The Women's Health Issues We Shouldn't Be Ashamed to Talk About

A few years ago I had a co-worker who was a college student working towards becoming a physician’s assistant. She often talked about her desire to work in health care, particularly in a women’s health specialty, as she felt women’s health was understudied, underfunded, and often misunderstood. At the time, I thought she was just another young girl with dreams of grandeur.

It wasn’t that she wanted to pursue women’s health as a specialty, but that she really thought women’s health was an overlooked issue in American culture. I mean, we live in a country with resources like annual breast cancer screenings, a cornucopia of birth control options, and an abundance of OB/GYN specialists. We are fine, obviously.

I was so, so wrong.

I haven’t talked with her in over a year, but I do hope her drive and determination to work in women’s specialties is still being ferociously pursued. She had an understanding of a huge, and painful oversight in our healthcare system, and culture, that I didn’t see: women’s health is misunderstood, grossly overlooked, and rarely addressed positively and proactively. I now see how frustrating, challenging, stigmatized, and lacking in resources health care is for women. Unfortunately, I had to learn this the hard way.

Four years ago I went to my doctor for what I thought was a urinary tract infection (UTI). Basic, common, easily diagnosed by any mid-level provider or primary care doctor, and effectively treated with antibiotics. But it wasn’t a UTI. And so my journey began.

My UTI turned out to be tumors growing through my bladder wall. The tumors were removed, but revealed ulcer like sores in my bladder: a condition called interstitial cystitis (IC). IC is hard to treat, affects mostly women, and is widely misunderstood. Some of the symptoms are urinary frequency, urgency, and chronic bladder/pelvic pain.

After the tumors and IC diagnosis, to lesson the humiliation and bring some humor to the situation, I started referring to my bladder as Bladdy (I know, original). Most people get uncomfortable discussing “bathroom organs,” but somehow sugarcoating it make it acceptable to be out in the open. Friends and family began asking “How is Bladdy doing?” Which is easier to bring up than, “So burning urination every 15 minutes… that’s… fun?” Because of Bladdy’s IC diagnosis, after my surgery I was referred to a urologist specializing in female pelvic disorders. I was told I had intense pelvic floor dysfunction (PFD), which is a general term for pelvic muscles that are struggling. I underwent a year of electro-physical therapy, bladder installations, and Botox injections into my pelvic floor muscles. I was not as open about the PFD diagnosis as I was about Bladdy and her IC. There is not a great way to sugarcoat the humiliation of being probed, prodded, examined, and shocked week after week. So I kept it private, sharing it only with a few female friends and family members.

After a year of no improvement with my pelvic pain, I turned to my primary care doctor for help. She nicely suggested I see an OB/GYN as she suspected more was going on that urological issues. I did my research and asked for a referral to one of the best gynecologists in my area. My new doctor suggested I undergo testing for endometriosis. She pointed out that endometriosis, IC, and PFD often occur together. The surgery proved conclusive of her suspicions: I have endometriosis. In fact, it had spread all the way up to my diaphragm. They removed what they could, and placed an IUD to help prevent regrowth.

Endometriosis is far from rare, according to the US Dept. of Health and Human Services, more than 5 million women in the US have it. Oddly, even in its prevalence, it’s taboo to talk about. The awareness seems higher than other gynecological disorders, as it seems everyone does know someone with endometriosis, but that is where the conversation stops. Unlike my weekly treatments for IC and PFD, my surgery for endometriosis was hard to hide. The recovery of a several-hour-long laparoscopy is a few weeks. So the conversations about my surgery, and subsequent endometriosis diagnosis, was cautiously put out in the open. I found about 50 percent of the time, the response was encouraging and supportive. Unfortunately, the rest of the time, the topic was met with quick subject changes, uncomfortable glances, and/or rude remarks of belittlement:

Periods? Ew.

Heavy bleeding? Gross.

Lots of pain? Take a Midol.

Infertility? Do IVF!

Just, no.

So for a long time I stayed silent. Suffering with the confusion, frustration, and shame in utter solidarity.

