Insights on Infertility Medicine’s Failings
For National Infertility Awareness Week April, 2017
“Something is wrong. The holidays are over, yet my physical symptoms are still present”.
I was sitting, practically slumped over on my primary care physician’s table. I had originally thought the debilitating and sudden onset symptoms I was experiencing might have been spurred by holiday grief. I had just been riding a fairly good, transformational spell but had become open, in the past three years, to the fact that grief can do funny things.
“I feel just like I felt two weeks ago when I went to the ER” I informed him, my heart bouncing around in my chest as unprovoked waves of nausea and panic swept through me while the room spun.
Fortunately, he listened to me and took me seriously. He showed concern. And he acknowledged right away that his puzzlement over why a healthier than average almost 45 year old was in such a state of disarray warranted further investigation. Investigation he knew required the help of others, so he funneled me to the right specialists. On my way to a diagnosis I was, unaware of the relative medical paradise I was about to enter.
“Something is wrong. Ever since we started trying to conceive I just don’t feel right.”
6.5 years prior I was sitting in a reproductive endocrinologist’s office three cycles after my husband and I had taken off the birth control. The doctor had been recommended to me by a dingbat midwife I was seeing to help reconcile my vitamin program with a pregnancy that never came.
Having always used condoms, my body felt different since my husband’s genetics had been inside of me. Fatigue, brain fog, body aches. I felt like I was getting sick but yet I wasn’t.
Unfortunately, the doctor didn’t listen to me or take me seriously. Looking back, I can now see the wheels in his mind were spinning to take advantage of what he thought was the vulnerability of neurosis combined with advancing maternal age (38). A battery of tests was run, no concern was paid to my physical symptoms, and a “diagnosis” was forged on one loan number (which it turned out he misinterpreted).
And, with fertility medicine being what it is, a fierce sales pitch of course followed suit. Time was of the essence, my ovaries were tanking (turned out they weren’t). I could try an IUI or two if I wanted, but it was recommended I turn to IVF as soon as possible. It wouldn’t be until three full years and six doctors later that my original symptoms would have an identified cause.
Back in the present and four weeks after the aforementioned primary care doctor visit, I sat on the other end of the phone line, stunned. The extensive battery of tests from my ENT doctor, tests I had barely gotten through without vomiting and passing out, showed nothing. Not only that, according to the doctor I did “quite well” on them.
“Are there any other avenues we should examine, is there anything else to look for?” I asked, not wanting to leave a stone unturned as I worked on the mystery of my failing body.
“If someone is having inner ear issues, SOMETHING will show up on this test” he asserted. “I think you should go back to the neurologist. After that, if there’s anything we can do for you please let us know.”
And there I sat again, in a moment of blank silence. After all, being ushered to the doctors and care I need is not something I was used to as a former infertility patient.
Wasn’t he going to peddle his wares? Make a case for me to continue treatment with HIM? No, wait, he wasn’t. Not if that’s not what my condition called for. I believe they’re known as ethics.
Multiple failed fertility treatments also leave one on the other end of phone lines stunned. To bad there’s not a PHD for that – I’d be granted an honorary one.
6 years ago, at the clinic I went to after Dr. # 1:
“Sarah, I’m sorry I’m not calling with better news.” By IUI #3, I was starting to get used to the routine.
“Did you get your bleed, hon? Come in on cycle day three for blood and sono so we can get you started again.”
“The drugs give me hormone producing ovarian cysts so I have to wait at least a cycle. It should say that on my chart. I already had to go through one cancelled cycle.” I didn’t even ask when I should come in for monitoring since, 5 months into my jaunt with reproductive medicine I had already gotten used to taking my care into my own hands.
“Oh………well OK!” she said, almost incredulously. I mean really, how dare I personalize myself?
With the mechanized assembly line of fertility treatments disrupted by my one rudimentary need, we said our awkward goodbyes.
Looking back, there were multiple times reproductive medicine failed to direct me to what I needed.
The ovarian cysts I had to take into my own hands were just the beginning. The care I got when I had a mild to moderate case of ovarian hyper stimulation syndrome during IUI #3 was rough and lacking in both attention and compassion.
I was issued multiple fertility treatments by multiple doctors when what I really needed was a laparoscopy. The endometriosis I didn’t know I had was detectable by a basic pelvic exam, yet five doctors were somehow willing to overlook it in order to run treatments on me. Treatments that made my endometriosis WORSE, as endometriosis is an estrogen reliant disease. One doctor even overlooked that I was unable to fully empty my bladder (due to endometriosis) during a vaginal sonogram and then proceeded to hurl an IVF sales pitch my way.
