The Silent Mother

Esoteric & Historical Gravidity & Parturition

Care Denied, Autonomy Ignored, IUD Left Intact

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Note: This is the follow-up from the previous post regarding the scheduling of my IUD removal appointment at Planned Parenthood.

I had my appointment at the local Planned Parenthood for an annual gyne exam and for my IUD removal. Given my broad experience with women’s healthcare providers, both personally and professionally, I found the appointment was divergent from that of my past experience.

I entered the building past two rather polite protesters and encountered the security guard. Upstairs, the receptionist was sweet, caring and inclusive. She had a pleasant demeanor, was polite and helpful. Not only did she ask for my insurance info, but she also asked for my preferred pronoun (it’s “she”, if you are wondering).

This shirt was for a march in DC attended a few years back in support of Planned Parenthood, NARAL Pro-choice and other women’s healthcare advocacy groups. Yes, I’m a firm believer in a woman’s right to choose and safe access to abortion services.

I did bring up the issue I had when scheduling my appointment. She was appalled, and rightfully so. She let me know that what was said was off-message and inappropriate and that’s she’s let my clinician know. A+ for customer service!

I was called back for my exam. This started out as a pretty typical interaction with the nurse… until it wasn’t. She took my vitals, had me pee in a cup and began asking me about my medical history. All good. Then she asked about any symptoms or problems I may be having or have had recently. We proceeded accordingly until I mentioned a minor breast issue and that I still make milk even after having weaned four years ago.

This set off alarm bells for her. After an additional series of questions, she tells me that today’s appointment will be a breast exam and that my annual gyne and IUD removal will be pushed to a later date.

I inquired as to why both couldn’t be done today since I was there anyway and a manual palpitation of my breasts takes all of two to three minutes to complete, if that. She explained that it was about time and prioritization. Since cancer is a *bad* thing, they needed to do the breast exam today and would need to push the IUD removal till a later appointment. (Note: there is no mammography on site, that is to be scheduled for a later date as well.)

I asked again as to why both couldn’t be done since I had an appointment for the IUD removal. The receptionist had mentioned that there was no appointment immediately after me, so any extra time shouldn’t have been an issue.

I explained that since my intention was to get pregnant at 41, that I need to start trying with the next ovulation cycle. Hence, my need to get the IUD out today rather than later.

She insisted that due to time constraints, they couldn’t do both on the same day. I find this to be illogical and not in line with what I know of breast exams and how long they take. Eventually, I relented and grudgingly set a future appointment.

I put my boots on the ground during March for Women’s Lives in DC in April 2003

She then asked if I was using condoms in addition to my IUD. I said “no” and reminded her that I intended to get pregnant and she launched into a “condoms prevent STD’s” speech. This is yet another example of a lack of active listening skills. It felt like she was going through a rote script, rather than hearing what I was saying. It’s awfully tough to get pregnant if you are using condoms.

The physician then comes into the room. She and the nurse discuss my situation. I reiterate to the doctor my need to have the IUD removed and my relative lack of concern over still making breastmilk and the atypical breast swelling before my menstrual cycle. She repeats what the nurse said about time constraints and insists that I schedule a future appointment.

I’m then taken to another room where I’m given a paper half – gown for the breast exam. It is, as I suspected, a manual breast exam taking all of 2-3 minutes. She asked me to express breastmilk, which I did. We talked for a brief moment. I asked, yet again, about my IUD, explaining the inconvenience of having to return a second time and the timeline with regards to ovulation. I expressed my disappointment and my dissatisfaction. I was again told “no”.

We discussed the interaction during the scheduling of the appointment and the doctor apologized for the non-mission statement based conversation which had taken place.

I then was moved on to a blood draw for STD testing for which I had given consent. All told, this took 90 minutes, including multiple wait times and room transfers.

I am left feeling unheard and ignored.

My autonomy was not respected in these interactions with the nurse and the doctor.

Regardless of what issue may or may not be going on with my breast, I was there for a valid purpose – IUD removal, which they did not do.

The delay costs me additional time and money and possibly means that I miss my next ovulation cycle to boot. At 41, I can’t afford to miss a cycle to try to conceive.

I have many thoughts and speculate as to why I may have been denied my IUD removal. None of them make me particularly happy, though I do often wax in negative thought cycles.

If I make a return visit, then they get additional money from both my health insurance company and me with my copay. I’d rather not assume the case is financially motivated, even with the understanding that the government is threatening to cut their funding.

