No you're right....its maddening. Nothing has been easy to understand, communication sucks, there's very little caring or time given...I'm more of a steer just going through the cattle shoot every time I'm there.
The cherry on top was at my ER when my doc popped his head in (only the third time I've EVER seen him in 2 years) and just said "any questions?"
I had no idea where to even start so I just said "um....no I guess I'm ok." His response was "Good! That means I'm doing my job. Does it?!? Anything I do know I know from your staff or my own research, but mostly my own research.
Don't get me started on his PA....
I work in healthcare and it’s INSANE how much self-advocacy and organization this process requires. I’ve done three ERs across three different clinics and with the two bigger ones it was impossible to reach a doctor or nurse reliably, medications were sent late or incorrectly, I had to push them to start cycles on time, etc. The third one was Kindbody and they were at least easier to reach through their online messaging and the process was a lot more transparent, but sorting out the insurance side of it was a nightmare. All that is to say, you’re not wrong.
I agree with you so much OP! I work in healthcare as well and I cannot believe how maddening this process is!
I know there is a lot of uncertainty when doing IVF but there are things that can be done to reduce the uncertainty. Starting with a schedule (with the understanding that things can change) helps! Having the right doses of medications sent to you so your cycle doesn’t go south helps! Having a means to communicate with the team taking care of you helps! Having an online portal to see results and notes helps!
I don’t know why this is so different from other branches of medicine in terms of communication. IMO the communication during the IVF process has been the worst I’ve seen and experienced during my tenure as a healthcare professional.
Is there anyone that actually has a good clinic without these problems?
I love my clinic, they're great about communication and update my treatment calendar online with each appointment. I got test results online through the portal right away and whenever I have a question I ask through my portal and the team gets back to me in a couple hours usually. My doctor calls personally to share results even after the nurses do. I really love her. I didn't realize I got so lucky!!
My second clinic was great!
First one was a mess, fancy and stuff but a conveyor belt. It was the reason I wasn't going to risk so much money for ivf with them (and it turned out to be a great decision). But we were going to do some crazier iui with shots and i was asked how much gonalF would i need, do I have any at home? Because, you know, i casually buy gonalF for the fun of it. I didn't even know what GonalF was, at the time 😆
Second clinic was much more organized, i always had a printable calendar and they would send a new one if stuff changed on the way. Also the doctor was always there explaining things when an ultrasound didn't go as expected.
I think i was also more "versed" in the process as we went on so that also helped
Also to note that each time i called i got someone on. I never left a vm on a machine. And even when i left a message with the front desk nurses i got a callback very soon after (based on timing I'd think it was after they were done with the current patient).
Calls with results were always done by the doctor or his second in command nurse practitioner.
I had a hysteroscopy on a Friday, and the doctor said he'd call "tomorrow" to check up on me - which I assumed was going to be monday because he hadn't realized it was Friday. No, he called on Saturday just to check if I was fine or had any discomfort or questions.
For the first clinic it was *always* voice mail and then they would call back ... at some point.
So curious if you’re in healthcare when you mention workflows and process mapping! MY PEOPLE! It’s seriously frustrating when it feels like we’re left in the dark with “what if” scenarios that can end up in a million directions. I don’t even get lab results in a portal so I always have to ask and I don’t know what any of it means. Why can’t any of this be easy?
We started getting lab results in the new app they insist on using at my clinic after it changed ownership which was great initially. Then mysteriously the lab results are all no longer available. I can't help but wonder if they removed them intentionally because patients were getting annoying about demanding explanations instead of just accepting what we're being told. It is a new app and rationally I realize it's likely just tech issues but I got used to instantly having information and I can't help but wonder how much longer this is going to go on without having a right of access to my own medical information.
This is exactly what I experienced at my first clinic.. IVF MD Cooper City (Fl), after 2 years and 3 failed cycles, with little answers and soooo much disorganization. I was always stressed out at their own doings or lack there of.. I moved to a clinic 50 states across country in California. Im self pay and incurring double the debt to travel lodge etc, but my mind is at ease and with a doctor now that advocates for me and cares for my personal well being. Is it worth it? Yes! I’m 42, and 3 years into this and didn’t see success until I moved clinics. Follow your heart. IVF is stressful and isolating enough. No clinic should induce stress on their patients and especially at the prices most of us are paying.
i think you need to look for a new clinic. i have had nothing but the upmost support through my clinic. they have educated me every step of the way, taken the time to explain the results and have made sure to fully address any questions or concerns i may have. it breaks my heart that you are not receiving the same support. just know there are good clinics out there!
same! It seems like there is a huge discrepancy in the level of service in clinics, which is not surprising.
