Hey guys! In honor of this week being one year out from starting my fertility preservation, I thought I’d share a bit about my experience, as well as some tips/things to expect when going through this. Of course, the experience is different for everyone, but hopefully this will be helpful in a general sense!
While I felt pressed for time when I was first diagnosed, I did take the opportunity to meet with two separate reproductive endocrinologists (read: fertility docs), and I am so glad that I did! The first physician I met was so kind, but I left that appointment feeling very limited in my options, and frustrated by the seemingly inflexible timeline given my need to start chemo ASAP. When I had my oncology second opinion, they set me up with a fertility physician that they commonly worked with, and she was INCREDIBLE. She assured me that I had options, and that I had time to actually consider those options. She even assured me and my husband that they could help us apply for financial assistance to go through the process, in the event that my insurance didn’t cover all the necessary medications and procedures (spoiler alert – they didn’t).
In Illinois, insurance companies are technically required to cover treatment for infertility, but unfortunately that didn’t stop them from fighting us on it every step of the way. In the end, I had some coverage, but had to apply for assistance from the LIVESTRONG Foundation. They were amazing, and helped us quickly get all the medications and supplies needed to start the process of freezing my eggs.
Preparing to retrieve and freeze eggs is exhausting and honestly seems like a full time job. Ideally, you start at a certain point in your cycle, and based on your blood work, the doctor will tell you which medications and how much of them to start with. Each of these medications is injected into your stomach or your buttocks. You go every 1-3 days for blood work and a transvaginal ultrasound, and they will then adjust your medications for that evening accordingly. Yes – you end up having to go every. single. day. This is where it really got tough for me. I was emotional from the medications I had to inject, tired of sticking myself ~3 times a night, trying to work full time, overwhelmed with having to go in for the testing every day, and dealing with all of this under a very strict timeline of knowing I needed to start chemo soon. There were honestly a few moments where I questioned whether or not this was all worth it.
Finally, I got the okay to give myself the “trigger” injection – this is the medication that prepares your body to mature the eggs at the right timing for the medical team to retrieve them. 2 days later I was in to have my eggs retrieved. This was done in an outpatient procedure center, and I was put under twilight sedation (not fully under, but I don’t remember anything after laying on the procedure table and making a bad joke about my eggs going sunny side up hahaha). They were able to get 10 eggs, but only 5 were mature enough to be frozen. Obviously, this is better than nothing, but I’ll never forget when the nurse from the clinic called me to ask if I could do another round of retrieval… I sternly let her know that I could not, since I would be starting chemo the following week. It was tough to feel like I’d gone through this whole lengthy, uncomfortable, stressful process, just to feel like I hadn’t done well enough. Of course, it was completely out of my control, but it was still upsetting.
Fertility preservation is a wonderful option, but it isn’t without its risks. It can also be a very emotional process, particularly when on top of the fact that you are already dealing with a new cancer diagnosis. Even if you aren’t dealing with cancer, treatment for infertility in general can be so difficult, and I certainly empathize with anyone going through it.
Some tips to consider:
- Contact your insurance company ASAP, and find out what exactly is covered (which physicians, procedures, medications, etc), AND if there is any testing or extra paperwork you or your physician will need to do to make sure it is covered. For example, my insurance company required labs from Day 3 of my cycle, and some ridiculous test to make sure my tubes weren’t blocked. Also as an FYI, the annual cost to store those frozen eggs/embryos is often NOT covered by insurance.
- Look into the LIVESTRONG Foundation if you think you will need any sort of financial assistance with this process. They are so helpful and make things much less stressful. Find out if your doctor has worked with them before, OR go to the LIVESTRONG Foundation website, and they have a search function where you can find fertility clinics that they are contracted with. They also have a “navigator” program, where you can get connected with someone who will help you literally navigate your new diagnosis and all the things you need to do.
- Be prepared to be flexible with your work/school schedule. I tried to always get myself scheduled for the first appointment of the day so that I wouldn’t have to take a lot of sick time, but it wasn’t always possible. Recognize that doing this is part of you taking care of your future, and you kind of have to go all in on it to make it worth the effort.
- Have your partner, a friend, or a family member help you with the injections. It can help things feel a bit less isolating, and can ease anxiety if you are fearful around needles, etc.
- On the day of your egg retrieval, wear cozy clothes (post-retrieval bloating is the real deal), and make sure you have someone to drive you home. Follow all the physician’s post-procedure instructions – as with any medical procedure, there are side effects and risks, and you want to make sure you heal well.
- Lastly, don’t be caught off guard if the retrieval isn’t a wild success. If it is, great! If it’s not, be assured that you are not alone, and that many of us have felt the same way. All hope is not lost.
Were you guys given the option to do fertility preservation prior to beginning your treatment? If so, did you do it? Let me know your stories and your thoughts! Do you have any other tips for other women going through this process?