I honestly had no idea when AF was going to show up. I bled for nearly ten days after my hysteroscopy, some of which was attributed to stopping my birth control pills. Ideally, I would have been started on Estradiol to help build my uterine lining, but my blood pressure precluded me from doing so. Oral contraceptives had previously suppressed my ovaries and delayed their return to ovulation. I decided not to use my Clear Blue Easy monitor, as I suspected it would give an inaccurate reading. This was going to be a lesson in patience...
It's hard to be deliberately oblivious. Just days after my bleeding tapered off, I had some thick goobs of mucus. I knew not to get excited; fool me once cervical mucus -shame on you, fool me twice -shame on me. My weight crept up three pounds above by baseline, despite controlling my caloric intake and doing a few extra swim workouts plus increasing my long run to 8 miles. Could it be bloating associated with my luteal phase? My face was breaking out despite using the products recommended at my last facial -was endogenous progesterone to blame?
I was rummaging through my desk at work and a came across a button my medical assistant had given me. It features a picture of a uterus with the message "In Uteruo We Trust". She found it on cafe press.com and thought it would appeal to the Gyn and athiest in me. I paused for a moment after reading it. It was time to relent and accept that AF would arrive when my uterus was ready to proceed. I would stop trying to analyze symptoms. I am getting fat and I have adult acne. I would not be checking my progesterone level. I even stopped staring at the toilet paper.
Actually, I started wishing for a later arrival. I figured more time would allow my blood pressure to get sorted. My readings had been normal, so I stopped my Labetalol for over a week, but the numbers were creeping up, so I had to restart my meds. I felt I needed to get rid of the excess weight before a possible pregnancy. I wanted to clear the Easter holiday and my remaining swim meets to avoid any scheduling conflicts. And then she arrived -exactly four weeks after my hysteroscopy.
For the first time since I can remember, I had bad cramping and my bleeding was a bit heavier -I had to upgrade to regular absorbency tampons. So far, not impressed with my septum free uterus. Also annoying; I had a swim meet on my CD2, the day I needed to have my baseline ultrasound. I considered bailing on my meet, but thought better of it. Life rolls on. Fortunately, my events were scheduled at the beginning and the end of the meet. I swam my 100 Free (equalled my best time in practice, so a little disappointing) but had to leave before the 50 Fly. I made it to my appointment on time with my wet hair and goggle marks. Ovaries look "quiet", so we're good to go! I trekked back over the Bay Bridge just in time for the last two events of the meet. I swam a personal best in my 50 Free and turned in a decent time for a sloppy 100 IM.
Oh, as I was checking in with my phone during my travels (not while I was driving, of course!) I saw that Co-worker debuted the news about her twins on Facebook and I received an email blast from another friend announcing her pregnancy. Sigh. Head down, focus on your own lane. Just keep swimming...
Sunday, 31 March 2013
Friday, 29 March 2013
My False Alarm
I received yet another letter indicating that my insurance authorised an IUI cycle. This is actually the fourth time the procedure has been authorised, but we've yet to start the process. I took note of the date on the letter, previous authorisations were for a duration of six weeks; this most recent one was from 1 March -15 June. I figured that the woman who obtains insurance authroisations (who by the way, is probably pretty annoyed with me) felt that I could get 2-3 cycles within that stretch of time. I am hoping I can do at least one.
The process of stopping the birth control pills and having the hysteroscopic resection of my uterine cavity essentially reset my cycle and theoretically, I should expect my next cycle to start in 4-6 weeks. However, I pointed out to my RE that I have post pill amenorrhea on my resume. He initially doubted that ten days of pills would suppress my ovarian function, but I reminded him that just one tablet of emergency contraception delayed my cycle for eight weeks. He asked me to keep him posted.
I didn't expand upon my first experience with post pill amenorrhea. During my second year at University, my 'boyfriend' went to study in Spain for the spring term. Assuming that we would remain faithful to each other, I decided to stop my pills in order to conserve supplies. I completed the pill pack and had my withdrawal bleed around Christmas time, about a week after our final act of coitus. It didn't dawn on me until the middle of February that I didn't have a period in January. At first, I didn't panic. I blamed the process of going home for the holiday break and returning to school, and I figured it would arrive any day. It didn't. By the first week of March, I started to entertain the possibility that I could be pregnant.
Like many teenagers, I was knee deep in denial. How could this have happened? I thought I did all the right things to take precautions. I also questioned how it could be possible as I didn't actually have sex since my last period; but until AF arrived, I considered myself pregnant until proven otherwise. It was time to take the test. I drove to a pharmacy a few towns over, just to avoid running into someone I knew. My strategy was to purchase the test and get out of there as quick as possible. I picked up a few other miscellaneous items in order to hide the test in my shopping basket and hopefully distract the check-out girl. It didn't work. As other customers stood behind me in the queue, she carefully studied the box containing the POAS test, and asked me, "Is this brand any good?". I wanted to die. It was so hard to accept that I was in this situation and this woman was looking for a consumer reports survey.
