take my diagnosis… please
Posted: May 10, 2006 Filed under: Uncategorized 16 Comments »One of the reasons I like my Reproductive Endocrinologist so much is well-captured in this fact – when she held up the pamphlet and started to tell me the main symptoms used for diagnosis, she didn’t include the word, "overweight."
"It’s a syndrome, of course, so… you know… the diagnosis is…" she waggled her head to show the wishy-washy nature of such things. I did know. Fibromyalgia is also a syndrome. There is a pretty well-agreed-upon diagnostic standard, but it is by no means exhaustive and there are always symptoms that don’t fit or fit too well. Having a syndrome means trying to fit yourself into a list of symptoms and hoping you have enough of them so that the recommended medication will actually do something.
"So even though you don’t have cysts on your ovaries and even though your period is not totally irregular, there are other things that might fit the definition. Not that I’m saying you have it for sure, just that it’s possible that you fall somewhere on the spectrum. I mean, there are people who definitely fit the criteria, no doubt, and then there are people who definitely don’t and then there is a whole long spectrum in the middle. And it’s possible that you fall somewhere on that spectrum. So you have acne?"
I do. Always have. Certainly not a debilitating case, by any means, but I almost always have some gross thing brewing under my face. The last several years it has spread to my chest and sometimes even my back. It’s horrific, but since Wes and I really enjoy gross things, we tend to consider my zits as something to bond over – "look how gross this thing is!"
We talked a bit more. She explained that she wanted me to have a fasting insulin blood test and to also test my blood for a bunch of other stuff. She didn’t do the full, every-possible-problem-in-the-world workup a year ago because there was no reason to think anything was wrong. "But now… I mean, it’s possible that you’re not pregnant yet just because you’re not pregnant yet, that it’s just time. But it’s also time to dig a little deeper and see if there is more going on."
Can I just say this: why don’t they just do the every-possible-problem-in-the-world workup as soon as you walk in the door and save a person $5000? Why why why? I know there are plenty of you out there who love the crunchy feeling of doing it au natural at all times. But we’re talking a good chunk of money here. For something that we might have been able to catch. Not that I blame my doctor. I don’t think there are many doctors who would look for PCOS in a person with regular periods and no cysts. But why can’t the big workup just become part of the standard of care? I’m just saying.
Anyway, we talked a bit more and I loved the way she said this, too: "You don’t have any facial hair." Like a statement. She didn’t say, "And I see you have quite the manly mustache brewing there." She just stated this lovely little fantasy that I don’t have facial hair, helping my self-esteem out considerably, allowing me to continue to believe it isn’t noticeable unless you are at kissing distance.
"Actually, yeah, I do." I rubbed my upper lip without thinking about it. She leaned in just a little from across her desk. She didn’t seem to be able to see it but she took my word for it and scrawled notes. I was thinking about all my female relatives with their bad periods and their hairy, hairy bodies. I was thinking about the huge, thick, black chin and neck hairs that have to be plucked monthly, that are another source of Bri-Wes bonding – "look at this gross hair!"
She gave me some information about it – PolyCystic Ovarian Syndrome. She’s not sure I have it. I wasn’t sure either. I was trying to withold judgement until after the blood test. But as I drove home, reading the info at stop lights along Ocean Parkway, I became convinced.
Overweight – check (20 pounds, to be exact)
Facial hair and acne – check
High cholesterol – check (and even when I lost 27 pounds, my cholesterol stayed bad and high)
I don’t know for sure, obviously, but based on whatever happens with the blood test on Friday, she may be starting me on Metformin. If she’s right about this, it could correct my infertility issue. Even if I want to go on Clomid and not just wait to see if the Metformin does the trick, she would want me to be on both, as the Metformin would make the Clomid more effective.
For all of you not in the IF spheres, I want to share with you the biggest irony of this possible diagnosis:
"The
underlying cause of PCOS is an imbalance of hormones. This imbalance
often seems to be linked with the way the body processes insulin.
Insulin is a hormone produced in the pancreas that promotes use of
blood sugar (glucose). Insulin problems can increase male hormone
production by the ovaries."
