March has become one of my favorite months because the Endo community is finally starting to have ways of raising awareness for this invisible disease that we live with everyday. Because people can’t SEE what we are dealing with, most of them will write us off as over exaggerating our pain. Some days are worse than others. There are days I can move through the pain, it is there, but I have learned to deal with it. And then there are days where I am stuck in bed, in the fetal position, heating pad cranked to high, waiting for a break in the debilitating pain that came that day.
While Endo can be controlled (for the most part) by changing our diets, there are still many other factors that we have to figure out on our own that cause flare ups. Unfortunately, finding someone to help us and take us seriously, or someone who knows anything about this disease is a hard task to accomplish (but not impossible).
I was diagnosed about 8 years ago, although I lived with this for much longer than that. I still remember when I went in for my follow-up appointment after my surgery. The doctor sat me down, told me I had Endo, and told me there was nothing I could do. When I was done having kids I could come back in and get my uterus and ovaries removed and then I would not have it anymore. I believed him.
It took me 3 years before I found out that my diet choices were a HUGE contributing factor in my pain. Before then, I spent about 75% of my days in horrid pain. I even had 3 weeks were I couldn’t move off of my floor because of a flare up. Being a single mom at that time, having to take 3 weeks off of work because I couldn’t move was not an ideal situation. Once I started researching the Endo diet and cutting out some of the items that were deemed not okay, I noticed a huge difference in the amount of pain and how often it was happening. I was astonished but it still took me until recently to really take the diet seriously.
Why? Because every time I went to see a doctor I was told some new non-truth about this disease and thought that there was no way I would ever have a normal life. So, if I was going to be in chronic debilitating pain anyway, I may as well enjoy what I eat, right? No, but no one told me any different, so I believed that for years.
A few years ago, I got serious into working out. I was lifting weights 5 to 6 times a week and I was loving it. I never felt so good. I was eating right, my body was in amazing shape, and I rarely had pain days. So, once again, I had learned something on my own, by accident, that was very beneficial to my health and my Endo. Unfortunately, my second pregnancy was very hard due to my Endo, and I was unable to continue working out because I was in so much pain all the time from my uterus stretching with all the scar tissue and lesions on it. So, I am back at the beginning, but I do intend on getting there again.
So, why am I telling you all of this? I want to share a very small part of my journey with Endometriosis to help raise awareness. We all have a voice and most times we are not heard when we need to be. I also want to share some very valuable resources in this post so that I can help anyone who is struggling to find out where to start when it comes to healing themselves and getting back to a “normal” life.
I have read A LOT of books regarding Endo. But, here are some of my favorite that gave me the best information and a place to start.
- Heal Endometriosis Naturally by Wendy K. Laidlaw – This book was the first that I ever read. It helped to give me a different outlook on this disease and how to go about healing myself.
- The Subtle Art of Not Giving a F*ck by Mark Manson – While this one is not Endo related, I wanted to include it as it is a fantastic read and helps to change your mindset and the way we look at our situations that arise.
- You Can Heal Your Life by Louise Hay – This one is more on doing the mental work to heal your ailments. According to Louise, we manifest our illnesses by our thoughts. For Endo she says that possible causes are “insecurity, disappointment and frustration. Replacing self-love with sugar. Blamers.” I know when I read that, it struck a chord or two.
- The Endometriosis Health and Diet Program by Dr. Andrew Cook & Danielle Cook – This is the book I am currently reading. It goes in to great detail about why Endo reacts to certain things. It talks about the diet and WHY each food may affect someone. It talks about our hormones and what role they play in the disease. It gives exercises that are beneficial as well as a whole diet plan that will detox, and rebuild your healthy gut bacteria and maintain a healthy lifestyle that will aid in your healing process. Highly recommend this one.
While I won’t give specific exercises to do because we are all different and I don’t want to tell you to do something that may cause pain, I do want to talk about how beneficial this is to women dealing with Endo. Exercise is already highly beneficial to everyone no matter who you are, but when you are dealing with Endo, it can actually help more than most women will admit.
When you are starting out, you need to take it easy. I know when I first started, if I pushed myself too hard, it meant I was down for the count for at least a week. When you are fighting back against this disease, you don’t have time to take a week off to rest and heal. So start small; light weights, light cardio, and body weight exercises. When I am in too much pain to do a good workout, I will hop on the elliptical or treadmill and walk slowly for about 20 minutes. I almost always feel a bit better, and I am always proud that I did it, even if it wasn’t much. I know sometimes I have pain that goes away when I move, and sometime it gets worse. So, pay attention to your body and don’t overdo it.
As you start to feel better, or you are having a good day, use those to increase your weight, or walk/jog/run longer. When you are feeling good, always try to use those days to push yourself as much as you feel comfortable. But remember, if it hurts, stop what you are doing. You never want to cause more pain, because that is only going to set you back.
Another great option for recovery days, or when you are in too much pain to workout is yoga! It has been a lifesaver for me when I can’t do much else, or I’m just not feeling the workout. It still moves my body, gives me an active recovery day, relaxes my muscles and relaxes my mind. As we all know (or should) stress is a huge factor in Endo flare ups. Yoga is a great way to let go of the stress and reset.
Diet plays a huge role in our well-being as I said above. While there are many resources and blogs out there that talk about the diet, they are all very general. No two women are the same, and not all the foods that put me in pain will affect you the same way or at all. I suggest reading The Endometriosis Health and Diet Plan that I talked about in the book section. It will help you to understand so much more about the disease and get you on the path to finding out your trigger foods.
I also suggest the Facebook group Endometriosis Nutrition and Holistic Support. They have some fantastic information in there and will give you another great starting point on eliminating foods and finding out what affects you.
There is so much information out there and it can be hard to know what is good and what is just a bunch of fluff. All I can say is that you need to fight for yourself. If you get a doctor that tells you there is nothing to be done, go find another. Never give up on yourself and research everything! Unfortunately, we almost always know more than any doctor, even the specialists. So go with your gut, if something doesn’t sit well with you, ask questions, and do more research.
I hope that this helps even a few people. I know I could have used more resources like this when I was learning what to do and how to handle the disease.
Is there any other amazing resources out there that have helped you? Leave a comment and share the knowledge with our fellow Endo Sisters!
Until next time.