So, let’s assume it’s because they wish to make sure I truly wish my IUD to be removed. They did ask questions about domestic abuse, including whether or not I’d had or a have a partner who coerced me into getting pregnant. My response was “no”.

Rolling this around in my head, I do wonder if this is an imposed waiting period to be sure that I’m not being coerced into a pregnancy.

There is some merit to this method, however, it assumes I am not telling the truth and that I need to be protected. I understand that abused women often protect their abusive partner and deny abuse until they are fully ready to leave the relationship. I also understand that PP works with a population with a high domestic abuse rate and with rape victims.

That said, the nurse and physician with whom I interacted, intentionally chose not to actively listen to my words. When I explained my age and my knowledge of my ovulation cycles, etc. and repeatedly politely asked for my IUD to be removed, they should have been able to ascertain the truth in my words. Or, at least to have better explained the rationale behind not removing my IUD.

The other thing I roll around regarding their decision to delay the IUD removal is my personal life. The staff did inquire as to my relationship status over the course of the visit. I informed them about my separation from my husband and my dating new partners in the last year.

Did this influence their decision not to remove my IUD? I hope not. My personal life is, well, personal and it is not up to the care provider to determine if my personal life is settled and appropriate for having a baby.

Alternatively, maybe, it’s a fluke, a one-time issue with this provider and this office. Maybe, they usually pull out an IUD upon request and something about me or our interaction triggered this response. However, my conversation with the receptionist on the phone at the time of scheduling the appointment indicates otherwise. What if the receptionist at the initial phone call was trying to give me a heads up as to how these IUD removal appointments usually go down?

What if I had only told them I want my IUD out due to excessively heavy periods with anemia, headaches and dizziness accompanying my cycle? Would they have removed it due to that reason alone? I believe in telling the full truth to my care providers. I don’t love my IUD, but I do kind of want to see if I can get pregnant. I don’t believe I should withhold information just to get what I want. There is potential physical harm in that and there is real harm to the provider – patient relationship.

Lastly, what if they told me the truth, with no negligence or malice behind it? What if they really only budget a very short time for visits and even a few minutes over time is a real hardship with regards to other patients? What if the insurance companies only pay for visits of a limited length and PP would be out that money if the visit went too long? This does the patient a great disservice, as sometimes, it is necessary to provide more time to adequately address issues. My body, my choice, except for when it’s inconvenient for others.

I bite back at their prioritization of my breasts over my IUD removal. I am well aware of the risks of breast cancer and I appreciate their concern. However, every gyne visit I’ve had since I was 15, we addressed both breast and uterine issues. The visit at PP was atypical in their focus on only one aspect of my health.

Point in fact – there was NO medical reason to leave the IUD intact. The logistical reason of inadequate time for the appointment, doesn’t hold water given that I was in the office for an hour and a half, at least an hour of that was interacting with the doctor and/or nurse.

I’m still mulling over the rationale regarding the postponement of my IUD removal and as of yet, I have not uncovered a satisfactory reason why my IUD not have been removed at this visit. I will always assume negligence or ignorance over malice. However, the assumption that someone else knows best about my health and my life is erroneous and authoritarian. It is infantilizing to assume that I do not speak the truth or know my mind. Infantilizing to tell me that you, as my provider, know best about my life and my lifestyle.

I live in this body. My values and beliefs govern this body. I do not, nor shall, I cede control to another. My body neither belongs to my care provider, nor my partner. I own my decisions and the consequences thereof.

Planned Parenthood, I will always support you. I will continue to donate to you and I will continue to march for you. I will vote accordingly to support you. Access to safe abortion and birth control is an imperative for women’s health. However, it is unlikely I will be a patient at this office again.

Tell me, readers, of your experiences with care providers who denied you the care you requested. Tell me your stories of needs denied in the comments below.

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Dear Planned Parenthood, I love you, but we need to talk.

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I had a phone call with the local Planned Parenthood office this week. I called to schedule my annual gyne exam. I also requested that at that visit they remove the Paraguard IUD I’ve had for the last eight years.

Here’s where it gets interesting… you, dear reader, know what I do for a living. Therefore, I have massive amount of information stored in my brain about all things pregnancy related. I will never begrudge a care provider telling me things I already know, because it means they are doing their job with regards to ensuring informed consent.

That’s a good thing. That level of explanation should happen every visit, every time.

What I do bite back on is what the staff member said to me on the phone. It started off reasonably well and went downhill from there.

The staff member said that if I take the IUD out, I should use other birth control, and so on. Which, for most people makes sense. I also understand that she was doing her job and trying to provide me with informed consent before scheduling the procedure. I respect that.