Did you catch that? MALE hormones. I may have too much of them. Evidently, the sex hormone assignment in our house is just ALL kinds of screwed up.
——————————————-
OK, fertility friends – what do you think? Given this info, do I go ahead and waste $1000 insem this weekend even though I may have this thing that makes it unlikely to work? Does HSG-enhanced fertility trump a possibly mild case of PCOS? Do I have to be all last minute and get the blood results Friday afternoon and then decide (which may be impossible if the results are late, of course)? HELP!
Sorry you have such a dilemma, and possibly PCOS. I don’t know anything about PCOS, except that a lot of people seem to have it, so take this with a grain of salt. You still don’t know that you have this condition, and even if you did, you don’t know if it is really affecting your attempts. So, I would still go with the next attempt given the recently cleared tubes. Good luck, my friend.
Unfortunately, I think PCOS has become a “catch-all”. I have cysts on my ovaries that are visible in an ultrasound, but normal hormones. I was anovulatory and had no periods, yet I lost 5 lbs and now I’m having a totally regular period. I feel suspicious that they really don’t knwo what the fuck they’re talkign about. I’m not insulin resistant, my blood sugar levels are normal.. And still they put me on Metformin! Metformin made me extremely sick (if you have IBS already, I would not recommend it) for ages… I had diarrhea non-stop for 6 weeks at least.
So yes, you have some signs of PCOS. You also have lots of signs that you DON’T have PCOS. If your hormone levels end up relatively normal and you’re not insulin resistant, and there are no cysts on your ovaries, and your periods are regular – I would call bullshit.
And yes, they should be doing these tests at the beginning to rule things out. It’s so aggrevating to watch so many of my friends shell out thousands and thousands of dollars only to LATER find out they have some kind of (often easily diagnosable and easily correctible) problem that’s been keeping them from getting knocked up.
Good luck getting answers. At least you have an RE who’s being pretty aggressive about helping you get pregnant!
wow!
Those aint easy decisions
I can feel your anger and your frazzleness over the email
There is nothing worse than doctors who spew out possibilites and create iffiness.
i agree why the heck dont they do the complete workup when you first set foot in the office
What did Ms. RE say about whether it made sense to insem this cycle?
Now that you’re working with an RE, you should be able to store the goods at her place. This means you can go ahead and order it, not pay the ridiculous last minute shipping charges, and if you decide not to insem this cycle, than it’s there for next month.
“An” RE or “a” RE? I can’t figure out why it should be “an” but it sounds right. Any insight, madame librarian?
I’m on Metformin for PCOS, and yes, if you go on it, you will have diarrhea for a few to a bunch of weeks. It isn’t pleasant, though I found that it was fairly predictable in it’s timing.
But….it will get you more regular, and perhaps help you to get pregnant.
Due to what you’ve described (hair, zits, weight, BP) it pretty much sounds like PCOS.
Maybe take this cycle (and perhaps the next) off? I know that sucks but, it will take that long for the Met to work….but save you some money? It’s a tough call, mostly dependant on how attached to the $1000 you are.
I’d also ask the RE her opinion….and if it feels right, follow it.
I didn’t ask her as directly as I should have – I mean, I asked her and she said yes I could totally do that but what I should have said was, “If it were you…?” So she seemed very agreeable about the idea of doing it but neither encouraged nor discouraged me. She knows we are starting to feel the money issue (which, yes, I feel even though it is, for the moment, being paid by the Grandpa fund).
Anyway, the ordering and storing issue aren’t the problem – I’ve been doing that bit for a year now. And I already ordered it because we can go ahead and use it later if not now, obviously. It will be there tomorrow. I just have to decide whether it is worth it to try. Do women with PCOS or PCOS-like symptoms get pregnant without medication or is that so unlikely I should just wait and not waste?
Not 1000% sure but I would say “an” RE. : )
Thanks for the input, j. Useful. Not happy. But useful. I don’t know what I’ll do – I would like to know what those blood tests say, but my cycle might not wait for that knowledge. My eggs tend to like to pop out when it’s least convenient. Argh.
