Frustrated newbie

iVillage Member
Registered: 05-23-2007
Frustrated newbie
12
Wed, 05-23-2007 - 10:46pm

Hi. This is the first time I've ever posted to a message board, and am really comforted to be able to read about everyone's experiences. I'm 40 and trying for my first baby. Miscarried 13 months ago at 6 weeks, then again in November and February (VERY early on).

My main frustration is with my RE who doesn't seem to be interested in investigating the miscarriages given my age. The first time my husband and I went in she pushed IVF strongly, and when we didn't want to do it right off the bat, she didn't pursue much else except offer clomid. I am about to start my third round of clomid (miscarried the first time, didn't conceive the second). Had to ask for thyroid testing (found I was hypo, with high levels of thyroid antibodies). My TSH has lowered to a normal range, but now my BBT has recently shot up abnormally high for me and I'm wondering if I've swung into hyper... Only on this third round of clomid are they measuring my endometrial lining midcycle to check for thinning. I feel like I have to ask for everything, and because I ask so many questions, they treat me like I'm a pain in the butt! I've consulted with another specialist, but he was even worse--only used acronyms throughout our whole conversation and big time scare tactics. I have appointments with two other specialists, but not until June and Sept. Time is always on me...

I'm so envious when I read of women who have these great RE's who seem to be partners in their care. I rarely talk to my doctor, and instead hear from the nurse who doesn't seem to know what charting is....?! You can only imagine how they looked at me when I told them I've also been seeing an acupunturist. Sometimes I feel like my treatment is proscribed by the conservative midwestern city values where I live. I know that stress is my enemy, but I feel stressed all the time, because I feel like I'm relying on the internet for all my information rather than my doctor.

I've had FSH and Estradiol measured, both were good. 21 day Progesterone was between 13-15, which seems low to me, but dr. thinks it's fine. Follicles looked good beginning of my last cycle. Should I be asking for other tests or just accept that all three miscarriages were chromosomal problems and move on to IVF? And if so, how do I know that a pregnancy will take then? We don't have money to spend on IVF (not covered on insurance), so we can't do multiple rounds... Any thoughts? Sorry to ramble on.... I'm not in denial about my age and my chances, but I want to rule out any other problems before plunking down tens of thousands of dollars I don't have on IVF. Thanks! And best of luck to all of you!!!

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iVillage Member
Registered: 02-28-2007
Wed, 05-23-2007 - 11:44pm

Hi there,

First of all, I am very sorry about your miscarriages. Unfortunately, a lot of us here have been through the same thing and it's not something I'd wish on my worst enemy. <>

I'm sorry you're having such a difficult time with your RE... Here is what I would suggest. When they don't give you enough information...or when they explain it all in abreviated form that you don't understand, simply stop them and politely say, "I know this is all old hat to you. And I know you understand this. But I don't, and it's my No. 1 priority right now to get the best care. And that means knowing what we're doing to me and why, so I'd really appreciate it if you could explain that again in laymen's terms." Or something to that effect. A lot of times, they get in a rut and sometimes don't even realize they're being negligent to the patient by not speaking in English!

It's not that unusual to talk to the nurse more than the doctor. I had a great RE, but unless I had an appointment to see him, or an appt. to speak with him on the phone, I kept in contact with his nurses (who were wonderful). I could call them up every day if I wanted to and they would check on anything that I needed.

A lot of times, due to our age, they assume that we're miscarrying because we have bad eggs. While that may be true in some cases, it just seems extra cruel to me to treat those of us who have the most difficult time staying pregnant so cavalierly.

I would recommend that you get tested for blood clotting issues, which is a big cause of miscarriage in women of all ages. My doctor has told me that if I get pregnant again, he will most likely put me on Lovenox or Heparin (blood thinners) to help maintain the pregnancy. My OB and her nurse told me that they treat a surprising number of women that way.

IVF doesn't work for everyone, so please don't stress out about coming up with the money for it. I did 3 IVFs and 5 IUIs and none of them worked for me. Then I got pregnant "naturally". Unfortunately, I lost the baby at 17 weeks, which was pretty heartbreaking.

There are plenty of women who get pregnant in their 40's. My friend got pregnant at 43 and delivered when she was almost 44. My friend's friend just gave birth (a surprise pregnancy!) at 46. And it is good news that you are able to get pregnant. I would just suggest that you ask your doctor for blood clotting issues to rule that out. Some of the things I was tested for:

ANTITHROMBIN III ACTIVITY
APTT (ACTIVATED PARTIAL THROMBOPLATIN TIME)
FACTOR V LEIDEN COAG
HOMOCYSTINE
PAI-1 ACTIVITY
PROTHROMBIN PCR
PROTEIN C ACTIVITY
PROTEIN S ACTIVITY
MTHFR

Unless your doctor did tests on the embryos after you miscarried, he would have no way of knowing for sure if they died because of chromosomal issues. I would ask for tests so you have more information and then take it from there!