The possibility of an IVF cycle was pushed towards me immediately following my hysteroscopy laparoscopy when what my body really needed was to take a few months to recover. The possibility of the transfer of our final embryos was proposed on the heels of my fourth failed IVF over the course of nine months. “Oh, no, I’m exhausted” I said to my doctor as I got up from the chair, sailing out of his office after my declaration “and plus, I have some liver detoxing to do.” With no follow up guidelines ever presented for recovery from a failed fertility treatment, physical or otherwise, I had gotten used to taking my care into my own hands on that front too.
The “option” of egg donor was casually mentioned without any exploration into my mental health – I had been having panic attacks for a couple of years at this point, some of them in the waiting room of my very own IVF doctor. The option of egg donor was raised with the specific words “If you’re willing to use a donor, you can definitely have a baby” in spite of the fact my doctor had acknowledged at one point prior that I’m just not very well programed to entertain genetics that aren’t mine inside of my body. The option of egg donor was also mentioned in that final phone call I had my husband take. The gist – “Sorry your children don’t get to exist, let me take this opportunity to let you know we can help you try to have another woman’s child for a hefty price, even though your medical case is not so conducive….……”.
Back to the testing I recently had to undergo:
“The results will be interpreted by tomorrow, they’ll be in your doctor’s office by Monday” the technician said with professional concern.
“Huh? Oh, ok.” My shoulders spontaneously shrugged as I was again baffled by the attention I was getting. Sitting on the side of the MRI table, my legs dangling as I prepared to stand, I was still pondering the truth that the overpowering grinding and clanging noises of the MRI machine were quite preferable to the sound of someone asking me if I have kids. Not to mention that waiting a few measly days to find out if I had brain stem issues was worlds easier than waiting for 10 – 14 days over and over again to find out if my children were going to get to exist.
And bright and early Monday morning, low and behold, my doctor called with the results. They all did after every test, there was a real sense of both urgency and decency in letting patients know where they stood. I never felt strung along. When I have questions, my neurologist always gets back to me on the same day.
In fertility medicine, patients are often treated as an inconvenient annoyance. They call with both fertilization and pregnancy test results at their convenience, blatant in their missing sense of urgency. I guess what does it matter when you can always “just do another treatment?” The wait for the results of our final treatment was more than any human should have to bear. The wait for results at this clinic was always long, their excuse being they did not have an in house lab. As the story goes, the lab that processed my final blood work only ran progesterone levels, not the beta hcg. I’ll never know whose idiotic mistake it was to not be able to execute two simple items on a list, but it culminated into an extra 24 hour wait for the official word my children would never exist.
I also had a drug order botched by a nurse who refused to take responsibility, calls with questions or regarding symptoms would go unreturned or were dealt with in a haphazard manner. At times I was even informed of where the doctor was – “he’s flying to such and such” or “he’s presenting a paper at so and so”, notably not leaving the fort running well in his absence. It was clear that to get any kind of care in fertility medicine, one must be PERSISTENT. I did have a nurse take care of me once when I could not withstand the intramuscular buttock injections. Heat, icing, nothing worked. I was in pain both sitting and standing. Other than that, when you do receive care it’s random and presented as a “favor”, like when I was quickly directed back to my doctor at my blood work appointment for my failed IVF#4…….though it could have been because I was speaking clearly at the front desk. I never made any kind of an effort hush my reality as we fertility patients are expected to do.
When all was said and done, my post infection dysautonomia, a rare result of a viral infection that is very elusive to pinpoint, was diagnosed in under two months from the onset of symptoms. Dysautonomia patients often start to think they are crazy, as they under go test after test that shows nothing if not great health and function. All of my doctors listened exquisitely to me, provided me with good care and got me to where I needed to go every step of they way. Even my indifferent gastroenterologist I appreciated, he seemed to know right off the bat I didn’t have irritable bowel syndrome or anything else up his alley and had no interest in wasting his time or mine. Because, you know, ethics. I also knew, unlike in fertility medicine, I’d receive care from my doctors regardless of my diagnosis and prognosis.
