My [REAL] experience with fertility preservation
Hi all! It’s been a hot minute sine I’ve blogged but I realized recently that with all the changes in my life the past few months and all the physical ups and downs where I may or may not regularly feel capable of doing live videos, I felt like I needed to make a blogging comeback :)
Sharing my journey with you on social media is something I have chosen for several reasons. First and foremost, I sincerely hope that sharing my experience helps someone else that may be going through something similar in the future but also, it’s somewhat cathartic for me to document my journey and receive support from my awesome online community! So thank you!!!
Many of you already know that in February 2019 I was diagnosed with Stage 1A nodular sclerosis Hodgkins lymphoma. that means I have 1 small tumor in my neck. To hear more about my treatment choices and mental preparation you can listen to my recent podcast episode below
Why Fertility Preservation?
Since ABVD (the type of chemotherapy offered for Hodgkins patients) can damage not only your heart and your lugs, but also your ovaries, young women run the risk of going through treatment and coming out infertile. The risk is mild, especially since I am receiving only 1/2 the national standard of treatment since my cancer has NOT spread and I have no symptoms ( thank you Jesus!). But still, at my age, if I damaged my ovaries I wouldn’t have that much time to do anything about it.
When Patrick and I got together I was pretty firm on the , “I’ve never wanted to birth children, so I hope you’re ok with that” front. But after 7 years of soulmate-ness :D and 6 years of marriage, I was softening to the idea of having a mini us. In fact, we were beginning to discuss the reality of even “giving it a go” this year. Just before I got diagnosed….
So when we found out that treatment could ruin our chances, I chose to get fertility preservation treatment which is basically the first half of IVF where we stimulate my ovaries and then harvest and freeze my eggs for what I call my future maybe babies.
What was the process like?
Expensive, painful, and….dare I say it….not worth it? ouch. I know that a lot of women out there live and breathe for the possibility of having children, but I haven’t and honestly, had I known what all this would feel like BEFORE I signed up, I don’t know if I would have followed through. However, everyone’s body is different and many women have had better experiences that I….So what’s it like?
Week 1 and Week 2
The first 2 weeks were easy. In fact, as I took my estrogen tablets (not recommended outside of this supervised and intentional process btw) I felt pretty good! If you have followed my story, I generally have hormones on the low end of the range, so increasing my estrogen felt pretty good to me. The only side effect I experienced was mild nausea that usually went away with a piece of gluten free toast.
Week 3 began the hormone shots - I used Gonal-F and Menopur which are luteinizing hormone and follicle stimulating hormone. Basically, the goal is to get your follicles as big as possible so that during the retrieval process you have harvested MATURE eggs that can then be used later. They will save all the eggs because they hope that as technology improves they may be able to mature the rest of the eggs some day as well.
ANYWAY!! normally, your body matures about ONE follicle and releases ONE egg/month during ovulation….my body was maturing 24 follicles, the largest of which were about .75-.8 inches!!!
As you can imagine, that meant that the ovaries began swelling. Even so, I wasn’t terribly uncomfortable during this phase. Every evening Patrick would give me two shots in my belly and sometimes they hurt and sometimes they didn’t, but it was never horrible and always went away fairly quickly.
During this week you also being the every other day blood draw and ultrasounds to monitor your your follicle growth and estrogen levels so they can adjust your doses as necessary.
The beginning of this week or potentially the end of week 3 you start adjusting your shots. You begin taking a third shot that keeps your body from ovulating because HELLO, after 3 weeks of growing these follicles and thousands of dollars later, the last thing you want is to release all these suckers before harvest day!
Your ultrasounds and blood monitoring continue until they determine which day (out of a 3 day range) your harvest will be. Then, 36 hours prior to your surgery time, you take a “trigger” shot. My harvest time was 7:30am on a Friday morning so my trigger shot was 7:30pm Wednesday. The day in between, no shots!
Finally, it was retrieval day. I didn’t know what to expect and was a bit nervous. I had an oops the morning of surgery which almost threw the whole thing off. I drank water!!! I had only written down no FOOD from midnight on, but apparently it was no food OR water….this is because you can spit it up a bit when you are put under for the procedure…which, apparently I did a little. But since everything is time sensitive and I agreed to the risks we proceeded.
When I woke up, I was NOT happy. I was in so much PAIN!!!! Normally, you wake up from something like this you are all loopy, and happily hopped up on some legit pain meds….but no, I was hurting the moment I came to consciousness.
On the plus side, we retrieved 23 eggs, which as I’ve done my research, seems to be a HIGH amount. I’m sort of getting the impression that since I went through this process as a preservation thing and not since I was infertile to begin with, that I had a stronger “output” and my body participated more easily….
Unfortunately, I think because the output was so high, the pain was also….I mean think about this…I had 23-24 eggs growing and the smallest of the follicles may be around .5 inches… in ovaries that are NORMALLY the size of your thumb…..thats a lot of stretching! Then to have a hollow needle shoved up your hooha to retrieve them all….well, inflammation followed.
Friday (April 12th) I was in excrutiating pain. The pain was transferring beyond my ovaries and into other parts of my body (called referred pain) like my back and I was convinced I was having kidney problems haha. Patrick ran to get the legit pain prescription and the first half of the day we were a bit behind the curve. I tried to take 2 and wait the full 4 hours, but then I ended up throwing up and in excruciating pain again before the next round sunk in and I fell back asleep. After that, I took smaller doses ( 1 tab instead of 2) but more frequently so that the pain medication stayed in my system. Once we figured that system out, I felt ok after about 2:30pm and the rest of the day was spent sleeping and watching Netflix.