Good luck!

Lois

  

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iVillage Member
Registered: 05-23-2007
Thu, 05-24-2007 - 2:36pm

Hi Lois,

Thanks for your kind and detailed response. I was very frustrated yesterday and should have taken some breaths before writing. Your advice is good. I really think I need to find another RE, though, because I find her nurses to be condescending and not very helpful, unfortunately. A friend doing IVF with the same doctor has the same issues with the nurse. The attitude seems to be: "we know best, do not question." After my second conception this nurse called me after my second hcg blood draw to let me know how the levels looked. The way she told me (I'm not kidding) was this:

Me (on the phone): "hello."
Nurse: "Have you started bleeding yet?"
Me: "I guess that means my levels weren't good."

Everyone makes mistakes, and if that were the only problem, I could overlook it, but she is defensive when I push for more information, and condescending at all times. If we do attempt IVF, I can't imagine going through it without more/better support.

Thanks again for the advice. I will check to see if I have had the tests you suggested, and if not, request them.

I'm truly sorry for your loss, and I wish you the very best of luck! Take good care.

Kirsten

iVillage Member
Registered: 02-28-2007
Thu, 05-24-2007 - 2:47pm

Kirsten,

I think a lot of us forget that the doctors are working FOR US. We're paying them hard-earned money and they should take the time to answer and address our questions and needs. I usually go in with a list of questions so I don't forget. When I was seeing my RE, I would tape the conversations (he had no problem with this) so that I could listen to it later and also so could my husband.

That nurse sounds like she should be flogged! What a witch! And even if you are about to start your period, she should tell you what your levels are so you can keep track of what's going on with your body.

My RE and his nurses were fabulous, but I still had to prod them along every now and again. They did regular blood work checks on me but didn't do a complete panel until after my third miscarriage AFTER I asked them for it. They agreed it was a good idea...and I was thinking, Why the hell didn't you recommend this after my first or second miscarriage? I would've gladly paid out of pocket for those if they weren't covered by insurance.

Anyhow, I hope you're able to find a better RE who shows more compassion and care!

Good luck!

Lois

  

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iVillage Member
Registered: 05-23-2007
Thu, 05-24-2007 - 11:29pm

Thank you, Lois. I too went in with lists of questions and really wish I had taken a tape recorder, that was brilliant! It's all so new and overwhelming that I'm sure I forget a great deal of it. I have requested copies of my files so that I can see exactly what's been done, and what still needs to be done. I will definitely be more proactive from here on out. I'm also going to start doing yoga to try to alleviate some of the stress. The clomid definitely does not help with the irritability and this will most likely be the last month I do it! Thanks again, and best of luck to you. I hope to hear how your process continues...

Kirsten

iVillage Member
Registered: 02-28-2007
Thu, 05-24-2007 - 11:47pm

I will definitely keep you posted! When I was TTC initially, I kept asking for clomid (even though I didn't know what it really did!) 'cause all my friends who had problems needed it. I was so disappointed when I didn't get any, but it turns out I didn't need it. But I used to think clomid was the miracle cure all and wanted some, too! :-)

My RE is such a ham that he loved being tape recorded. He even told me, "I think you need to flip the tape," paused, and waited until it was flipped before he continued. I think if you get an honest doctor, they won't mind going on the record. It's the skeevy ones who're all suspicious about why you want to record them.

I started doing yoga earlier this year and I like it. It does help relieve stress, is helping my muscles loosen up and also helping me get stronger. I used to do mat pilates a few years ago and really liked that as well!

Talk to you later!

Lois

  

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iVillage Member
Registered: 05-23-2007
Fri, 05-25-2007 - 12:40am

Hi Lois,

Your doctor sounds great! Mine is very business like, but I'll stop whining about her--I just have to find someone else (not an easy task, it turns out!) I was very reluctant to take clomid, and since I am ovulating just fine wondered why I needed to. Apparently it can boost follicle production...? I also know the down sides, though. I thought I would give it one more shot, along with IUI (to help with the thickening cervical mucous problem caused by clomid), and I'll be having baby aspirin hors d'oeuvres and guafanesin cocktails this month. Yuummmmmm...... Sorry, but without a sense of humor about it, I couldn't make it through this process!

