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?