I was going over my blog the other day, looking back at post from years passed and realized that some of my posts chronicled various aspects and experiences of this insidious disease but realized I lacked a timeline which just gives a timeframe to my process of diagnosing and what procedures/treatments/surgeries I've tried at various times.
If you google 'endometriosis' this is the single sentence definition that is offered:
A disorder in which tissue that normally lines the uterus grows outside the uterus.
That statement makes it sound like something so insignificant and it has helped spur my mission of awareness of the disease AND what it does to the women who have it. The following pictures are from one of my actual surgeries, showing both endometriosis and adhesions- which often go hand-in-hand.
1983- BORN
1996- Menstruation and endometriosis symptoms began. Initially and for several years I only had problems every other month. But it was always intense- made several hospital trips with out of control pain, nausea, bleeding, etc- continued for years at this rate.
2005- 22 years old- begins increasing not only in severity but in frequency of symptoms to every month and frequently lasting longer than a week, thus it began impacting my attendance with both work and school. Pain really became much harder to deal with and more intense. This pushed me to find a cause. Doctors initially began giving me all types of tests: colonoscopy, endoscopy, barium xrays, ct scans, ultrasound, and nothing was ever found. I feel like I was completely written off, told that I needed counseling and an antidepressant.
2007-2009- Began graduate school and was working at my first career-ish jobs. My attendance began to suffer greatly due to unbearable pain and nausea and it was still due to an unknown cause. This negative impact on significant parts of my life re-energized my determination to find out what was wrong.
2009-2010- I changed my primary care physician and my life forever changed- in ways I could have no way of imagining. When I first met my doctor she was astonished that with all of the gi tests I had done, not to mention the amount of radiation I had undergonewith those tests, the number of medications I was on, was all while not having a diagnosis! She did an exam, listened to me and said I might be suffering from something called ENDOMETRIOSIS. I had no idea what that meant or how it would impact my life.
Once I had that word, I felt life I had something to hold onto. It was gynecologist after gynecologist to no avail, thus I received a referral to Cedars to have my first laparoscopy surgery to diagnosis the disease, or to rule it out. I had the lap done and was officially diagnosed with endometriosis and adhesions. The surgeon did a uterine ablation. This was on Saint Patrick's day 2010, a day I will never forget. I still had hope at that time and did feel good for a few months post-operatively.
2010-2012 I experienced a few month-long reprieve following the ablation, I'd say 2-3 months. At this point I really had a limited knowledge about this disease and this early in my experience receiving specific medical care, I STILL believed and believed IN doctors. I believed that they would a) know about my disease, b) give me, the patient, my true options, and c) guiding me to help make the best decisions regarding treatment...little did I know.
Somewhere, unfortunately I do not recall where or how, I heard that a hysterectomy could be helpful in providing a relief from symptoms. It became my mission and I was determined like never before to have a hysterectomy. Surgeons however are generally not itching to give 28 year old women hysterectomies. I understand how big of a decision it is but they didn't understand what I was going through physically, emotionally, mentally, spiritually, while suffering with the endometriosis which was becoming worse and worse day by day.
I was getting to the place where I felt I could no longer handle it, in more ways than one. I was sure that I had made the decision that was right for me. I've never wanted children, and I couldn't sacrifice my entire current life, which is what helps build our future, for a thing that I have never wanted, and only slightly MIGHT want someday. No doctor that I had seen could seem to hear that and understand how much and how deeply I meant it. I was really experiencing, if anything in reality I was downplaying my suffering, NOT exaggerating it.
In the spring of 2012 I finally found MY doctor. He listened to me, I had even brought my mom as my witness to help me prove my case, thinking maybe he would listen more. He did. He said he would do the surgery. I don't think words can express the excitement and anticipatory relief I could feel. I could see myself having a life.