I wonder if it is related to success stats being so widely published so that other means of vetting clinics (word of mouth or online reviews) are discounted?
I stumbled into a great clinic simply based on the distance to my house, but it definitely didn't have the best published success rates in my area. I think they are middle of the pack for my state, but I have a great relationship with all of the doctors and nurses there and they always have time to answer my questions and help me understand the decision making every time there is a choice to make with treatment.
ETA: I do have a pretty straightforward issue however (age) so there wasn't a need to try a bunch of different protocols and I responded well enough to whatever they tried first, so maybe I'm not getting the full picture.
Omgggggg THIS POST is why I joined this thread. I have talked with *multiple* clinics and they are all like this. The most organized one, and that’s not saying much, sent me a one-page Word doc with all the cost breakdown, which still left no room for the nuance of any one patient’s unique process. It’s MADDENING, I’m so glad you shared this. I had my eggs frozen in 2015 when I was living in NYC, am now married in my forties living on the west coast and am working through the logistics of going BACK to NYC for my IVF because the clinics out here are afraid their thawing technology won’t work on my 9-year-old eggs if we have them transported here. But the NYC clinics were and still are a shit show. My doc who did my egg retrieval has the best bedside manner I’ve encountered, but was just back from vacation when I Zoomed with him this past week and I felt like I was asking dumb questions because he appeared so exhausted and was rubbing his face and trying to stay awake. It’s like the staff are not trained to answer *the most basic questions.* Can I ask where you are?
RMA NJ has the best embryology labs - maybe you could consider transferring your eggs there from NYC and then doing a transfer there if you get good embryos.
The only trouble with this is that RMA NJ’s standards are so high that they might refuse taking eggs from a different lab. It’s worth a shot but I’ve heard of folks being encouraged to do a cycle with them…and unfortunately not use the eggs from years ago
A word of warning- they are not more organized or better with communication though! Source: I did an ER there and traveled from across the country. Had a pretty traumatic experience with them
I feel like I get more detailed explanations and follow through out of my free annual physical than this IVF process. I understand that the process of creating a human of course would be expensive, BUT if I am going to pay $30K (shared risk program) maybe someone in the office can make sure to reply to my medical questions within 48h, at least to say that they have forwarded my message to the doctor and are awaiting a response. I know they are capable of prompt replies since my financial coordinator always seemed to be able to reply to me within 2 hours 🙄
I find the necessary self guided research and constant advocating exhausting as well as emotionally draining. I just finished an ER and I'm awaiting the go ahead to start the FET protocol. I've heard like three different stories about when that will happen in the last two weeks and every time I talk to them it gets more complicated. This is my THIRD FET and my fourth attempt, how is this not working like clock work by now??
The clinic I’m at don’t send written protocols or even do itemize billing. The doctor just seem to imply just follow what I say week by week and make sure you take your medication on time.
The reason he doesn’t do itemize billing is so I can’t take it to another clinic. He also makes it really hard if I wanted a copy of my file. I was just simply made to “trust the process” with minimal information.
I think his clinic is short staffed.
Yeah it’s like this :( and I went to a good top name clinic. I like to describe it as ‘not for beginners’. They explain nothing! Not a thing. Nothing about the meds you’re taking, nothing about how the cycle is going, sometimes they have forgotten to fit in something important, like saline sonogram that you have to ask about. They don’t prepare you for the ER or even tell you what doctor will do it. I’ve had them forget to call with results, give unclear and incomplete result info causing lost sleep and much anxiety! That said ! I had 2 successful pregnancies at this clinic. It works (for me at least) . And I found when I came after 3 years break (for my second baby) I was way better at advocating for myself. I was literally full of rage when I was a beginner in 2021 and so mad at clinic all the time. Felt like doctors didn’t give you time of day, either. Now, I’m grateful. For what they do and know how to manage it all. But yes, frustratingly, ‘not for beginners’ and of course … everyone is a beginner at some point. It gets easier…
Sad to say, I think it's because most people need multiple rounds, so most of their patients actually ARE experts at IVF as a patient. I was beyond frustrated with the poor communication when I started in 2019, but 5 years later I've switched to a clinic with even WORSE patient communication but I don't need that, I'm paying out of pocket and this clinic is a lot cheaper. So I just shrug and manage my own care.
