Tuesday, December 2, 2008

Going with your gut...

Of late, a lot of my IFer friends – cyber, and IRL, are beginning to go with their gut on part of their treatments.

I have always been a very strong believer of believing in my gut. If I feel something is wrong, I believe the best thing is to find out if it is wrong. Specially with IF and other health related issues.

Nichole recently talked about taking the plunge and setting up an appointment with her doctor to see if she could possibly have the endo that she suspects she does.

Yesterday one of my friends IRL called and said she has decided she wants to request her RE for a laparoscopy because she is not convinced that “nothing is wrong”. She has been through several IUIs, 2 IVFs – all BFN. Her DH had varicocele surgery, and after that, her RE wanted them to do IUI for a few cycles before moving ahead with another IVF. My friend though has a feeling that the doctors are missing something. She plans to ask for a lap to see if her gut was right.

Another friend from one of the message boards did just that. She has had 4 losses, and with her pregnancies and losses, the doctors discovered that her tubes had got blocked. They recommended IVF to her. She did one IVF, got pregnant, and unfortunately lost that baby too. The RE said she could proceed with FET of her frozen embryos. Before that she decided to request a lap. Her RE did not think it would help, but she insisted. Guess what? They found stage 3 endometriosis, cysts, and endometrioma. They cleared all that up. They also managed to unblock both her tubes!!

Shelby recently is feeling let down by the NP at her clinic for handling her IUI cycle not as well as it could have been handled. She too says she will question and maybe cancel her next IUI if she feels her questions are not answered.

2 years ago, in Nov 2006, I remember re-grouping with my then RE. Our first IVF had failed in 2005, and to me, that was the end of the world. IVF was the mother of all treatments – how could it not work? And something about the “All your tests are fine, this is just pure bad luck that none of your treatment cycles are working out” reasoning that the doctors were giving us was not right. I “knew” there was something more, and beyond “Is there any other test we can do”, I did not know how to question the doctor’s judgment. During that regroup meeting, I did ask. I was furious from all my failures, and I wanted answers. DH was holding my hand under the table to calm me down, lest I get too aggressive with the RE. I finally asked the doctor “What if there is something in us on a more genetic level, and what if my eggs and his sperm are just making bad embryos?” He said “Well, there is one test, but nothing comes of it most of the time. Since you are insisting, let’s have you do this test.”

The test was a karyotype. A simple blood test – yes a little expensive, but in the grand scheme of things, considering how much we had spent by then, an additional $800 didn’t seem very large. DH’s result came back with a translocation. That RE all but dropped us like hot potatoes telling is to give up and go adopt.

I wonder today, if I had not asked that day, we may have not known what we know today. We would have continued with FET, maybe more IVFs with the same RE, not knowing how bad things could turn if I did get pregnant with a baby with an unbalanced translocation!

There are way too many patients (of IF and otherwise) who “feel” something is not right, but they don’t ask their doctors. All of us have the hesitation that stems from the feeling that the doctor is the medical professional, and he will know what is right and what is not. How can we, as patients, question a diagnosis or a treatment plan?

The thing is, we know our bodies so well. Specially us IFers. We are so in tune with every twinge in the body that we sometimes feel and know things that doctors cannot see. We have to step up and help our doctors diagnose and treat us well.

When in doubt, ask. When you feel you have been given too little medication, or too much, or when you feel you have a nagging feeling about something – ask. In the worst-case scenario, you will be wrong. That may not be that bad a scenario after all, right?

The author of “How Doctors Think” also says this in his book. He says we should help our medical professionals chart our treatment plans. Sometimes we may unwittingly hold back information, which, while seemingly unrelated, may change the entire treatment perspective!

So speak up my friends. Speak up if you think something is being overlooked, or if your gut tells you something isn't right.


Lisa said...

Awesome post!!! I just made a decision to cancel IVF#3 today - my gut was telling me it was going to be a disaster. I get better and better at asking the questions and insisting on answers and insisting that they think about what is going on. Some call it obsession, I call it advocating for myself!

Lisa said...

