When Horrible Stuff happens

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.

9 thoughts on “When Horrible Stuff happens”

  1. I’m glad you wrote about this and that you’re doing better. What a horrible experience.

    I have fibroids, too – had one removed from my cervix last year – as well as apparently recurring endometriosis. whee. My problems weren’t anywhere near as severe as yours, but I did lose 20 pounds that I really needed to keep on last year.

    I agree that this is something women should talk about. Fortunately for me, I have a group of close friends I can share this stuff with (perhaps against their wills, heh) and it’s really helped. It’s amazing how many of us share similar experiences.

    Good post. Hope you continue to feel well for a very long time.

  2. You are absolutely right. An its not just with our physical health–but EVERYTHING–parenting, mental health, finances, sex, and faith are all things that people shy away from talking about with other people–and they are also some of the hardest things to discuss with your own partner.

    We need to be a lot more frank and open about our own experiences and also, really listen to each other instead of jumping in and offering advice or judging another person when they bring these topics up. Because I think that’s often the reason women don’t want to talk. They aren’t necessarily embarrassed, but they want to avoid being judged or belittled–especially when they’re already dealing with something that is causing them pain.

    I’m glad to know you have made headway solving your health issues and that you decided to share your story with us.

  3. Thank you for writing this! This is really good information to have, I’ll even make a point of talking to my daughter about it.

  4. It is pretty ironic that one function of our communities and families is supposedly to help with these sorts of issues, and yet these issues are the last thing family members and community members want to talk about with each other. I had a man in a social club come to me privately and thank me for writing openly in my blog about depression and bipolar disorder. Apparently, he and his wife had recently been diagnosed, and he was having trouble finding anyone with whom to share information. It’s a terrible shame that many people suffer for a long time simply because they don’t want to be accused of “oversharing,” or become otherwise stigmatized.

    Thank you for sharing this information! I worked in my Dad’s OBGYN office for years, and although there are numerous pamphlets out there telling women to consult their doctors if their cycles change, most of us don’t for all sorts of reasons. You are my hero today!

  5. Something important for all women to know about. I have fibroids, but they have never given me any problems and I am post menopausal @ 59. I’m also an RN so I am aware of what to do when/if I have vaginal bleeding.

    This must have been so scary for you. I’m glad you are better. The whole health insurance is a horror story. I can’t even go there without getting upset.

    Thanks for the information.

  6. Thanks for posting this, and I’m glad you’re doing better. I disagree that this topic is for women only. A man needs to know what is normal and not normal for the woman in his life (“Honey, why do you keep putting your panties on the doorknob?”) and when to urge her to seek care.

    A friend of mine had abnormally heavy bleeding that turned out to be due to endometrial cancer. And during the surgery, the doctors discovered that she also had ovarian cancer that would probably have gone undetected otherwise. (So yay!? for endometrial cancer!) She’s been cancer-free for over 5 years, but is still dealing with the effects of radiation on her pelvis.

    So, ladies and gents, both: talk to each other, and take care of each other, whether it’s the lady overflowing her pads, or the gent getting up 5 times a night to pee. You’ll love each other longer if you do.

    (P.S. I’m not saying your husband didn’t take care of you. If you didn’t know, how would he?)

    1. Hi MsJ,
      I have this area as for women only because my assumption is that most men don’t want to hear the gory details.I also wanted women to feel comfortable sharing. I am incredibly fortunate to have a loving, caring, and supportive husband. He was my rock through this whole ordeal.

  7. Since you’re moderating comments, I hope you’ll see this and delete my previous. I don’t know you, I didn’t realize what page I was on. 😉

    Still, thank you for writing this. I’m going to share it with my mother.

    xoxo,
    LJ

  8. I’m just going to add to the thank yous. Talking about “women’s problems” didn’t really happen in my home when I was growing up. My mother noticed that I’d finally gotten my period and started leaving boxes of pads by my bedroom door. We never talked about it at all. She assumed I’d learned what I needed to know in health class, and I figured the same and didn’t bring it up. In retrospect, maybe that wasn’t the best decision on either of our parts.

    Thanks for writing about fibroids. It’s not a problem I’ve had to deal with, but at least now I have an idea of what to look for. I hope you don’t have to deal with them anymore.

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