I made it! Yesterday marked one year from surgery day when Dr. Redwine in beautiful Bend, Oregon cut all that invasive stage IV Endometriosis out of my central bladder, right broad ligament, left broad ligament, pelvic floor, right uterosacral ligament, left uterosacral ligament, cul-de-sac, and performed a pre-sacral neurectomy! I feel awesome when I look back on the whole experience a year later!
I learned some valuable lessons since being treated with Dr. Redwine:
1. Don’t just be satisfied with Dr.’s telling you there’s nothing you can do when you know deep down there is something that can be done.
2. Don’t sign up for medical course of action without researching the effects and long term effects. I’m still, almost five years later, dealing with the ravages of the hideous drug Lupron therapy and feel horrible for the women who have given up their fertility at the advice of ill-informed Dr.’s when they didn’t have to.
3. Research the heck out of your disease so you know what your body is doing and the latest research that may be able to get you answers.
4. Find the best Dr. in the world to treat you…no matter how much money. It will give you your life back….and no dollar amount should stop you from that.
5. Realize that you have a disease and that you’re really sick. I went through a lot of counseling just to come to the point where I could give myself enough grace in realizing that there really was something very wrong with me. For so long I got mad at myself for not being able to do normal things because I was in so much pain. It wasn’t until after surgery when the pain was finally gone that I full understood just how sick I was and how limited my life had become at the cost of Endometriosis gluing my organs together for so long. It’s ok to be less than perfect when dealing with any disease and it’s ok to advocate for yourself by getting the help (medical, and emotional) that you need.
6. Surround yourself with a community of people who understand. Luckily, my family was extremely supportive. But even they had their limitations in how they could empathize with me. Once I found a core community of girls my age going through the same nightmare I was, things got a lot easier to deal with because I knew I wasn’t alone. We shared in our fears of surgery being successful or not, being able to conceive or not, then agony of not being able to be a wife to our husbands, and spent many full days on the computer talking to eachother from our bed’s in our drugged up fog. Now many of us are still on contact sharing how great we’re doing on the other side of Endo.
7. Thank God for your amazing husband. TJ was such a trooper through the whole thing. My Endo really took off right after we got married. It was a spiral downward as we were not able to do “honeymooner” things with eachother on account of the pain it caused. He had to stay in a job he hated just so we could get amazing healthcare that would pay a portion of my surgery. He had to make dinners, clean the house, do the laundry, give me my heating pad and medicine, carry me up stairs, carry me down stairs, carry me to the bathroom, blow dry my hair, put on my make-up, get me dressed, and sit at home a whole lot on account of me. He had to work extra hard to make our budget work since I could no longer work. He did it all without ever complaining and without ever getting upset with my limitations. Every girl should be so lucky.
8. Eat well. Although the research hasn’t completely confirmed the effects of a healthy, all organic diet for women with Endo, there is still plenty to say for not putting junk in your body when you’re already feeling down and out. Eating really healthy became the light at the end of the tunnel for me some days because it was the only thing I could control when it came to my body. Even if eating organic doesn’t turn out to aid in the amount of pain you’re feeling, there are certainly foods to avoid to make it worse. For me, it was anything with salt and yeast. Read Endometriosis: A guide to healing through nutrition. Don’t forget to take vitamins like a multi, B complex, lots of Omega-3, flax, psyllium, evening primrose, and calcium with vitamin D to combat bone loss from Lupron also!
9. Take advantage of the good days. Although I was stuck of my rump for an average of 18-25 days out of the month, take advantage of those days when you feel a little better. Even if you are still in pain but can do more than normal, do it! Just don’t over-do it. It’s good for your soul to feel a little “normal” when you can get out. I spent these types of days playing with my nephews and niece and I’m so thankful for those days to look back on.
10. KEEP A PAIN JOURNAL! I have every single day documented. I described every pain and the location. I rated the pain on a scale from 1-10 and what I used to try and stop it (Vicodin, heat, Naproxen, etc.). I also wrote down when I went to the Dr. or the ER and took note of every crazy, pointless procedure I had done. This made it really easy for Dr. Redwine to see what I had been through on a daily basis and have an accurate account of what had worked and what hadn’t worked. It also gave him a good idea of how invasive my surgery needed to be and where to work his magic first.
Today, I feel completely normal! In fact, this is the best I have EVER physically felt in my life! Thank you so much Dr. Redwine!