In the realm of attitudes and stigma surrounding infertility and childlessness, I have a long list of things I’d like to see change in my lifetime. Somewhere close to the top of that list is the manner in which life-changing news is delivered.
Here’s how I first got official notification that there was something very wrong with me, and that my chances of conceiving naturally were next to zero.
A phone call. From someone (not sure who) in my RE’s office, but certainly not my doctor. I was at work, in an open office space, within earshot of my co-workers when I got the call.
The Mystery Person said, without pausing for breath, “We got your test results back, your blah-di-blah is high, so call us on the first day of your next period so we can get you started on IVF.”
No explanation of what that meant. No word about infertility. No offer of counseling on what to expect or where to go for help. I went from “let’s do a test to see what’s going on” to “let’s do IVF because you’re infertile” and the course of my life did a full 180 in the span of a ten-second conversation.
From talking to many of you on this subject, I know that this was not an isolated incident; in fact, I’d dare to say it’s the norm.
I compare this to my friend’s experience when a lump in her breast was diagnosed as cancer. She talked about the physicians who walked her through every step of her diagnosis and subsequent treatment. She talked about the volunteers at the breast center who took her into a quiet, comfortable room and gently guided her through brochures and directed her towards her counseling options. My friend’s diagnosis was life-changing, too (and not necessarily life-threatening, either), but the way the news was delivered couldn’t have been more different.
There was a time when cancer was a shameful disease and people didn’t talk about it openly, but kept it to themselves. Over the years, that’s changed. The medical community learned the need for compassion and understanding when dealing with patients who are scared and whose lives have been turned upside down. Thankfully, survival rates for cancer have risen dramatically over the years, but the need for compassion hasn’t diminished.
My hope is that infertility will attain a similar level of understanding and compassion, so that no one should have to have their lives upended with no more support than a ten-second phone call.
The unkind attitude, careless comments, and unprofessional actions we received at the hands of REs and an adoption agency have been some of the most difficult things that I have had to deal with concerning our infertility. We did IVF as a last resort; when all else had failed. I was 38 going on 39 and treated like a criminal for being over 35. Every. single. appointment my age was thrown up in my face. I was left in the dark for weeks on end as to whether or not we were even eligible, we were never given a complete rundown of the procedure; major details were left out (like the fact we’d have to travel 2 hours to have the retrieval). In the end my cycle was cancelled because I wasn’t responding to the meds. I was given explicit instructions to call on the first day of my next cycle so we could try again. I did. My phone call (and all the calls after that) were never returned. That snub coming on the heels of seven years of infertility, a miscarriage, and a failed adoption attempt were the final straw that broke the camels back. I was tired of being treated like dirt and decided to quit. I’ve come to terms with the m/c. I’m coming to terms with the adoption loss. I’m adjusting to life without children. I struggle every day to forgive that doctor.
The comments on age really tick me off, too. It doesn’t take a genius to know that as you get older your fertility declines. If you go to see a specialist you want his/her help. You want to be treated with respect, not treated like a “criminal” who deserves to remain childless because they didn’t hop on the gravy train early enough (for many of us either by circumstance or otherwise, it wasn’t a choice for us to make alone or seeing an RE was a last recourse after all else had failed). And don’t get me started on the staff at some OB/GYN offices… I wish I could go to an office that didn’t deal with obstetrics… alas, I think all in my area and under my insurance plan do. I’ve unwisely skipped the last two years. Gotten my mammogram, but haven’t gone to see my OB/GYN.
My experience was a little different than yours. I was seeing the same gyno for 14 years complaining of pains and he blew me off. I saw him a few times during the year we were trying to get pregnant expressing concern and he told me I was fine, not to worry. When I went to a specialist who ran all of the tests, he had me come in, reviewed them with me with a box of tissues, and delivered the bad news himself. I give him a lot of credit for doing that because most doctors just don’t want to deal with the tears.However, my Dad got sick a few years ago and was rushed to the hospital for emergency surgery on his liver. There were 3 or 4 doctors caring for him and they told his family (not him) that he had pancreatic cancer. They wouldn’t tell him, they wanted us to tell him. We kept asking them to tell him so he could ask questions and they wouldn’t do it. No one in my family knew how to tell him so when I brought him to one of the doctors for follow up after the surgery, I told him we are teling him together. The doctor’s reaction, was, me! why do I have to tell him? I was so disgusted with all of them. Regardless, I agree with you that fertility treatment providers can do a lot better. It’s become a profit making mill where they just run people through, leaving you penniless and emotionally scarred, many times with no baby.
A very interesting topic… I have been diagnosed with skin cancer four times – each time, I have been called directly from my doctor and it was handled in complete professionalism. In fact, it is how I know it is bad news because the nurse calls otherwise!
With the adoption agency we used, emails were not returned promptly; calls were not either. I have so many examples of emails that are purely unethical in nature as the information provided was not true. At one point on a phone call, our counselor actually stated that “she was not our advocate” (really then, why did I give you all so much money?).
I wish I could do a better job of just putting the whole thing behind me, but in reality, it is a part of me that shows its ugliness a few times a week…sometimes several times a day. Does it ever end?