I went to a public restroom to take the test and paced around the stall as I meticulously timed three minutes. The instructions noted it would show a 'plus' sign if positive and a 'minus' sign for negative. I took a deep breath and prepared for the reveal. There was a prominent line that looked like a minus sign, but there was another fainter line present. However, it looked more like an 'X' than a plus sign. Confused, I used a pay-phone to call the advise line listed on the instructions. The woman simply told me to interpret anything with two lines as being positive.
My next call was to Planned Parenthood to schedule an appointment. It felt awkward that I couldn't discuss any of these details with my 'boyfriend', as he hadn't given me any of his contact information in Spain. Alas, it finally occurred to me that he really wasn't a 'boyfriend'; we were merely friends with special privileges. I arrived at the clinic and was instructed to provide a urine sample, before returning to the waiting room to complete paperwork. I had barely finished the first page when the receptionist opened the window at her desk and called my name. "You can leave, Honey" she announced to the entire waiting room. "You're not pregnant."
WHAT!?! I felt such an immense sense of relief, but I was still so confused. If I wasn't pregnant, what happened to my period? I asked to speak to someone to get some answers. After waiting for over an hour, a medical assistant called me back to an exam room. I explained the situation to her. "So you stopped the pill, had a period and didn't have sex, but thought you could be pregnant?" I realised how ridiculous that sounded when she said it out loud. I told her about my positive home test and she simply replied, "Oh, that brand is really cheap." I thought about going back to the pharmacy to share this information with the enquiring check-out girl.
I met with the Nurse Practitioner, who explained that I had post pill amenorrhea. My ovaries were just taking their sweet time to resume functioning (oh, they were such bitches even back then). She reassured me that my period would return in time and offered me a shot of "Pee-in-oil" to help bring on my period. I declined, and decided that I could wait a little longer. She recommended resuming the pill once my period did start, as she advocated the many benefits of the pill; including being immediately contraceptively protected if I were to engage in any spontaneous behaviour, or start a new relationship. I'm sure she mentally added the words 'with someone who actually respects you' to the end of that sentence. A few days later, I was driving while rocking out to Madonna's Immaculate Collection and the cassette player ate my tape right in the middle of 'Material Girl' (those of you who are old enough remember how devastating that was). I burst into tears, but felt so happy as I knew what this emotional outburst was hearlding. Sure enough, I had a visitor arrive that night. I had never been happier to be reunited with AF. Until now.
The process of stopping the birth control pills and having the hysteroscopic resection of my uterine cavity essentially reset my cycle and theoretically, I should expect my next cycle to start in 4-6 weeks. However, I pointed out to my RE that I have post pill amenorrhea on my resume. He initially doubted that ten days of pills would suppress my ovarian function, but I reminded him that just one tablet of emergency contraception delayed my cycle for eight weeks. He asked me to keep him posted.
I didn't expand upon my first experience with post pill amenorrhea. During my second year at University, my 'boyfriend' went to study in Spain for the spring term. Assuming that we would remain faithful to each other, I decided to stop my pills in order to conserve supplies. I completed the pill pack and had my withdrawal bleed around Christmas time, about a week after our final act of coitus. It didn't dawn on me until the middle of February that I didn't have a period in January. At first, I didn't panic. I blamed the process of going home for the holiday break and returning to school, and I figured it would arrive any day. It didn't. By the first week of March, I started to entertain the possibility that I could be pregnant.
Like many teenagers, I was knee deep in denial. How could this have happened? I thought I did all the right things to take precautions. I also questioned how it could be possible as I didn't actually have sex since my last period; but until AF arrived, I considered myself pregnant until proven otherwise. It was time to take the test. I drove to a pharmacy a few towns over, just to avoid running into someone I knew. My strategy was to purchase the test and get out of there as quick as possible. I picked up a few other miscellaneous items in order to hide the test in my shopping basket and hopefully distract the check-out girl. It didn't work. As other customers stood behind me in the queue, she carefully studied the box containing the POAS test, and asked me, "Is this brand any good?". I wanted to die. It was so hard to accept that I was in this situation and this woman was looking for a consumer reports survey.
I went to a public restroom to take the test and paced around the stall as I meticulously timed three minutes. The instructions noted it would show a 'plus' sign if positive and a 'minus' sign for negative. I took a deep breath and prepared for the reveal. There was a prominent line that looked like a minus sign, but there was another fainter line present. However, it looked more like an 'X' than a plus sign. Confused, I used a pay-phone to call the advise line listed on the instructions. The woman simply told me to interpret anything with two lines as being positive.
