choose not to suffer

by Cort
(USA)

In 2012, after living with abdominal pain for 15 years, I was finally diagnosed with Endometriosis. Before my diagnosis I went to countless doctors and emergency rooms looking for answers and relief from the pain. The only answer I ever got was "every woman gets menstrual cramps...it's normal...you're just too sensitive." Meanwhile I'm vomiting, fainting, unable to move from the pain. NOT normal.

Finally one ER nurse said "huh...looks like you might have endometriosis." I had never heard the word before but after much research found out that it's actually a common chronic pain disease. The only way to diagnosis it is with exploratory surgery, so I had that done within a few weeks. Sure enough, my new GYN found endo. At my followup appointment she looked very grim when she told me that Endometriosis is a chronic pain disease with no cure. That I would experience pain for the rest of my life. That there are treatments I can try, but the relief from them are short lived and can cause major side effects. But by that time I had already joined an online Endo support group who's members told me that my doctor would say exactly those things and that she is wrong. That there IS a cure and that cure is excision surgery by a certain skilled surgeon. So I didn't believe my doctor. I had great hope for a cure even though every single website and study on the disease says there is none.

This skilled surgeon has a popular practice five states away. All he does every day is perform this magic surgery and "cure" suffering Endo patients. My husband and I felt it was worth it to drain our savings and go get the surgery. It was a hell of a procedure that included a traumatic recovery. As I recovered I slowly realized as the pain from the surgery left that my normal endometriosis pain was still there. It didn't work. I told the online support group this and they accused me of trying to talk women out of getting the surgery that could cure them. They kicked me out, it was devastating.

This is when I let the pain take over my life. I wasn't ready to accept that pain would be part of my life forever and somehow this denial made the pain worse. I still had hopes for a cure so in the next three years I had three more surgeries and tried four different drug therapies, one of which gave me 6% loss of bone mass...not to mention a lovely bald spot. The funny thing is before each surgery my (new) surgeon would tell me that Endo has no cure and that surgery is a temporary fix. Why couldn't I believe him? And why did he keep agreeing to cut me open?

After each surgery I'd have a few weeks to a few months of no pain. In this time I'd convince myself that I finally found the answer and start doing the things I loved again. Hiking, painting, running...all the things I thought I couldn't do with the pain. Then as the pain crept back in I became more and more depressed. Each time I'd go right into invalid mode retreating to my bed with a heating pad at the first glimmer of pain. I had no life but pain. I quit my job, stopped doing my hobbies, avoided my friends. I treated managing my pain (if you can call it that) as a full time job.

Fast forward to a few months ago.....I am now missing an ovary and my uterus...I am recovering from my last surgery....I visit my surgeon for the followup appointment. I tell him that the pain is back, he tells me in so many words that he isn't interested in treating me anymore. He says "you endo patients" all keep coming in over and over again for help with a disease that can't be helped!

That was a slap in the face that I needed. Fast forward to now and I am finally accepting my fate. And with the help of a therapist (and antidepressants for now) I am determined to not be defined by pain. I WILL continue to do the things I love. I WILL exercise and take care of my body. I will choose NOT to suffer.

I'm thankful that I found this website when I did. I would have dismissed it months ago, thinking that it's for people who don't really have it that bad because your techniques wouldn't work for really bad pain. I know now that that's wrong.

Just today I started feeling the pain creep in and instead of hiding under the covers feeling sorry for myself I decided to go to the retirement home where I volunteer with dementia patients. The entire time I was there helping I felt no pain.

Now I use distraction as my new miracle cure. It really works! I immerse myself into the things I love and like magic the pain dissolves like a distant memory. Of course it comes back later, but at least I accomplished something and feel better about myself. At least I LIVED for a while. And I'll do it again tomorrow, and the next day, and the next day until the day I die.

I choose not to suffer. I choose life.
Thank you for helping me.

Comments for choose not to suffer

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Keep on keepin' on
by: Dave

Hey Cort, it is good to hear from you.

I am happy to hear that your therapist likes your distraction techniques. Keep up the good work and keep in touch with your therapist. He/she probably has a lot of other good ideas and can help you monitor for signs of depression or anxiety (always a risk for people living with chronic pain) that needs to be treated.