A week later I had my surgery, a vaginal hysterectomy. The recovery was the easiest (this was my 2nd surgery of 5) of all my surgeries because I had no external incisions to deal with. I felt incredible, better than I had in years and years. I was able to live my life, and boy did I. I had 18 great months.
2013-2014 unfortunately 18 months later each and every symptom embed up returning, and with a vengeance, just as bad, of not worse than before my surgery. I was devastated. Emotionally I was at one of my lowest times in my life. I didn't know what to do. I went back to my diagnostic surgeon and he essentially forced me to go back onto a treatment I didn't want to use. I had one injection in January 2014 and over the next 6 months I was hospitalized, only including admissions and not just er trips, 6 times, staying sometimes as long as a week. Due to the treatment I underwent I was diagnosed with a drug-related hepatitis. I also had to have a cholecystectomy and because I had no gallstones or any infection, only pain, and because I later learned that I had disease on my liver, ribs and lungs-practically every organ in my abdominal cavity, I believe my cholecystectomy was endo-related.
I was informed of a specialist surgeon. I somewhat desperately contacted him and arranged to have surgery, that I seriously thought and was led to believe would be my most complicated, but even more importantly my LAST surgery. I had my operation and found disease and/or adhesions on my liver, ribs, appendix (which was removed), bladder, intestines/colon, rectovaginal septum, kidney, uteters, vaginal cuff, ovary, and had an overall very extensive and complicated surgery. The recovery was rough, long and very, very hard. Emotionally I had begun to let go of endometriosis, as I truly believed this was my miracle!
2014-2015- Devastatingly, including my excision surgery recovery, I only had a 5-6 month long reprieve. What a disappointment to pay CASH, see a specialist to only have 5 or 6 months of feeling good, which included my rocky recovery of about 3 months. This is something I am still somewhat reeling from emotionally. I found an amazing robotic specialist surgeon within one of the most renowned medical and educational conglomerations in our country. He performed am oopherectomy and lysis of adhesions and yet further excision of endometriosis. Unfortunately when I contacted my prior surgeon for assistance and guidance with this latest relapse, he responded with touting that I couldn't have endo because he had performed my surgery and said I needed to see a dietician and to seek counseling (coming from another physician I had entrusted my past experiences), a complete dismisal of what I was going through and how bad it was, and how similar it is to what I was experiencing before my surgery with him in 2014. His disrespectful response and lack of compassion are what steered me toward finding a new specialist surgeon.
At Present- I find myself in a quandary. I have no female reproductive organs left, I've had 5 surgeries for this disease in the last 5 1/2 years. Emotionally now I'm just wrecked. I truly thought this was going to be over. I'm not suicidal per say, it's more accurate to say I'm just exhausted, on another level exhausted. So tired it hurts. I don't know what to do. It seems to feel like life has been fight after fight after fight, and for what? That I don't know. At my age it is very difficult to live and cope without being able to have any momentum to go forward and onward in my life. I feel like I cannot catch my footing, so to speak, in my own body, much less my life. It is very discouraging to see these specialists and to not experience long-standing relief after such extensive, well done operations and countless treatments. Why am I not getting better? Why can't I have a life? I see girls that have successful treatments and though the disease never goes away, they are able to live and even enjoy their lives. I hate to admit this, but I'm jealous.
This post ended up being a little long but I am just trying to express how deeply and significantly this whole nearly 20 years long journey with this devastating, all but fatal, disease. In short, yea right lol, I just don't know what to do or how to exist in this emotional place. It has been quite a journey and I'm trying to hold onto hope, though to be honest sometimes in trying to find hope. 20 years is a very long time. I have found it both a powerful and cathartic process to use my writing in this arena. I can only hope that it helps to raise awareness about endo and destigmatize the women that have it further to help my sisters to remember they are not alone in this fight.
Thank you so much for taking the time to read this. Sending thoughts of health, peace and healing to each of my readers and my sisters.
signing off in love ॐnamastéॐ
Stephanie
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