Thursday, September 18, 2008

Frustrated in Michigan

I'm getting sick of diagnosing myself. It seems doctors don't really have a clue. Have you ever watched Medical Mysteries on Discovery Health.  People have serious health issues and they search and search for many years (sometimes 20 years or longer), until 1 doctor says oh yes I know what it is and you are lucky you got here when you did. WTF? We are suppose to trust our doctors...isn't that what they get the big bucks for? Yet time and again I am the one that has to say what about this? what about that?

4 years ago I was diagnosed with PCOS. I knew I had it for many years prior to that. I mean I am the poster child for this wonderful health, infertility, related problem. Symptoms: 

missed periods----check

infertility --- double check

oily skin --- check

dandruff --- check

weight gain (hard to lose) ---double check

insulin resistance - -- check

high cholesterol --- check

anxiety --- check

depression --- check

skin tags --- check (although I do not know what these look like but my dr says I have them)

thinning hair --- check

hair in unwanted places --- check

sleep apnea--- Ahhh the one thing I don't have

(for more PCOS info go to they have alot of good info.)

Sounds like a barrel of laughs doesn't it? So, with all this it still took 3 doctors and 4 years to be diagnosed. I mean really? Come on? Maybe I should get a medical degree. 

Now, after my 4th lost baby I was reading that many women with PCOS need to have progesterone to support their pregnancy in the beginning. I knew previously about progesterone but did not realize it was something I should look into further...I mean surely my doctor would have mentioned something...I have had a history of not being able to carry a baby past 8 weeks.  So, in my latest appointment with my RE I mention this and he says 'We can try it" I don't think it's a problem for you though. He said we can make adjustments and try doing just the injectibles with progesterone again before going to IVF. Are we just throwing shit against the wall and hoping something sticks? Doesn't seem to scientific.  It seems to me we should have tried this from the get go. What I read said that by the time you find out progesterone is the problem its too late for the pregnancy to do anything about it. It makes me angry. I don't know if this is the problem but hopefully this will work and I won't have to go to IVF.  

Don't get me wrong I do really like my RE. He is the 3rd one I have been to and he is a very kind and compassionate doctor. When I have had my losses I really do feel he is grieving with me. He has been very positive about my ability to be able to have a baby (which is something I need because I am definitely not positive about it) and I don't want to change RE's at this point. Am I being stupid? I have a lot invested here but sometimes it just seems like they are just guessing. Maybe that's what they are doing I mean I have had some things happen such as the cervical ectopic pregnancy, happen that are rare but sometimes it just gets frustrating.  

I am hopeful that maybe this whole progesterone thing has been the problem all along, but then if it is I feel like I may have had all these unnecessary miscarriages and gone through an unnecessary hell...and that is just plain sad and unfair!!!

Anyway, I am not going to try the injectibles for a couple months because I still need to take a couple months off since the last miscarriage but maybe just maybe I won't have to worry about IVF. IVF scares me not only because of the cost but because it feels like the end of the road. If that doesn't work what am I left with? I have had enough trouble accepting not getting pregnant, I just can't imagine investing $10-15,000 and it not working. 

This whole thing just frustrates the hell out of me!


Clio said...

I also have issues trusting doctors' diagnosis. Fortunately or unfortunately, my dad is a doctor as well, so I grew up hypocondriac in a way, knowing all the terminology, all sorts of diseases and their treatments.
Once at an ER, I told the doctor I was allergic to a medication, and behold, that's the exact thing they put in my IV! The other one I'm still very upset about was my gynecologist. Right when we started suspecting IF, he had my husband go for a SA, but decided that the abnormal shapes in the results were circumstantial and never showed me the exam. I trusted him. Now 4 years later, after a lot of suffering and blaming myself thinking our whole problem was probably destiny or spiritual, we find out that, yes, we have a male factor infertility. In our case the only way to go is IVF. I was very reluctant about it. But now I'm ready to do it. We were also thinking about adoption, but I guess we still have that if science fails us. Of course money is a big issue, but perhaps you can switch your focus from seeing it as the end of the line, to a very helpful option, if it's right for you.

Cara said...

Doctors...hmmm...after a stillbirth and live birth with two different doctors in two different hospitals I finally realized my "Yes sir" attitude to whatever they THOUGHT best had to go. Now, I speak my mind and tell them WHAT I WANT for my body and my babies.

And, no, you don't need a degree because the internet holds many of the answers. As long as you show up well informed they have no choice but to think, "Shit! Another patient who did her homework. Guess I'll have to go her way now."

the Babychaser: said...

I'm going through something similar. After two years of treatment (and, count them, FOUR IVF cycles), they are suddenly looking at doing hormone treatment to improve my husband's sperm. WTF? Why weren't we looking at this a year ago??? I'm trying not to be angry. My RE is one of the very best, and I really like her. But I don't understand how something like this can come up when we are at the very END of our road, rather than when we had energy, hope, and money to spend on this. GRRR...

I know how you feel about being scared of IVF. I felt the same way--like it was just one step closer to the end of the road. I wish I could tell you you were wrong about that, but it's true. It is that step closer. But after some time I came to realize that there's no point in putting the end of the road off. Either it's gonna happen or it isn't. And if it isn't, at least for me, I'm ready to know so I can move on to another approach, like maybe adoption.

Good luck, hon. I wish this wasn't all so scary and grown up and just BIG.

Shelby said...

I am in a very similar treatment boat as you. I am looking to try injectable IUI and waiting another month before doing so and then, it's on to IVF. I also hope that IVF won't need to be an option, but I'm preparing for it.

I know how frustrating it can be when doctors have differing approaches to the same problem. It does make you wonder-what's the real solution?, but I guess that's the 'art' part of it, the variation I wish didn't exist.

Cassandra said...

Thanks for your ICLW comment...

Each additional level of intervention has also felt like a big hurdle to me, with IVF as the biggest. Now that we're adding ICSI for IVF #2 it doesn't feel like much more (esp. since I don't have to do anything different) even though there is more intervention and more cost.

I think it's too much pressure on yourself to consider a single IVF as the one and only shot and therefore end of the road. If the cost of doing a second is prohibitive right now, can you hold future IVFs as a possibility for the future?

Regardless, I hope that it doesn't come to that and that you get pregnant with a keeper before moving on to IVF.

Donielle said...

Yeah, I've had to diagnose both my sister and I with pcos before our docs would even mention it! I spent HOURS researching online when I didn't get the answers I was looking for. And I still haven't found a doctor I would trust completely, but I've found a way to overcome my own problems w/ pcos to the point where they are surprised. It's hard not to stick my tongue out at them from time to time. :-P

Barb said...

I went through 8 years and 5 doctors before TCM practitioner was the first to diagnose me. VERY frustrating.