I finished this just in time for the conclusion of Endometriosis Awareness Month (March)! This post is based solely on my personal experiences. You should talk to your doctor first about medications, supplements, and endometriosis treatment plans.
After IVF1 in July 2012, I was a depressed mess. My belly was swollen and looking very odd (read: squishy) after all the fertility drugs. I felt sluggish and was having frequent stomachaches. I am also convinced that my endometriosis worsened due to all the estrogen I pumped into my body. Despite my hot mess status, I found myself wishing we could jump right back into pursuing more treatment. I knew that wouldn't happen, mostly because of my mental status and finances, but I was so desperate to get that positive pregnancy test. When you are going through fertility treatments and receiving negative results, you tend to get a tad obsessive about "next steps". It feels like if you don't have a plan B, C, and D, you will fall off the edge of the Earth. Or at least that's how it felt for me.
So when our fertility doctor suggested I go on birth control indefinitely, I was crushed. I wanted to have the chance to try naturally after IVF. It made me really sad and anxious to think we would just be "wasting time" with me on the pill. However, I listened to my doctor and I had a moment of clarity. It was highly unlikely that we would get pregnant naturally. We had tried that method before, and unfortunately I am likely not in that special group of endo women that can achieve a natural pregnancy. I had to let go of that mindset for the time being. It doesn't mean it couldn't happen. Miracles happen every day (as we know), but for now, I had to give my poor body a break and re-group.
The Birth Control Pill & Lupron Depot
Being on the pill for the past eight months has been an overall positive experience. I know the pill is basically only a temporary (if any) fix for endometriosis. However, after IVF, it seems to have been helpful for me. No nightmare periods. Minimal hormonal mood swings. Minimal endometriosis pain. My body needed this after all the IVF drugs. The best benefit of all? My endometrioma cysts are smaller. It has taken almost a year, but they are shrinking. Part of me hates to put that in writing for fear that they will hear me and start growing again, but there it is. I had an ultrasound last week, and it seems they are smaller. I believe this is due to the pill, and also my commitment to a healthier diet.
On the insistence of my doctor, this Friday I start Lupron Depot for a month maybe two. This freaks me out to no end, but I am following the advice of my doctor. I am going to suck it up and put on my big girl panties. More on Lupron to come...
There is so much literature out there these days that talks about how diet helps your fertility and can reduce your endometriosis. I have spent hours reading about it. What has been frustrating is the fact that a lot of the articles and websites aren't based on much (if any) scientific evidence. Or if they are, they are based on one random study done in a foreign country and you have no idea how they got the results they did. Then there are the fertility-related forums and chat boards that mean well, but are basically sharing old wives' tale type advice. "I ate 15 oranges a day during my IVF cycle, and now I'm 5 months pregnant!" The next day I'm at the grocery store stock piling oranges. But then the day after that I read some Chinese medicine article that tells me to avoid oranges like the plague. It is VERY confusing.
For women with endometriosis, it gets even trickier. Endometriosis comes with its own set of dietary restrictions and special considerations. However, nothing is really a sure thing. Here is what I am doing to work on my diet. I started with the Body Ecology Diet. I bought the book on my Nook and read through it rather quickly. I found a lot of helpful tips, and learned about how essential it is to have a healthy digestive tract. The diet is very strict and involves a heavy level of commitment. So far, I have not been able to commit to all of its tenets, however, I have found that loosely following the diet has been helpful. L has been participating in all this dietary experiment. Naturally, he has lost fifteen pounds. I have lost none. I don't really care, because I am not in it to lose weight. I'm thrilled for him though!
