#StartAsking Reproductive Medicine to Prioritize Patient Care

Dear Reproductive Medicine,

I’m one of your patients.

I went through five IUI’s (all done with injectables), one hysteroscopy/laparoscopy surgery for stage 3 endometriosis, four fresh IVF cycles and one frozen.

I also, during my four year trying to conceive trek, unexpectedly dealt with PTSD that went undiagnosed for quite some time and entailed panic attacks, many of which took place in your waiting rooms.

My husband and I have now embarked on the third year of grieving and mourning the loss of our children, notably all by ourselves.  And no, we don’t consider our departure from reproductive medicine and the pursuit of a family with children a “choice” upon which our grief can be blamed.  It was, rather, the only sane and responsible action to take under the circumstances.

Yes, I’m one of your patients.  A patient who, two years and three months out of her final treatment is disturbed by many aspects of the care she got….and didn’t get…..while in the care of reproductive medicine.  Prompted by this year’s National Infertility Awareness Week theme, it’s time to #StartAsking.

I’m #startasking you, Reproductive Medicine, to do a much better job with the disease of Endometriosis.  This disease that negatively impacts one’s overall health, is an impediment to fertility in multiple ways and affects approximately ten percent of the female population.  A disease that can hardly be addressed by IVF alone, if it even should be at all.  It’s as if many of you have ceased acknowledging this disease altogether.

Why did it take two years, 5 IUI’s and six doctors before I was notified of my stage three endometriosis that was detectable by a BASIC PELVIC EXAM??  Reproductive medicine needs to answer for that and for every other undiagnosed/ignored case of endometriosis.

And I’m #startasking you, Reproductive Medicine, to prioritize diagnosing the cause of your patient’s issues whenever possible before you start putting patients through the fertility treatment wood chipper.  In other words, I’m #startasking you to practice medicine.

Had I been informed of my diagnosis in a timely manner, two years of my valuable late thirties fertility would not have been pissed away on five IUI’s that addressed nothing AND made my endometriosis worse (please see induced excessive estrogen levels).

An industry that has so successfully marketed itself as the end all be all solution for nature’s human reproduction flaws and limits really ought to be doing a better job at trouble shooting.

Without knowing what was wrong in the wake of my failed IUIs, I was told by a number of doctors to “just do IVF”.  Why?  Why was I told this time and time again?  I venture to say, in addition to being a pitch unrefined and lacking in intelligence, “just do IVF” is NOT a diagnosis.  I procured my endometriosis diagnosis before doing IVF due to luck and my own persistence, not the attentiveness of reproductive medicine.

I’m #startasking you, Reproductive Medicine, to initiate more research on the mental health ramifications of your treatments.  And should the research results be what I foresee, I’m asking you for a full and honest disclosure to all patients of the potential damage to one’s mental health fertility treatments can pose.  With such disclosures, patients can make more informed choices for their care in the best interest of their overall health.

I’m also #startasking for a waiting room and exam environment that is appropriate in the face of the traumas and losses inevitably involved in the treatment of infertility.  Too many clinics drench their front desk areas in the façade of sure “success”.  An absence of child free waiting areas, open fuss over pregnant people “graduating” and repeat customers and baby pictures strewn about are all indulged in at the expense of those of us who suffer the most, the patients who have not been helped by reproductive medicine.

I actually received less care and attention from the clinic nurses the greater the number of IVF’s I did.  Perhaps it was assumed that I knew the drill as far as injections and such, however there currently is no drill for assessing the real needs of those who are in deep two or more failed IVF’s.

I’m #startasking for a patient protocol for when treatments aren’t working and regular communication on where each individual patient is at with this.  I’m #startasking for paths that don’t involve yet another treatment to be included in options presented to veteran patients.  I’m #startasking for a coordinated support system to be available to those who need to stop treatments.  I had none.  All of these things would have cushioned the impact of multiple treatments and the loss of my children.

