Instead, I get cramps so bad I can't function for days on end. I'm talking pain-so-debilitating-not-even-heavy-narcotics-can-touch-it-agony-I-wouldn't-wish-upon-anyone-not-even-my-worst-enemy.
And no, I'm not exaggerating.
Ever since I was a teenager, I've struggled with painful menstrual cramps. But over the past year or so, they've gotten significantly worse. I can honestly say I've experienced a pain level of 10. And when it says "writhing agony", that is truly what it feels like.
I've passed out from the pain (and not just once). Thankfully someone has always been there to catch me (except one time in college my roommate found me on the bathroom floor and totally freaked out). I've been driving and had to pull over because the pain was so bad. I've been to the ER (several times). Just last month I was in the ER and after finding nothing else wrong with me - liver, kidney, gallbladder, and appendix all checked out fine - was finally given a shot of morphine. Only to discover that morphine doesn't really work for me, or at least it wears off much sooner than it's supposed to, despite the nurse insisting that "morphine works for everyone".
After being on some form of hormone therapy since I was 15, I decided enough was enough. No more pills, no more shots, no more blood draws, no more tests, no more waiting rooms, no more invasive procedures. This was in January 2011.
I had been on the pill (for pain management) since before I could drive. After getting married and finding out we probably weren't going to get pregnant the old fashioned way, we started seeing an infertility specialist. For anyone not familiar with reproductive medicine, it can seem like a big guessing game. What works for some women doesn't work for others. If a cycle ends in a BFN (big fat negative), sometimes the only "medical" advice you'll get is to just try again, which we did over and over. After more than 3 years, including 8 cycles of Chlomid and 4 cycles of IVF, my hormones (as well as my spirits) were a mess.
After the twins were born (via gestational carrier), my cramps were so bad again I could barely take care of them, I did 7 rounds of Lupron Depot. Lupron is an estrogen suppressant, so basically it "tricks" your body into thinking it's in menopause so you don't get a menstrual cycle. However, the price of NOT getting a menstrual cycle came with a whole list of things I DID get, including acne, hot flashes, weight gain, anxiety, and insomnia. After everything I had put my body through, I just wanted some time to do nothing. No hormone therapy of any kind.
After stopping the suppression shots, I didn't have a menstrual cycle for over a year. This was anticipated, but still ... Yipppeeeeee! And even after that, my cycles were sporadic (sometimes I'd go 6 weeks in between cycles, sometimes 2 weeks). For about 5 months, from July to October 2012, my cycles were every 28-32 days. At first I was excited, I had never experienced a legitimately "regular" (non-hormone induced) cycle. In the very back of my mind there was even a glimmer of hope that maybe I'd have less pain (or maybe, just maybe, I could even get pregnant on my own). But then my cycles were getting shorter and shorter. I had one that lasted 21 days, then 16 days, and then two cycles almost back-to-back. The LESS time I had in between the MORE I was in pain.
I'll never forget the Tuesday before Christmas, I was working and about half way through my shift I was so miserable I had to take half a Vicodin. By that evening I was in so much pain I couldn't eat or sleep. I spent the next 5 days almost completely bed ridden. When I did get up, I had to walk slumped over. I was taking pain pills every couple hours, and even that was barely taking the edge off. Christmas Day was a total blur.
The next day was more of the same. I called and got a same day appointment with Dr. W. She ordered blood work, she did an ultrasound in the office, and even referred me out for an x-ray. Everything was normal, which I guess was a relief, except I still didn't have a game plan for dealing with the pain.
By New Year's Eve I finally starting to feel better and I remember being so thankful that I could take my kids to the Zoo and not be doubled over in pain.
A couple days later, it started all over again. I think I had maybe been pain free for 3 days. Cramps and pain like I've never experienced. The pain never got below an 8, and hovered for days on end at a 9. I was mentally and physically at my breaking point.
Dysmenorrhea is the medical term for the cramping that occurs before and during a woman's menstrual cycle. For anyone with more than the normal amount of cramping, there's usually an underlying reason. For me, that reason is endometriosis.