Women’s health diseases are like a sorority that nobody wants to be a member of. Unfortunately, the sorority chooses you, and membership is not optional. Your rush period is years of searching for a diagnoses. Your initiation is round after round of humiliating medical treatments. Your bylaws aren’t actually written, because nobody is getting grant money to do research or write them down. Instead of a cool sorority T-shirt or jacket, you wear pain and embarrassment. Your group meetings are a parade of doctor’s appointments and trips to the pharmacy. And you can’t even talk about being in this sorority because many people don’t want to hear about it.

That being said, here is the kicker: there are so many members of this sorority! But because we all keep quiet, most of us don’t even recognize other members in our own social circles. I thought it was just me and my issues that stirred feelings of inadequacy and embarrassment. It’s not… these are their stories (cue “Law & Order” intro music):

My best friend had a baby and experienced bladder prolapse. She confided in me only because we openly talk about Bladdy. She confessed that she won’t discuss it with anyone, except her husband and me, because it makes her feel like an inadequate woman, like other mothers with judge her. She feels guilty, like she did something to cause this.

My 80-year-old grandmother mentioned to me about a year ago that she has urinary incontinence. She refused, despite my constant suggestions, to see a urologist. She thinks it is just the price of getting older.

Another friend of mine recently told me that she and her husband haven’t had sex more than a few times since their 9-month-old was born. Sex is extremely painful, even several months postpartum. My sister-in-law told me she misses a day or two of work a month because her periods are so painful they leave her dizzy and lightheaded. She became anemic and developed gastritis from all the ibuprofen she would take just to get out of bed.

An acquaintance heard from a friend about my Bladdy, and asked me for the name of my urologist. She said she lives in a state of borderline dehydration to avoid peeing because it burns so badly. She said she has been tested for bladder infections and STIs, but the tests keep coming back negative.

And these are just the issues they have the courage to talk about! Like me, I am sure many of them have more issues they aren’t mentioning. Issues that deeply affect everything from to their mobility to their employment to their emotional well being. I think we are all too scared of judgment, too nervous about the responses we will get, and too uneducated to know what is “normal” with our own bodies. It’s heartbreaking.

So what is the point of this saga?

My coworker was right, and she is a lovely, spectacular, genius.
Women are not being properly educated about health conditions and concerns.
Women’s health is so taboo to talk about, even when a woman knows something is wrong, she is still often too scared or embarrassed to address it with her physician.
In cases where a woman is brave enough to seek help, finding the correct specialist and correct diagnosis can, sadly, take years.
Many women with health issues perceive, whether correctly or incorrectly, that they will be harshly judged for their condition.
An open dialog in mainstream media about women’s health, with few exceptions, is nearly nonexistent.

Let’s fix this. (cue Rachel Platten’s “Fight Song”)

If you think something is wrong, say something to your doctor. If you don’t feel comfortable speaking up to your doctor, find a new doctor. Health care only works when there is mutual trust between you as a patient, and the person overseeing your health care.
Do your own research. Be your own advocate. It took me a long time to be in a position where I felt in control of my health. It is a brave and liberating step, and oh-so worth it.
Find support groups, or at least a few friends you can trust, to talk to about your issues. You don’t have to do this alone. Having an empathetic ear to turn to when you have a rough appointment, get a crummy diagnosis, or have a bad day is really nice.
If people are uncomfortable talking about female health, remind yourself that is their issue, not a reflection of the validity of your pain, discomfort, or diagnosis. Someone snapping off a quick (and eye-roll-worthy) answer to your health problem is a sign of
their immaturity, not a cue for you to feel self-conscious.
Finally, I encourage all of you to be brave and share your stories. It can be very hard to be vulnerable and share something as inherently private as your health, but we may all feel a little less ashamed, a little less alone, and have a little more influence if we join
our efforts together and say, “We are not OK, and that is not OK.”

Here are some resources for IC, PFD, and endometriosis:

http://www.mayoclinic.org/diseases-conditions/interstitial-cystitis/home/ovc-20251830

http://my.clevelandclinic.org/health/articles/pelvic-floor-dysfunction

http://www.mayoclinic.org/diseases-conditions/endometriosis/home/ovc-20236421

https://www.womenshealth.gov/a-z-topics/endometriosis

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