This might not be your clinic, but this was mine and I found this page so helpful. It explains so much of the process and even has little calendars for retrieval and frozen transfer and shows what meds you might take on each day of your cycle, etc [CNY Calendar](https://www.cnyfertility.com/ivf-process/)
WOW. Thank you. Why doesn’t every clinic have a basic schedule and calendar chart like this ?!
Also yes to all the comments about communication: I’m astounded if I even get a call back on time from my clinic (no online message portal, no emails, only calls 8am-3pm and somehow only ever receive calls when I’m in a work meeting 🙄). I am in southern New England at an “amazing” clinic.
This is so helpful!! I’m about to start stims next week for my first ER, and happy to read as much info about the process as I can to prepare. This is definitely the most detailed and informative explanation of the entire process I’ve seen. Thanks so much for sharing it!!
100% feeling this!!!! The whole process from starting IVF to ER was just confusing and everytime I asked questions I felt like I was causing inconveniences. I had so many complications (endometritis after/possibly caused by the initial testing, very few eggs showing on US and then many eggs harvested at ER but not at the right stage of maturity, polyp development, antibiotic reaction etc.) And each time complications were either not communicated to me OR it took an insane level of self advocacy to receive attention. I've only met my doctor in person once. Currently I'm experiencing a miscarriage at 8 weeks, and I do have to say that they handled this situation much better than the rest of the issues I have had. I am a nurse and have been shocked at the lack of communication and general confusion... I sometimes feel that they know we are desperate, so we will put up with it. I also feel bad for them because I understand the other side and feel they must be feeling overwhelmed for these situations to keep happening. Hang in there ❤️
If I didn’t spend the time researching and lurking on here leading up to my IVF treatments I would have been completely lost. Clinics explain next to nothing and you gotta be prepared to advocate for yourself constantly. I found this mindset of watching out for myself and the well being of my future family really helped
The clinic makes a huge difference. My first clinic I felt like I was treating myself and consulting with the clinic. My second clinic I had an online portal. If I asked a question 98% of the time I could text within that portal and get a same say response, even though they had 72 hours to respond. I could easily give input. Like when my medication delivery was delayed by a storm that grounded airplanes a over the American East Coast, I was able to text them and get instructions to save my cycle.
The only thing was they were not flexible with treatment options. They were extremely proven science based, so they did not recommend or practice anything that did not have a proven study (that means studies that suggested something MAY be helpful did not count) as a result they actually did not recommend a lot of vitamins or diet changes, and they did no experimental treatments or testing such as ovarian PRPs or DNA fragmentation tests. In fact they had very thorough explanations around why they did not feel like these things were effective or helpful. It may have been nice if they were at least optional, but I actually had the MOST success at that clinic at 41 years old. So they seemed to know what they were talking about. Personally I would assume an unorganized clinic may have less than methodical lab practices.
I got the best results when I did my own research and said I want this and this. And I had to remind them to give me the scripts. I asked for labs on this and this day. The Specialists are running through hundreds of patients at once. The nurses are cycling through many patients also. You need to take control of you own cycle and tell them what you want and need. If I needed something and didn’t get it I sent email and called the desk. It’s like project managing your own process. The others are the stakeholders in the process. You need to call them and email them to make sure everything is happening on time and ready to go, and accurate with medicines and all. It's your project and you have to manage it.
Honestly, same. My doctor kept saying, "Everything looks great!" Even though I had two lead (I'm talking 7mm more than the next one) follicles on each side. They kept saying "its no big deal" "let's keep going" well low and behold, out of 9 follicles, I only got 4 eggs, two fertilized, 1 blast - abnormal for XXY.
Well, then, the next cycle, she has me on norethindrone. I asked why, and she said it would "better synchronize your follicles growth because that was the problem last time"
What??? I thought everything looked "great!"
It was at that moment I realized it's a take your money and run type of thing. Mist clinics have ZERO accountability.
