Endometriosis Surgery Recovery and Treatment

Hello, my name is Christina and I am here to open up about a disheartening disease I have been battling.

Since I was eleven years old, my body began an intense fight with debilitating pain. I used to wake up at all hours of the night in excruciating pain and was told to "walk laps" around the house until it went away-but it never did. To the credit of my elders, it is to my understanding that none of us truly knew what was going on. I have a disease called Endometriosis, stage 4, and it has taken away a lot of my autonomy. Stage 4 is the highest stage of this disease and it has the potential to take a darker turn. I am at a place where I have to act and do my best to help myself. I am now thirty two years old and am about to endure my second excision surgery in May. You might have heard of this disease or maybe this is your first time hearing about it. I will give you insight to all the knowledge I have gained from my experience. Hopefully I will gain you as my ally along with anyone else in your life you know who suffers from Endometriosis.

Endometriosis is a full body disease that consists of tissue growth that grows inside the body where it is not supposed to. It has been found on every organ including the uterus, bladder, intestines, lungs, lining of the heart, and in rare cases, on the brain, the list goes on. This leads to adhesions, lesions, loss of organs/failure, blood filled cysts, nerve damage, scar tissue, inflammation and loss of mobility. My direct experience with this disease involves all of the above along with a fluctuation in my ability to walk. I have lost major mobility in my right hip over the last ten years due to deep infiltrating adhesions on my pelvic wall that remain as an open internal wound and adhere my organs to it. To feel your insides getting pulled and manipulated is a horrible and incredibly painful experience. Wherever it is in the body, I feel it. It can feel like ripping, burning, bleeding, pulling, severe inflammation, nerve pain, barbed wire, and it has the ability to put me out for days. According to my last surgery, I have Endometriosis implanted all along my peritoneum lining, on my pelvic wall, choking out my sacral nerves, blood filled cysts, fusing multiple organs together including my bladder and uterus. It took 17 years to find someone who listened to me and agreed to surgery for a proper diagnosis. My previous surgeons were only able to check one portion of my body and left over 40% of the found disease due to it being out of their skillset. While I am under the impression that they did their best, it is detrimental to leave this disease in your body after you are cut open. The nature of Endometriosis is that it grows when it wants to, attacks when it decides to, and has a tendency to come back with a vengeance. It is often compared to the nature of cancer, except it isn't deadly in the same way. There is no cure, treatment is experimental and only offers a temporary band-aid. It does not show up on scans, in rare form it might, but the only way to truly know where it is is through surgery. Surgery is the gold standard for treating Endometriosis as it is the only way to remove disease and reconfigure your organs to their best potential before it comes back again.

On May 21st, I will be getting robotic assisted laparoscopic excision surgery by a very well accredited oncology surgeon who has been specializing in this surgery for some time now. This surgery involves cutting away and reconfiguring the effected parts of my internal body back to as much normalcy as possible. My surgeon has made it clear he is not looking to remove any of my organs and wants to do everything to keep me as in tact as possible. This time, I will be getting my abdomen treated as well as underneath my ribcage. The recovery from this surgery is anticipated to be lengthy, my last recovery took me four months to feel like myself and regain full use of my body. I will require a lot of assistance in the form of monetary support, emotional and physical. I ask for grace as you take this all in.

This disease has taken away my ability to walk on and off for the past six years, I have been on bedrest for four months at the worst of it. This makes it incredibly difficult to find a steady job. Unfortunately, this has been coupled with a few other chronic illnesses that make my life challenging and not too able-bodied. Regardless of my searches and tons of applications, I have had no silver lining as of yet which lands me in a financial detriment.

Even though Endometriosis is rated in the top ten most painful diseases in the world, it is not recognized as a disability according to the government. There currently is no cure and has minimal funding for research. Everyone who has this has a different experience with it. Some may never know they have it, and some certainly will. There are plenty of theories but no true direct understanding of the cause as it is still being researched. Because it mimics the lining of the uterus, it responds hormonally and to anything inflammatory, but it is not the same. There has been a terrible stigma over this disease as it has been labeled as a "reproductive disease" and faces major discrimination in medical facilities. I have personally faced much ridicule and ignorance from specialists over the years. Not many doctors are educated on this disease. In the past year, two people from my support group have died asking for help from doctors who turned them away. There are only 300 surgeons in the world trained to perform this surgery.

Because of my personal experience, I have been a frequent flyer with physical therapy for 14 years. I used to be a dancer who headed into competition. I used to go on runs, do CrossFit, teach yoga and ride horses. I am now at a place of surrender to the loss of what I used to have and the acceptance of what I do have now. With each new chapter of this story, I meet myself where I am and learn how to help. My goal has been to manage my pain as best as I can and do everything in my power to find a way to treat the growth of Endometriosis in my body. I have tried everything from an anti-inflammatory diet, physical therapy, massage therapy, far-infrared therapy, yoga, weight lifting, integrated medicine, western medicine, and hormonal treatment. I have found what works, what doesn't work, what wreaked havoc on my body-I certainly try. Where I find myself now is seeking assistance from Chinese Herbal Medicine and Integrated Medicine as there has been a long run of treatment for this disease. I am hopeful on my search to finding someone who specializes in this to help me. I am understanding that this might be a treatment that does not accept insurance and to that, I will have to do what I have to do in the name of health and healing. I am eager to feel better. Once this extensive surgery is done, it is my responsibility to take on a treatment plan as soon as possible and this is where I am gearing towards.

My surgery will be very involved and I will need some help keeping up with bills during recovery as I will be out of commission for some time. Your contribution will assist my recovery with bills, meals, feeding my two lovely cats, treatment, and any extra bills from medical expenses.

I am hopeful that my goal is reached. I am not sure what exactly I am looking at as far as recovery time goes. I am not keen on asking for help, but this is a point in my life where opening up and seeking community is where I lay my scared yet optimistic trust in you. I will be dealing with this for the rest of my life and I do not know how many surgeries my future holds. But right now, I am focusing on the present moment. Whether you can donate, share this page, share my small art business page or shop my artwork (IG: @three.moons.company), anything helps! There is a ribbon for this disease, it is a yellow ribbon, please feel free to pin it anywhere.

We are all a drop in the ocean, this is a mere cause for a wave. And we need motion to make that ripple happen.

Thank you for being here and reading, learning about this disease and my experience.

It means a lot to have my story shared and held.