Thanks for all of your supportive comments. I am going to change doctors -- in fact, I've already emailed my doc asking her to refer me to the OB in the HMO's local system who has the most experience dealing with high risk pregnancies and patients with infertility issues (which is my not-so-subtle way of firing her). I like the email approach because then it becomes part of my medical record. We lawyers like us a good paper trail, mm-hm!
I don't want to be over-medicalized or treated like a fragile flower, but I do want my doctor to have a clue about ... well ... treating patients, for starters. Preferably also a doctor who won't throw tired cliches at me when my IF issues come up. My own private theory is that even the HMO's top doctor won't be much help because the HMO is an HMO and not a hotbed of highly-paid experts, but perhaps I'll be proven wrong.
The other project that I'm going to work on is convincing my HMO that they need to develop a "What to Expect When You're Miscarrying" pamphlet that their OBs can distribute to patients like me. It would set out the basic options, include information about what will happen if you choose the various options and describe what will happen afterwards. I'm expecting an uphill battle on this, but honestly, it's only fair! My HMO drowns you in glossy folders, info sheets and pamphlets when you find out you're pregnant. Then suddenly, when you find out you're miscarrying, no one will speak full sentences to you anymore (probably because they're afraid you'll melt into a puddle), and the information they do give you is not helpful. Not that you can get past the screaming grief banshees in your head to hear what the medical folks are saying to you anyway.
If I'd had a nice simple pamphlet to read on my own time when I was in a space where I could deal with it, it would have made all the difference. It was so damn stressful having to have make phone calls and have personal interactions with these people so I could get information, when all I wanted to do was crawl under a log somewhere. Anyway, this won't be simple, but I know how to bully my way through corporate structures, and I figure that exposing this gaping hole in their patient communication system will have a bigger effect than filing a formal complaint against my doctor -- if I'm successful, then other women might not have to go through what I did.
I don't want to show up empty-handed for this project. My plan is to give them a list of information that women who have experienced miscarriage have identified as valuable information. I found a wonderfully honest, incredibly sad thread on motherhood.com with stories by women who have had miscarriages -- 4 years worth of detailed stories, wow -- so I have a ton of information to work from with regard to the variety of ways women experience miscarriage. But I'll need help with my main question, which is "Why the hell didn't my doctor tell me XYZ?"
Here's where I go out on a very fragile, emotionally-fraught limb and humbly ask for your help. Do you have relevant experiences that you're comfortable sharing? If so, what did your doctor tell you that was helpful? What did they NOT tell you that you really wish you had known? If you aren't comfortable leaving your answer in a public comment, you can drop an email to cranberryesq at gmail dot com. I know that this is not easy to talk about and I definitely know that these are excruciating memories to re-live. I'm just trying to figure out a way to make it easier for others so that some positive energy can come from this awful experience ... I'll try to post the final information too, once I pull it all together. Fully anonymous, with identifying details removed, of course.
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Meanwhile, in the latest adoption news, we passed our FBI background check, much to our amazement! (Seriously, the Mister is always getting packages and emails from Iran, and you should see the emails we send around about the president ...) Our intake interview with the agency is scheduled for next Friday. And then the fun really begins.
I thought this already but your post today made me realise that you must be a truly wonderful woman. What a lovely thing to do for other women. I wish we weren't just blog buddies and could meet up. The 5,000 miles between us makes it difficult. I am so glad I found your blog.
Posted by: Almamay | July 20, 2008 at 02:41 AM
Oh my dear. I read your last post and I was just so frustrated for you! I can understand if a GP or internist isn't the most savvy with women who are having a miscarriage, but an OBGYN? You have got to be kidding me. The way she handled this was unacceptable and was just terrible. You didn't need that and she needs to know what she did was wrong.
I was lucky (well, given the situation) that my RE diagnosed my miscarriage and was very, very helpful. He answered my questions and advised me as to what my options were. The only thing that was weird was for about 24 hours after I found out our baby had died, I was convinced that he was wrong. I read all of these message boards where women had an ultrasound and no HB was found but then went on to have healthy babies.
I called him and he was very, very helpful (again). He went through all of the various methods that he used to make sure that it wasn't viable and by the time I had my D&C, I was pretty certain that it was over.
