Reproductive Choice: It’s Not Always About Abortion


A decade ago, I rolled over in bed one morning and felt some sort of mass in my abdomen.  I rolled onto my back and pressed my hand against it – yes, there was something real, solid and frightening in my abdomen.  I had been experiencing heavy bleeding during my periods for several months prior and had put off going to the doctor.  I was always too busy, had too much on my plate and was too willing to prioritize everything and anything over my yearly physical exam.  I lay there, anxious and afraid, unable to ignore the solid something beneath my hand.  So, I jumped up and immediately thought about where I could go to find out what this thing was and if it was cancer.  It was a Saturday and my doctor’s office was closed, so I went to my local Planned Parenthood and asked for an exam.  I was very emotional and the staff was very patient.  After the exam, I was told that I most likely had a uterine fibroid and needed to see my gynecologist for diagnosis and treatment.

I remember asking what the hell a uterine fibroid was and being told that uterine fibroids are tumors that grow within and outside of the uterus, that they pose their own health risks but aren’t cancer.

I thanked everyone at the health center.  I think I might have thanked them all twice.  Then I went home, sat down on the couch next to my dog and cried.

I was relieved but not fully, because uterine fibroids were a mystery.  Later that week my gynecologist confirmed the diagnosis of uterine fibroids and we began to work through a treatment plan.  I did a lot of research.  There were ultrasounds and blood tests and a serious discussion of diet and my general health.  What I remember most was that my doctor and I had a great dialogue about my condition and my life.  We discussed whether I planned to have children through a pregnancy.  I did not and that has not changed. I remember the options that were on the table based on the size and location of my tumors and my age and health.  In a matter of days “choice”, so often seen as only having to do with pregnancy or abortion, was suddenly a huge factor in my life.  I wasn’t pregnant, trying to get pregnant or even trying to protect my future ability to get pregnant but choice meant the world to me at that moment.

I entered into a new world of doctor’s appointments and insurance battles.  Many of the treatment options for fibroids are classified as fertility treatments and every month my insurance company would reject my claim because they didn’t cover fertility treatments.  My doctor’s office guided me through the process of challenging the rejection, confirming that my treatment was not a fertility treatment and then resubmitting the claim.  I can’t imagine having to wage those battles without the assistance of the staff at my doctor’s office.  As it was, I found the week long back and forth debate that took place every month like clockwork emotionally exhausting.  At one point I found myself screaming at the insurance representative in my cube during work, demanding that she acknowledge there are more reasons to treat fibroids than to prepare for a pregnancy.

My debates, arguments and battles have not been limited to insurance representatives.  Over the years I’ve made a study of how friends have reacted to my treatment decisions.  I’ve had self identified pro-choice friends confront me for taking the pill to manage the heavy bleeding during my periods because they feel fibroids can be managed just fine through a special diet.  I’ve had other friends act as if they’d stop talking to me if I chose to have a hysterectomy.  When I decided to have my fibroids surgically removed after a year of treatment, a co-worker applauded my decision because it “preserved my reproductive future” while another expressed concern over the risk of my doctor having to perform a hysterectomy if there were complications.  I filtered all the advice through the understanding that their hearts were in a good place, but they always seemed to ignore the fact that I was and am an active participant in my treatment.  That’s what choice is all about, having the ability to partner with a doctor to make decisions that are right for the individual.  That doesn’t mean those decisions would be right for someone else, but that’s the point lots of people missed.  This was about my health and my uterine fibroids.

When I explained that I didn’t want to have children and that I considered hysterectomy a future option, some people dismissed my claim and others even went so far as to assure me that I’d change my mind when I got older or that I’d change my mind once I had a baby.  Suffice it to say, I was shocked.  The decision whether or not to have a child is a huge part of reproductive choice, yet here were people acting as if my choice not to have children was flimsy at best and subject to change by actually having a baby.

What stood out then and stands out now is how challenging truly supporting choice is.  Some pro-choice people struggle to respect the doctor patient relationship, too.  I’m not saying that their struggle is the same as anti-choicers who lobby to restrict a woman’s access to birth control or abortion.  Many of my friends referenced the history of black women who were given hysterectomy as the only option to treat fibroids and their words of caution were coming from a place of concern based on that history.  My situation was different.  The fact remains that, when a woman has a reproductive health issue, lots of folks jump up with lots of opinions and a lot of those opinions assume the patient hasn’t thought the situation through or is too emotional to make a sound decision.

I’ve thought a lot about the privilege of choice.  I have health insurance and I live in a city with a lot of pharmacies and health care providers.  I can consider multiple treatment options that are covered through my insurance.  I go to my pharmacy to pick up my birth control pills and rarely wonder if the pharmacist will refuse to fill my prescription because she or he assumes I’m getting them as birth control and has some moral objection they’ve decided trumps the legitimacy of my legal prescription. 