I let her know my intention was to try to get pregnant and therefore other methods of birth control were irrelevant and implied that she didn’t need to continue in that vein.

She didn’t listen. So, I repeated myself, “I want to have a baby and therefore I need my IUD to be removed.”

Again, she repeated her script on needing additional birth control.

I was beginning to get annoyed.

Active listening, as a care provider, is paramount to being able to treat a patient appropriately. If you don’t listen, you can’t hear what the problem is and you will possibly make assumptions that could cause harm.

Then, she said something that raised my ire. She said the provider would need to have a discussion with me about whether the removal of my IUD was appropriate.

She went on to say that the provider could refuse to take my IUD out based on medical reasons, social reasons or financial reasons.

That stopped me in my tracks.

What she’s really saying is that I don’t have autonomy over my own body to make these decisions and that I need to cede my power to a provider.

I was appalled and angry. Bodily autonomy is a human right according the United Nations, The World Health Organization and Amnesty International.

“Reproductive health…implies that people are able to have a satisfying and safe sex life and that they have the capability to reproduce and the freedom to decide if, when and how often to do so. …Bearing in mind the above definition, reproductive rights embrace certain human rights that are already recognized in national laws, international human rights documents and other consensus documents. These rights rest on the recognition of the basic right of all couples and individuals to decide freely and responsibly on the number, spacing and timing of their children and to have the information and means to do so, and the right to attain the highest standard of sexual and reproductive health. It also includes their right to make decisions concerning reproduction free of discrimination, coercion and violence.”

~ The World Health Organization

In examining the reasons the staff member gave me as to why the provider might refuse to remove my IUD, I find no supporting cause.

Medical reasons – In my research, the only reason I can find to refuse to remove the IUD is if at that visit it is, or embedded, in the uterus and a surgical removal is needed. So, that’s not a refusal, that’s an “it’s more complicated, let’s schedule the procedure later.” There may be an active vaginal infection that needs to be treated first. Again, that’s a delay not a refusal.  If any readers know of any other medical reasons to refuse removal, do let me know, I’ll add them here.

Social reasons – Ummm….. no. This is my choice to try to have a baby, regardless of what you think of my personal life. No one else gets to decide that for me. This is a conversation between me and my partner only. While I appreciate the concern of my provider to ensure I’ve explored all avenues and rationales, ultimately the decision is mine whether or not to remove the IUD and when.

Financial reasons – There’s two possible perspectives we can explore.

The first is based on personal finances, or “Can you afford the procedure to remove it?”. That one doesn’t hold water for me. If you have health insurance, the removal would be covered in part or full. Planned Parenthood offers sliding scale fees for those without insurance or for those whose insurance is insufficient. So, it’s unlikely that’s to what she referred.

My assumption is that she meant, “can you afford to have a baby?” This goes back to social reasons. How can someone other than me and my partner determine if a baby is financially a good choice (they never are really, kids are expensive!). How can they make an accurate assessment about my income, my partner’s income and our lifestyles in a brief office visit? The bigger question is, why does it matter?

It is my body and my life. My autonomy.

The bizarre irony is that this is Planned Parenthood. “My body, my choice!”

Choice to have a baby or not. The statement made by the staff member belies Planned Parenthood’s mission.

“Planned Parenthood believes in the fundamental right of each individual, throughout the world, to manage his or her fertility, regardless of the individual’s income, marital status, race, ethnicity, sexual orientation, age, national origin, or residence.”

*Deep breath*

As a childbirth educator and doula, this topic, bodily autonomy, I choose to discuss with every client. With the autonomy conversation, comes the right of informed consent and informed refusal.

Bodily autonomy sits firmly in the seat of power and control.

Who controls my body? When a care provider dictates a patient must have a medical test, procedure or medication and does not give her full information, which includes her right to say, “no thank you”, that provider strips the patient of her autonomy and her power.

This also applies if the provider refuses a medical test, procedure or medication that is appropriate for that woman and her current medical condition.

Granted, the relationship between provider and patient must be one of mutual trust and openness. If a woman doesn’t trust her provider, she should find a new one. If the provider’s methodology and course of treatment isn’t suitable for this patient, the provider has the right of refusal of service. This should be after a long, informed and compassionate conversation with the patient.

However, in my opinion, this provider right of refusal must be tempered by circumstance. If this provider is the only provider in a particular geographic area, their right of refusal should be reduced. If their refusal is based solely on their personal or religious beliefs and those beliefs interfere with their ability to serve their patients appropriately, their right of refusal should be eliminated. This is the case with those who refuse birth control, etc. If their refusal will cause harm to the patient, thus violating the Hippocratic oath, their refusal should be restricted.

