Top 5 Questions To Ask Before Starting IVF With A Chronic Illness To Make It As Painless As Possible

by Katarina Zulak

IVF is a long and invasive medical intervention, which can leave you wondering, “Can I really get through this with fibromyalgia?” That was my primary concern when I started the process in 2020.

The answer is likely yes, with certain accommodations. My doctor helped to facilitate the process to make it easier for me in some ways. I also had to learn the hard way that other things could have been done differently. These are a list of the questions I wish I had known to ask before starting IVF.

Fibromyalgia does not directly affect fertility. However, many women with fibro may also have endometriosis, which is a ‘common overlapping condition’, and endometriosis is a cause of infertility. Research also suggests that the frequency of PCOS, another infertility condition, may also increase in women with fibromyalgia.

Regardless of the cause, women with fibromyalgia and infertility might consider trying IVF at the recommendation of their doctor. IVF, or in-vitro fertilization, is defined as “A procedure in which eggs are extracted from a woman’s ovary and mixed with sperm in a lab dish to allow fertilization. The resulting embryos are placed back into the woman’s uterus in hopes of establishing a pregnancy.”The odds are in your favour, with a 55% success rate for women under 35 after going one egg retrieval, 41% for women 35-37, and 28% for women 38-40. This is so much better than the 0% chance you feel you have after trying for so long on your own.

 Before we get to the questions, we need to define a few terms. All IVF procedures involve the following steps:

  • Ovarian Hyperstimulation (a.k.a. Making Eggs):
    The production of multiple eggs by giving medications. Ovaries normally produce only one mature egg each month and fertility medications will make more than one egg. The process is monitored using ultrasounds.
  • Egg Retrieval:
    A procedure used to collect the eggs from a woman’s ovary. The procedure is performed under anaesthesia or sedation. A needle is passed under ultrasound guidance into the ovary. The eggs are collected and given to the embryologist.
  • Embryo Transfer:
    The procedure where the embryos are placed into the uterus with the intent to make a pregnancy.

Choosing an IVF Protocol: The Long and the Short of It

There are two different protocols when it comes to ovarian hyperstimulation, or, stimulating the development of multiple eggs using fertility medications. These two protocols are called the “Short Protocol” and the “Long Protocol”. The main differences between the two are the length of time they take, and the type of fertility medications they use. Your doctor will decide between them based on which one is most appropriate for your infertility condition.

Ask your doctor: “What is the shortest, most effective protocol for me, so I can minimize the toll this takes on my body?”

The Long Protocol (or “Long Agonist” Protocol) lasts 6 or more weeks. This protocol is at least two weeks longer because it starts the menstrual cycle before your egg retrieval cycle begins. During this time, you take a fertility medication like lupron to “down-regulate” your ovaries (put simply, to turn off ovaries before stimulating them, which gives the doctor more control over the process).

Long IVF protocols require more days of medication and more injections than the Short Protocol. Since your hormones are being down-regulated over more days, you’re more likely to have side effects over a longer period of time. However, there is discretion within the long protocol on the duration of time you need to take lupron for. Your doctor can work with you to minimize whichever protocol you are on, so as to mitigate the toll it takes on your body.

The Short Protocol (or “Antagonist” Protocol) usually lasts about 4 weeks, starting with Day 1 of your period and ending with a pregnancy test. Down-regulation takes place at the same time as egg hyperstimulation, so the overall process is shorter. Fertility medications usually start in the first few days of the egg retrieval cycle. For me, the short protocol worked both in terms of my fertility issues, and in terms of managing my chronic illness by minimizing the amount of time I spent on IVF medications.

IVF Medication Dosages

The key differentiation between these protocols is the type of medication you are prescribed. Yup, these are the ones you have to inject (more on that below). My doctor explained to me that there was a range in the dosage level she could prescribe for the medications I was injecting. In order to minimize the side effects, she recommended the lowest effective dose.

Ask your doctor: “What is the dosage range you would consider for my IVF medications? What is the minimum effective dose that you think would produce eggs, but minimize side effects?”