When the Missouri State Legislature considered a bill that would have protected pharmacists or pharmacies that refused to fill prescriptions because of a “moral” objection, I thought about my situation.  I imagined walking into my local pharmacy and having someone decide to refuse to fill my prescription because they assume everyone on the pill is taking it as contraception.  I had a waking dream of confronting the pharmacist with the fact that, without the pill, I bleed for an average of 14 days straight.  Prior to regulating my periods with the pill, I was dangerously anemic and suffering from exhaustion.  I could see myself demanding to know where they get off forcing me to explain the who, what, where and why behind my prescription.  It never happened.  The legislation never passed.  But I was prepared for the reality of some fellow Missourian wielding power in the name of religious freedom, trying to take away my freedom of choice.  A freedom of choice that had nothing to do with preventing pregnancy and that shouldn’t have been up for discussion even if it did.

Having uterine fibroids isn’t rare.  Since my diagnosis, I’ve met many women who have them and who have chosen different treatment paths.  But having uterine fibroids has provided me with a different view of reproductive choice and reproductive justice.  I’ve worked in partnership with my doctor to protect my right to health.  It’s been a unique journey and I am now considering the next phase, which will likely include a hysterectomy.  I know that a lot of people will have a lot of opinions and advice and I welcome the feedback as long as it is given with respect and with the understanding that the ultimate choice will be mine to make.  As a reproductive justice activist, this is what I fight for every day.  Choice should be respected as a right, not a privilege.

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  • juliejulie

    Thanks so much for sharing your experiences.  I appreciate the reminder that we advocates for choice really MUST accept everyone’s personal choices for their own treatment.  Well done, Merritt.  Thanks again.

  • lauracarroll

    Wow, what a story. One to definitely share. It makes me think of the many women who contact me about their struggles to find a doc to do a sterilization procedure (especially if they are under 40–somehow the doc thinks s/he knows the woman better than she herself), and pro-choice friends and loved ones who ardently pressure them not to do it because like others told you, that surely they’d change their mind about not wanting kids.  You are so right. Reproductive rights is about all aspects of our reproductive health and reproductive life.  It is not just about “when” we will reproduce, it also includes “whether” we will, letting each woman make that decision for herself, and not judging her for what she decides is best for her.   Laura   http://lauracarroll.com

  • nnamdi

     

    Hi Merritt,

    Thanks for sharing your story. Uterine Fibroids is an issue that plagues many women. It is the leading cause for hysterectomies. I co-founded The Fibroids Project (FibroidsProject.com) along with an amazing young lady that suffered from fibroids. Our mission is to make life easier for women with fibroids. We use our website to connect with various physicians and other subject matter experts in order to provide women with a full range of options and information about fibroids.

    We have a few interviews with leading physicians posted. I wish you the best.

    The Fibroids Project: http://www.fibroidsproject.com/

    Twitter (@FibroidsProject): http://twitter.com/fibroidsproject

    Facebook: http://www.facebook.com/fibroidsproject

    Cheers,

    Nnamdi

     

  • crowepps

    A freedom of choice that had nothing to do with preventing pregnancy and that shouldn’t have been up for discussion even if it did.

    This is the heart of the problem — the decisions of individuals about reproducing, not reproducing, facilitating reproducing, preventing reproducing should be REMOVED from the public agenda.

     

    Society has a legitimate role in public discussions about what is best for socety.  Society does NOT have a legitimate role in deciding for, punishing or shunning individuals who don’t conform.

     

    While individuals may ask for and value advice from their partner, doctors, family and close friends, the final decision always must rest with the person most vitally concerned with it, and asking for the opinion of others is NOT the same as convening a town council to vote and make the decision.  The opinions of strangers are less than worthless, they are RUDE and INTRUSIVE, even when that person has a pharmacy degree or a ‘strong religious faith’.

  • gina-crosleycorcoran

    I’m sorry that you’ve had to face this challenge.  Uterine Fibroids aren’t fun.  Sometimes they are completely benign but in other cases they require a lot of treatment.  I did want to mention that there is much controversy surrounding the hysterectomy issue today because (much like the cesarean issue) doctors can be quick-to-cut without thinking about how a missing uterus will effect a woman’s long term overall health.  Our reproductive organs play a huge role in the way the rest of our body functions.  They do more than produce offspring.  This could be one reason your friends/coworkers may have questioned that decision, but like you said, it’s yours to make.  I would only recommend some further research into the long-term impact of hysterectomy and consider that a last resort if there is any other way to cure you without that measure.

  • crowepps

    I’m not aware of any long-term health effects on the body’s over-all functioning that result from the removal of JUST the uterus.  I do know removal of the ovaries has profound effects because of the lack of hormones, but that is not generally required for fibroids.  Could you provide a link to any information about negative effects of removal of JUST the uterus?

  • arekushieru

    my mother has had a hysterectomy, it was a radical hysterectomy, so her uterus and ovaries were removed.  But, I remember my mother mentioning that the removal of her uterus caused some of her other organs to shift, which has caused her a number of problems through the years afterwards.  And, yes, it was due to fibroids on her ovaries.

    I often wish, though, that women could have their uteruses removed without having to endure such an invasive surgery or so much hassle.

    However, beyond that, I don’t know much.  But I can look on the interwebz and see what I can find for you, if Gina is unable to within the next little while…?