Listen up and let’s recap:
Time it took the infertility business to diagnose endometriosis, a common disease affecting 10% of the female population – 2 years
Time it took the medical profession to diagnose post infection dysautonomia, an uncommon disorder that affects less that 1% of the population? Less than 2 months
Did my doctors communicate with one another in the fertility business? No
Did my doctors communicate with one another in the medical profession? Yes
Number of doctors I saw in the fertility business who made no or ill-motivated attempts to diagnose me? FIVE
Number of doctors I saw in the medical profession who made no or ill-motivated attempts to diagnose me? ZERO
Is it necessary to research doctors in the fertility business to get quality care? Yes, and then often times you still don’t. And then you’re blamed for your quality of research.
Is it necessary to research doctors in the medical profession to ensure quality care? It may be, but in this case I was so debilitated I had to seek answers swiftly. I did little research on the doctors I saw and got wonderful care.
Keeping patients informed as to their condition in the fertility business? Inefficient and uncaring
Keeping patients informed on their condition in regular medicine? Efficient and Caring
All of this brought to light for me the lack of patient care and the disinterest in diagnosing that runs rampant in the fertility industry. It brought to light the fact that what most fertility doctors are practicing is business, not medicine. #Listenup!
11 thoughts on “#Listen Up: The Difference In Doctors”
Dear Sarah, this is a revelation to me – I thought that it was just my fertility clinic that could be described as heartless at best and incompetent at worst. Thank you for highlighting the problem.
You’re welcome, Lynne. And it’s not just you – these issues are quite widespread. I live an hour outside of Manhattan – not exactly a remote area where access to solid medical care is limited.
I’m sorry you had such a horrible experience with your RE. I really hope that’s not a typical experience for most people 😞 the RE I used quickly diagnosed my PCOS and also thought I could have endometriosis. Gave me the option to have laparoscopic initially or wait after a few medicated cycles before performing. We opted to wait a few months but ended up doing it. I’m glad you were able to find the diagnosis you needed very quickly though with your current issue and I hope you have a fast recovery!
We had these experiences consistently with all seven of our doctors. I will say our last two made much greater efforts to diagnose our case, but the problems of emotionally unsafe and disrespectful waiting areas, as well as a lack of concern for the patient’s overall health and no off ramp from treatments, were still well in place. Nice to hear the trail to your laparoscopy was not so circuitous.
I’ve had a similar experience with the care from my doctors. My endometriosis took forever to diagnose, and I actually self-diagnosed my PCOS. I went in to the dr’s office and said I want such and such tests. Now. Thank you for your post. The need for better care should be highlighted!
Thanks for your comment. With endometriosis, I found fertility doctors typically ask two broad questions (if they ask at all), 1) do you experience pain during intercourse? and 2) are your periods heavy?. I always answered no to both so they moved on, when it’s a basic fact one can have a significant case of endometriosis (mine was a mild to moderate stage 3) and not have these symptoms.
When patients are having to self diagnose what I assume is both a well known and common condition – PCOS – it really makes one wonder.
I’m sorry to hear how much your infertility doctors failed you over the years. One of my best friends in Australia only found out after her IVF failed that she had severe endometriosis and it wouldn’t have worked anyway. Her symptoms were ignored by her IVF doctor. I’ve heard so many similar stories too. I hate the way the infertility industry just run a standard set of tests but don’t really attempt to get to the bottom of the problem. Another friend of mine had 9 failed IUIs and one failed IVF before it was discovered that her husband had sperm DNA issues. Her doctor had kept assuming she was the problem as she was over 35. My clinic also pushed a whole lot of extra treatments which were unproven and expensive.
Thanks for sharing. Wow. I wish the stories you tell weren’t examples of what is common, but I’m afraid they are. And these things typically happen when we’re in vulnerable places in life and with ourselves and need the medical profession to have our best overall interest at heart.
I’m so incredibly furious at all of the doctors who say that donor egg IVF is a a sure thing. I believed it myself for 6 transfers and 9 embryos and one miscarriage… And I’m nauseous at all the money we spent and how there’s nobody we can find online who has been through donor egg IVF this many times without a kid… They tell you the odds are 80% on the first transfer, so what does that mean for us when it fails 6 times…
I hear you on the fury – I have no doubt I’d feel the same way. I’m so sorry for all of your losses. The lack of answers your doctors owe you must add much insult to injury. I do hope you’re able to connect with someone eventually who has walked in similar shoes – those feelings of aloneness are so normal but so hard.
I am really sorry !! that treatment failed many times and losses, it,s really great disgusting doctor.