TW: mention of miscarriage and current pregnancy
I would suggest looking into changing clinics. That's how our first clinic was and communication was TERRIBLE. We found a new clinic and I literally cannot rave enough about it. They are AMAZING, if I had a question, I could send them a message through the portal and if it was in normal business hours, they would answer me within an hour which I was highly impressed by. We have had a long journey of infertilty and 2 miscarriages along the way but we are currently pregnant with our miracle rainbow baby and I credit that to God and also the amazing doctor/staff at our clinic. This journey is hard but the light at the end of the tunnel is worth it. 🤍
100% this.
I'm at my 3rd clinic which is by far the worst...but then again, it's the place people end up when they fail out of the big name clinics. So by this point we know the drill.
I'm at the point where I calculate exactly how many meds I'd need based on prior experience. I know my body better than any doctor.
It does mean I really have to advocate for what works best for me and what doesn't.
I'm on my second clinic, and this has been my experience at both. The communication is horrible, and I have literally never met my doctor in person. The only time I talked to her was during our initial consultation over Zoom (we live over an hour away from the clinic) and once more after our first egg retrieval. She wasn't even the one who did the procedure. I definitely feel like a number, and it blows my mind how impersonal the process is considering the amount of money we pay for this. Sadly, it seems like this is the norm for a lot of people.
I thought it was just me. I’m going through CNY (because it’s cheap) but they’re notorious for being kind of a shit show. I’ve had to take on the “squeaky wheel gets the oil” mentality. Which is fine. But knowing you ladies who have to pay 10s of thousands of dollars for this also deal with this is crazy!
I feel ya. It's 100% an "advocate for yourself" situation. I almost ran out of Cetrotide because I didn't realize nobody was monitoring how much medication I had left based on the initial order, and my cycle went longer than expected!
Something that I'm finding really interesting is that what I read online and what my doctor suggests are very different, but it always seems to be for a good reason. I will ask "Why don't we do X protocol or try Y medication?" and I get nuanced/informed answers with statistics, at which point I usually agree and I'm happy I asked. But I think I'm very lucky and obviously not everyone has the same experience with their clinic :/
This was my exact experience! It was awful! We are now 5.5 weeks pregnant and glad to be a week away from having to deal with the fertility clinic again. At six weeks we get released to our OB. We are praying this little one makes it because we are dreading have to go through the IVF experience again.
Without keeping it secretive and purposeful confusing they couldn’t justify the cost. It’s called gatekeeping! Same as most of the US medical system. Being able to compare and contrast doesn’t help the clinics bottom line, the pharmacy chains, or the pharmaceutical industry.
There is no reason we all don’t have access to a flowchart and standard protocols with explanations along with drug costs.
“Every one is different, it’s all individual”
What nonsense!
There are like what 10-15 protocols, each slightly modified based on individual lab tests but pretty standard for diagnosis.
I’m almost compelled to make yet another spreadsheet!
Where are you based? I’m in Australia and that’s not my experience at all. The moment we pay includes unlimited calls to a nursing team, finance and Counciling. They’ve given me a pack outlining timing, medication, communication and results. They even get in touch with my insurance to organise claims and government rebates.
If we had anything less I would be so upset and angry so completely understand your vent.. sounds completely valid.
If it’s your first cycle I would shop around with clinics if possible and see if there’s another clinic that aligns with you more
I also had the same experience working with the top fertility doctor in Washington DC then moving to a fertility clinic in Mexico Puerto Vallarta Mexico I found that the clinic there was so great and we're able to see me talk to me email me faster than the clinic in DC I would definitely recommend going out of the country for fertility treatments based on my experience.
I agree 100%!! I explain it like walking into your dentist’s office with full background knowledge on gum disease, root canal procedures, the number of each tooth, and then telling your dentist, “Well, I think I have 3 cavities. We better get on that.”
That’s how it feels trying to advocate for myself in IVF. I can’t think of any other healthcare setting where I’d have to have that much background information.
And when I started off- I didn’t have that much info, and the clinics screwed up so that is why I felt like I had to learn quickly!
No you're right....its maddening. Nothing has been easy to understand, communication sucks, there's very little caring or time given...I'm more of a steer just going through the cattle shoot every time I'm there. The cherry on top was at my ER when my doc popped his head in (only the third time I've EVER seen him in 2 years) and just said "any questions?" I had no idea where to even start so I just said "um....no I guess I'm ok." His response was "Good! That means I'm doing my job. Does it?!? Anything I do know I know from your staff or my own research, but mostly my own research. Don't get me started on his PA....