  • carolyninthecity

    this is from the National Women’s Health Network website

    http://nwhn.org/hysterectomy

    Long-term Risks
    Removal of the uterus and ovaries at a young age (early forties and younger) may increase risk of heart attack, and (even when ovaries are not removed) chances of experiencing an earlier menopause. Hysterectomy has also been associated with urinary problems, such as increased frequency of urination, incontinence, fistula, and urinary tract infections; sexual function problems, such as decrease in sexual sensations and lack of lubrication; depression or psychological stress (stemming from feelings associated with losing reproductive organs); hormone deficiencies, which may be caused by removal of the ovaries, or a decrease in blood supply to the ovaries.

  • crowepps

    It’s possible to do hysterectomies with laparoscopic surgery which isn’t all that invasive.  Haven’t needed a hysterectomy but they removed my gall bladder through a couple little slits a few inches long that healed up rapidly.  I was AMAZED!  The few long term effects removal has caused aren’t anywhere near as bad for my well being as the symptoms from it being in place.  Maybe the balancing of whether any long-term ill effects of hysterectomy are too much depends on how much trouble the fibroids are causing?

  • arekushieru

    You could be right, as usual!  They were worried that the fibroids could be cancerous.  So, it was the potential rather than the actual that led to them making their decision.  Originally, Mom was just going in for a ‘normal’ hysterectomy but was warned they may change their mind once they had gone in.  I guess it looked too bad, so they did.

  • crowepps

    Personally I think I’d take ‘possibility of heart attack years later’ over ‘cancer soon’.

  • arekushieru

    And I don’t disagree with you, but my family has a history of heart disease, including cardiomyopathy, which one of my uncle’s had died from.

  • crowepps

    I only have one living ‘older’ relative.  Every parent, grandparent, aunt, uncle, greataunt, greatuncle are all dead from one thing or another.  Just like we’re all going to be eventually from one thing or another.  Continuing to suffer from a health problem that is severely impacting one’s quality of life now just in case the treatment to solve that problem might create issues down the road is to live miserably in the present so that a person can remain deluded that by avoiding specific risk factors they’ll live forever.

     

    They always say “Quit smoking, it’ll kill you.”  Nobody ever says “Quit smoking, get Alzheimer’s instead.”

  • arekushieru

    I am statistically at a high risk of getting cancer, but I am just as likely to get some kind of heart disease.  My dad has had colon cancer.  So did his older brother, who has also passed away (believe me, I only wish I were exaggerating but, as my dad has said, rather morbidly, a couple of times, now, “I keep getting everything and my brothers’ all die from it”, but, so far, none has died from a diabetic condition, yet, and, fortunately, no one has been diagnosed with it, either, including myself), and it was relatively painless (which is a blessing), up until the end, although it had spread to most of his major organs.  I am more afraid of the heart disease because it struck my dad’s younger brother more painfully than the cancer struck my dad’s older brother.  It is those things that factor in, after all.  The fears and experiences that have informed our lives, otherwise, why be afraid of heart disease or cancer, at all?  

  • crowepps

    Oh, definitely the events of our lives contribute to our fears, but the thing is, being afraid doesn’t change anything at all except our happiness in the present.  It seems to me like a waste of precious time in the present to dwell on how we might get cancer or have a heart attack or develop Alzheimer’s 10 or 20 years from now when we might instead die in a car wreck in six months.

  • squirrely-girl

    Sadly, sometimes individual’s fear become paralyzing… in other words, they don’t change any behaviors, they just enter into a state of denial. :(

  • jaimealexis-fowler

    Pamela- thanks for this interesting post. You mention thinking about what if you were in Missouri and facing something like this. What about in a rural part of Tanzania or Angola? Although the ability to have choices around reproductive health care can be limiting around the US, it is even more limited in the developing world. I think of this often through my work at Pathfinder International. In fact, we’re running an entire campaign right now that’s about giving women more access to choices for their reproductive health care: http://www.pathfind.org/MakeAChoice.

    I completely agree we need more choices here in the US, and I would say for those of us who care passionately about RH issues in the US, we should also stand up and advocate and partner with women in less developed areas to ensure they too have those same rights.

  • pamela-merritt

    Thank you all for your feedback.

    There are a lot of options out there and, as I stated in the piece, I am working in partnership with my doctor to find the right one for me.  I will say that the size and location of my fibroids coupled with a previous surgery mean that less invasive surgery is not an option for me – that’s been confirmed with multiple opinions.  My hysterectomy will not involve my ovaries…just the uterus. 

    But folks should know that there are lots of options…that’s what choice is all about.  Be your own advocate and do lots of research…and then do what’s right for you. 

    Thanks for the discussion!

  • crowepps

    No matter what you decide, good wishes for your speedy recovery!

  • gina-crosleycorcoran

    Thank you for finding this information rather than just saying “I haven’t heard that, so it must not exist” the way some others did.  I hadn’t revisited the thread or I would have posted followup to their questions myself.  I assumed most people could perform a little research on their own.  Thanks again.

  • arekushieru

    Gina, crowepps was asking about JUST the uterus.  That was a link to the removal of the uterus AND the ovaries (which crowepps was NOT asking about).