Today’s post is by my friend, Jessica Hiltz. You might remember her interview or her previous guest post. In honor of Endometriosis Awareness Month, she’s sharing her top tips for surviving endometriosis.
As a twenty-two year old teacher starting my teaching career in a new part of the country, I had no idea that March was Endometriosis Awareness Month. I looked forward to March because that was when my school had its Spring Break.
A few months later, endometriosis became very real to me. After months of suffering from painful cycles, I was seeing a specialist who was to do surgery to confirm a diagnosis of endometriosis. After the surgery, I found out I indeed had endometriosis. I was naïve to all pain, medication and surgery that would come with this horrible disease.
Now, almost 13 years later, I’m not naïve to the suffering that comes with endometriosis. I’m currently facing my seventh surgery for endometriosis. I continue to spend many days/nights each month in the ER getting shots of strong medication to help manage the pain. I’ve not been able to have children due to this disease. There is no cure for this terrible disease, so those who have it must make the best of their situation.
Today I’d like to share some tips to help those dealing with endometriosis. These are a few of the things that have helped me survive the last thirteen years.
1. Be informed.
I was very fortunate to be diagnosed early. Most women are not. Many wait an average of ten years before they are diagnosed. If you suspect that you might have endometriosis, ask your doctor about it. If you have been diagnosed, be informed about the disease. Learn what you can about it. Know how your body’s cycle works and what common endometriosis medical terms mean.
2. Find an honest doctor.
Thankfully my gynecologist was a reproductive endocrine specialist as well. It was nice to have one doctor who could do it all! One of the things I’ve appreciated about her is her honesty. When I was first diagnosed, I heard everyone’s “magic” formula for pregnancy. I was so overwhelmed trying to figure out where to start. I remember asking her in one of my doctor’s visits what “magic” formula I should start with. She smiled and told me simply that if I was going to get pregnant, I’d get pregnant whether or not I tried some “magic” formula. Her common-sense honesty was such a relief to me. It took so much pressure off of me. She was also very upfront with us about IVF. She told us right away about the effects that the IVF drugs would have on my endo. She also gave us a success percentage regarding IVF. We were shocked with how low our probability of success was. Her honesty about the situation made our decisions so much easier.
3. Pursue alternative methods of treatment.
My RE is the final authority when it comes to my treatment. She directs my path of medications, surgeries and other things; but I’ve tried some alternative methods of treatment. Although they haven’t cured me, they’ve helped me deal with the endo better. Cutting certain foods out of my diet at the suggestion of my naturopath has given me some reduction in pain. Seeing a chiropractor has helped keep my back in top shape. Osteopathy has helped me deal with the pain on a monthly basis. Massage therapy has helped to relax me. Although none of these treatments have healed me, they’ve definitely helped in small ways.
4. Plan your life around your cycle.
I‘m embarrassed to say that I’ve only begun to do this. I really should have done this earlier and it would have saved me so much trouble. There are even apps for your phone that can help you with this. I now don’t take on extra responsibilities during my most painful times of the month. I make sure that I have all my laundry caught up. I make easy meals ahead to put in the freezer. I clean my house well just before I know the pain is coming. I try to have everything ready, so if I need to take it easy, I can without much difficulty. Also, by not having too many extra commitments, there isn’t as much pressure on me so I can get some extra rest.
5. Keep a journal.
Keep track of every little detail. Write down what your cycles and pain are like. Record what medications and treatments you try and their results. Keep track of when you have surgery. When you are just beginning down this road, you think you’ll be able to remember it all, but after a while you’ll begin to forget details. As time goes on it’ll be handy to have a record of what has happened especially if you have to switch doctors and clinics.
These are just a few helps for someone who is suffering with endometriosis. God has been good to me and although sometimes the road has been rough, I have been extremely blessed with a wonderful doctor who has walked this road with me.
Now when March comes around, I don’t only look forward to Spring Break. I look forward to seeing pictures of the CN Tower in Toronto being lit in yellow lights to raise endometriosis awareness. I like dressing in yellow throughout the month! I can’t wait to read all the blog posts that are written about endometriosis. I enjoy seeing all the events that are planned to raise awareness about this disease. Hopefully one day in the near future, we’ll be able to celebrate March as Ending Endometriosis Month with a cure.
What’s your best advice for surviving endometriosis? Please share your thoughts in the comments below.
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