Friday, May 29, 2009

Hindsight

We had a few things going against us when we first learned I had PCOS. I have mentioned before that if I could re-do our ART experience, I would do things completely different. Unfortunately, I was only 26 and naive to ART. Our family and friends, as far as we knew, had no experience with ART, therefore we did not have anyone to give us (wanted) advice. In 2004 I didn't know about message boards and I do not believe blogging was anywhere near as popular as it is today.
In summary, we received the diagnosis of PCOS and MFI but had no outside support or advice. So we trusted our doctors opinions and went directly on to infertility care.

Maybe the following will help someone else as they ponder their diagnosis of infertility and how to proceed:

1. Get a second opinion right away. If your OB/GYN diagnoses you, ask to get a second opinion. When you are referred to an infertility doctor aka Reproductive Endocrinologist, visit them and also get a second opinion from a different doctor (preferrably at a different practice or clinic). With both RE's go over an action plan for your diagnosis. If you have unexplained infertility, still make an action plan so that you understand all the steps you will take up to a certain point to try and get pregnant. Find out your options. Don't let the doctor dismiss your diagnosis or unexplained infertility as an easy fix due to age, etc. This is very important to you and sometimes they need reminding of how difficult it is to go through infertility.

2. Your RE should be available to speak with you over the phone. If you are only able to speak with the nurses, it is your right to ask to speak with the doctor. Often times the nurses will not answer questions and say they will call you back after speaking with the doctor. Things become less confusing if you are to speak to the doctor yourself. Write questions down ahead of time. Make sure you feel comfortable about your treatments.

3. Don't rush into treatments. Take time to think about your action plan and soak in the information. BE INFORMED. As a patient you need to advocate for yourself. You cannot effectively do this without being educated. Go on-line, read books, get on message boards- ASK QUESTIONS. Ask questions of others and ask your doctor tons of questions. That is their job. Make them work for you.

4. When you start treatment such as taking Chlo.mid and you have questions for the nurse or doctor, don't be afraid to call them three times a day. That is their job.

5. Medications- Generally with IUI's the medication portion is less confusing. If you undergo in vitro fertilization, there are many different types of medications to take at different points in the cycle. If you need an extra consult on when and how to use each medication, ask for it. Label the packages if necessary. Do anything to make the process less confusing. Some doctors give you a chart. If that doesn't work for you, make your own guideline or chart to follow as you switch medications and have a timeline until your egg retrieval.

6. Injectables- Ask if you doctor or clinic will do the first injections for you (especially if they are intramuscular which means that the needles are larger and more difficult to inject). For those of us who are not RN's, MD's or in the medical field have never given a shot, mixed a medications for the vial or used very large needles on ourselves or others. For me, this portion of treatment was treated lightly and we were not given enough education on how to administer the shots. Luckily my mother is an RN and Nurse Practitioner and we had guidance.

7. With multiple failed cycles or pregnancy loss including miscarriage and/or ectopic pregnancy, this is a time to collect information about your body and why this loss may have happened. It could be an informative way to receive another diagnosis, enhancing your treatment and chance of conceiving. ASK QUESTIONS.

8. Take a break. I know that when you are in the midst of TTC, sometimes the only way to cope with a loss or BFN is to plan for the next procedure. But, I recommend taking a mental and physical break at some point. It was very beneficial for me, and it helped me to feel healthier in body and spirit. Remember it is okay to take a break between cycles. In fact it can change your perspective and give you time to reevaluate if necessary. We all know that taking a vacation does not cure infertility, but taking some time for yourself or to reconnect with your spouse can make coping with the stress easier.

9 comments:

Straubles said...

Great advice especially regarding the injectables. Thankfully our clinic required that we take an injection class with the nurse and keep a schedule on the fridge, but it STILL was confusing! i finally started setting the alarm on my phone to help keep track of the daily regiment of injections and pills. that was a HUGE help for us!!!

Missy said...

Thanks for this great advice!

Barefoot said...

All great advice...I've learned so much about how to be a better advocate for myself and my medical needs through the IF process. If only we could truly communicate with our younger selves!

Kristin said...

Really, really great advice.

Country Girl said...

Great advice. I wish I'd had someone to tell me what I needed to do. We started TTC in 1999 and I had issues from the getgo with endo, cysts, septate uterus you name it. After 5 years of ttc we adopted our son in 2004 and I finally had to have a complete hysterectomy in March of 2009. I feel better than I have in years. I just wonder if things would have turned out different if I'd been more "educated" on infertility. Kudos to you for putting it out there.

tireegal68 said...

great advice. I am with you on the shots - I am going to be doing IM progesterone and my clinic told me to watch a video! My DP is going to be out of town the first time I have to do it and i am really scared about it. Next time I go to the clinic on Weds I am going to ask my nurse to show me.
It's so true about doctors not talking on the phone - they get the nurses to do all that!

A Mom in Jacksonville, FL said...

What a super list. Advocating for yourself is a must!

Clare said...

Great list. I have found that a TTC break has worked wonders for my mental health and our relationship. Sex is finally fun again ;)

Angie said...

That's great advice.

This is slightly off topic, but I wanted to let you know that I'm reading the book you suggested for my blog this coming Saturday.

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