Not the ENDO me!

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The last few months I’ve been struggling. Most of you know I have a chronic illness. I was diagnosed with Endometriosis in 2013. I have had 4 (failed) surgeries in those 4 years. The surgeries I had were simply bandaids. As this disease has no cure, it has been a rough time. I thought 2016 was bad…

After dad passed away and I returned to Oregon, my life was all over the place. It was difficult to find peace (still is) and then in mid June I had an ovarian cyst rupture. From that point on I’ve been in the worst pain I’ve ever had for an extended period of time. I’m not sure what the rupture triggered, but I spent the last 2 weeks of June and most of July bed bound. I was able to function for a few hours in the morning until the pain became so constant that I was unable to do much of anything. Coupled with anxiety, grief, and depression, I was not myself. I thought a quick trip to Chicago to see my favorite band with my friends for my birthday would really lift my spirits. While I did manage to enjoy myself, I was in chronic pain the entire time and had to turn to pain meds to get through the weekend. That is not my idea of a good vacation.

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Once I returned home, I was miserable. I have spent an ungodly amount of money on alternative therapies in hopes to relieve some pain. I started accupuncture (love it!), cryogenic freezing, weekly massage and chiropractor, and abdominal scar tissue massage.

Let’s back up for a minute. Endometriosis is a widely unknown disease to most people. What the hell is it? It is when your uterine tissue grows anywhere outside the uterus. It can be found on lungs, diaphragm, bowels, ovaries, fallopian tubes, abdominal cavity, etc. It has no boundaries. When a woman experiences her cycle, it produces extreme pain leading up to it. Once the uterus sheds its monthly lining, the tissue outside of it does as well. Those tissues have no way to evacuate the body; therefore, the blood collects inside the body and forms adhesions. Very painful adhesions. They caused my intestines to collapse in on themselves leading to a bowel resection. They can cause so many problems, and even death if you are not treated for emergency surgery (as was the case in 2015 when I had an intestinal blockage.) So, in addition to chronic abdominal pain, it causes headaches, nausea, sciatica, leg and back pain, painful gas, painful sex, and unpleasant days in the bathroom. Many Drs have no idea how to treat it. They throw Birth Control at you. They offer crazy hormone injections with unspeakable side effects. They tell you it is all in your head. See, the thing is, Endo doesn’t show up in any test. Ever. Not in ultrasounds, blood work, CAT scans, nothing. So without a laporascopy (diagnostic surgery), you can’t find it. Most women live years, even decades not knowing what is wrong with them and it is devastating. Another side effect that is perhaps the most difficult for many is infertility. Knowing that even if you wanted a baby, the likelihood is very slim.

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I am one of the lucky ones that my body gave so many red flags that the surgeons at the ER were willing to go in and take a look almost 5 years ago. Since then, the rate of re occuring endo is about every 9 months. That’s how long in between surgeries I start to feel badly again.

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So here we are. September. I have done my research over the years. Followed the “ENDO diet” (no wheat, dairy, sugar, alcohol, soy and caffeine) but they can pry my one cup of coffee from my cold dead hands… I was off this diet most of the latter of 2016 and first half of 2017. Life has not been easy. The flood. The living with my parents without my husband for 6 months. The moving across the country. The part where my dad died.

I have tried to recommit to eating well because I physically cannot exercise. With the weather coming around and cooling off, I want to get outside and enjoy the beauty that is Oregon in the fall. I need to get moving. Depression is a reality. Isolation is a reality. I am alone in my house all day with no car while Justin works and it has become my prison in a way. I try to smile and remember that good things exist in the world, but it’s hard.

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I have days where things are better, but then I have really rough days, too. My husband has been a huge support through all of this, as hard as it has been. A week ago I finally made some headway on my pain management. I tried full spectrum CBD oil. I made candy with the oil and started on a daily regimen of 50 mg. Within 1 day I noticed a difference. When I would usually be headed for bed to take a rest, I found I didn’t need to. I have been able to cook and clean and do housewife stuff without constant breaks or feeling like I need to just quit.  It has already been such a gamechanger for me. If that is the only reason I can find about being far away from my family and here in Oregon, then I’ll take it! I wish the rest of the country had access to this medicine the way I do. The stuff they sell online is only hemp derived, so when I took that for 2 months I felt no benefit. Until I used the cannabis derived CBD that utilizes all aspects of the plant, I didn’t think it was going to work for me. It doesn’t create a high. It doesn’t create addiction. It is the answer to helping this country with the opiate epidemic that kills 91 people a day. I cannot tell you how passionate I am about spreading the word. More and more people are becoming aware of this powerful medicine. I will shout it from the rooftops until it is available for all!

The countdown is on. Back in spring, I had been doing some research online about Endo and found an amazing group on Facebook that was not a support group, but rather an educational forum. I found out about a type of surgery that only about 100 Drs in the country specialize in. It’s called Excision. I have only had ablation (burning off the endo) at this point which has a high recurrence rate. Think of it like an iceberg. You see the top poking out of the water, and underneath the surface lurks a large glacier. You cut the top off and it solves nothing. With excision, they go in (often with robotics) and cut the endo out. Most people think having a hysterectomy is going to cure you. THIS IS NOT TRUE. The tissue that has always grown outside of it is not going to magically disappear because your uterus is gone. Thousands of women are needlessly having organs removed and still living in pain. There is so much more about this disease that I could tell you. It ruins marriages because of abstinence and infertility. It ruins friendships because you become anti social. It ruins YOU because you become overrun with feelings of depression, anxiety, and the chronic pain that just makes you feel like shit.

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So… EXCISION. I found a wonderful Dr who has specialized in this type of surgery for over a decade and he’s only 5 hours away in Portland. I had all my records transferred to his office 2 months ago and now I’m just waiting to buy VERY expensive insurance in November. It will not be an easy recovery, but I figure… I’ve been through worse. While it is not THE answer, it can greatly reduce the likelihood that it will recur. It has 65-80% chance of ridding me of it completely! I feel so fortunate to have found this information and to be able to trust that someone actually knows what they are doing. I saw on this Dr’s FB page that he performs surgery to the Grateful Dead and The Beastie Boys so I knew I made the right choice!

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While I wait, I am still struggling with grief. Mostly guilt. Guilt over being too distracted by my own pain to honor the life of my dad and losing him. I know that is crazy. I know he wants me to take care of me. But I feel so selfish sometimes. I have become a shell of myself but always with a smile on my face for the rest of the world. I am not one to complain to everyone, but I am trying really hard to project a positive attitude that this pain and these struggles are all temporary. Soon I will have relief. Soon I will have a life again. Soon I will be able to work. SOON.

Until then, I’m just here trying to figure out how to lose the 12 lbs I’ve gained. Everyone always tells me that I inspire them, but I sure as hell don’t feel inspiring or inspired. I want to get back to that version of myself. I’m sure I will, but for now I’m just stuck.

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Thank you so much for listening and trying to understand what life has been like for the last 3 months (5 years!).  Moving forward, I have big plans. Here’s hoping that by Winter, I am on the road to a newer era of Sarah!

Much Love.

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