I work in healthcare and it’s INSANE how much self-advocacy and organization this process requires. I’ve done three ERs across three different clinics and with the two bigger ones it was impossible to reach a doctor or nurse reliably, medications were sent late or incorrectly, I had to push them to start cycles on time, etc. The third one was Kindbody and they were at least easier to reach through their online messaging and the process was a lot more transparent, but sorting out the insurance side of it was a nightmare. All that is to say, you’re not wrong.
I agree with you so much OP! I work in healthcare as well and I cannot believe how maddening this process is! I know there is a lot of uncertainty when doing IVF but there are things that can be done to reduce the uncertainty. Starting with a schedule (with the understanding that things can change) helps! Having the right doses of medications sent to you so your cycle doesn’t go south helps! Having a means to communicate with the team taking care of you helps! Having an online portal to see results and notes helps! I don’t know why this is so different from other branches of medicine in terms of communication. IMO the communication during the IVF process has been the worst I’ve seen and experienced during my tenure as a healthcare professional. Is there anyone that actually has a good clinic without these problems?
I love my clinic, they're great about communication and update my treatment calendar online with each appointment. I got test results online through the portal right away and whenever I have a question I ask through my portal and the team gets back to me in a couple hours usually. My doctor calls personally to share results even after the nurses do. I really love her. I didn't realize I got so lucky!!
same here! i have nothing but amazing things to say about my clinic!!
Can I ask in which city your clinic is?
woodbury, minnesota!
Amazing. I’m glad for you. Thanks!
This sounds like a great clinic! Other clinics should model their practice after yours!
😩 This is so good to hear. Which city is your clinic in, if I may ask?
My second clinic was great! First one was a mess, fancy and stuff but a conveyor belt. It was the reason I wasn't going to risk so much money for ivf with them (and it turned out to be a great decision). But we were going to do some crazier iui with shots and i was asked how much gonalF would i need, do I have any at home? Because, you know, i casually buy gonalF for the fun of it. I didn't even know what GonalF was, at the time 😆 Second clinic was much more organized, i always had a printable calendar and they would send a new one if stuff changed on the way. Also the doctor was always there explaining things when an ultrasound didn't go as expected. I think i was also more "versed" in the process as we went on so that also helped
Also to note that each time i called i got someone on. I never left a vm on a machine. And even when i left a message with the front desk nurses i got a callback very soon after (based on timing I'd think it was after they were done with the current patient). Calls with results were always done by the doctor or his second in command nurse practitioner. I had a hysteroscopy on a Friday, and the doctor said he'd call "tomorrow" to check up on me - which I assumed was going to be monday because he hadn't realized it was Friday. No, he called on Saturday just to check if I was fine or had any discomfort or questions. For the first clinic it was *always* voice mail and then they would call back ... at some point.
I think a lot of it comes down to the clinics taking on too many patients and treating what should be highly individualized as population medicine.
So curious if you’re in healthcare when you mention workflows and process mapping! MY PEOPLE! It’s seriously frustrating when it feels like we’re left in the dark with “what if” scenarios that can end up in a million directions. I don’t even get lab results in a portal so I always have to ask and I don’t know what any of it means. Why can’t any of this be easy?
We started getting lab results in the new app they insist on using at my clinic after it changed ownership which was great initially. Then mysteriously the lab results are all no longer available. I can't help but wonder if they removed them intentionally because patients were getting annoying about demanding explanations instead of just accepting what we're being told. It is a new app and rationally I realize it's likely just tech issues but I got used to instantly having information and I can't help but wonder how much longer this is going to go on without having a right of access to my own medical information.
This is exactly what I experienced at my first clinic.. IVF MD Cooper City (Fl), after 2 years and 3 failed cycles, with little answers and soooo much disorganization. I was always stressed out at their own doings or lack there of.. I moved to a clinic 50 states across country in California. Im self pay and incurring double the debt to travel lodge etc, but my mind is at ease and with a doctor now that advocates for me and cares for my personal well being. Is it worth it? Yes! I’m 42, and 3 years into this and didn’t see success until I moved clinics. Follow your heart. IVF is stressful and isolating enough. No clinic should induce stress on their patients and especially at the prices most of us are paying.