My next call was to Planned Parenthood to schedule an appointment. It felt awkward that I couldn't discuss any of these details with my 'boyfriend', as he hadn't given me any of his contact information in Spain. Alas, it finally occurred to me that he really wasn't a 'boyfriend'; we were merely friends with special privileges. I arrived at the clinic and was instructed to provide a urine sample, before returning to the waiting room to complete paperwork. I had barely finished the first page when the receptionist opened the window at her desk and called my name. "You can leave, Honey" she announced to the entire waiting room. "You're not pregnant."
WHAT!?! I felt such an immense sense of relief, but I was still so confused. If I wasn't pregnant, what happened to my period? I asked to speak to someone to get some answers. After waiting for over an hour, a medical assistant called me back to an exam room. I explained the situation to her. "So you stopped the pill, had a period and didn't have sex, but thought you could be pregnant?" I realised how ridiculous that sounded when she said it out loud. I told her about my positive home test and she simply replied, "Oh, that brand is really cheap." I thought about going back to the pharmacy to share this information with the enquiring check-out girl.
I met with the Nurse Practitioner, who explained that I had post pill amenorrhea. My ovaries were just taking their sweet time to resume functioning (oh, they were such bitches even back then). She reassured me that my period would return in time and offered me a shot of "Pee-in-oil" to help bring on my period. I declined, and decided that I could wait a little longer. She recommended resuming the pill once my period did start, as she advocated the many benefits of the pill; including being immediately contraceptively protected if I were to engage in any spontaneous behaviour, or start a new relationship. I'm sure she mentally added the words 'with someone who actually respects you' to the end of that sentence. A few days later, I was driving while rocking out to Madonna's Immaculate Collection and the cassette player ate my tape right in the middle of 'Material Girl' (those of you who are old enough remember how devastating that was). I burst into tears, but felt so happy as I knew what this emotional outburst was hearlding. Sure enough, I had a visitor arrive that night. I had never been happier to be reunited with AF. Until now.
Wednesday, 27 March 2013
There's Always Something There to Remind Me
Around the time I started to realise that we were having fertility difficulties, my favourite radio station started airing ads for XYZ Fertility Centre. The commercial begins with a somewhat haunting version of "Lullaby and Good Night" and opens with comments from the doctors at XYZ Fertility Centre. "The best part of my job is seeing my patient pregnant" says one female, a bit nervously. Umm, you're a fertility specialist, that's not part of your job, that IS your job! Then an older sounding male chimes in, "The only thing better than seeing that heartbeat on an ultrasound is delivering a baby" Oh, I laughed so hard when I heard that line, as it makes it seem that REs are actually the ones getting up in the middle of the night to deliver babies!
I would come to accept that it wasn't just my dissection of semantics or sub-specialty resentment that caused me to find these ads so irritating. It was the fact that I felt that they were specifically talking to me "Jane, you know you're having trouble conceiving. Jane, this message is for you. Jane, you know you will need fertility treatments..." Overtime, I would acknowledge this reality and even endorse my infertile status in different ways, but it started to become instinctive that as soon as I would hear the creepy lullaby music, I would switch off the radio and flip to Green Day's American Idiot, which is the only CD I have in my car.
Until recently, when XYZ Fertility Centre changed their advertising structure and their message is now read by the on-air talent. While driving to work the other day I had Greg Gory asking me, "Are you having difficulty starting a family? When life needs a little encouragement, there's XYZ Fertility Centre. Now onto our traffic report..." Sigh. There was no warning and no time to escape. Yes, I know you're talking about me. Do I really need to be reminded?
It dawned on me that there will always be something to remind me. I carry the words of Amanda Griswold (who inspired me to start blogging) who, after finally achieving a viable twin pregnancy after a failed IVF and FET, reflected "we all know that infertility never leaves you. It will always be a part of us and affect how we feel." I hope our infertility journey ends with our baby, but however it ends, I know I will never forget what I learned during the process. I vow that if I become a survivor, I will not be insensitive and aloof like my cousin. Will I still be annoyed by the radio commercials for XYZ Fertility Centre? Perhaps...
Monday, 25 March 2013
Mourning has Broken
A few months ago, I was browsing a thread on an online fertility forum and I took note of a woman dealing with severe male factor infertility who described she was mourning the loss of not experiencing a 'natural' or 'normal' pregnancy. Loss is an appropriate description. There is a loss of privacy. In the landmark decision Roe v. Wade, the Supreme Court declared that 'the decision whether to beget or not to beget a child is so fundamentally private' that it deserves constitutional protection. Unfortunately, this right to privacy doesn't extend to discussing your sex life with your RE. There is a loss of intimacy and there is a literal disconnect between you and your partner during aspects of the process, as well as the inclusion of other individuals. There is a loss of dignity, as all your lady bits (both internal and external) are repeatedly exposed and your partner has to wank in a special room, where many other men have...yeah, don't think about that. There is a loss of self-assurance and some times a displaced self-confidence. Everyone feels a sense of betrayal when one learns that his or her body can't perform in the way it is expected. Some experience a loss of femininity or masculinity. Infertility can create doubt and cause couples to question if they actually should become parents, and some may interpret IF as a sign that they don't deserve to have a baby. Bank accounts certainly reflect a financial loss.
