Once Upon an RE…

As many of you know, I went to to visit an RE for my very first time on Friday. It was a frantic morning because they had to move my appointment to the 8 a.m. slot at the last minute, which meant waking my daughter an hour before she usually gets up and making an hour-and-a-half commute to get there in rush hour traffic. We had to park a block away and ran to the office (and I did not wear running shoes!). We arrived three minutes late, which I really hated and it left me feeling out of breath…which would probably explain why my blood pressure was 150/88 when the pregnant (of course!) medical assistant took it (it’s usually around 110/70). Ugh.

But the appointment went well, for the most part. My doctor, whom I will call Dr. Young because she is (late 30s? early 40s?), is straight-forward, easy to talk to, and open to questions. Since I’ve only spent an hour with her so far, it’s hard to have a real opinion, but I think I will like her and feel comfortable with her and I certainly do have confidence in her expertise. And surprisingly, she is in agreeance with much of what my OB/GYN, Dr. Smiles, already told me, which was unexpected but reassuring. We talked about a lot in the time that we spent with her, so please forgive me if this isn’t organized well. I think I’ll do it with bullet points (to at least give the illusion of organized thought):

  • PCOS: Yes, she thinks I have it. She says I am not a “classic” PCOS patient in appearance or labs, but she diagnoses PCOS through the process of elimination (every doctor has different criteria, I have found…I’ve seen four different doctors and they’ve all told me something different!). When someone has irregular periods, she rules out thyroid disorders (check!), prolactinemia (check!), and perimenopause (check!). If someone has no signs of those but doesn’t ovulate regularly, then she diagnoses PCOS. And it’s possible that the only sign of PCOS could be irregular cycles. So yeah…I guess that means I join the PCOS Club. Officially. My biggest fear in being diagnosed with PCOS was the high risk of miscarriage, but she assured me (just as my OB did) that there is no connection between the two. The studies that linked them were old and did not take into account diabetes and severe insulin resistance (which can cause miscarriage). If you exclude diabetics from the studies, the miscarriage risk would have been proven to essentially be the same as anyone else. So that was a relief to hear. I know there will be differing opinions on this, as Dr. Young reminded me there always will be, but I’m choosing to believe what she’s telling me. I need to believe for my own peace of mind.
  • Metformin: This is not a drug she prescribes, unless someone is clearly insulin resistant. Recent studies have shown that there is no proven benefit in helping with ovulation and she is hesitant to prescribe any drug that isn’t proven to be useful and has no long-term studies about it’s safety. I asked her if I should stop taking it and she says she thinks I should because, while I am lucky to suffer no GI side effects, there is the potential for liver and kidney problems…they’re rare but possible. And after thinking it over, I think she’s right. I have been taking this drug for three months and haven’t seen one bit of change in my cycles. I’m not insulin resistant, so why take a drug that I probably don’t need? Even the pharmacist told me that I was taking a very high dosage when I picked up my prescription last month. So I think it’s time to quit. I’ll wean myself off of it over the next few weeks and be done. I’m a little nervous about that because I know some do believe that Metformin can lower m/c risk, but Dr. Y doesn’t and I have to keep reminding myself that I didn’t need it while pregnant with Cupcake, so I probably don’t need it now either. Right?
  • Blood work: I successfully completed all the preliminary bloodwork through my OB and my RE doesn’t think any of it needs to be repeated at this time. Yay! This also means there won’t be any delay in starting treatment. Go me for totally being on top of this!
  • Chances of success: She reminded me that, with every cycle, there is only a 25% chance of success. I was very lucky to conceive on my first Clomid ovulation with both Cupcake and Teddy Graham, but I can’t expect it to happen every time, so this process is going to require some patience on my part. While I may be growing tired of Clomid because it’s not “working” (i.e. no BFP), it is doing it’s job and producing an ovulation. Now, it’s just a game of wait and hope.
  • Semen analysis: My husband asked about having one done. Honey had one come back as normal two years ago, but Dr. Y doesn’t think it’s a bad idea to have a recheck and we agree, so we’ll go ahead with that. Last time, my hubs got to do his business at home and take it in afterwards, but this time he’ll be doing it at the lab, which I can tell he is uber-excited about. He’s so fantastic, though, and hasn’t complained for even one second. It will cost us $110, which seems like nothing compared to everything else.
  • Short luteal phase: Dr. Y does not think this is a problem for me. She considers a luteal phase too short if it is less than 9 days. My shortest one has been 10 or 11 days and she doesn’t feel this needs any treatment. I asked why sometimes my LP is so much shorter than it is in other cycles and she said it’s just based on different hormone levels produced for that particular ovulation. Hmmm…
  • Baseline scan: I had a meet ‘n’ greet with the dildo cam at the end of our visit. It was the first time I had ever had that done during my period and can I just say…ew, gross? It was really, really gross and I’m sure much more so for my doc, but she’s used to that, right?  Anyhoo…she did conclude that my ovaries look polycystic (with 10-12 visible follicles on one side and 12-15 on the other, when the most she should see is 10 and that’s in someone much younger than myself). Also — there are no ovarian cysts or visible uterine fibroids. Good news! She also determined that my lining got plenty thick in my last cycle because, when she measured it, it was 11mm…and that was on CD2, after a full day of bleeding. So Clomid isn’t causing problems with that at this point. More good news!
  • Progesterone levels: In September, my P4 was 11.0 at 8dpo. I was less than excited about that number, but the doc doesn’t think I have a reason to worry. She says she only orders a P4 test to see if someone has indeed ovulated (anything over a 3.0) or if she is concerned about a very, very short luteal phase. She never bothers with the actual number and doesn’t monitor it in her patients because she doesn’t think it provides enough information to be worth it. Which means she doesn’t think I need progesterone supplementation of any kind at this point. She did say, though, that a trigger shot will probably help my body to produce more progesterone.  Which leads me to…
  • Treatment: I asked about switching to Femara, but for now, Dr. Y wants to stick with Clomid. She says that “they” say you shouldn’t take it more than twelve times in your lifetime, and this current cycle will be number 12 for me, but she is willing to let me go two more after this one. She really wants to do a monitored cycle and a trigger shot for this round, to see how my body responds. So I’m scheduled for a scan on day 12 (Nov 12) and we’ll go from there.  Hopefully, I’ll be ready to trigger and then we wait. If not, I’ll have to return for another scan and keep doing so until I am ready for the shot. And if this cycle doesn’t end happily, we will do two more rounds of Clomid, of which I will have to decide if I want to do monitoring or not (not recommended, but allowed).  After that, I’m a bit confused about where we go from there. There was talk of Femara, IUI, and IVF, which raised my level of anxiety and panic to unknown heights. I do know there won’t be any injectables (maybe if I beg?) because, when combined with PCOS, the risk of multiples is just too high. I have a follow-up scheduled with Dr. Y for Dec. 4, where we will create a long-term treatment plan. Which scares me to death.