Yes, it seems I’m #startasking for PALLIATIVE CARE.  You can find the definition here in case you’re not familiar with it.

Not getting pregnant makes me no less a patient than anyone else with a disease for whom treatment doesn’t work.  I liken what goes on with people who don’t get pregnant in reproductive medicine to only acknowledging paraplegics who are able to acquire their ability to walk while leaving behind those who don’t.

Lastly, it’s time we all #startasking for studies that evaluate the long term effects consuming fertility drugs has on one’s health.  I found myself wondering, when I was called back for a second bilateral breast mammo/sonno this past fall, what kind of risk I am now under.  The results were fine this time but the experience made me realize I have no knowledge as to what fertility treatments may have done to my body both short and long term.  I’m not sure what issues to press with my gynecologist regarding my long term preventive care.  Why wasn’t I given this small bit of education?

I was disappointed that #startasking reproductive medicine to prioritize patient care wasn’t on Resolve’s proposed #startasking list.  As I read the list that included some important points – #startasking for health insurance coverage and the ever near and dear to my heart #startasking friends and family for support, I kept saying “And…..and…..”

As we put ourselves on the front lines to ask congress and health insurance companies and the general public to treat infertility as the valid and serious disease that it is, you need to do the same, Reproductive Medicine.  That means diagnose before you treat and acknowledge the effect disease AND treatment has on the whole patient.  The care a patient gets should not be withheld because they don’t respond optimally to treatment or because continuing with treatments is not in their best interest.

I also need to #startasking you, Reproductive Medicine, do you think you can accomplish the aforementioned actions without outside regulation because they are the right and humane thing to do?  Or are we going to have to #startasking for the fertility industry in the United States to be regulated?

Most Sincerely,

Sarah Chamberlin

The box holding the pictures of our embryos prior to burial. Guess you could say we opted for a closed casket.

The box holding the pictures of our embryos prior to burial. Guess you could say we opted for a closed casket.

13 thoughts on “#StartAsking Reproductive Medicine to Prioritize Patient Care

  1. Excellent points! I think a list is needed for regular OBs as well. Like don’t make the patient coming in to have a D&C due to miscarriage wait for an hour in the same room with the glowing ones while she is experiencing intense contractions due to the drug you gave her to open up the cervix to make it easier to scoop out her baby.

    • So true – this crossed my mind but I didn’t include it due to a lack of personal experience. The stories I’ve heard, including yours, sound barbaric and make my heart ache. Having the “glowing ones” and those miscarrying together is like putting rape and consensual sex in the same room.

  2. So much yes in this post. While I can’t relate to some things since we never had any ART procedures (thanks to my asshat ovaries crapping out a couple of decades ahead of schedule!), I completely understand others. It was never suggested that I seek counseling. I was treated in a cold and impersonal manner by the office staff (I always attributed this to the fact that we weren’t going the treatment route, but maybe they’re all jerks). Baby pictures everywhere. Idiot parents who didn’t bother to find childcare for their darling offspring(s). Having a whole fucking class of medical students present for my HSG because nobody bothered to ask if it was ok with me if they were there (yet my husband wasn’t allowed in). When I asked the clinic to transfer my records to my regular GYN since I wasn’t seeking treatment they wanted to charge me a $10 fee plus $1 per page to make copies and I would have had to pick them up in person, which would have resulted in another $25 for parking (she also got quite defensive when I told her she could go fuck herself if she thought I was giving them another dollar of my money-true story). It all left me with a very poor taste in my mouth.

    I feel you on the endo. I’ve been asking, pleading, begging for years for a more thorough investigation (e.g., laparoscopy since ultrasounds don’t show any abnormalities). I have all of the symptoms (plus a hella strong family history of it) yet my pleas fall on deaf ears. Maybe someday they’ll listen so I can get a hysterectomy or at least an ablation.