I have another distraction idea are you.

Your letters are always very well written and easy to understand. I think people would like to hear more from you. How would you like to write a web page for the web site or just a brief note for the blog.

You can talk about which distractions are effective for you, and why you think they work. You could discuss how you get yourself motivated every day to get up and get going. Maybe you could share some of your therapists ideas (I like the one about keeping a list of distractions for when you are tired).

I don't know if you think that is a good idea or not but I hope you will at least think about it. I am sure that everyone would enjoy hearing from someone else who has "been there done that".

Anyway, I'm glad to hear that you are doing well.
Keep up the good work.

All the best,
Dave

Hey, Dave! ....a Cort update
by: Cort

Hey Dave! Thank you for your response.

I have to be honest and say that finding your website was my epiphany. After I came to terms with this being my life I searched "living with chronic pain" and found you! And I'm so glad I did. I actually thought I was searching for tips on how to get your doc to prescribe narcotics, or how you know it's time to get a handicapped placard for your car. Now I know that I don't need those things.

Since writing my first letter I've been practicing distraction techniques and having a lot of success. And I was thrilled when I went to my second visit with my therapist today that her homework for me was to list all my methods of distraction so that if I'm exhausted and already in the pain I can just look at this list and try something. She couldn't believe that I had already discovered distraction techniques and had been practicing for a week! She said I probably saved myself several hours of therapy (not to mention hundreds of dollars!) by already knowing this stuff. (Thanks, Dave!!!!)

I know that I still have a lot of work to do before I'm a pro. And I know that there will be times when I just need to give in and cancel plans and live on the couch for a while. This technique works, but it does take a ton of energy and I might not always have it in me. I think that if I can stay on top of it I might be able to keep it from getting that bad. Also, it's way better than being doped up...which really never helped with the pain anyway.

I'm really excited about my future now! I've dedicated that past few years on trying to beat this incurable disease and now that I'm not doing that anymore I can finally get on with life. I feel kinda dumb that I wasted so much time. But I'm not going to dwell on that. I'm going to focus on whats ahead and maybe even make some exciting, long term plans. Wheeeee! Look at me go!

P.S. I hope you do keep this page up and running. I think I've read every word on it, including the links for other pages and it's all very valuable. Even though most of it is for back pain a lot does translate to probably any kind of chronic pain. I imagine a lot of people come here and assume, like I did, that it's for people in mild pain. Hopefully something sinks in and they benefit from it. And if they're reading this right now I hope they take it as a personal message to them (yes, YOU, the one with the pain!) that they don't have to suffer and that they can have a full life even with pain.

Hooray for Cort!!!!
by: Dave

Hey Cort, thank you so much for writing in. I do not get a lot of feedback on my website and in the past few months I've started thinking about dropping it. But when I get a letter like yours it makes me think that somebody is listening. Thank you for that!!

Now... HOORAY FOR YOU!!!

You went through a lot getting to where you are but you have survived. You must be a very strong person to go through everything you have been through.

Was there any kind of epiphany? Or single moment when it dawned on you that you need not surrender your life to the pain? Or did it come about gradually?

Your situation sounds very similar to mine except I have back pain instead of abdominal pain. The busier a I am the less it bothers me. The more I think about it the more it hurts.

So I choose not to think about it. Besides, life is about concentrating on the things you like and ignoring the things that you don't like.

The giant step that you have taken to accept your situation and get on with your life is very difficult for many people. It requires tremendous energy and also I must say it takes intelligence. Many people cannot muster very much of either one.

By choosing to live your life and NOT suffer you have changed your life forever. You may never be on television, but it is truly heroic, deciding to take control of your life rather than let your life control you.

I hope your family and the people close to you appreciate your strength and fortitude because what you are doing will affect them almost as much as it affects you. Chronic pain affects the whole family.

Thank you again for telling us your story. I am very happy for you and you have made my day.

I hope that you will keep getting up every morning, putting a smile on your face and making your life the best that it can be. Choose NOT to suffer and please keep us posted on your progress.

Best wishes,
Dave

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