So I feel pretty good about most of this, but there are a few concerns I have:

  • I felt a bit rushed at the end of the appointment and had to speed through my final questions, which was a bit irritating. I know Dr. Y had a procedure to get to (which is why my appointment had to be moved up), but I’m a new patient and have a lot to talk about…don’t I deserve her time and focus while she is with me?
  • I’m not thrilled that I won’t be getting progesterone suppositories. Dr. Y doesn’t think I need them, which is great, but what if she’s wrong? I want a safety net. One thing that will let me breathe a little easier and say, “At least I don’t have to worry about that.” So I may push her on this a bit more down the road.
  • Monitoring and especially the cost of it. One u/s scan on day 12 and a trigger shot? I think we can afford that (definitely can if my insurance picks up any of the cost). But I am fairly confident in saying that I don’t believe I’ll be ready to trigger on day 12. I normally ovulate days 19-23…a whole week (or more) earlier than this seems too optimistic to me. Which means I’ll probably have to return for another scan. And what if I’m still not ready and have to go back for another? The costs will just keep climbing and, while we can do this for one month, I’m not sure it’s something we can do over the span of several. Not to mention the exorbitant time that will be required, especially with the holidays nearly here and with a toddler in tow. It takes at least an hour to get to my RE…and an hour to get home. That’s a lot of time, especially if I have to do it more than once a week.
  • Too much too soon. In other words, taking an approach that becomes too aggressive too quickly. I am willing to stick with Clomid or Femara for a good few months and maybe do monitoring and a trigger for those cycles. But to go straight from Clomid to IUI in just three months? That’s when I start to feel my panic rise. Because I know that IUI is the end of the road. There will be no IVF for us. This is not something I’ve discussed before because I haven’t thought I would need to, and it’s something I will explain more if it comes to that, but I just know that, right now, we have drawn the line there and IUI is the last stop. And so in three months, if Dr. Y wants to move on to IUI, it will be my final and only hope and that is just too scary. I am not ready to arrive there yet.

