18 February 2011
But, earlier this week I was back at his office again and we were going over the post-operative lab pathology results. I asked for photocopies of my other IF related medical records from the past couple of years. Interesting reading indeed!
My RE wrote a letter back to my GP in the fall with an update on my case. He talks of a long history of infertility, laparascopic findings in April 2010 of uterine polyps, fibroids, endometriosis and pelvic adhesions, and previous pelvic surgery in 1999 that is also of concern. The elevated FSH and low ovarian reserve are however the primary obstacle. He writes "An attempt at an IVF cycle had to be canceled due to poor ovarian response and at that time the endometrium was noted to be irregular. We are going to do our best to attempt another IVF cycle."
"Do our best" doesn't sound super encouraging. It's starting to make sense now why my GP said what he did on the previous visit.
It bug me that there is an assumption that patients can't handle the truth, or don't have the intelligence to understand what things mean. Why they can't just be upfront and honest about these things in the first place? I've been asking questions all along about my previous surgery, whether the removed mild endometriosis, polyps & fibroids were a concern, and then there is the elevated FSH/low reserve stuff that has freaked me out from the very beginning.
In a weird way I actually feel validated by reading the charts. I've been feeling that there were missing pieces or things I wasn't being told for a long while. Everyone just kept saying not to worry about it and we were essentially unexplained because all of the findings were small issues or non-issues and did not explain why we'd never conceived. I can't tell you how many times I've been told "you will most likely be successful". Great, so when you don't live up to the expectations, you just have further to fall?
Does it change our plan? No, we'll go forward with this next IVF attempt and see what happens.
How interesting! Glad you got to see the contents of you file.
ReplyDeletemollygirl21, 18 February 2011 - 09:24 AM
I totally agree that doctors think we are dumber than we really are. Hello, we have IVF.CA!! I would think it be rare for someone to go into ART without doing at least a little bit of research. The woman side anyway. My DH still doesn't fully grasp what the heck went down. LOL.
DeeJay, 18 February 2011 - 09:57 AM
The truth is some powerful stuff, how else can we make an informed decision!I got copies of my surgical reports back in 2002 from my obgyn(I was 24 and had 3 surgeries for endo) so I knew how bad things were. And my first RE was very honest and very up front, it was hard to hear, but I'm grateful to him for his honestly, it helped us set expectations and set a plan, after my first ivf cycle, we decided only 1 more egg retrieval for me and then we would move on to donor eggs(there is an increase risk for women who do ivf to develop ovarian cancer, women with severe endometriosis are at an even greater risk). Anyway, I think its important for every couple to set up an end game plan, to know how far they are willing to go, for some they may stop at an iui, for others (like me) our end goal was surrogacy with donor eggs(maximum of 3 different surrogates, thankfully we only had to work with
Duck, 18 February 2011 - 10:48 AM
I agree... you always have to be your own advocate and push for answers until you are satisfied. I wish doctors didn't feel like they had to keep our records from us but it also means they can't be quite as honest about things (like if a patient is difficult to deal with or things like that). I'm glad you're feeling better about things!
RainbowsPromise, 18 February 2011 - 11:05 AM
I think accessing and reading your medical file can give you a really in depth look at everything. I have peeked at our file a few times and it just let me put things into perspective. Dh and I have committed to 3 fresh cycles and then we move on. We've made peace with that, BUT I'm still holding onto hope for that our FET or, if needed, our last fresh cycle will give us a BFP. I hope your next cycle gives you that BFP!!!
LMC, 18 February 2011 - 11:12 AM
Good for you for taking the initiative, Silverdollar. Facing things head-on is one of your many fortés! Lol DeeJay
rhubarb, 18 February 2011 - 12:11 PM
I have also read my entire chart and it was very interesting to see indeed. I often wondered if Dr's read our charts carefully enough before seeing us that that we are not mixed up with someone else - or details are not forgotten about. I think it is important to understand test results and to read our own histories. Most of us do a lot of our own research and so a clear understanding of where we have been and where we are headed is so important.
lilly, 18 February 2011 - 12:57 PM
I don't think it's possible to determine in advance how far you'd be willing to go. I think that each cycle has to be assessed and you have to see what information can be gleaned. Everybody hopes to be successful on the first cycle but, as so many on this site know, that is most often not the case. I never thought that I'd be in the situation I'm in, looking toward a 3rd IVF attempt (+ one cancelled cycle) but I do think that there is reason to be hopeful. I am glad that you got access to your records and I am really glad that you are with such a great doctor. I hope that you will be successful on this upcoming attempt! And I think that a lot of GP's really don't know about fertility stuff. When I talked to my GP about doing IVF (after I'd had a cancelled cycle due to my low reserve and lousy response to the first protocol I was on) he said, "Oh you will probably have 6 babies because they'll put 6 in!" He actually seemed to have no concept of my particular issues or the process. Pretty eye opening!
ReplyDeleteleigh14, 18 February 2011 - 05:41 PM
Wow! Very interesting. Makes me want to see my file....at my physical, my doctor asked me about whether I had considered adoption...I agree with you 100% that you really need to be proactive about your care....I sometimes feel that we go through the protocol because that is the "next step"...not necessarily the right next step....but the next step in the list of things to try.
lookingforward, 18 February 2011 - 07:06 PM
If there's one thing I've learned from this IF stuff, it's get copies of ALL of your files. I found out that my surgery report had errors in it and wasn't even written by my gynecologist. I realized my former GP hadn't been very helpful/supportive partly because she only had half of my fertility reports. I went to the radiology centre and paid for copies of my HSG - and that gave me so much peace of mind because the pictures looked so much better than what the letter said. I now keep a copy at home of EVERY letter from EVERY specialist. I can honestly say (not trying to be obnoxious) that I understand my medical conditions better than most GPs do and I think I'm a better advocate too. :Emoticons09710: And about putting a limit on your IVF attempts, it's nice that your GP is looking out for you, but no one can truly predict whether you'll have success or not. There's too much involved that doctors still don't understand. I would say just play it by ear and see how you feel at each point.
impatient, 18 February 2011 - 08:27 PM
I found with our first failed IVF we got one story, but when we decided to go back for a second that all of a sudden a lot more "truths" seemed to show up. Even to the point of a near admittance of perhaps some poor choices on behalf of the RE.The whole truth is there for us to find, that's for sure. And sometimes, it sucks to be even more aware. But at the same time, it's also nice to know the truth and be able to be truly realistic about what's to come.Good Luck
DesignerBug, 18 February 2011 - 08:50 PM
Is it possible the clinics over-emphasise our chances of success to take the money from our pockets? Then later on tell us how hopeless we are so we don't spoil their figures?Oh so young but so cynical!
ReplyDeleteGood Fortune, 19 February 2011 - 02:32 AM
SD - we've gotten the pollyanna report on so many stages of our IF journey its laughable. I very much understand wanting the facts and being able to make an informed decision based on facts not reassurances and false expectations that are made to 'keep your spirits up'.When our RE told us Donor Eggs it was hard but we were still adult enough to make decisions to give it another try knowing full well that our money may be wasted. Still, it was our decision to make and I'm glad we went in with eyes wide open and low expectations. I'd rather have low expectations and be pleasently surprised than have high expectations and be crushed.Good for you for finding out more.
4leggedbaby, 19 February 2011 - 03:53 PM