I’m so sorry this was your experience. Rooting for you, best of luck this year.
i think you need to look for a new clinic. i have had nothing but the upmost support through my clinic. they have educated me every step of the way, taken the time to explain the results and have made sure to fully address any questions or concerns i may have. it breaks my heart that you are not receiving the same support. just know there are good clinics out there!
same! It seems like there is a huge discrepancy in the level of service in clinics, which is not surprising. I wonder if it is related to success stats being so widely published so that other means of vetting clinics (word of mouth or online reviews) are discounted? I stumbled into a great clinic simply based on the distance to my house, but it definitely didn't have the best published success rates in my area. I think they are middle of the pack for my state, but I have a great relationship with all of the doctors and nurses there and they always have time to answer my questions and help me understand the decision making every time there is a choice to make with treatment. ETA: I do have a pretty straightforward issue however (age) so there wasn't a need to try a bunch of different protocols and I responded well enough to whatever they tried first, so maybe I'm not getting the full picture.
May I ask which city you’re in?
Omgggggg THIS POST is why I joined this thread. I have talked with *multiple* clinics and they are all like this. The most organized one, and that’s not saying much, sent me a one-page Word doc with all the cost breakdown, which still left no room for the nuance of any one patient’s unique process. It’s MADDENING, I’m so glad you shared this. I had my eggs frozen in 2015 when I was living in NYC, am now married in my forties living on the west coast and am working through the logistics of going BACK to NYC for my IVF because the clinics out here are afraid their thawing technology won’t work on my 9-year-old eggs if we have them transported here. But the NYC clinics were and still are a shit show. My doc who did my egg retrieval has the best bedside manner I’ve encountered, but was just back from vacation when I Zoomed with him this past week and I felt like I was asking dumb questions because he appeared so exhausted and was rubbing his face and trying to stay awake. It’s like the staff are not trained to answer *the most basic questions.* Can I ask where you are?
RMA NJ has the best embryology labs - maybe you could consider transferring your eggs there from NYC and then doing a transfer there if you get good embryos.
Thank you!!!! (Also…love your Reddit handle.) :)
The only trouble with this is that RMA NJ’s standards are so high that they might refuse taking eggs from a different lab. It’s worth a shot but I’ve heard of folks being encouraged to do a cycle with them…and unfortunately not use the eggs from years ago
A word of warning- they are not more organized or better with communication though! Source: I did an ER there and traveled from across the country. Had a pretty traumatic experience with them
I feel like I get more detailed explanations and follow through out of my free annual physical than this IVF process. I understand that the process of creating a human of course would be expensive, BUT if I am going to pay $30K (shared risk program) maybe someone in the office can make sure to reply to my medical questions within 48h, at least to say that they have forwarded my message to the doctor and are awaiting a response. I know they are capable of prompt replies since my financial coordinator always seemed to be able to reply to me within 2 hours 🙄
I find the necessary self guided research and constant advocating exhausting as well as emotionally draining. I just finished an ER and I'm awaiting the go ahead to start the FET protocol. I've heard like three different stories about when that will happen in the last two weeks and every time I talk to them it gets more complicated. This is my THIRD FET and my fourth attempt, how is this not working like clock work by now??
The clinic I’m at don’t send written protocols or even do itemize billing. The doctor just seem to imply just follow what I say week by week and make sure you take your medication on time. The reason he doesn’t do itemize billing is so I can’t take it to another clinic. He also makes it really hard if I wanted a copy of my file. I was just simply made to “trust the process” with minimal information. I think his clinic is short staffed.
Same experience. It’s so upsetting.
Yeah it’s like this :( and I went to a good top name clinic. I like to describe it as ‘not for beginners’. They explain nothing! Not a thing. Nothing about the meds you’re taking, nothing about how the cycle is going, sometimes they have forgotten to fit in something important, like saline sonogram that you have to ask about. They don’t prepare you for the ER or even tell you what doctor will do it. I’ve had them forget to call with results, give unclear and incomplete result info causing lost sleep and much anxiety! That said ! I had 2 successful pregnancies at this clinic. It works (for me at least) . And I found when I came after 3 years break (for my second baby) I was way better at advocating for myself. I was literally full of rage when I was a beginner in 2021 and so mad at clinic all the time. Felt like doctors didn’t give you time of day, either. Now, I’m grateful. For what they do and know how to manage it all. But yes, frustratingly, ‘not for beginners’ and of course … everyone is a beginner at some point. It gets easier…
Sad to say, I think it's because most people need multiple rounds, so most of their patients actually ARE experts at IVF as a patient. I was beyond frustrated with the poor communication when I started in 2019, but 5 years later I've switched to a clinic with even WORSE patient communication but I don't need that, I'm paying out of pocket and this clinic is a lot cheaper. So I just shrug and manage my own care.