Although it is legitimate to grieve these losses, I reminded this woman about a previous thread she started where she asked the forum, "Does anyone ever feel they are lucky to experience infertility?" The responses were astounding. Many women replied that their IF issues became a catalyst to make healthy lifestyle changes. Diets improved, exercises programs were started, a few commented that they had easier pregnancies because of their weight loss. One woman noted that while dealing with IF, she finally acknowledged that she was an alcoholic and became sober. Some forum members noted that the experience strengthened their relationships with their partners, and others commented that it enhanced their appreciation as parents. A few detailed how they were found to be carriers of certain genetic diseases and they were able to use PGD to avoid the devastation of bearing a child with a fatal or disabling condition. One woman described that she felt fortunate to have gone through IVF as the "right" sperm and "right" egg were selected to produce her amazing daughter.
I thought about some examples in my own life. A good friend of mine met the love of her life when she was 35 and married two years later. They wanted to start a family right away, but a few months after their wedding, his older brother was diagnosed with Hodgkin's lymphoma and his father was diagnosed with lung cancer (a non-smoker). The next year and a half of their life was dedicated to caring for their loved ones and procreation was pushed to the back burner. After six months with no conception, they went for their work up. No major issues were identified, but IVF was recommended because of her age. After three rounds of stims, and despite adequate retrieval rates and ICSI, no embryos were ever available for a transfer. I asked her if she thought the failure to fertilise was so their children would not inherit that cancer history. She agreed. They proceeded with embryo adoption and had a pair of boy/girl twins last year. I couldn't think of a better ending for their journey.
Last year, I saw a newly pregnant patient and while reviewing her history I saw she had an infertility work-up and severe male factor infertility was found. She met with an RE, who thought they were candidates for mTESE and IVF/ICSI, however their current pregnancy was achieved with Artificial Insemination(AI) using donor sperm. I asked if they would't mind sharing how they made this decision. Her husband answered, "Go through all that torture just to pass my family history of diabetes and heart disease onto my kid? No, thank you." I loved the way he used the term 'my kid'. Additionally, they did their AI at home. Full of male pride, he bragged, "At the end of the day, I'm still the one who got her pregnant." I have another friend who went through adoption to create her family. Her husband is a second generation American whose family hails from Taiwan. They went to his county of origin to adopt their son and met members of his extended family and travelled over Asia. No, they never had the moment of witnessing a heartbeat on an ultrasound, but their adoption process led them to the journey of a lifetime.
It all reminds me of a pep talk I received before competing in my first triathlon. The event organisers arranged to have a former Olympian provide words of wisdom to newbie triathletes. She asked various members of the crowd how they prepared for the event and she asked "what did you gain from your training?" Some learned to swim or bike for the first time. Many lost weight, but gained muscle tone and confidence. New friendships were forged and bonds of established relationships were strengthened. "Think about all that you have achieved before you even reach the starting line..." she instructed all the nervous participants. Yes, the losses associated with infertility are very tangible and painful. However, the gains associated with infertility are also very real. It's worthwhile to take a step back and appreciate all that has been achieved prior to achieving a pregnancy.
Saturday, 23 March 2013
I am so an original...
"Is it a boy or girl?"
Since the use of diagnostic genetic testing and ultrasound in obstetrics, it seems that almost all pregnant women and their partners can't wait to find out their baby's gender. At nearly every new OB visit with a primigravida, I mentally time how long it takes before they ask "how soon can we find out?" There are so many more options for novelty scans just to determine gender as well as a growing trend for 'reveal' parties. Yet, despite all this technology there are still some old school couples who want to keep the surprise until the end. I always found the delivery to be much more fun if the gender was unknown, and even when I thought I didn't ever want to have a baby, I always said that I would keep the gender a secret. (For the record, I have witnesses)
As Myrtle was a bit older than me, I looked up to her when we were growing up and I tried to emulate everything she did, which in turn really irritated her and she complained to her parents and mine that I was always "copying" her. Truth be told, I feared that I could be perceived as copying her again if I got pregnant soon after she made her announcement, which served as the silver lining for my next few BFNs. When she confronted me about seeming distant toward her pregnancy, she asked "Are upset that I became pregnant before you as you've been married longer?" I told her that was ridiculous and perhaps irrelevant as I wasn't sure I could become pregnant. In all honesty, I was jealous that she was pregnant and I wasn't. I was frustrated that I was struggling to conceive while it came so quickly for her. I wasn't bothered at all about her being first. Until she announced that she would be keeping the gender a surprise. Sigh. Should I ever become pregnant, I'll be seen as copying once again.
