I’ve learned something in the last year. We women don’t talk about the intimate details of being a woman. And we should. For one thing, I might have known something was really wrong a long time before I finally got diagnosed.
A couple of years before November 2009, my usually light periods had steadily started getting heavier and heavier. I did some research and talked to a close friend who is my same age. We both agreed that it was probably just perimenopausal systems. I simply had the misfortune of being one of the heavier versus lighter flow cycle individuals.
On a trip to Europe in November 2009, I had an incident during a day trip to Amsterdam that frightened me a lot. Between the time we left Amsterdam (cutting the trip short because I had run out of menstrual pads after using up the 4 maxis I had taken for the day) and the 30 minute train ride back to our hotel in Leiden, I had overflowed the last pad so badly that it had soaked through to my jeans. Thank goodness it was winter and I had on a large black coat, which covered me from view. I didn’t realize how bad it was until I got back to the hotel.
Six months later, things had gotten steadily worse and really scary. I stayed home more and more. If I had to go out during my period, I would take several pads and be sure to plan my trips in 30 minute segments to make sure I could get home quickly if needed. I almost never stopped spotting between periods, which had never happened in my life before. I was weak and tired constantly and required once or twice daily naps just to function at any level of semi-normal. I had taken to keeping a clean pair of underwear hanging on the bathroom doorknob so that I could change between accidental soilings. That had become commonplace by now. It was terribly humiliating.
At one point in the late spring while in the shower, it took about 45 minutes before I could get out. My husband was out at an early meeting so there was no one to help me. I could not stop the heavy bleeding flow long enough to get out of the shower. After I finally managed to get out, I was weak, shaking, and completely exhausted. But it was that incident especially which finally convinced me that this could not possibly be normal perimenopause. I decided to find a gynecologist to determine what was happening to me.
You may ask yourself why I didn’t just dash off to the doctor the moment my period got heavier two years ago. It’s because I own a small business and cannot afford health insurance. Yes, the Affordable Care Act passed last year. No, the provisions that might help me won’t kick in until 2014. When you don’t have health insurance, you don’t run to the doctor unless you are really sick. I mean really sick. Fortunately, if you are open with your doctors (and remind them at every step of the way) you will get a discount. Doctors routinely give 10% off to self-pay clients. Labs are usually 20% off as are anesthesiologists, I discovered. Most are very willing to work with you. Surgery centers are another story (and another blog post).
I was pretty frightened by the summer of 2010, when I finally secured an appointment to see the GYN. I had to wait a month for the appointment, during which time I had two more really bad period incidents, including dropping enormous clots. I still remember the wave of incredible relief when I heard the GYN nurse tell me that I was “not unique.” Oh my god, you mean that other people went through this as well?!!! Why had I never heard this?
There were many, many tests to ensure that there was no cancer (something I honestly hadn’t even considered, believe it or not). After an endometrial biopsy, and sonogram (not the kind you are thinking of, I assure you), it was clear that the problem was “two fibroids and one cyst.” At least that is what they believed initially. We immediately scheduled surgery, but the preliminary blood test stopped all planning. I was anemic, surprise, surprise. It turns out that you cannot bleed almost constantly for over a year and maintain healthy iron levels. Who knew!?
So I waited three more horrible weeks, took massive doses of iron pills (which caused me constant diarrhea), and survived 1 last Night of the Living Dead period before surgery dropping a clot the size of a dessert plate, I kid you not. When the hysteroscopy and D & C were completed, the doctor came in to brief my husband and I. I still was pretty groggy, but she let me keep the photos of what she removed. As it turned out, I had an “abortive fibroid” right at the base of my vagina. It is as it sounds. This fibroid was so big it was actually trying to come out of my body which, the doctor believes, was causing the majority of the problems.
There were three other fibroids as well. What they originally thought was a cyst, turned out to also be a fibroid. Two of the others were removed, but the final fibroid (35% of which is outside the uterus) is tucked up behind my left ovary and inaccessible unless they yank out everything. Not medically necessary at this point and too expensive to do anyway. So this last bugger will remain to provide me with frequent cramps (alleviated with plenty of yoga, thankfully), and is a wait-and-see situation. The doctor tells me this type of fibroid has a tendency to shrink as a person goes fully into menopause. So, fingers crossed.
The most ridiculous part of this whole tale is that after I told people what had happened to me, I started hearing the stories. They usually started with, “Oh yeah, I (my best friend; my mom) had fibroids. They’re horrible…” Why don’t we talk about these things, ladies? When I explained to my mom what was happening, she said, “Well, I remember a time as a little girl when I was with my own mother trying on dresses and she just started gushing blood down her leg. I remember it scared the hell out of me.” My mom is 87 years old. This was the first time I had ever heard this story.
We need to tell each other about these things. We need to get our doctors to talk about them as well. We need to make sure that the young ladies growing up don’t have to suffer with the fear of the untold like we did. Like our moms and our grandmas did, not knowing.