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finding the right doctor

the longest journey

When I first realized that keeping a pregnancy wasn’t going to be easy for me I felt defeated. I didn’t know where to go or what I needed to do. All I knew was that my current OBGYN wasn’t getting the job done. Yes, she was a good OBGYN and I really enjoyed her, but she wasn’t understanding that three miscarriages is not the norm. Her words after my third miscarriage were “I’ve seen women have 3 and go on to have a perfectly healthy baby.” When this sentence came out of her mouth I knew that it was time to seek a second opinion.

I didn’t know anyone who had been through IVF or who had explored the world of infertility and so I started out the journey with a blank canvas. It was very paralyzing to say the least, trying to figure out where to turn and where I could get legit advice. I finally was given a recommendation for an RE from….my moms-best friends-sons-wife….does that sentence even make sense? She is a nurse in my area and had a friend go through IVF with my current RE, and so that is where I started.

I ended up meeting my RE on my own accord as my OBGYN didn’t give me a referral. (Remember, she was all don’t worry, it will happen when it’s supposed to happen) At this point in time my insurance provider was Kaiser Permanente and without a referral everything was out of pocket. My first glimpse into the cost of fertility treatments.

The first consult was with the RE I ended up using and it was overwhelming to say the least. The word IVF was thrown out and I didn’t like hearing it. I didn’t think I was a candidate for IVF…..yet. I naively thought that IVF was for women who couldn’t get pregnant and I could get pregnant, but they just wouldn’t last. Dr. B ordered the RPL panel (repeat pregnancy loss), karaeoptyping, and counsyl. I waited for the results impatinentley as it had already been over a year since I got off birth control; I felt that I couldn’t wait any longer….(oh, how little did I know that I would still be waiting two years later).

After what felt like an eternity I was able to sit down with Dr.B for our follow up appointment. From the get go he started talking about IVF and how even though I fell into the unexplained category I was a candidate for IVF with CCS. That even though the karyotyping came back normal there is a possibility that a mix could occur when our little boys & girls merge together and CCS testing could help determine if that is the case. I felt defeated and part angry, because a few weeks before the appointment a nurse told me I most likely wouldn’t need IVF. She mentioned that our karyotyping came back within the normal limits and that pointed me down the path of no IVF….WRONG. I left the appointment confused, sad, and angry. I felt that I was just being thrown into the IVF pack because they couldn’t find anything else wrong with me and that was all they could think of.

So…I went on my marry way and met with two more RE’s.

The second clinic I visited was smaller than the first and had only one doctor one staff with a few nurses. I thought that a more one on one vibe could be nice when going forward with treatment. My hubby and I went and talked to RE#2 and while we sat chatting with him in his office all I could focus on was the clutter behind his desk. Papers and folders laying about with no organization what-so-ever. Now, I am not a type A person, but I do love some organization and there was none here. My mind instantly flashed forward to months in the future and I envisioned him apologizing that he transferred the wrong embryo into me and from now on he would start labeling the embryos with a better system. Insane I know, but my mind instantly jumped from folders everywhere to ahhh….get out now.

Once I was done envisioning the horrid fate of my embryos I started to pay attention to what he was saying and I wasn’t that impressed with his decision for where I should go from here. RE#2 didn’t think I should start right off the bat with IVF (score) however, he thought I should try to get pregnant on my own and we should just add progesterone to the mix. That possibly my progesterone is low and this could be the cause of reccurent miscarriages. I wasn’t that impressed  with his diagnosis as I had discussed progesterone with my OBGYN and RE#1 and they both didn’t think it would make the difference. I wasn’t convinced this route would work for me.

Onto the next RE.

The last RE I met with was at a very large and well known hospital in my area. The doctor was very easy to talk to, his office was impeccable, and his staff was very welcoming. RE#3  ran a few tests of his own and in the end determined that IVF would be my best bet as well.    There were no new revelations about my fertility issues and he thought I should follow the path of IVF with PGD.