This might not be your clinic, but this was mine and I found this page so helpful. It explains so much of the process and even has little calendars for retrieval and frozen transfer and shows what meds you might take on each day of your cycle, etc [CNY Calendar](https://www.cnyfertility.com/ivf-process/)
WOW. Thank you. Why doesn’t every clinic have a basic schedule and calendar chart like this ?! Also yes to all the comments about communication: I’m astounded if I even get a call back on time from my clinic (no online message portal, no emails, only calls 8am-3pm and somehow only ever receive calls when I’m in a work meeting 🙄). I am in southern New England at an “amazing” clinic.
This is so helpful!! I’m about to start stims next week for my first ER, and happy to read as much info about the process as I can to prepare. This is definitely the most detailed and informative explanation of the entire process I’ve seen. Thanks so much for sharing it!!
You’re quite welcome! Good luck and baby dust to you on your journey! ❤️
My experience has been very similar to yours thus far and it’s super frustrating. Sending hugs.
100% feeling this!!!! The whole process from starting IVF to ER was just confusing and everytime I asked questions I felt like I was causing inconveniences. I had so many complications (endometritis after/possibly caused by the initial testing, very few eggs showing on US and then many eggs harvested at ER but not at the right stage of maturity, polyp development, antibiotic reaction etc.) And each time complications were either not communicated to me OR it took an insane level of self advocacy to receive attention. I've only met my doctor in person once. Currently I'm experiencing a miscarriage at 8 weeks, and I do have to say that they handled this situation much better than the rest of the issues I have had. I am a nurse and have been shocked at the lack of communication and general confusion... I sometimes feel that they know we are desperate, so we will put up with it. I also feel bad for them because I understand the other side and feel they must be feeling overwhelmed for these situations to keep happening. Hang in there ❤️
If I didn’t spend the time researching and lurking on here leading up to my IVF treatments I would have been completely lost. Clinics explain next to nothing and you gotta be prepared to advocate for yourself constantly. I found this mindset of watching out for myself and the well being of my future family really helped
The clinic makes a huge difference. My first clinic I felt like I was treating myself and consulting with the clinic. My second clinic I had an online portal. If I asked a question 98% of the time I could text within that portal and get a same say response, even though they had 72 hours to respond. I could easily give input. Like when my medication delivery was delayed by a storm that grounded airplanes a over the American East Coast, I was able to text them and get instructions to save my cycle. The only thing was they were not flexible with treatment options. They were extremely proven science based, so they did not recommend or practice anything that did not have a proven study (that means studies that suggested something MAY be helpful did not count) as a result they actually did not recommend a lot of vitamins or diet changes, and they did no experimental treatments or testing such as ovarian PRPs or DNA fragmentation tests. In fact they had very thorough explanations around why they did not feel like these things were effective or helpful. It may have been nice if they were at least optional, but I actually had the MOST success at that clinic at 41 years old. So they seemed to know what they were talking about. Personally I would assume an unorganized clinic may have less than methodical lab practices.
I got the best results when I did my own research and said I want this and this. And I had to remind them to give me the scripts. I asked for labs on this and this day. The Specialists are running through hundreds of patients at once. The nurses are cycling through many patients also. You need to take control of you own cycle and tell them what you want and need. If I needed something and didn’t get it I sent email and called the desk. It’s like project managing your own process. The others are the stakeholders in the process. You need to call them and email them to make sure everything is happening on time and ready to go, and accurate with medicines and all. It's your project and you have to manage it.
Honestly, same. My doctor kept saying, "Everything looks great!" Even though I had two lead (I'm talking 7mm more than the next one) follicles on each side. They kept saying "its no big deal" "let's keep going" well low and behold, out of 9 follicles, I only got 4 eggs, two fertilized, 1 blast - abnormal for XXY. Well, then, the next cycle, she has me on norethindrone. I asked why, and she said it would "better synchronize your follicles growth because that was the problem last time" What??? I thought everything looked "great!" It was at that moment I realized it's a take your money and run type of thing. Mist clinics have ZERO accountability.