Endometriosis is defined most simply as the presence of endometrial tissue outside the uterus. It's not supposed to be there, and from a medical perspective they actually aren't sure how or why. Making it even more of a mystery is the fact that you can't even confirm the existence of endometriosis without surgery, and (why yes, there's more) there isn't even a direct correlation to the more endometriosis there is the more pain you have. In other words, a woman can have a minuscule amount of endometriosis and a severe amount of pain, or a significant amount of endometriosis and very little pain. I happen to have both - a lot of endometriosis and a lot of pain. Still baffles me that we can create human life outside the human body but we don't know why tissue grows somewhere it's not supposed to and cause some women to suffer incredible pain.
There are theories, of course. The most common is that during menstruation some of the endometrial tissue backs up through the fallopian tubes and implants itself in the abdomen where it continues to grow. Another theory is that endometrial tissue is distributed from the uterus to other parts of the body through blood flow. Yet another theory is that it's genetic. In my case, a genetic predisposition is the most plausible explanation. My mom and maternal grandmother also had endometriosis and struggled to conceive. My parents were actually told by numerous doctors they would never be able to have children. When I came along 6 years later, one doctor actually told them I couldn't possibly be their child (not exactly what new parents want to hear upon having their "miracle" child).
The only definitive way to diagnose endometriosis is to perform a surgical procedure called a laparoscopy. Although my mom had all the symptoms, she didn't know for sure she had endometriosis until she had a hysterectomy at age 46. My grandmother had a hysterectomy even earlier at the age 38.
I actually had my first laparoscopy in November 2006 (after my first of two miscarriages) and I had so much endometrial tissue in my abdomen that it actually adhered to several surrounding organs, including my bowels, liver, and kidney. They were able to remove most of it, and the prognosis was that I should no longer have any problems getting (and staying) pregnant. Sadly that wasn't the case.
The one and only thing that can actually eliminate endometriosis altogether is a hysterectomy. A couple years ago I had proposed it to my previous OBGYN and he flat out refused. He claimed I was too young and still within child bearing years (never mind that despite all efforts I was still unable to get pregnant, had decided to use a gestational carrier, AND had 10 embryos still frozen from my past IVF cycles). Not too long after that we switched insurance carriers to Kaiser. My first appointment was with a midwife, and while I really liked her, she wasn't licensed to perform surgery. She did refer me to Dr. S and although her first available appointment wasn't for another 2 months, she was absolutely worth the wait.
I first met with Dr. S in July 2012. At that time we talked over my history and while she wasn't immediately opposed to a hysterectomy, she also wasn't willing to jump right in either. She wanted to run some tests and just get to know me. We talked at length over the course of several appointments and each time she made sure I understood that a hysterectomy was a permanent solution and there was no going back. We also talked about the possibility of leaving one ovary, even though I was fairly set on removing both. I think all along she wanted me to leave one ovary, but she never pushed me one way or the other. Not only are there cardiovascular and other risks associated with taking both ovaries, but I would also have to do hormone replacement - the exact thing I didn't want to do.
It wasn't until after back-to-back cycles in December and January, and she could actually see for herself how miserable I was, that she agreed to the hysterectomy. Surgery was schedule for March 1, 2013.
After one last discussion we decided to leave the left ovary, assuming it was clear of endometriosis and scar tissue. She would take my uterus, cervix, both fallopian tubes, and my right ovary. Surgery couldn't come soon enough.
More to come on the actual surgery, what happened just a few days before, and my recovery.
"As a disease, endometriosis can take away many additional aspects of a normal life. Mothers cannot reliably meet the needs of their children. Wives try to push through the pain. Grinding fatigue as severe as that experienced with advanced cancer is present in most cases. Bloating, moodiness, and bladder and bowel issues are common as well. Feeling like a vibrant woman is long since gone. Acting like the loving and compassionate woman, mother and partner that she truly is becomes more and more difficult. The stress on family relationships is common and real. Even at this stage, most women fight the disease, refusing to let it completely take over their life. You would most likely pass right by them in public, having no idea of the devastation they are dealing with. Most of the time they get up, put on a brave face and do their best to live a normal life."
- Dr. Cook, world renowned gynecologist who specializes in the treatment of endometriosis and pelvic pain
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