Key points:

  1. Patients have the right of informed consent and informed refusal.

  2. Patients have the right to change providers (assuming another provider is available in their area).

  3. Providers have the right of refusal of service for really any reason.

  4. Good, respectful communication between provider and patient is imperative.

This refusal to treat a patient is a huge issue. Look back to the Hobby Lobby case or pharmacists who refuse birth control or the morning after pill.  Providers can refuse to treat LBGTQ, transgender, women who’ve had past abortions, etc. This has a massive impact and snowballs quickly.

What we see is a clash of personal values, rather than respect for the patient’s autonomy. This is highly concerning to me.

My hope, with regards to the woman on the phone at Planned Parenthood, is that she is the outlier and that the provider with whom I have my appointment will be as respectful of my autonomy as I am of theirs. I hope we will have open communication and a mutual understanding.

I’m also curious to see what they say when I tell them I want to take my IUD home for my collection. Heck, I did pay $750 out of pocket for the thing, pre-Affordable Care Act. It is mine after all.

How far does my autonomy really go?

Have you had an issue with your provider regarding patient rights or your own autonomy? Let me know about it in the comments below.

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Your generous donation allows me to keep writing.

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The Dalkon Shield. A story of corporate greed, a lack of medical testing and an ongoing fear of the IUD.

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I think it looks a bit like a horseshoe crab on it's back.
I think it looks a bit like a horseshoe crab on it’s back.

I have a Secret Santa who sent me a rather large box of interesting objects. My Secret Santa included a new-in-the-package Dalkon Shield IUD. As a collector, I was giddy when I saw it. This particular IUD has caused long term fear and loathing of all IUD’s. Yet, most women don’t know the story behind it. They know that IUD’s caused “problems” and that other methods of birth control were “better”. Even now, I hear women say they’d never get an IUD. That is a shame because IUD’s today are the most effective birth control on the market.

Let’s dig in to the story behind the Dalkon Shield and this pervasive fear of IUD’s.

In 1971, the A.H. Robbins company brought the Dalkon Shield to market, billed as a safer alternative to The Pill. The birth control pill, still being relatively new, had some kinks yet to be worked out. Many women were unhappy with it’s side effects and were searching for something that was safe and effective. Given the hole in the market, it was a prime business opportunity for A.H. Robbins and this new style of IUD.

IUDs have been around for a over a thousand years, in various shapes and forms. The Dalkon Shield, however, had something new going for it – a mass marketing campaign. Well, that and a different physical structure and an entirely different kind of string… but we’ll get to that in a minute.

This marketing campaign was so successful that approximately 2.8 million women eventually used the Dalkon Shield. They were, however, unaware of the lack of proper testing on this device and its safety.

Although A.H. Robbins tested the Dalkon Shield for efficacy, they did not test it for safety. At the time, that was not required before putting it out to market. The company also padded it’s efficacy rate to show a 2-3% failure rate, as opposed to the 10% failure rate it actually had.

Dalkon shield IUD, The Silent Mother
The blue stick is the insertion device. The grey, insect looking thing is the IUD itself.

There was a rather large problem with the Dalkon Shield. The string which attaches to the plastic IUD was made of a multi-filament string instead of a mono-filament string.  Why is this an issue? Well the multi-filament string allows bacteria to creep up into the uterus whereas a mono-filament string does not. Bacteria, as we know, causes infection. Infection leads to sepsis. Sepsis leads to hospitalization, massive doses of antibiotics, the potential for surgery and so on. The biggest complaint being pelvic inflammatory disease, which beyond it’s discomfort, can lead to infertility.

All of this lead to five deaths, multiple spontaneous abortions and over 300,000 lawsuits against A.H. Robbins. The company folded under the pressure.

Protestors in the 1970’s via Tumblr

So after all that, there is an upside. Women stood up for themselves and for better medical testing. The success came in 1976 when the FDA added the Medical Device Amendments to their policies. Change is often slow. These women, of my mother’s generation, took to the streets, the media and the courts to protest and affect change. It makes me wonder what we could do now, should we rally.

In the meantime, I’ll hang on to this piece in my collection to remind me of how far we’ve come, and how far we still have to go to support women’s rights with regards to access to safe birth control, safe abortion and bodily autonomy.

Please support The Silent Mother by becoming a patron through Patreon.

Your generous donation allows me to keep writing.

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