After meeting with RE#3 my hubby and I sat down and decided where we should go. Clinic #1 and the last stop were both very reputable places and I did enjoy the RE at the last place. However, clinic #1 had done more rounds of IVF and had very high rates on SART. And, by this time a few months had already gone by and I was tired of meeting with doctors. I was ready to make a decision just so I could start moving forward.

So, we chose ORM and went with Dr. B. Looking back I do wish I would have met with other RE’s at my clinic, as I knew from the get go that I didn’t have a great repore with Dr.B, but I buried that feeling deep inside and went forward.

That won’t happen again.

 Going forward I know what exactly what I want from a doctor. It has been a long three years and in those years I have had 3 OBGYN’s, met with 4 Fertility clinics, and have worked with 3 different RE’s. So, I now know what I want and don’t want in a doctor.

Everyone is different when it comes to selecting a doctor that is best for them and all that matters is that we all find out what is best for us. When it comes to looking for a new RE I now know what is important to me and I won’t settle for anything less.

I want a doctor who can be empathetic to my situation.

When I call and ask for another ultrasound at 7 weeks it’s not because I am crazy, it is because I know that I can’t go off the ultrasound from 6 weeks. That there is high possibility that something has gone wrong, because it has so many times in the past. So please don’t give me the go-around…..just schedule the appointment and let me put my mind to rest.

I want a doctor who can use simple terms with me.

I am a smart woman, but I don’t have a medical degree and was pretty bad in science class. So, there are some things I just don’t understand. When we are discussing my uterus or my embryos or anything of that nature just give me a short and simple answer. Understand that I am confused as to why this keeps happening and help me understand what I should do.

I want a doctor that has a supportive nursing team.

After going through this for three years I have learned that I am rarely going to see or talk to the doctor, the nurses handle everything. I am ok with this as long as they are understanding and patient. Don’t treat me like I am just another crazy infertile nut job that you have to deal with, but be supportive. As long as I know from the beginning who will be my main point of contact I am fine. But, if you don’t know an answer please don’t make it up….tell me you don’t know and ask the doctor.

I want a doctor who is open to my thoughts and concerns.

I have unexplained infertility and therefore there are no real courses of treatment for me, everything is a shot in the dark. So, when I bring you new ideas or thoughts I want you to be open and responsive. I don’t want to feel that you are closed off to any suggestions and that I am just a sucker falling for new treatment ideas. A few years ago most doctors didn’t see the benefits of acupuncture while doing IVF, but now acupuncturists are welcomed into clinics. In 5 years time all doctors may believe that immunology and infertility are related and not hocus pocus…so, if I bring you these ideas please be open to them.

I want a doctor who understands my situation.

Yes, IVF can get me pregnant, but that is not why I turned to it or to you….I need something to help me stay pregnant, so please understand this. My last doctor seemed to loose sight of this and now I am off to a new clinic and doctor. I need someone who is going to fight for me to stay pregnant. Not someone who thinks they have done their job just because I received two pink lines.

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So, if you are just starting out with this journey or are already knee deep in the crap of infertility remember that you want a doctor who is going to be your advocate. You want a doctor that checks off every box on your list and a doctor that you can believe will help you get to your ultimate goal.

XO

AmateurNester

31 thoughts on “finding the right doctor”

  2. Yes! Always advocate for yourself…and go with your gut! I chose a very small clinic with only one RE, who I saw every, single, visit and who I could call on his cell phone whenever necessary. It is so important to have that support system when we are going through so much. Thinking of you and praying for wonderful news soon for us both…xoxo!

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    1. Wow, I still have Kai.ser and my OBGYN told me I was still in the realm of normal after 3 miscarriages. I had to beg her to do karyotyping on my husband and I and had to beg her to make me the referral to the RE. Obviously I switched OBGYN’s after that. I still harbor anger toward her for how un-supportive she was. Sometimes I want to tell her all they found that was wrong to let her know but mostly I just never want to see her again. I still haven’t met my new OB.

      I am just starting down my IVF with PGS road, which was recommended by my RE through Kai.ser but we decided to go with the large teaching hospital in SF as they treat more individually. Good luck to you and thank you for sharing.