I found out I was infertile at a diagnostic appointment (HSG) checking my only remaining fallopian tube. The doctor told me while I was still on the table having this horribly uncomfortable procedure. She started the test by telling me how overtired she was from having been up all night delivering a beautiful baby boy. I remeber her trying to hug me and I just turned away from her and walked away. I had to insist that she check my tube prior to a cycle of clomid. We skipped straight to 8 failed IVF cycles after the procedure. I remember walking through the hospital to my car afterward and bursting into tears as I tried to get my car from the hospital valet. He was a nice old man who tried to get me to call my mom and not drive because I was so upset. In retrospect I wish I had brought someone with me.
Mine was similar. As a last resort, I had a final HSG (after two ectopics and failed IVFs – lack of response) and could see on the screen that the dye wasn’t spilling from either tube. The nurse wouldn’t say anything but after I’d changed the doctor just came and confirmed what I’d seen. I should never have driven home on my own, and like you wish I’d had someone with me.
Oh yeah, and it was my birthday.
Oh my goodness, my heart truly hurts hearing all of these stories. To be honest, we didn’t proceed very far with treatment as I was too afraid of these responses happening to me. I also backed away from all diagnostics and treatment because I was tired of hearing “nothing’s wrong” and knowing they were happy to see a blip in their stats disappear with my leaving. As has been spoken about so many times in the past, undiagnosed infertility feels like no man’s land and I’ve been left doubting myself and my body. I can’t say that a clear answer would have eased the pain I’m coping with as that’s too disrespectful of those who are dealing with painful answers. It’s all just bloody unfair.
Doctors fuck up even when nothing is medically wrong with you. As far as I know, there was no problem with me conceiving. As far as I know, because i wasn’t given ANY thorough testing before we tried IUI because they had found low sperm count in my Ex-Boyfriend. After that failed he refused to talk about the “baby-issue” anymore and the whole process came to a stop. I was grieving and confused. in that state i went to my gynaecologist. She asked about the ttc and i said i had a problem with my partner he refused to go on. She first asked me what country he comes from seeing my (own!!!) foreign name in her notes. I say i’m not married (and for f’***s sake the woman hat even met him personally!!!) I can only interpret that in one way, she hoped to put down our relationship problems to some sort of “oh he’s an immigrant see what happened” kind of attitude. After i had put her right she told me at length about her own failed marriage. Yeah great. I have never ever set foot into that place again.A year later i went to the fertility clinic at the local hospital and had my hormones tested. I explained the whole story (by then the exboyfriend hat left me) the hormones turned out fine but the doctor refused to thoroughly test my falliopian tubes because i “didn’t have an acute wish for a child”. Meaning i wasn’t ttc with a partner. That all i could think of was MY wish for a child at the time wasn’t his concern.
I totally understand the “not wanting to know”. Before we went for adoption and IVF we had taken a year off to just regroup and get a breath. It was a peaceful year. I regret that we didn’t just quit then. Yeah, I might have always wondered but now I have all this crud to deal with because of how we were treated. Some days it hurts worse than not having a baby. My diagnosis was endometriosis. I suspected it for years and told my gyno when we first started trying unsuccessfully that I thought that was the problem. He treated me like I didn’t know what I was talking about and said that the only way to fully diagnose was through surgery and “You don’t want to do that.” I listened to him and we continued to try for six more years. I eventually had the surgery but it did little good.
I don’t feel that I was ever treated BADLY or rudely by the medical staff I encountered — but throughout ttc & through my one pregnancy, I often felt that my concerns weren’t taken seriously. :p My family dr knew I was trying to get pregnant, knew I was past 35, & basically patted me on the head & told me not to worry — and so I just plodded along, when I probably should have been referred to an RE on the spot. I’m not sure it would have ultimately made a difference, but at least we would have started tackling the problems earlier than we did.
I also found it maddening that my RE would be highly encouraging at one visit and then bluntly discouraging at the next. (Which one is it, doc??) And conflicting information/opinions: once diagnosed (during pregnancy) with my bicornuate uterus, I was constantly told it would not be a problem — when in subsequent reading I learned that it most certainly CAN be a problem, and probably was part of the problem, in my case. :p
I think it just gets so routine for RE’s and their staff. I mean, their jobs revolve around IVF, they do it every day, are around it every day. To them, it’s no big deal. But for each patient, it’s very personal. We just had our first RE appointment about a week ago, and the RE gave us very similar bad news (which we were definitely not expecting). He said everything so matter-of-factly, and it took everything inside of me to keep from crying.
I was told I was infertile by my doctor with no explanation other than “you have old eggs”. She wanted me to move directly towards IVF, though she did say my chances would be very low of getting pregnant and so she suggested we bypass using my “old” eggs and move directly to donor eggs. She at least wanted to save us some money – that was the only positive thing about this particular doctor.
After switching doctors and moving on to UCSF where my doctor was the Chief RE doctor at the hospital – I thought I was in good hands – NOT! She was very nice, but I was treated like another number – could only communicate with her staff of nurses via email – never by phone. There was never any follow up on anything and I was charged a lot more than I was told it would cost. It took me over a year to pay off that hospital bill – every month when the bill arrived was another reminder of what DIDN’T happen.
I received the “your not pregnant” news via a voice message left on my cell phone, the first time. The second time was a call to my office and this last go around I made them call my DH first so I didn’t get the call. They called him while he was working and left a VM on his cell phone. I have never heard from anyone since.
[…] if in response to my post last week about the way in which life-changing news about infertility is delivered, this article popped into my inbox a couple of days […]