I don't know why I'm yielding so much to my inner 8 year old self. Infertility teaches us to appreciate what is really important and to disregard the trivial stuff. However, there is so much taken away from us during this process, are we to be denied petulant whining too? Co-worker just had her anatomy scan this week and also decided not to know their genders (although I had a dream she's having a boy and a girl). It's just another disadvantage of being infertile. Everyone around you gets first crack at shower ideas, nursery themes, baby names...etc... One of my other favourite scenes from 'the Baby Shower' episode of Sex and the City is when Charlotte discovers that the mother to be is planning to use her selected baby name. The other mothers can't understand why she is so upset; after all she's not even pregnant. Even though she probably agrees with them, Samantha comes to Charlotte's defense by yelling "You, bitch!" to the honoured guest and leads the girls to storm out of the party.
On some level there is a concern that the friends and family who promised, "it will be your turn one day!" might actually be too busy to give you the same attention when or if it does happen. Husband and I were quite generous to our friends in England when their babies were born, but as they all have at least two or three kids, I'm not expecting that we would get any gifts (not that it matters, at all). Alternatively, the other possibility is that you'll get everyone's used furniture and baby items, and not to be ungrateful, but it seems that it was more about your friend's need to clean the clutter from the attic than to give you a meaningful gift. Additionally, pregnancy is now old news as everyone has been there, done that. Although, you may have one friend who after being pregnant once, is now an expert and will lead you through what to expect while you're expecting, least you try to experience anything yourself. At the same time I also fear receiving extra attention and having others treat the pregnancy as if it is uber special, you know...given the circumstances...
In truth, I really don't want any attention if I do ever become pregnant. I won't tell my parents until after 20 weeks and I'm planning not to tell my staff at work. I want to see how far along I can get before someone is brave enough to tell me I'm getting fat. I don't want a baby shower or any gifts. I just wish I could be thought of as being original for withholding the gender until the end.
Thursday, 21 March 2013
Deceived to Conceive? (part two)
My previous post Deceived to Conceive? explored the question 'how do you know you're getting a fair deal from your RE?' The discussion continues with an example from my case files...
It was the Friday afternoon headed into a holiday weekend and I had a new patient on my schedule with the words "fertility consult" in the appointment comment notes. It was taking my medical assistant a long time to do her intake -never an encouraging sign. Finally she emerged from the room and gave me a look that expressed, ''you have your work cut out for you." I walked in the room and introduced myself. The patient was a 30 year old woman and she had a beautiful 2 year old boy on her lap. I asked if her if he was hers and she nodded. Then I asked her to tell me about her history. She described that she had regular periods as an adolescent. She started birth control pills when she was 22 and stopped at age 27 when she wanted to become pregnant. She conceived on her second or third attempt, but unfortunately was found to have a miscarriage at 8 weeks. At the time of that ultrasound, she was told she had PCOS based on the appearance of her ovaries. After her D+C, she was referred to an REI and went through IVF immediately and succeeded on her first cycle. However, she had to pay out of pocket for IVF and was hoping for something less invasive and less expensive in order to conceive again.
As a point of reference, Polycystic Ovarian Syndrome (PCOS) is a very complex condition and our understanding of its etiology and expression is still evolving. The diagnostic criteria has changed a few times, and even renaming the entity has been proposed. It largely remains to be a clinical diagnosis and labs and imaging only support the diagnosis. However, there are many patients with atypical variants of PCOS, who present diagnostic challenges. Overall, no one single factor should establish the diagnosis and in particular, as normal women can have ovaries with a PCOS appearance, the diagnosis should not be based on ultrasound findings alone. This particular patient did not have any clinical features associated with PCOS. She was not obese, she did not have acne nor oily skin. She did not have evidence of hirsuitism. By her history she had regular menstrual cycles and she had conceived spontaneously. Admittedly, I didn't have any lab testing or other records for her, but I was in doubt of her diagnosis. More so, I was surprised that she was referred straight to IVF given how quickly she conceived after stopping her pills and had no established infertility. I began to question if she may have been sold a bill of goods.