So over the last couple days, since meeting with Dr. Y, I’ve been feeling overwhelmed. Overwhelmed by the money and time all of this will require. And overwhelmed by the possibility that none of it may work. That the bills will pile up and it won’t be worth it in the end because I won’t have another baby. But as my mom keeps reminding me, I need to take it one step and one cycle at a time. Why worry about IUI in three or six months when this very cycle could be The One? So I’m taking lots of deep breaths, praying, and just trying to balance hope with expectations. Faith with realism. Not worrying about what hasn’t happened yet, and still preparing for the worst case scenario. It’s a very fine line.

And so there you all go…the story of the day I met my RE. Fascinating and heart-warming, isn’t it? So sorry about the neverendingness of it. I do promise you that one day — one day very soon! — I will publish a post that doesn’t take me three hours to write…or you a whole hour to read.

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19 thoughts on “Once Upon an RE…

  1. I’m also a PCOSer by default. I always feel like it’s a rip off diagnosis. I’m so glad your appointment finally came and that it went pretty well! I’m really interested to read your IVF thoughts when/if you decide to post them. My husband and I are working through what we will do if it comes to that, as we also try to balance on “the very fine line”.

    • I’m glad I’m not the only one who feels like it’s a “rip-off diagnosis.” Feels a little like a cop-out to me, but oh well I guess. My treatment would probably be the same either way. Thank you so much for your support and good luck trying to find your own balance!

  2. Just wanted to drop by and say I’m praying for you. That visit is A LOT to take. You have every right to feel overwhelmed. TRY to take it one day at a time, but I know that’s easier said than done.

  3. I’m curious. Did she say anything about Pregnitude? I know you need to trust her and I absolutely DO NOT want to undermine that trust in any way, but I felt compelled to say that metformin really did work wonders for me, and I was not overweight or insulin resistant at all. The studies I had read back in 2002 showed that women with “normal” insulin levels actually respond better to metformin than the women who are technically insulin resistant. I never ovulated with the 50 mg dose of Clomid and with the 100 mg dose, I was ovulating later and later each month until I started metformin (and my baseline insulin level was only 11). After I started metformin, within three or four months, I no longer even needed Clomid! And this was from a woman who couldn’t even ovulate with the 50 mg dose. I don’t think (obviously) that it protected me from miscarriage. There were some studies that looked promising in this respect in the early 2000s but newer studies have shown that it does not reduce the risk of miscarriage. However, I have reviewed the newer studies myself and they still show a higher likelihood of ovulation with metformin. As far as the miscarriage risk goes, I do not have diabetes or even insulin resistance and yet I have miscarried 50% of my pregnancies with PCOS and no other explanation for my miscarriages (I do not say this to scare you — I know others with PCOS who have not had a problem with miscarriage, only the ovulation part). I thought the metformin had helped me with my miscarriage risk at first because after two consecutive miscarriages, I went on to have two consecutive births but then later, I have had two other miscarriages and two other pregnancies that made it past the first trimester while still on metformin. Pregnitude is more natural and in studies actually achieved a higher ovulation rate than metformin (though the two were not compared directly in the same study). It costs about $35 per month and you can get it off of Amazon.com without a prescription. After my fourth miscarriage, I added Pregnitude to the metformin (I personally am too scared to ever stop the metformin after what it did for me back in 2002). The usual dose is 1500 mg per day for PCOS (I use the extended release formulation and take two 750 mg tablets every evening). My liver has been fine after ten years on the drug. It doesn’t hurt the kidneys but you do have to have healthy kidneys to clear the drug. Again, I’m not trying to change your mind about anything, but I just feel so strongly that metformin made the difference for me with ovulation. I had an OB who once tried to convince me to stop it during pregnancy, but I won’t even stop it then (it is pregnancy class B which is about as good as it gets – I don’t know of any pregnancy class A drugs), and the three babies I have delivered after 9 months of metformin exposure were fine. My newer OBs have never tried to convince me to stop it during pregnancy.