I have dozens of links about lifestyle changes for endometriosis bookmarked on my laptop, but the one that is the most clear and basic is this link on endometriosis from the University of Maryland Medical Center's Complementary Medicine department. The information is concise and the "Nutrition and Supplements" section is packed with a wealth of knowledge. So far, I am taking prenatal vitamins religiously, trying to up my Vitamin C in the form of Emergen-C as often as I remember, and I decided to try out an antioxidant, natural plant extract called pycnogenol. Again, even with some scientific evidence, there still isn't a clear link between taking the supplement and suppressing endometriosis. But, I liked what I read, and decided to give it a try. I have been taking it for about two months. My fertility doctor recommended CoQ10. I tried it, and for some reason, it upset my stomach. However, now that IVF2 is in sight, I may just take one for the team and try it again. I have also been reading about evening primrose oil, turmeric, and chasteberry. There comes a point where you need to draw the line with supplements. It can get pricey, and again, I'll harp on the lack of scientific evidence to support their claims of effectiveness. I am currently attempting to figure out how many pills I really want/need to take each day.
Pinterest has been wonderful for finding recipes and food experimentation. My "Food" board on Pinterest is a mix of healthy and some not so healthy recipes. However, we have tried out most of the healthy recipes and miraculously haven't hated any of them! Check out my Food board here. Please let me know if you have any questions. I would love to write a post about how we have finally found a way to cook in our house. We'll see if I ever get around to it. :)
I have tried to be pretty vigilant about avoiding products made with BPA. I used to drink SO much bottled water. Even when all of the BPA studies came out on baby bottles and plastic water bottles, I continued to drink from them, because it was convenient at the time. It may not make a huge difference, but I finally kicked the bottled water to the curb. I bought myself a Klean Kanteen, and I have never looked back.
I used to wear tampons from time to time. I have stopped that. Tampons are terrible for my endometriosis pain. I read up on the use of chlorine in feminine hygiene products. That kinda freaked me out, because as an endo girl, I use maxi pads like they are going out of style. I looked into reusable cloth pads (yes, they exist.) I decided I didn't want to go that extreme, so I settled on these Chlorine Free Ultra Thin pads from Seventh Generation. I love them. I buy them at Whole Foods, and they are a little pricier than my old Stayfree with Wings pads, but I feel the extra money is worth it. I don't like the idea of all those chemicals chillin' with my vagina. Actually, looking into what your feminine hygiene products are made of is probably something all women should look into, not just those of us with endometriosis.
On most days, I try to devote a little time (30 minutes or less. Usually less.) to meditation. I did four months of intensive acupuncture (one hour long appointments two to three times per week) and didn't really feel like it helped me. I want to put that out there, because almost everything I read about increasing your fertility advocates for acupuncture. It may not be for everyone. It also may not be the magic pregnancy solution. My evidence for this claim: I did not get pregnant. Also, my endometriosis actually got worse following my treatments. I developed that humongous endometrioma and had to be rushed to the ER. Maybe it was a coincidence? I don't know. My acupuncturist was also extremely expensive and not covered by insurance. Since moving on from acupuncture, I have found that meditation has been of great benefit. My anxiety has been somewhat controllable, and my energy levels are improving. I have tried to be as consistent as possible, however, some days, I just forget to do it. I do my best to forgive myself, and look forward to another day. I have found some great meditation music on YouTube, and haven't spent a dime on my meditation efforts. Just yesterday I started Oprah and Deepak's 21-Day Meditation Challenge. I am really excited for this opportunity, and hope to write another post about it when I finish the program.
As I mentioned above, I didn't think I needed a break after IVF. This is because I was delusional. I have needed these past eight months very badly. I took a mental break from infertility. I set goals. I worked hard. I gave myself time to heal. I made peace with the fact that my whole "motherhood by age 30" idea was not going to happen. I had to let that go. I accepted the fact that if I ever get to be someone's mom (whether at 30, 40, or 50) I would be so incredibly lucky. It is hard to rationalize a broken heart and let go of lost dreams, but I think I have done the best I possibly can. I try to connect daily with my gratitude for even having the chance to pursue another round of IVF. As much as it scares me to have to go through this intense process again, to me, it is worth every penny, and (quite literally) my blood, sweat, and tears. Having this down time was such an essential part of coming to these realizations and making peace with them.
Anyone else want to share tips, experiences, comments? Feel free!