleep and other times it's a very gnawing pain. The worst pain is during my period when the imposter uterus lining is shedding in places it doesn’t belong. The blood and tissue have nowhere to go and the pain is indescribable. I often vomit for days just from the sheer pain.
Living with one disease would be enough for me to handle, but the blood clotting disorders make it difficult to. The endometriosis is going untreated in order to treat my disorders, which take precedence. I take blood thinners every day for the disorders and see a doctor every three weeks to check my levels. I have been admitted to the hospital two more times since my first stay (once in November for a week and another time in Dec for 24 hours), both for new blood clots. Untreated, I can feel my endometriosis progressing. I hope to be pregnant soon. My fear is that I'll be going to the gynecological surgeon like a dentist for him to regularly clean out the mess that endometriosis causes.
Endometriosis is sneaky. There is a lot about endometriosis that doctors just don't know. They can't tell from looking inside you how long you have had it or how quickly it can come back. Some women may have level 4 and not ever feel the kind of pain you would think level 4 would bring. Some women have level 1 but more pain than you would think would accompany the first level. It's tricky and every woman is different. Some women go on to have children, and like some sort of miracle, they never deal with endometriosis again. Other women are left infertile.
Heather Says: If you think you might have endometriosis..
- Educate yourself. Google and read until you can't keep your eyes open because no one else is going to do this for you.
- Find a doctor who is going to listen to you. If they aren't, move on. It took five doctors until I was making progress. Stand up for your body and your health, because no one else is going to. You know your symptoms and you know your pain unlike anyone else. So you have got to be your own lawyer and cheerleader.
- Be prepared to lose your job or put your school/career on hold. I didn't write too much about my employer and frankly because rehashing it always puts me in a foul mood. Everyone I had to keep in contact with-- from my employees to the insurance people who handled my medical leave-- were all terrible. Be prepared for your job and boss to just not care or understand. If doctors don't fully understand this disease, don't expect your boss to. You probably won't get sympathy or compassion. I hate to sound sexist or demonize men, but it's a woman's disease. Try explaining to someone how your uterus isn't properly working when they don't understand how a uterus works or what a uterus is in the first place. Good luck.
- Get your checkbook out. I have spent thousands out of pocket after insurance and still owe.