I’m a mid-thirty-something woman with a strange affliction: I have an incredibly annoying rock band wreaking havoc in my pelvis.
…At least, that’s how I like to think about it.
It all started with Mick Jagger. In early 2010 (after about 18 months of dealing with steadily worsening menstrual symptoms) an ultrasound showed fibroids in my uterus and a 9cm cyst on my left ovary. That’s about the size of an average newborn’s head. I scheduled a laparoscopic surgery to have the cyst removed and biopsied; and while I waited to be operated on, the cyst caused me a great deal of pain. A close friend thought it might help to name the cyst, so I had something specific to direct my energy and anger at. She named it Mick Jagger. I still have no idea why she chose that name. But as random as it was, the name stuck.
Mick Jagger was excised and found to be benign in April of 2010. My symptoms improved for a couple of months, but returned about three months after the surgery. I returned to the doctor that December and was diagnosed with severe endometriosis. She recommended a cervical ablation (essentially cauterizing the endometriosis tissue) and I scheduled that laparoscopic surgery for February of 2011. During that operation, my doctor found two new large ovarian cysts. This time, they were growing inside and around both ovaries, and that whole mass was adhered to my pelvic floor and my uterus. My surgeon was unable to remove the cysts without risking destruction of my ovaries, so she just drained them. I was grateful she preserved my organs, but the surgery ended up yielding zero results. My symptoms never improved, and when I went back in for a six-month check-up, the cysts had grown back.
At this time, my doctor referred me to a more experienced surgeon and I saw him in the middle of October, 2011. For a variety of reasons, I’ve seen four top GYN specialists between then and the start of this blog (early December 2011). From these doctors I’ve learned that: I have Stage 4+ endometriosis (of four stages); my condition is so severe that it will certainly continue to recur until menopause; I need to try to space out surgeries as much as possible; my uterus is the size of a woman who’s four-months pregnant because of the fibroids; and I have almost no chance of conceiving naturally. A couple of the doctors recommended a medication called Lupron, which induces menopause in order to hopefully shrink the cysts and “quiet” the endometriosis. It would be a temporary treatment to buy me time between surgeries and make an operation easier when I do have one. For a number of reasons, I hated this option. But all of my options were terrible: 1.) the menopause-inducing medication, 2.) a full open surgery (laparoscopic is no longer an option because the disease is so complex and advanced) that would attempt to remove my cysts and fibroids, but there is no guarantee that the disease won’t recur immediately or my organs won’t get mangled in the process, or 3.) a hysterectomy – the only definitive solution…but one that would leave me needing hormone replacement for almost 20 years.
At this time, I named the rest of the band in my pelvis. My uterus is now the size of a cantaloupe, when it’s supposed to be as big as a lime…so I named it John Mellencamp. I then began to think of the endometriosis tissue and adhesions all over the inside of my pelvis and abdomen as annoying boy band back-up singers whose pop songs get stuck in your head for days. My boyfriend asked me how I knew the band was all men. I responded by telling him there was no way a woman would cause another woman to be in this much pain.
And the pain is chronic. Pelvic pain, cramping, searing lower back and hip pain, referred pain in my shoulder, difficulty breathing, horrific periods that are too close together, digestive problems, weight gain, and constant pressure on my colon, bladder and diaphragm. Growing weary from the pain and symptoms, and after weighing my options for a few weeks, I scheduled a hysterectomy for the very end of December 2011. I’ve never wanted children (so it actually was a viable option for me) and I just didn’t want to face the possibility of semi-annual unsuccessful surgeries and recurring problems for the next 20 years. And as much as I hated the idea of hormone replacement (HRT) and am actually kind of scared of it, both doctors and women I know who have had hysterectomies told me that HRT really isn’t bad and I would likely be very happy with my decision in the long-run. But I never stopped feeling like the hysterectomy was just the “least terrible” option on a list of awful choices.
I have been dealing with a variety of health problems for the past 15 years, and have always been a huge proponent of holistic medicine – prevention-based health care that actually looks at the whole person in order to find the root cause of illness. So a couple of weeks ago, I had a lengthy appointment with an OB-GYN who practices Functional Medicine (essentially nutrition-based integrative medicine) and is a nationally-recognized expert on women’s hormones. She’s a brilliant physician whom I’ve known for several years, and I trust her implicitly. She explained endometriosis to me in depth, proposed an alternative treatment protocol, and told me absolutely every factor in both the “Have the Surgery” and “Don’t Have the Surgery” columns so I can make an informed decision. In addition, she made three keys points that I couldn’t stop thinking about after the appointment: 1.) My reproductive issues are manifestations of a much larger, more systemic problem that will need to be addressed whether I have surgery or not, 2.) I need to make sure I am completely gung-ho and ready for this surgery, because this is not an operation I can wake up from with any regrets, and 3.) The right time to have this surgery is when I feel like I’ve done everything I can…and only I can determine where the end of that road is.
I thought about little else for a week solid. I realized that I’ve never felt gung-ho about the surgery at all; what I was excited about was the prospect of alleviating my chronic pain. However, I couldn’t say with certainty that I wouldn’t have regrets. In fact, I had been concerned from the get-go that I would have them. Since I was young, I’ve always seen myself more as someone who would adopt children anyway, so I am at peace with the prospect of not being able to have children naturally. (Although, in the last month I’ve realized that consciously deciding not to have children feels infinitely different than having the option taken away from me.) But what I’ve realized is that I’m not ready to eliminate my body’s ability to make reproductive hormones, since I’m only 33 and would theoretically continue to produce them for almost 20 years. That’s what I was most concerned I’d have regrets about. As for the third point she made: Since I’d have to follow her treatment protocol either way, my decision to have surgery boils down to whether or not I’ve reached my absolute threshold of pain and frustration. After much soul-searching, I determined that I have not reached that threshold and can hold out a little while longer in pain if there’s a chance of me keeping my organs AND feeling so much better in the long run. I can still have the surgery at a later date if I so choose, so I figure I have nothing to lose…and so much to potentially gain.
So there you have it: How I came to make the decision to postpone my surgery and try an integrative treatment protocol for six months in an attempt to regain control of my health and heal my reproductive system. At the end of this half-year experiment, I’ll reassess. I’m going into this without any expectations or pre-conceived notions. I am fully aware that this approach may not yield the results I’d like and I could end up in the exact same place I am now. But if that’s the case, at least I can go into that definitive surgery knowing that I truly did do everything I could first...
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