I didn't know how to convey this to her, and I wasn't sure if was my place to tell her. I suggested that if she wanted the least invasive and least expensive course for conception, she could just try to conceive naturally -as it had worked for her previously. [Her periods returned after breastfeeding and she was having regular cycles, they were currently using condoms for contraception] "I can't." she informed me, "because of my PCOS, I'm going to miscarry again if I conceive on my own." WOW, I thought, while acknowledging that there can be a disconnect between what providers say and what patients think they hear. It seemed that her previous RE really did a number on her. Yes, some studies note a higher miscarriage rate in PCOS women (again, causation factors aren't completely understood) but this woman believes that spontaneous conception is some how dangerous. I asked her specifically what she was looking for to help her conceive in a non-invasive manner.
"I was hoping you can ultrasound my ovaries today and give me a shot so I'll ovulate. My mother-in-law is going to watch my son and my husband and I are going to Napa for the long weekend." At this point, I started to wonder if I was being set up with a 'secret shopper' patient to evaluate my recommendations. It seemed odd that a woman who went through stimulation and retrieval would think that I could just randomly induce her ovulation. More so, it was interesting that she thought that a trigger shot would some how protect her against having a miscarriage, as if it had powers to fortify the egg. I asked her if she conceived her son using her own eggs. "Yes." she snapped, a little surprised by the question. I reviewed that a trigger shot only affects timing, not the egg itself. Furthermore, I explained to her the need for follicle monitoring and informed her that it is not a service provided in our practice. I could not furnish her request as we don't even carry Ovidrel in our medicine cabinet. However, I was concerned about her going back to the RE who may have deceived her into an erroneous diagnosis and false need for IVF.
I reminded her that miscarriage is quite common, and is not prevented by assisted reproduction. Many women have normal healthy pregnancies after a miscarriage and (although I still questioned her diagnosis) I informed her that even women with PCOS can conceive spontaneously and have good outcomes, and encouraged her again to ditch the condoms and try on her own for a little while. "I already told you. I can't conceive on my own, I'll miscarry again." she reiterated, clearly becoming frustrated with me. It's always awkward to contradict another provider, especially when you don't have all the information, but I decided to be honest with her and revealed that I was suspect of her PCOS diagnosis. "I was diagnosed by experts at XYZ! [a prestigious university]" she put me in my place. I asked her to arrange to transfer her records from XYZ, so I could review and determine how best to help her. She thanked my for my time and walked out the door. I knew I would never see her again. I was only a lowly bread and butter Ob/Gyn provider looking out for her [Coach] pocketbook.
It was the Friday afternoon headed into a holiday weekend and I had a new patient on my schedule with the words "fertility consult" in the appointment comment notes. It was taking my medical assistant a long time to do her intake -never an encouraging sign. Finally she emerged from the room and gave me a look that expressed, ''you have your work cut out for you." I walked in the room and introduced myself. The patient was a 30 year old woman and she had a beautiful 2 year old boy on her lap. I asked if her if he was hers and she nodded. Then I asked her to tell me about her history. She described that she had regular periods as an adolescent. She started birth control pills when she was 22 and stopped at age 27 when she wanted to become pregnant. She conceived on her second or third attempt, but unfortunately was found to have a miscarriage at 8 weeks. At the time of that ultrasound, she was told she had PCOS based on the appearance of her ovaries. After her D+C, she was referred to an REI and went through IVF immediately and succeeded on her first cycle. However, she had to pay out of pocket for IVF and was hoping for something less invasive and less expensive in order to conceive again.
As a point of reference, Polycystic Ovarian Syndrome (PCOS) is a very complex condition and our understanding of its etiology and expression is still evolving. The diagnostic criteria has changed a few times, and even renaming the entity has been proposed. It largely remains to be a clinical diagnosis and labs and imaging only support the diagnosis. However, there are many patients with atypical variants of PCOS, who present diagnostic challenges. Overall, no one single factor should establish the diagnosis and in particular, as normal women can have ovaries with a PCOS appearance, the diagnosis should not be based on ultrasound findings alone. This particular patient did not have any clinical features associated with PCOS. She was not obese, she did not have acne nor oily skin. She did not have evidence of hirsuitism. By her history she had regular menstrual cycles and she had conceived spontaneously. Admittedly, I didn't have any lab testing or other records for her, but I was in doubt of her diagnosis. More so, I was surprised that she was referred straight to IVF given how quickly she conceived after stopping her pills and had no established infertility. I began to question if she may have been sold a bill of goods.
I didn't know how to convey this to her, and I wasn't sure if was my place to tell her. I suggested that if she wanted the least invasive and least expensive course for conception, she could just try to conceive naturally -as it had worked for her previously. [Her periods returned after breastfeeding and she was having regular cycles, they were currently using condoms for contraception] "I can't." she informed me, "because of my PCOS, I'm going to miscarry again if I conceive on my own." WOW, I thought, while acknowledging that there can be a disconnect between what providers say and what patients think they hear. It seemed that her previous RE really did a number on her. Yes, some studies note a higher miscarriage rate in PCOS women (again, causation factors aren't completely understood) but this woman believes that spontaneous conception is some how dangerous. I asked her specifically what she was looking for to help her conceive in a non-invasive manner.