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      1. I don’t understand why KP doesn’t realize that after 3 miscarriages it is important to get testing done. I am so glad that you went with your instinct and got a new OBGYN. I am sorry that you have to go through this situation as I wish you the best as you start your IVF journey. xo

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  5. I hear you. You need someone who
    Keeps you pregnant and healthy, not someone who thinks his job is over when you get pregnant

    Your post made me wonder, why do they feel progesterone is not what keeps pregnancies? My successful pregnancies all survives because of progesterone, the ones I lost had failing progesterone numbers.

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    1. At first I also thought progesterone could just be my issue, but after talking with Re#1 and RE #2 I was convinced that it was more than just that. And, at that point I didn’t want to go through trial by error and I thought IVF was my answer to not loosing any more pregnancies. How wrong I was….. But, I still don’t believe progesterone levels were my problem as with my last two losses my progesterone was monitored and was within the normal ranges. xo

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  6. You’re absolutely right to trust your instincts on this one. I chose to see a different doctor after three losses, even though like you I was told to just keep trying. I just knew that it was the right thing to do.

    Are you going to see the specialist in reproductive immunology? I know that you were looking at that as a possibility, just wondered if you were still going ahead with that? Xx

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      1. Sorry to hear about the wait, I had the same problem getting in to see my doc. Seems like a good RI specialist is always in demand! Fingers crossed for a cancellation definitely, but I really think you’re doing the right thing by seeing her, I’m so so hoping that she can give you the answers and help that you need. I’m here for any RI questions too, if I can help at all xx

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  7. Amen. And if you’re talking about ORM in Portland, they were an effing nightmare. We go to Fertility Northwest and they may be smaller, but they take such good care of me I can’t imagine anywhere else. After hearing the nightmares about some of the docs at OHSU talking down to patients, and how they eff up the billing all the time (and a curt tone by one of the REs I spoke to on the phone), we knew we were much better in the down home vibe of Dr Stoelke and team.

    For everyone, it’s important to look at the SART numbers with a grain of salt, because there are two things that are fundamentally messed up about the way they report. 1) They don’t indicate how many REs they have on staff doing the procedures. So a small clinic like the one I go to for example will have less quantity because there’s only one doc, and not a whole bunch like a large hospital. 2) They only report “number of cycles” but NOT “number of patients” which means we really have no idea how many tries each woman has done – so we don’t have a way to understand if they’ve had a lot or a little. For example, my doc’s SART number for FET for donor eggs in 2013 shows 11 cycles – and our first thought is often “oh that means 11 women had IVF” which is most likely not the case, as we all know that a lot of us have to try this multiple times, and some do give up along the way.

    I was just reading up on this last night and found two good articles that are pretty interesting about SART reporting:
    https://www.fertilityauthority.com/articles/transparency-fertility-clinic-reporting
    and
    http://www.smartfertilitychoices.com/ivf-success-rates/.

    It’s pretty interesting. The big thing I learned is to trust my gut and ask my doctor about anything and everything I read online and get his opinion. My ONLY regret is that he did not bring up the opportunity for genetic testing of the embryos before they were frozen, so when I asked him after the fact, it was too late. But otherwise, I couldn’t imagine after getting to know these three clinics, of going anywhere else. ORM vs FN on Yelp kind of said it all for me…I just wish I’d have seen ORM’s negative reviews in advance…(but hey who knew, Yelp is usually more about dining & shopping experiences!).