I was told to expect a little bit of pain - like period pain the day of, and basically over the next 3 days start going back to normal. I think I had a stronger reaction than normal because day 1 was completely and utter misery. Day 2 and 3 were better only in the sense that the excruciating pain was gone and I didn’t have to live in bed.
Days 2-3 (Sat/Sun) there was extreme bloating all throughout my abdomen making it difficult to eat regular food ( am I hungry? and I not hungry? the pressure was messing everything up). In addition to the pressure and swelling in my abdomen, I had pain and aches all throughout my lower abdomen as well. Imagine wearing a belt of pain filled with rocks that shift around…that’s sort of what it felt like. Walking was doable, but also difficult. Getting up in to bed or folding forward in any way was uncomfortable. Going to the bathroom was a whole other story….squeezing your abdomen to urinate becomes an unpleasant experience and you will most likely become constipated because of all the hormones and pain medication so there’s an additional source of pressure and discomfort in the very area you don’t want it!
I would HIGHLY recommend getting ahead on water and a natural laxative like Senokot the day BEFORE surgery so you don’t get behind because those little things make a HUGE difference during recovery. Day 3 I even did a water enema in addition to the Senokot I had been using because I really needed that to be taken care of!!! Do this with caution however because you may still be highly inflamed and so monitor the amount of water you use….basically….don’t push it. Just use enough to get things flushed out and then maybe do it once or twice depending on how you are feeling.
Occasionally it’s also difficult to breath from all the swelling and pressure in your abdominal area so adjusting to take deep breathes and trying not to breath too far down into your diaphragm where all the inflammation is at, is a real consideration for a few days.
Day 4 - FINALLY I hit a turning points! I’m experience less bloating and the scale began to go down. I didn’t mention it earlier, but during the tail end of the hormone treatments and on through the egg retrieval process the scale began to creep up. It hit a high point a few days after the retrieval because of inflammation and water retention but for me, on day 4, it began to go back down…. yay! I’m hoping that means that the bloating, inflammation and the sale will continue to go down from here on out!
Today there is still bloating and a fanny pack of discomfort, but much more manageable than any of the days prior! I’m also back to eating normally since the past few days it was most gluten free bread or crackers bone broth, chocolate pudding etc… Yesterday (Sunday) we celebrated Keegans birthday and the birthday lunch was the most normal food/meal I had eaten all at once since the surgery.
As I mentioned, they successfully retrieved 23 eggs but i’m unsure how many were mature. I believe that if I need to pursue the second half of this process in the future the worst is definitely behind me. Is it worth it? OY. Like I said, I don’t know. There’s nothing I can do about it now, but I certainly didn’t expect to be an invalid for 3-4 days post retrieval and experience the level of discomfort I have. Personally, it’s a little frustrating because I know that chemo will be it’s own process and may bring with it a whole new set of pain and side effects…so had I know this would be so painful - would I have chosen it? Not sure. But I did, and now we have a safety net which is a good thing.
I wanted to share this because when I was researching what to expect there aren't a lot of stories sharing the after care experience being as intense as it was for me. Perhaps I’m a special flower that just really experienced the max levels of pain and thats unusual, but if it’s NOT, and you choose to go this route, I want you to be fully prepared mentally!!! Because if this IS your dream, it’s only a few days and you can definitely do it :)
I always like to share anything I can through my experiences to help you avoid mistakes I make and and/or use tools that I used that did help!! Here are some tips if YOU are considering going through this process.
1) Definitely eat a healthy diet, there was one week where I really craved more carbs and sugar but other than that I stuck to my usual nutrition! Focus on veggies water, and healthy fats to support your fertility process!
2) Are you on the fence about fertility treatment? there are lots of other things too try first including changing your diet and lifestyle! In fact, several of my personal clients have “accidentally” become pregnant after working together when previously it had been more difficult. Personally, had cancer not forced my hand, I wouldn’t have chosen this for myself. I spent several years working on my hormones and balancing them naturally! I even eliminated my PMS completely and regulated my cycled to 28 days! There are lots and lots and lots of books and resources out there so I would’t recommend IVF as your FIRST step…but sometimes it’s a necessary step so don’t let yourself feel guilty if it IS something you need to go through either!
3) Vitamins. Things like curcumin, fish oil, multi vitamin and protbiotics are beneficial almost always, but certainly when you are trying to keep your inflammation low and your digestion regular!! I was really happy that I didn’t experience a lot of discomfort BEFORE the procedure. They kept indicating that I would, but I didn’t!
4) Definitely over hydrate as soon as you begin to take the medicines. When I started taking the shots I didn’t realize you could get dehydrated and I got behind at first. Staying up on your water intake REALLY helps - be proactive!!!
5) Be aware of the constipation reality. It’s not helpful and it’s not fun. Consider starting the day before retrieval with a natural laxative and get as much water in you as possible prior to the surgery cut off/ fasting time!!
6) Regardless of how natural or healthy you are, do NOT shy away from the real pain meds if you need them. They exist for times like this and will help you get through the first 24-48 hours!!!!
7) Remember- you CAN do this, Your body is designed to do amazing things, and it will recover and heal, and you can always assist it in detoxing this process as well. Remember to build up a really great support team behind you - that makes the BIGGEST difference!!!
8) Speaking of support teams - get a family member or friend to make dinner the night of the surgery. You may be drinking liquids and downing bone broth, but it’s extra helpful for your family to have some extra food that you don’t have to stress about!!!
9) And finally, when you ARE taking lots of NSAIDS or pain RXs, consider taking some supplements to protect your tummy and gut lining, I, again, got a little behind on this day 1 and could start to tell that my tummy wasn’t happy about it. Since then I’ve been careful abbot taking GI Response which is a poster supplement you blend with water that contains L Glutamin which repairs your epithelial cells, and skipper elm, marshmallow root etc that help soothe and heal as well.