I didn't have any really bad experiences in terms of lack of information, but I really believe that was because my RE was still acting as my OB at that point.
I think it is wonderful that you want to put together this information. Unfortunately, it will be needed for a lot of women.
Feel free to email me if you want more information or have other questions. Hugs.
Posted by: Mrs.X | July 20, 2008 at 12:26 PM
I'm very, very glad to hear you're changing doctors.
Posted by: niobe | July 20, 2008 at 02:35 PM
what a wonderful project to develop. and you're right, not only should they want to provide this information, but then they wouldn't even have to actually *talk* to the patients when they have questions.
glad to hear you're changing doctors.
Posted by: luna | July 20, 2008 at 11:45 PM
That pamphlet is soooooo needed!
Posted by: docgrumbles | July 21, 2008 at 03:06 PM
I went through this just a couple of weeks ahead of you - Thank you for your honesty and information, I appreciated your putting into words what I was feeling. Your pamphlet is such a good idea - here's my view: I didn't make it to the OB and was still under the care of my RE. I don't know if that makes a difference (they deal with more Older Chick Miscarriages, maybe?), but I was comfortable with the level of support and information. My RE is pretty academic, but she did give me a hug, which I wasn't expecting, and, not being a hugging type, I was comforted by.
My only advice is if a woman does get a D and C, and the "products of conception" are tested, they WILL tell you the gender of "The Products" without asking if you want to know. Since, as you pointed out, a result of Normal Female can be misleading, you do need to know the gender to make sense of the genetic testing. Also, be ready for them to just tell you, no send up or "Is this a good time to talk about it?" They'll just spill it. The call caught me by surprise in line at JoAnne fabric as I was trying to find a new hobby (come to find that I sew about as well as I maintain a pregnancy) - So I got to absorb the meaning of Normal Female in the fake fern section, not such a treat. Good Luck with the pamphlet - I'm just sorry you had to go through this extra stress with your OB - keep us posted!!
Posted by: Kristen | July 21, 2008 at 10:37 PM
I'm so impressed that you're using this rough time to help others. I've never m/cied, but I would definitely want detailed information about the process, especially the aftermath, at least from the physical perspective.
I really hope you achieve your goal and help other women gain better treatment and more consideration.
Posted by: Shinejil | July 22, 2008 at 06:45 AM
I'm so impressed that you're using this rough time to help others. I've never m/cied, but I would definitely want detailed information about the process, especially the aftermath, at least from the physical perspective.
I really hope you achieve your goal and help other women gain better treatment and more consideration.
Posted by: Shinejil | July 22, 2008 at 06:45 AM
That's WONDERFUL that you want to help other women that have to go through this. A pamphlet would be VERY helpful.
My doc gave me the "Empty Arms" book, which was somewhat helpful emotionally...but it doesn't really get into the nitty-gritty details.
The biggest issue for me was that it all felt so RUSHED. I had JUST found out that my twins had died at 19 weeks and had to make all of these big decisions right away. While my doc told me my options (D&E or induction), I felt like I didn't know the "what will happen next" piece of either. It would have been really helpful to have something that detailed all of the options.
You're amazing. :)
Posted by: noswimmers | July 25, 2008 at 09:22 PM
The first time I miscarried, I was in the care of my PCP, rather than my RE. I hadn't even seen a doctor yet for my pregnancy, so the first doctor visit was when I was bleeding.
She really didn't tell me anything. Just took a blood test and said to come back in two days. So I didn't know how bad it would hurt, or how long it would take, or when I could be sure enough I was losing the baby that I could take pain pills. We never followed up with her with any sort of exam or blood test (after the 2nd day beta). Just started trying again two months later.
At the time, I wasn't mad about the lack of information. I didn't know any better. But I think you're right--doctors need something like this. You go, girl!
And congrats on passing your FBI check!!! Yet another step toward motherhood.
Posted by: the Babychaser | July 26, 2008 at 03:26 PM
I was shocked when the nurses at my RE couldn't answer my simple basic questions about a blighted ovum, like when would I start bleeding, how much should I expect to bleed, how long would the bleeding last. Happy pamphlet making!
Posted by: Account Deleted | July 26, 2008 at 04:36 PM