"I was hoping you can ultrasound my ovaries today and give me a shot so I'll ovulate. My mother-in-law is going to watch my son and my husband and I are going to Napa for the long weekend." At this point, I started to wonder if I was being set up with a 'secret shopper' patient to evaluate my recommendations. It seemed odd that a woman who went through stimulation and retrieval would think that I could just randomly induce her ovulation. More so, it was interesting that she thought that a trigger shot would some how protect her against having a miscarriage, as if it had powers to fortify the egg. I asked her if she conceived her son using her own eggs. "Yes." she snapped, a little surprised by the question. I reviewed that a trigger shot only affects timing, not the egg itself. Furthermore, I explained to her the need for follicle monitoring and informed her that it is not a service provided in our practice. I could not furnish her request as we don't even carry Ovidrel in our medicine cabinet. However, I was concerned about her going back to the RE who may have deceived her into an erroneous diagnosis and false need for IVF.
I reminded her that miscarriage is quite common, and is not prevented by assisted reproduction. Many women have normal healthy pregnancies after a miscarriage and (although I still questioned her diagnosis) I informed her that even women with PCOS can conceive spontaneously and have good outcomes, and encouraged her again to ditch the condoms and try on her own for a little while. "I already told you. I can't conceive on my own, I'll miscarry again." she reiterated, clearly becoming frustrated with me. It's always awkward to contradict another provider, especially when you don't have all the information, but I decided to be honest with her and revealed that I was suspect of her PCOS diagnosis. "I was diagnosed by experts at XYZ! [a prestigious university]" she put me in my place. I asked her to arrange to transfer her records from XYZ, so I could review and determine how best to help her. She thanked my for my time and walked out the door. I knew I would never see her again. I was only a lowly bread and butter Ob/Gyn provider looking out for her [Coach] pocketbook.
Tuesday, 19 March 2013
Deceived to Conceive? (part one)
Money matters have a way of making so many situations uncomfortable; especially when it comes to infertility, which already has so many awkward facets. I have a form of elitist guilt as I am fortunate enough to be able to afford fertility treatments, when I know there are so many infertile couples who can not. A friend, who is an infertility survivor via domestic open adoption, recently pointed out that there are public funds available for low income uninsured or under insured women who do not desire pregnancy and want contraception, or who are pregnant and need an abortion or prenatal care; but no help exists for such women who are experiencing infertility. After I told Myrtle about my first RE visit, she told me "I know how lucky I am, I wouldn't be able to afford IVF." I was stunned by her admission. Myrtle is a trust fund baby and has had almost no financial worries for most of her life. Did she just not know the actual estimated costs for an IVF cycle? Probably not, why would she? I didn't ask any follow up questions as I didn't want to pry into her current situation. A male colleague, who also hails from money, told me that he describes the cost of an IVF cycle "like buying a Kia". Sigh. Not everyone can afford a Kia, and financing options exist for buying a car.
I was following the posts of one particular member on the infertility forum. Her husband was found to have a sperm count of 300K with abnormal morphology and motility during their infertility work-up. Her RE initially recommended AI or IUI with donor sperm as the most likely to be successful and cost effective treatment method, as he doubted they could achieve fertilization with ICSI. The couple met with a geneticist and a urologist and actually found an answer. He had a congenital absence of the vas deferens, but after starting some supplements his counts improved and they were re-considered to be ICSI candidates. When they shared the diagnosis and these developments with their parents, his mother's first response was to ask, "How do you know they're not just trying to take your money?"
For so many reasons, it's hard for parents to accept the diagnosis of their grown children's infertility. The emotional response is overwhelming and especially if they didn't experience any infertility issues, they may not be versed with the mechanical particulars. As he came from a large family and no one else seemed to have any fertility issues, I can definitely appreciate where she was coming from. Yet, it was interesting to read her response in the setting of such a clear-cut diagnosis; especially knowing that the RE leveled with them initially and advised against IVF when he thought it wouldn't work. However, she does make a good point: How do you know they're not just trying to take your money?
Admittedly, infertiles are a vulnerable population. We come to the office expecting to pay a large sum of money.While I hesitate to use the word desperate, there is a certain willingness to succeed no matter the cost. It's like the Mastercard commercials: Initial RE Evaluation $300, Semen Analysis $200, Hystersalpingogram $1200, Ovarian stimulating drugs $3,500, One IVF cycle $9,975. Holding your baby in your arms: priceless. At the same time, it's valid to question if you are getting a fair deal from your RE. Unfortunately, it's not always easy to achieve a straight forward answer. REs can be victims of the 'damned if you do, and damned if you don't' mentality. If one recommends doing a few IUI cycles before IVF, he or she could be accused of wasting a patient's time and money, but he or she could also be suspected of financial motivation if IVF is advised straight away. (For the record, some studies have noted that couples who start with IVF achieve a pregnancy sooner and spend less money in total.)