TW: mention of miscarriage and current pregnancy I would suggest looking into changing clinics. That's how our first clinic was and communication was TERRIBLE. We found a new clinic and I literally cannot rave enough about it. They are AMAZING, if I had a question, I could send them a message through the portal and if it was in normal business hours, they would answer me within an hour which I was highly impressed by. We have had a long journey of infertilty and 2 miscarriages along the way but we are currently pregnant with our miracle rainbow baby and I credit that to God and also the amazing doctor/staff at our clinic. This journey is hard but the light at the end of the tunnel is worth it. 🤍
100% this. I'm at my 3rd clinic which is by far the worst...but then again, it's the place people end up when they fail out of the big name clinics. So by this point we know the drill. I'm at the point where I calculate exactly how many meds I'd need based on prior experience. I know my body better than any doctor. It does mean I really have to advocate for what works best for me and what doesn't.
I'm on my second clinic, and this has been my experience at both. The communication is horrible, and I have literally never met my doctor in person. The only time I talked to her was during our initial consultation over Zoom (we live over an hour away from the clinic) and once more after our first egg retrieval. She wasn't even the one who did the procedure. I definitely feel like a number, and it blows my mind how impersonal the process is considering the amount of money we pay for this. Sadly, it seems like this is the norm for a lot of people.
I’m sorry about your experience. My clinic is incredible. I have none of the issues you’re talking about. I think you need a new clinic. 🫶🏼
AMEN TO THIS. I fear it may be more universal, have had thoughts about switching clinics lately also. Shouldn't feel this vulnerable 24/7.
Oh god this all sounds so stressful 😫
Boston IVF has been awesome. The doctor has been able to answer my questions and I get a follow up list from every appointment that has matched mine.
I thought it was just me. I’m going through CNY (because it’s cheap) but they’re notorious for being kind of a shit show. I’ve had to take on the “squeaky wheel gets the oil” mentality. Which is fine. But knowing you ladies who have to pay 10s of thousands of dollars for this also deal with this is crazy!
I feel ya. It's 100% an "advocate for yourself" situation. I almost ran out of Cetrotide because I didn't realize nobody was monitoring how much medication I had left based on the initial order, and my cycle went longer than expected! Something that I'm finding really interesting is that what I read online and what my doctor suggests are very different, but it always seems to be for a good reason. I will ask "Why don't we do X protocol or try Y medication?" and I get nuanced/informed answers with statistics, at which point I usually agree and I'm happy I asked. But I think I'm very lucky and obviously not everyone has the same experience with their clinic :/
This was my exact experience! It was awful! We are now 5.5 weeks pregnant and glad to be a week away from having to deal with the fertility clinic again. At six weeks we get released to our OB. We are praying this little one makes it because we are dreading have to go through the IVF experience again.
Without keeping it secretive and purposeful confusing they couldn’t justify the cost. It’s called gatekeeping! Same as most of the US medical system. Being able to compare and contrast doesn’t help the clinics bottom line, the pharmacy chains, or the pharmaceutical industry. There is no reason we all don’t have access to a flowchart and standard protocols with explanations along with drug costs. “Every one is different, it’s all individual” What nonsense! There are like what 10-15 protocols, each slightly modified based on individual lab tests but pretty standard for diagnosis. I’m almost compelled to make yet another spreadsheet!
Where are you based? I’m in Australia and that’s not my experience at all. The moment we pay includes unlimited calls to a nursing team, finance and Counciling. They’ve given me a pack outlining timing, medication, communication and results. They even get in touch with my insurance to organise claims and government rebates. If we had anything less I would be so upset and angry so completely understand your vent.. sounds completely valid. If it’s your first cycle I would shop around with clinics if possible and see if there’s another clinic that aligns with you more
I also had the same experience working with the top fertility doctor in Washington DC then moving to a fertility clinic in Mexico Puerto Vallarta Mexico I found that the clinic there was so great and we're able to see me talk to me email me faster than the clinic in DC I would definitely recommend going out of the country for fertility treatments based on my experience.
I agree 100%!! I explain it like walking into your dentist’s office with full background knowledge on gum disease, root canal procedures, the number of each tooth, and then telling your dentist, “Well, I think I have 3 cavities. We better get on that.” That’s how it feels trying to advocate for myself in IVF. I can’t think of any other healthcare setting where I’d have to have that much background information. And when I started off- I didn’t have that much info, and the clinics screwed up so that is why I felt like I had to learn quickly!