And yes, I agree that syndromes are weird things that may or may not be useful to diagnose and all that jazz. But I sure as shit want to know if something is up with my insulin. My family is chock full of bad high blood pressures and cholesterol levels and this would be another reason to try and get myself back under control. And if I don’t have any insulin level issues, it would be another reason to celebrate with, say, Ruffles and onion dip. : ) OH, and cheese. Please don’t make me give up cheese.
Well… thanks to a 4th grade field trip, I moved the blood test to tomorrow morning. At least I should have the info a little sooner that way.
bri–
I would probably wait. that’s a lot of money, and the HSG is supposed to give you increased fertility for a number of months, so I would wait for a little more information.
also, I would SAY “an” RE, but I would WRITE “a” RE. It’s because you say, “ARE-EE” which starts with a vowel, so needs “an” but you write… oh, fuck it, nevermind….
now that your appt is for tomorrow, you can sort of wait to decide. i know its alot of money, and not my money – but i’d say go for it. i guess tho, i don’t know HOW much of a crunch it is or how big the grandpa fund is, and how you want to measure it out, etc., etc. I wonder what the old korean fortune teller dude that my mom periodically goes to, i wonder what he’d say is your auspicious day for conception. anyway – it sounds like you might be getting somewhere here. i’ll be thinking of you tomorrow. i know if it were me, i’d sort of want the blood test to come back positive so that there was something definitive i could put my head around. not very buddha of me. i’ll be thinking of you.
FUCK my computer. It just ate the long and vaguely thoughtful reply I’d been working on. Ugh. And I have limited brain so I’m not sure I can recreate it.
From what I have read, Met is no fun, but it really has been very helpful for a lot of women with unexplained IF. With PCOS and the possibility of Met now on the table, I *would* now wait a month or two, even though I am a damn the torpedoes kinda gal. And even if the bloodwork comes back negative or inconclusive, I would give serious thought to trying Met anyway – some docs are now taking that approach, given that PCOS is a syndrome, and finding it helpful for women who have unexplained IF.
I’m sorry that things keep getting complicated and delayed, but glad you have some new ideas to work with. Good luck.
PCOS? really?
My RE saw my obese butt in her office, took one look at my insurance coverage and sent me to take all sorts of tests. The only thing she did right IMHO.
I’m a cheap chick so I say no liquid gold swimmers till blood test is in.
a) don’t blow the grand this weekend. it is not going to work. take like $200 of that grand and put it toward fabulous things for our weekend in marin. i will match your $200. maybe we should have a bottle of dom. not to be a bitch, but i have had a bad vibe about this month’s squirt even before this recent development. now i am sure enough to be prescriptive (which if you know me, means i am least like 3% sure, haha)
b) it is SUCH a good call to pluck those thick black facial hairs. such a good idea. i definitely approve.
Hi everyone, I came across some information that might be relevant and helpful. About one third of women on metformin experience gastrointestinal disturbances, including nausea, occasional vomiting and loose, more frequent bowel movements, or diarrhea. This problem occurs more often after meals rich in fats or sugars. The symptoms lessen over time, so if you can tolerate the GI upset for a few weeks, it may go away. Some women have found it helps to start with a very low dose and gradually increase it. One “benefit” of these unpleasant symptoms is that you find yourself eating less and thus losing some weight. I got this info from a Dr. Dunne’s
PCOS and metformin article.
Hi everyone, you’re aware of the recent news regarding Avandia and heart attack risk. But did you know it also increases the risk of bone fracture? That’s according to an article by Dr. Nancy Dunne. She says improving the composition of your diet, getting more exercise and controlling chronic stress can go a long ways toward solving your insulin resistance problems. She describes how to use diet, exercise and stress management in her PCOS diet book.
Hi everyone, I hope you will find this information helpful and relevant. There is new evidence that cinnamon may be directly helpful for PCOS.
In a pilot study released in February 2007,researchers at Columbia University showed that consumption of cinnamon reduced insulin resistance in fifteen PCOS women.
Click here to read the full article about Cinnamon and PCOS.