I attended a conference on infertility last September, and gained some perspectives from REs themselves. One shared an observation of visiting a clinic with low success rates and noted many patients were of higher ages, had high FSH levels and not surprisingly had poor response to stimulation with low retrievals. He questioned the professional ethics of leading women through this process and collecting fees when the data shows the failure is so high. However, others pointed out that some women with those parameters are willing to pay as they hope to become an outlier. A few commented that they've adjusted their documentation to emphasize when they've recommended against using own eggs and patients insist on proceeding with a cycle. Another commented on a trend he witnessed where an RE will refer a patient with DOR to another RE in the community promising the claim, "You should see Dr X, he has great success rates with low AMH levels". Thus, the underlying motivation is to skip out on the revenue from this patient in order to maintain higher success rates and make the practice attractive to new clients. Always an eye on the bottom line.
I think ultimately it relies on trusting your instincts while making some efforts to be a savvy consumer. I confess that I anonymously ran my case by another RE to check my RE's recommendations. Another benefit of networking with other infertiles is being able to observe treatment plans and protocols with others who have similar situations, which helps establish trends for standards of care. It's one more challenge to address while navigating through infertility.
This discussion continues in my next post...stay tuned!
I was following the posts of one particular member on the infertility forum. Her husband was found to have a sperm count of 300K with abnormal morphology and motility during their infertility work-up. Her RE initially recommended AI or IUI with donor sperm as the most likely to be successful and cost effective treatment method, as he doubted they could achieve fertilization with ICSI. The couple met with a geneticist and a urologist and actually found an answer. He had a congenital absence of the vas deferens, but after starting some supplements his counts improved and they were re-considered to be ICSI candidates. When they shared the diagnosis and these developments with their parents, his mother's first response was to ask, "How do you know they're not just trying to take your money?"
For so many reasons, it's hard for parents to accept the diagnosis of their grown children's infertility. The emotional response is overwhelming and especially if they didn't experience any infertility issues, they may not be versed with the mechanical particulars. As he came from a large family and no one else seemed to have any fertility issues, I can definitely appreciate where she was coming from. Yet, it was interesting to read her response in the setting of such a clear-cut diagnosis; especially knowing that the RE leveled with them initially and advised against IVF when he thought it wouldn't work. However, she does make a good point: How do you know they're not just trying to take your money?
Admittedly, infertiles are a vulnerable population. We come to the office expecting to pay a large sum of money.While I hesitate to use the word desperate, there is a certain willingness to succeed no matter the cost. It's like the Mastercard commercials: Initial RE Evaluation $300, Semen Analysis $200, Hystersalpingogram $1200, Ovarian stimulating drugs $3,500, One IVF cycle $9,975. Holding your baby in your arms: priceless. At the same time, it's valid to question if you are getting a fair deal from your RE. Unfortunately, it's not always easy to achieve a straight forward answer. REs can be victims of the 'damned if you do, and damned if you don't' mentality. If one recommends doing a few IUI cycles before IVF, he or she could be accused of wasting a patient's time and money, but he or she could also be suspected of financial motivation if IVF is advised straight away. (For the record, some studies have noted that couples who start with IVF achieve a pregnancy sooner and spend less money in total.)
I attended a conference on infertility last September, and gained some perspectives from REs themselves. One shared an observation of visiting a clinic with low success rates and noted many patients were of higher ages, had high FSH levels and not surprisingly had poor response to stimulation with low retrievals. He questioned the professional ethics of leading women through this process and collecting fees when the data shows the failure is so high. However, others pointed out that some women with those parameters are willing to pay as they hope to become an outlier. A few commented that they've adjusted their documentation to emphasize when they've recommended against using own eggs and patients insist on proceeding with a cycle. Another commented on a trend he witnessed where an RE will refer a patient with DOR to another RE in the community promising the claim, "You should see Dr X, he has great success rates with low AMH levels". Thus, the underlying motivation is to skip out on the revenue from this patient in order to maintain higher success rates and make the practice attractive to new clients. Always an eye on the bottom line.
I think ultimately it relies on trusting your instincts while making some efforts to be a savvy consumer. I confess that I anonymously ran my case by another RE to check my RE's recommendations. Another benefit of networking with other infertiles is being able to observe treatment plans and protocols with others who have similar situations, which helps establish trends for standards of care. It's one more challenge to address while navigating through infertility.
This discussion continues in my next post...stay tuned!
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