    • Thank you for your input. I’m really torn on Metformin because I hate taking it…three pills every day (one 500mg ER pill with breakfast, lunch and dinner) is starting to be a drag. Also, I haven’t seen any change in my cycles at all and I’ve been taking it for three months, which makes me think that it’s not helping me. I didn’t need it to conceive my daughter or to carry her to term and I feel hesitant to keep taking a drug for no reason, especially when I have a doctor who thinks I should quit (my OB doesn’t care either way). That being said, I of course don’t want to do anything that’s going to get in my way of achieving another pregnancy. Hmmmmm…. My RE didn’t say anything about Pregnitude, though, so I’ll have to ask her about that.

  4. Welcome to the PCOS club! I’ve heard that Metformin doesn’t tend to do much until after taking it for 3 months, but no clue if that’s correct. I’m glad I’m not the only person who had IUI as their end of the line (and when we found out our insurance wasn’t going to help, it was going to be a short end of the line). Sometimes I felt like I just didn’t want it enough if I wasn’t willing to go that far, but in the end I think it’s a very personal decision. Good luck with your new RE!

  5. Agh. Damn PCOS. Sorry you had to officially join the club. I just wanted to say that a pregnant nurse at an RE clinic would have royally pissed me off. I know it is not like they can fire them or anything, but could they at least give them a desk job in the back until after they deliver? Kinda a slap in the face if you ask me.

    • Agreed! I wanted to ask for a different medical assistant, but instead I opened my mouth and said, “When are you due?” Couldn’t help myself. I always ask questions that I wish I wouldn’t. Sigh.

  6. I’m sorry you felt rushed at the end, but it sounds like you covered a lot during that first visit. I totally agree with your mom–take it one cycle at a time. Not easy to do, I know.

  7. Sounds like a very thorough and information-packed meeting! (Although pregnant nurse? Ugh.) I don’t have the relevant experience to comment on the proposed medications, or lack thereof, but I wholeheartedly agree with your advice to yourself at the end, as difficult as it sometimes is to implement: one step at at time, and no need to worry about IUIs unless the future shows that it’s necessary. And I have everything crossed for you that it’s not!

  8. I’m thrilled that you were able to take this next step. If for no other reason, you are educating yourself. I remember being overwhelmed after my first appointment too. The anxiety about the next steps and the steps after that terrified me. But your RE was educating you- letting you know what the potential options are. Having that information is empowering and very important. Plans are important. However, like you said- one step at a time. You got the whole picture, but you just need to look at a tiny piece of it right now. It’s good to question if your RE is giving you good advice too. I questioned mine A LOT along the way. She always eventually proved herself though. And now, I trust her. With my body and mind- I trust her. Your RE is just in the beginning stages of earning your trust. Jumping in blindly is not wise- so I think you are on the right track right now. And finally, be open and honest with your doctor. If something isn’t comfortable, then speak up. Tell her your views, thoughts, and reservations. It will help her direct or redirect your treatment. If she is good, you won’t get ANY pressure to do ANYTHING you aren’t ready for.

    As an aside, my RE bills ALL my ultra sounds under “irregular periods” so I don’t get charged for them. Not many do this, but it’s worth calling and asking how it will be submitted to your insurance. The call is well worth it to know what kind of money you are looking at. I only paid for my clomid and doctor visit co-pays in the beginning. Even now, I pay for the IUIs, meds, and co-pays, but never the checkup ultrasounds (a huge $ saver). Again, you have every right to know this information going in. Information is power and comfort. You are your own best advocate.

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