I couldn't agree more!!!!
I am a big beleiver in listening to your gut and that inner voice. And I beleive questioning things, asking as many things as you need to, investigating, researching, and having many many appointments with your RE's to make sure that all your concerns are addressed at each stage along the way. I am a big beleiver in being an adovocate for your own treatment, and never, ignoring your gut or inner voice. I agree with speaking up 100%! I know that if I wasn't such a royal pain in the butt and if i didn;t listen to all my inner voices, I would not be where I am today. I know that for sure. So yes, ladies, speak up. It's your body, your money, and your life. Never feel bad for questioning things.

margelina said...

This is so completely true! I can't tell you how many cases both personally and professionally that I know of where things were discovered because of the patient's insistance. Doctors are only human, too. They can't possibly know everything. Great post!!

Dora said...

This is one the smartest IF posts I've seen. I wish everyone on this ride could read this in the beginning. "How Doctors Think" is an incredible book. We must be educated consumers of our healthcare. My BFF's RE told her to stop reading things on the internet ... AND SHE DID!! Makes me think my head will explode just thinking about it. (He also told her women often don't get pg because they get up to pee after sex! IDIOT!)

Nikki said...

Dora - I cannot imagine an RE said that to your friend!! Where on earth did he get his degree?? Man!!!

Linda said...

You nailed it! I wished that I had listened to my gut and spoken up sooner, especially after throwing over $75K at my 1st RE here in FL. I find it hard to act on what my inner voice says. That is something I have to work on. So thank you for posting this. I will refer to your post the next time I am not feeling brave enough to speak up.

Chhandita said...

Oh 100%...I told my doc that it is time I get my tubes checked. so going for that HSG otherwise all i hear is "you are still young"... And I am also following my gut feeling and enquiring about adoption. Something tells me its time.

Chhandita said...

oh I just read Dora's post. My last docor actually said the same thing to me. During my first m/c. She actually saw the weak positive and said u r NOT pregnant and this test means nothing. WTF, i got postives in around 10 HPTs,a nd all of them are wrong? i said i checked ont the Internet and maybe its a chemical pregnancy, and she said and i quote her " all that stuff is nonsense, I have beena doctor for 20 years now" damn i feel sorry for her patients.

ok sorry for the rant lol

Anonymous said...

You are soo right. All I tell people is ask 'Why?'. After a failed IVF#1, I got my RE to redo the SIS that had revealed a polyp earlier. I wasn't convinced that it wasn't the cause of failure for the IVF. It turned out to be a false alarm when we learned that the polyp was gone, but it sure calmed me down.

The hard part sometimes is the fact that we pay the docs a heck of a lot of money to question every decision. I tend to wonder if I am entering the nagging territory with my RE and whether I should just step back and let him do his job. There is definitely a balance to be found here. But a good RE never tires of answering these questions. So, ask on.

Heavy heart said...

I really needed to read this right now. I am waiting for my RE appointment and I have always shied away from insisting on tests. It is my hubby who insists and I always feel embarassed when he does that. But slowly somewhere along the IF journey I became a believer. It is my life, my all consuming health issue and if the doc cannot give it the time of her day..too bad..no dice. Fortunately my GP till now has been a Godsend.Fingers crossed for the RE.

April said...

you have to be an advocate for yourself. i always ask my patients what they think the problem is, or if they have any other ideas or questions that they want to share. sometimes they are thinking things that i am not. :)

you have to go with your gut.

Dora said...

Nikki, one of the best/scariest "jokes" I've heard is:

What do you call a med student who graduates at the bottom of his/her class?


Darya said...

Love the post. I decided to convert my IVF today as well based mostly on my gut and wrote a bit about it on my blog. I also decided today that I will listen to it more, even if it seems irrational.

Just Me. said...

Oh gosh! This post is so timely cuz I've been thinking of things.. My first RE said we were ok after doing "tests" and told us to go back and have more sex and that we were young. We were only 30 then.

2nd RE worked once a week and we could hardly fix the next appointment with her! We did another rounds of testings and we decided that the whole process with her was too long drawn.

We moved interstate and I decided to seek out a 3rd RE. And after doing more tests again, he suspected that I may have endo. Never in my wildest dreams did I imagine I'd have more than just endo!!!! I had a whole load of baggage in my system which was why we couldn't conceive.

It took us 3 REs, 2.5years to get us where we are. You said it so right, to speak up if something's not right. I wish I had done it sooner.

Great post!

Kymberli said...

Another wonderful post with tons of great points. I hope that someone at a crossroads at the beginning of their journey finds this post to help guide them on their way.