I went online and looked up New Doc - to see if there was any info on her. She has her own website, and it includes her email address! I have been composing a list of 'concerns' to bring when we talk to her... and yesterday figured... what the heck! And emailed it to her. The gist of the email was (after a brief intro):
***
At a high level, I went off the pill in April of 2005, had well timed intercourse for a year with no results. Went to my GP, who referred me to Dr. N. We had all the 'normal' tests, and everything came back normal. Did one cycle of clomid, then 2 clomid with IUIs. Had a rest cycle, during which I had a VERY painful HSG. I had a positive HPT on Oct 7, but found it was ectopic Oct 19th (I have listed my total history below, but I also assume that you have my charts).
I am very frustrated with how my case is being handled. Below are my concerns (can you tell I'm a tech geek - I like to list things out)
Concerns:
- I don't feel like my issues in Aug-Oct were really looked into. I feel like the HSG was just a checkmark on my medical record. He told me it was something to be done before we moved onto the injectables. He made no comment of what it meant that the procedure was so painful (isn't the pain diagnostic in itself? Couldn't it mean that the procedure itself cleared a partial blockage or opened up a full blockage to partial? )
- After the ectopic, I would have expected some sort of follow up on my tubes, which wasn't done. Isn't the fact that I got pregnant after the HSG make it a strong chance that I could have tubal factor IF? Isn't an HSG after an ectopic is simple logic--why haven't I had one yet?
- Current doc is always commenting on my weight. All my hormone levels have come back normal, and I work out once if not twice everyday (Bikram yoga 4 times a week, and walk approx 20 miles a week). He will comment that our fertility issues are NOT related to my weight, but brings it up in every conversation. This upsets me. Either it's an issue, or it isn't. I have been trying to healthfully lose weight since the ectopic, and have succeeded with losing 20 pounds. I am trying to lose more. I have listed my weight history in this email also, as I want you to understand that although I'm overweight, this isn't a new thing, and I'm also in good shape.
- Also on the topic is weight, Current Doc said my weight OUT LOUD in front of my husband. This was very embarrassing to me. Although Aaron doesn't care, it's a sensitive topic (isn't it for most woman!?).
- Current Doc has mislead us about the timing of when we can start IVF. He had us all geared up to start IVF in May. Then they forgot that Aaron needed another SA. We were pushed off to June. Then we got the denial. I would have to think that the 'rules' for insurance approval are very well documented (as a matter of fact, I was able to go online and see the rules myself after the first denial). If we had known in advance that we couldn't start IVF until October of this year, we would have had a much less stressful time this summer, worrying about getting tests done and expecting to be approved for IVF when there was no way that would happen until 12 months from the ectopic
***
I also included a high level history of my TTCing and my weight. I sent this at 4 PM yesterday - and she wrote me back the same day!!!! Here it is:
I have the picture. Please make sure I have your records before we meet. weight per se isn't so much of an issue. We do pay attention to body mass index-- a measurement of the relationship of your height and weight. Ideal BMIs are 18 to 28 from a health standpoint, but we don't see a difference in pregnancy rates until >40. HSGs are generally painful, and the pain isn't a reflection of your tubal status. If you had 2 open tubes, and had surgery or treatment for an ectopic on one tube, it's not absolutely indicated to take a look to see if that tube is still open. Any ectopic is presumed to indicate possible tubal disease, but 90% of the time your next pregnancy will be in the uterus..ie the tube or tubes remaining usually work fine. See you next week.
I'm already excited about the visit.
6 comments:
I am so glad that you are excited to see her. She is awesome, but like I said before, if you are expecting warm fuzzies she is not for you. She is very very nice, but she is gonna tell you how it is. Although, she always at least listens to what I have to say and makes me feel as though I have some input in my treatment. She is very very thorough, her nurse is amazing, and the insurance person that works for her is unbelievable. Good luck Cece!
YAY!
That sounds wonderful, even though she disagreed with my painful ectopic diagnosis (based on my empirical internet research with women I know--read tongue in cheek there, if you would). Even so, she might be able to argue tubal disesase as a reason to go to IVF for insurance. Also, examining the report from the HSG may be helpful--finding out if "spillage" was immediate or not, which I think should be in the report.
Take that comment about making sure she has your records really seriously. I'm assuming you've already requested that your records have been sent. If a week or two has past since you did so, call the nurses at the clinic, leave a message with the nurse assigned to her (they never answer the phone directly) that you are calling to confirm that all your records have been sent. You should enumerate the records you expect will be there: summary from Dr. N., lab reports from Dr. N.'s hospital, report from HSG, films from HSG, whatever else you expect is there. It may well be HER clinic that loses them, you just need a human being who will try to track them down, they're incredibly busy and if it's not on fire, they're not throwing water. So be on fire, but nicely. Also, just a note, sometimes you have to go to your hospital directly to pick up the HSG films. You check them out for your visit, then you check them back in after. YMMV, as with everything.
The last thing is that while you totally deserve sympathy and support for the shitty way your doc has treated you, I'd suggest you do your best to compartmentalize that stuff and not bring it up with the new doc except as a general note, if at all. She'll probably react best to a sort of detached, scientific, data-driven presentation of your case (pretend you're a medical resident presenting a case); the nurses can sometimes provide support around the many MANY indignities of IF, but most of the time, you have to put that stuff here or in a Resolve support group. It distracts the docs and makes them more likely to be nervous around you, and that's not their strong suit (and not the main thing you need them to do). While you're unikely to find a doc who is going to take a kind and supportive approach to the weight issue (at least not an RE), having someone who makes evidence-based decisions, as she seems to, around BMI and initiating IVF, is perfect.
One more note. It may take a month or two to get started with New Clinic. When I was there we had to do a class that was scheduled at certain times and if that messed up your schedule, then tough noogies. Your meeting (or perhaps the next one) will probably include a nurse consult. That's the time to ask over and over again what you need to do in advance of starting to cycle with them. Make sure all your tests and classes and meetings are out of the way so you can start when you expect to and don't have any surprises. You won't find the ridiculous foot-dragging of your current doc here, but you will find lots of communication breakdowns and (as is the case pretty much everywhere) plenty of slow, slow, slow process for getting started.
I'm excited for your meeting too. GL!
Wow, good for you for sending it, but yaaaaaaaaaaaaaaaaaayyy that she replied! I'm glad she took that time, that's very very cool.
She sounds excellent! Let us know how the appointment goes.
I'm here with the grain alcohol. Shall I hook you up?
How much do I love her that she admitted that HSGs are painful? I think this doctor rocks. And the fact that she wrote back? Priceless.
She's right. AND a glass half full type. :)
I really *really* hope that you fall into that 90% next time. You deserve it.
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