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  8. Oh and two other things (I’m feeling verbose today hahaha):

    1) I have a naturopath who specializes in fertility (including acupuncture, AND has a LMT at her clinic who does fertility massage prepping women for IVF, etc) and she is the one who actually suggested the AMH and FSH testing as soon as I told her we were going to start trying. No general practitioner or ob/gyn ever brought it up (although one told me when I was 30 that I should consider freezing my eggs, just what I wanted to hear in the middle of my divorce from my first husband LOL). I see both her and my RE for complementary care and so when I went in to my RE for the first time I shared all my blood test results with the doc who really appreciated it (and didn’t look down upon naturopathy) – it’s been hugely valuable to have a team supporting me and not just leaning on the RE’s office to be everything for me. RE + ND/Acu (covered by insurance which the IVF stuff is not!) + monthly massage = a beautiful way to go through what is essentially, as my ND put it, a shitstorm. 🙂

    2) If the doc with the paper piles was Dr Stoelke, that does make me giggle as I remembered noticing that at my first consult, but after working with him since summer and knowing he only has Milly and Tracy onsite and their admin is remote (who’s worked with him for 20 years)? I guess coming from a family of engineers/scientists and working with them every day (and having been an admin to one in the past) it wasn’t worrisome to me – I know the most important stuff is what they do as doctors, not how they organize their paperwork (there’s a great episode of Nurse Jackie where one of the nurses gets the head of the ER’s office organized because it’s driving *her* nuts, so funny). What I loved is Dr Stoelke actually drew a picture of the human body and drew a little flow chart and everything for me as to what he was going to do, how things did what they did, etc. Plus he didn’t try to sell me on any process. He shared what some folks have done in the past, and has made all the phone calls to me himself with results, planning next steps, etc. – nothing from the nurses beyond their basics to me about meds and billing. I love them so much I brought them homemade goodies at the first transfer 🙂

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    1. I am hoping to find a great mix of a team just like you have. I just scheduled my first appointment with a naturopath and look forward to seeing what she has to say and I absolutely love acupuncture. I took the past two months off from it as my insurance only covers so many and I want to save it for when I get closer to IVF take 2. Ha, Yes it was him. I now know girls who go there and love him, but it just wasn’t right for me. Funny that you could tell 🙂 xo

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  9. I agree with the EcoFeminist! I have severe endometriosis and have had two surgeries. I also have a hyperthyroid. I’ve spent the last three years dealing with health professionals and realized how much you have to advocate for yourself and not settle for just any kind of care but the best care for me.

    I also recently realized how big of a role alternative medicine has played in my health and fertility. Naturopath, acupuncturist/TCM Doctor, abdominal RMT, a reputable supplement store, meditation and yoga have given me more tangible results in terms of my health and happiness. I highly recommend finding a complimentary team of health practitioners!

    Good luck with your journey!

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  10. 100% agree with your post. I switched RE’s at my clinic because I didn’t like the way my first RE’s bedside manner was. I want someone to be my advocate as well and I want someone to fight to get me pregnant! If I don’t feel that way with an RE than I feel uneasy. I love my RE now and she’s the best! I think having a dr you can trust and talk to is everything, especially when it comes to IVF!

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    1. I am glad that you finally found a RE you enjoy and are comfortable with. I hope that I feel the same way with my new RE. I’ve just met with her once and have spoken on the phone twice and feel that she is already so understanding and compassionate and a very smart lady. xo

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  11. This is so true, I settled a lot during my journey because I didn’t know what I didn’t know… Now I know a lot more and I think this great advice to a new IVFer. Our gut instincts are strong, sometimes with Ivf/rpl we lead and react from the gut… And a good Dr respects that.

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  13. Thank you so much for sharing your story! I have, some what recently, started down this road myself. I have a kind of unusual situation, I’m certain people would not agree with, so I don’t share with many people at all. It still helps though, so much, reading other peoples stories! I actually started a blog myself to help sort through and get out all these emotions.. Unfortunately, in my area, I am quite limited to RE’s.. Unless I’m missing something there are only 2 clinics in my area, and they are both an hour away. I go to the smaller one, I feel they are more aggressive, and will get the job done faster! LOL However, it would help if I were rich!! LOL or even if Insurance would help with costs, but no… UUGGHH this life… Thank you again!!

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    1. Sorry that you have to experience all of this infertility crap as well. I’m glad that my blog can help and I think it’s such a great thing that you have your own as well. It helps to share what we are going through even if it’s just with strangers on the internet. 🙂 I hope that this year brings you the best. xo

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