Tag Archive | PCOS

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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Consumed

Okay, ladies, hold onto your hats because this is going to be a(nother) long one…

Lately, I’ve been worrying. Like, a lot. This is nothing new for me really. I’m a worrier by nature. But up until now, I’ve been feeling pretty calm and steady. Just put it in God’s hands, has been my frequent mantra (though I have certainly struggled with this particular motto — see my last post for details). I’ve felt fairly at peace, knowing that I just have to get through my current cycle in order to have a pretty damn good chance at my next cycle (as the 2nd cycle of 100mg of Clomid has never failed me yet).

But that all went up in smoke some time last Friday.

Because while I believe that the Clomid may do its job next month and I may even conceive, I have zero confidence that the pregnancy will actually stick around. My big fear is late ovulation. With my daughter (the pregnancy that did stick!), I ovulated on CD19. With my most recent pregnancy (the one that failed), I ovulated on CD22. I have no idea if late ovulation caused my miscarriage (my OB says probably not), but I just can’t shake the fear that it did. And if it did…what if I ovulate late again? And what if I lose again? I know there are so many women who have recurrent miscarriages and my heart goes out to every one of them, but I don’t know if I will ever be strong enough to handle that. I really don’t.

So I have considered contacting my OB (I don’t see an RE) to request that he increase my Clomid to 150mg, but I know that high dosage is unusual and can cause adverse side effects (which I have been mostly spared so far). Yet my hope would be that the increased dosage would help my little ol’ ovaries to respond faster and move up the ovulation day. I keep telling myself that, if my next cycle (#2) doesn’t work at 100mg, then I will definitely contact my doc…but what if I conceive before that and what if it’s late in my cycle and what if I lose again? WHAT IF???

The other thing that I have been worrying about is PCOS. I have been tested for it, but never diagnosed with it, and yet sometimes I am convinced that I have it. Here are the things I know (get ready to know more about the private areas of my body than anyone IRL does!):

  • I have irregular (nearly absent) cycles.
  • I have very mild acne…just a few zits on my chin and forehead (although it used to be much worse).
  • I have a little extra body hair (embarrassed to admit to this…but I have quite a few dark hairs around my nips as well as just below my belly button).
  • I have two skin tags on my neck.
  • I am not overweight, but do sometimes have trouble losing weight. (It’s not impossible for me, but does require some hard work.)
  • The last time I had an ultrasound, I had just a single, very small ovarian cyst…but that u/s was during my miscarriage and I’m not sure if being essentially pregnant would change the results.
  • All of my lab tests (LH, FSH, prolactin, fasting glucose, fasting insulin, and testosterone) have come back normal…BUT the last time I tested them, it was not on CD3 as is typical, but during my m/c when my beta levels were still positive for pregnancy, so again…not sure if that would throw everything off.
  • I have taken a lot of OPKs in the last couple years and there has only been two months in which I got a false-positive, so I know my LH isn’t tooooooo out-of-whack. (However, that 2nd OPK line has been getting darker in the last few days and yesterday was very close to being positive. Do I think I actually ovulated? No. I’m taking progesterone. It’s unlikely. So now I’m feeling extra-concerned and anxious!)

To sum up: I have a few of the superficial symptoms of PCOS but not any of the most obvious ones (except those irregular cycles, of course!). And to be frank, I really don’t want to a PCOS diagnosis. It scares me…especially with the increased risk of m/c (though my OB also denies there is a clear link).  In case you can’t tell, I’m very afraid of a repeat miscarriage. But if I do have PCOS, I want to know so I can take action. I want Metformin! Or dexamethasone! Anything that will help the Clomid I’m taking to act faster and cause me to ovulate around CD14 like a normal woman.

And maybe I’m worrying unnecessarily. It has been known to happen. Maybe losing our last baby was a fluke and it won’t happen again. After all, we know I’m at least capable of carrying a pregnancy to term (see Introducing…Cupcake! for proof), but the worries have taken over my brain and I’m consumed. I feel myself starting to spiral a little out of control.

So what do I do? At this point, I’m still thinking I’ll wait it out. See what happens on my next cycle and go from there. If there is no BFP, then I will definitely call to harass my OB (as I’m not yet prepared to see an RE). I will be requesting to increase my Clomid dosage, retake all my lab tests, and perhaps start Metformin.

But should I be doing something now? What would each of you do? Any advice? I know PCOS is rampant in this community. Is it possible to have PCOS with a normal u/s and bloodwork? Should I have my hormone levels re-checked? (I really don’t want to yet as taking an active toddler to a lab where you end up waiting forever is not my idea of fun, but I’ll do it…if I have to.) And while I’m asking a bunch of random questions…can someone please tell me why all of this has to be so hard? There are so many decisions to make and I’m scared to make the wrong one. It’s paralyzing me with fear! Please help.