I think I read in another post that you are taking a break from TTC, is that still true? I can empathize completely with your need to take a break. I married at 36 and my husband was only 30. While I was anxious to get the ball rolling, he really wanted us to have a couple of years to ourselves to travel, etc. I of course, wanted that too, but had a more realistic perception of the hurdles we might face if we waited (he's an eternal optimist, which I love, but in this case it is hard sometimes). We did wait until I was almost 38, and we've been trying ever since, and it shapes our lives and decisions in so many ways. We have taken a couple of breaks in the past 2 1/2 years... I'm not regretful that we didn't start right away, though--I may have had the same issues at 36 that I'm having now, and there's no point in looking back anyway.

We do remind ourselves often of one line in the marriage vows we wrote for each other almost five years ago: "...To stand by you always and maintain strength and humor even if sickness should threaten and turmoil surround us..." So far we've been maintaining both strength and humor (though clearly not constantly). Knock on wood, we'll continue! Be well and pamper yourself. I'm getting a massage this weekend, damn it!

Kirsten

iVillage Member
Registered: 09-01-2006
Fri, 05-25-2007 - 2:10am

Hi Kirsten,


Welcome to the board.


stellasiggy.jpg picture by estellaberg

iVillage Member
Registered: 02-05-2007
Fri, 05-25-2007 - 7:12am

Hi Kristen:

That nurse needs to get a new attitude or be FIRED!! I know you have enough to worry about but she is hurting other people too. I always give people like that the benfit of the doubt;but, if things don't improve, I would write a letter to the highest person on the ladder once you find another doctor.

Just my 2 cents.

Best luck and enjoy that massage!! Julie

iVillage Member
Registered: 05-23-2007
Fri, 05-25-2007 - 10:25am

Thanks to you both for your messages!

I ran into a friend at the same clinic who is seeing the same doctor and also has problems with this nurse (she brought it up to me before I said anything to her!), so it may be time to say something to the doctor. I certainly don't want to get her into trouble, but she needs to be a little more sensitive and informative (and by the way, stop talking to me like I'm 12 years old!). It's a vulnerable enough position to be in without having someone five years your junior calling you "sweetie" and talking to you like a kindergarten teacher!

Yikes, I sound cranky. I blame it on the clomid... ; )

And I realized my last post might've sounded a little too light-hearted with regard to keeping a sense of humor... I cry a lot too. Just have to laugh when I'm done crying or I'll be batty. Didn't mean to imply at all that any of this is a laughing matter, except that sometimes, it just has to be. Because I could've never predicted there would come a time when I would be so obsessed with my own cervical mucous (especially since I didn't even know what it was until a couple of years ago!) On that note, I have to start working.

Have a great day everybody, and keep the faith!

k

iVillage Member
Registered: 02-28-2007
Wed, 05-30-2007 - 2:02pm

Hi Kirsten,

How was your massage? What a fabulous idea! I'm going to schedule one soon, too!

DH and I have been trying to have a baby since we got married about 4 years ago. I actually wish we had started BEFORE we got married but he didn't want to have a baby out of wedlock. :-) I was like, who cares! We're both old and engaged already so no one's going to "judge" us. But that was fine.

We did a lot of traveling while we were TTC so that it wouldn't seem like our lives were on hold...plus, I'd always had this fantasy of conceiving our baby overseas! :-) I was dying for a honeymoon baby but that wasn't meant to be. We did get pregnant a couple months after we got married, but that sadly ended in miscarriage at 7.5 weeks. That just SUCKED, 'cause I never really thought I would miscarry. I know, I was delusional--I knew about miscarriages but surely it wouldn't happen to me!

I think you have a wonderful attitude because we can't really second guess our actions and go back in time. You are absolutely correct--you may have had issues getting pregnant at 36, so why think about that. I wonder about that, too. Just 'cause I always assumed I could get pregnant doesn't mean I would've been able to at 25 or 35. Yes, I probably could have. But who knows really, right, since I wasn't trying to then!

We have indeed been on hold for a couple months and haven't been TTC. It was a nice break, actually. It felt nice to NOT be so manic about that (me anyhow!). I think we'll be ready to try again maybe next month. I realize that I'm not getting any younger but I realize that there is only so much I can do...and we've pretty much done everything we're supposed to already (including IUIs and IVFs).

So, I am working on getting used to the idea that I may never get pregnant again (which I think would be a relief to my husband, because he is so worried that I will miscarry again). We were talking about adoption as well, but we're not sure if that's what we're going to do, especially since older parents tend to get older children, and I have my heart set on an infant.

There's a part of us that actually wouldn't mind growing old just the two of us with no children, and be "selfish" in our old age traveling and spending all our money on us. Don't get me wrong--I would trade all our savings to be able to get pregnant and stay pregnant and deliver a healthy little baby. But I'm trying to look on the bright side of the worst case scenario! :-)

Hope you're doing well...

xxoo
Lois

  

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