    • Interesting all of the improprieties you had to encounter not doing treatments. That speaks volumes. Sorry you had to go through all of that. I’m so happy you told the person at the clinic to go F herself (I guess that that is what makes me happy ALSO speaks volumes….alas).

    • Yes, although in writing this I had to acknowledge that I’m not yet ready for the dismissals and minimization that might come, as I’ve just barely started to deal with the medical/fertility clinic side of my trauma and loss. But in time I keep getting stronger…..

  3. Well put. l received no information on testing for anything when we started our donor egg IVF. After each failed cycle, we asked “isn’t there something we can do to improve our odds?” and the doc said ” sometimes it just takes a couple of tries” and pretty much guaranteed the 2nd one would work. Well we’ve had 3 failed donor egg IVFs and I finally asked the doctor about all the tests other women on the blogs were getting (immunology, etc) and he said sure, we can do that, and it wasn’t until I talked to the nurse getting that blood drawn that she whispered to me that I should ask him about getting an endo scratch. I’m just baffled at why none of this was brought up – and neither was PGD/PGS which with 13 blastocysts should have been automatically done so we wouldn’t be picking these things out of a damn hat. Sigh…can you tell I’m frustrated? And I don’t even have endometriosis! With DEIVF they do pretty much consider it a sure thing to work within 2 tries…yet 3 times later, we’re no closer and considering our insurance doesn’t even consider infertility, we have to #startasking for universal infertility treatment coverage on health insurance. It can no longer be considered “elective” – it’s like telling a person who needs glasses that they should just squint.

    • Sorry you’ve gone through all that. Frustrating, and right on par with my experience of having to scavenge for answers and explanations. Our Dr. when we did IVF was at least very oriented towards diagnosing.

      It sure is disenfranchising to not have insurance coverage, however I’m concerned that if we only #startasking for that, without #startasking for accountability from the fertility industry, the incompetencies such as that which you’ve been through will only run more rampant.

  4. Thanks for asking these important questions.

    I too would like to see more longitudinal studies of the impact of multiple treatments on long term breast and reproductive health. In my last year of treatments my annual mammogram showed two cysts and calcification which I have to have monitored with 6 monthly mammograms and ultrasounds for the next two years. I will always wonder if the mutiple stim cycles put me at risk.

    I also call for counseling services and support to be given to anyone contemplating stopping treatment. It was very hard to effectively feel abandoned by the healthcare practioners who were so much part of every detail of our lives until we stopped treatment. It is such a hard transition and grief that needs more acknowledgement and support.

    • Hoping for change in the future, but I myself am just getting to process the medical aspect of what I went through.

      I hear you on the abandonment – we started to get more “ignored” by our clinic by IVF #4, #5 (our only FET) they were hardly paying attention at all as they knew we weren’t going to do egg donor.

  5. Yes, yes, and yes! I sought out counselling from my clinic (UK) twice… The first time my request was never addressed and I just moved on with treatment. During my last cycle, I found myself suicidal from the stress/trauma/anticipation of another miscarriage and begged to be referred to the counsellor. She never bothered to phone me even though I was on the emergency call list because of her own personal issues – her cat died. For someone who was struggling to keep going with injections and not jump in front of a train, being placed below a dead cat was just about the last blow. After that, we gave the clinic a deadline to get me to embryo transfer or I would just stop with meds. We’re now nearly a year past our last failed cycle and I’m seeing a therapist to work through the loss. This kind of ‘treatment’ is NOT acceptable.

    • I’m so sorry this happened to you but sadly I’m not surprised. Agreed that that was beyond unacceptable.

      I hope your therapist is both wonderful and qualified – we all deserve at least that much. I know mine is and it’s a good thing to have.

      I congratulate you on holding onto your sanity – even if by a thread it still counts!! If I were placed below a dead cat I think I’d need a permanent reservation with a padded room. That’s just absurd (although I have to admit I laughed a bit because it’s just so BAD).

      Thanks for sharing your story and I wish you well in your recovery.

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