 I was fortunate that my doctor felt confident we would make healthy embryos at that lower dosage. The trade-off was that a higher dose would likely result in more embryos…and more side effects. I was torn. My husband asked me how many embryo transfers (rounds of IVF) I felt that I was capable of doing. As much as I wanted a baby, I had to acknowledge 3-4 embryo transfers was the upper limit that I could subject myself to. So, we decided to go with the minimum effective dose, and we got 3 embryos.

You may need to inject yourself for between 7-14 days. Ouch! Actually the needle isn’t that painful, but the medication may sting, depending one what it is. However, there are a few steps you can take to minimize the pain. Try icing the area of your abdomen for 5-7 minutes before administering the injections.  Alternatively, ask your doctor about an over the counter numbing agent.

Fertility Monitoring:

During the egg retrieval cycle, the clinic will ask you to come in multiple times to draw blood, in order to check hormone levels, and do ultrasounds to see how your egg follicles are progressing. These are important appointments! However, you may not need to go in for the 8-10 visits they ordinarily suggest.

Ask “Would it be possible to limit my fertility monitoring appointments, to accommodate my illness?”

My doctor put a note in my file to limit the visits, so we did what was essential for testing and imaging, but not anything else. I didn’t go in as frequently, for example, until we were closer to triggering ovulation. I went in about 5-6 times. This was such a helpful accommodation, so I encourage you to ask about it.

Picking Up Your Medications:

Your doctor may vary your IVF medication dose level based on your test or imaging results during the cycle, and they will determine when to trigger ovulation based on your results. 

When this happened to me, I found out that the only place I could get the ovulation trigger medication was at the clinic. It was rare enough that regular pharmacies didn’t carry it, and the ones that did were out of stock. So this meant I commuted for 1 hour to get to my appointment in the early morning, went home to wait for my blood test results, and then they wanted me to come back to the clinic to pick up the new medication, and go home again. This would have required 4 hours of travel time in one day! Definitely not chronic illness friendly. After a many conversations with the staff, I convinced them to  give me the medication before I left after my ultrasound and blood work, but I promised not use it unless they told me to later in the day, after the blood work results came back.

Ask them ahead of time where you can pick up your prescriptions, whether you need to arrange for two visits in one day to the clinic in the event you might need a to pick up a new prescription, or if someone else could pick them up on your behalf later in the day. Alternatively, they (or you) can call ahead to check on the stock at your local pharmacy. All of this requires them to tell you about possible scenarios ahead of time.

Ask: “Where and when do I pick up my prescriptions? Is there a scenario where I might have to come in twice in one day, such as to pick up a prescription after my test results come back? What accommodations can we put in place to help me plan ahead, such as a notification that this might happen ahead of time?”

Fresh vs Frozen Embryo Transfers:

If there’s one thing that I would change if I could go back and do it over again, it’s that I would freeze all of my embryos after the egg retrieval, rather than going ahead and doing a fresh transfer immediately after the egg retrieval.

Ask: “What are the pros and cons of freezing all my embroys versus doing a fresh transfer? Would it be easier on my body to freeze them and rest, if possible, versus doing a fresh transfer?”

I chose to do the fresh transfer because the doctor said they have a slightly higher level of success compared to frozen embryo transfers. However, my poor body was so worn out from the month of injecting medications and going through with the egg retrieval, that the transfer was too much. They put me on almost 2 weeks of progesterone and did the transfer 5 days after the egg retrieval. It was stressful and invasive and put me into a flare. I wish that I had said no, taken a couple of months to rest and recuperate, and then done a frozen embryo transfer. That would be pacing, IVF chronic illness style. However, if you only have 1 or 2 embryos and want to maximize your chances, or the process hasn’t worn you out too much, then a fresh transfer might work really well for you!

Ultimately, there is no one right way to do IVF. It will be challenging no matter what, but with accommodations, it can be made easier. As for me, my first round unfortunately didn’t work. We were just beginning our second round when I found out I was pregnant. Life is funny that way sometimes! I hope some of this information helps out others with fibro who might be considering IVF, because I believe it is possible to get through the process, and it is worth it for the dream of starting your family.