My Journey living my life with Endometriosis.

by | Apr 5, 2023 | 0 comments


Disclaimer: This is my journey, yes I am a Nurse Practitioner but I fix broken hearts, not broken uterus’ therefore this is by no way giving you medical advice. Thank you for reading my journey.

Part 1

I got my period when I was 14 in 8th grade. I remember the day specifically, I was in horrendous pain, doubled over on my Aunt Jackie’s couch. I was spending the weekend at my Uncle Mike’s in Reading, PA and luckily my Aunt Jackie was home at the time when it started. I remember laying on the couch for the majority of the weekend with terrible cramps. I thought maybe this was just normal and that the pain would lessen or I would get used to it at least.

But it never got less intense and when I was 15 or 16 my mom took me to see a gynecologist. After that visit I was placed on birth control to control the bleeding and the pain. I wasn’t sexually active at the time but birth control helped regulate my cycle, and understanding how this interacted with my body opened my eyes. I also noted that a gynecologic exam was quite painful but was told this is normal since I was not yet sexually active. When I was 18, I switched gynecologists and began taking YAZ, a popular form of birth control at that time, which worked well for me. YAZ controlled my periods, lessened the bleeding and pain and did not give me any horrible side effects.

And it was during this time I first heard the term endometriosis. My doctor told me the only treatment for this condition was birth control. When you are on birth control, you do not get a “real” period. During our “real” period, we normally shed uterine lining but for women who have endometriosis the uterine lining sheds anywhere in the body-reproductive organs, bowel, lung tissue, bladder, etc. The shedding is sometimes also referred to as lesions. It is incurable. It is inflammatory. Birth control does not stop endometriosis. Even if you do not get a period you will have continued growth of endometrial lesions. It took me a long time to realize and make sense of this fact. So can we call birth control a treatment for endometriosis? But rather solely symptom relief is more like it. And though not proven yet, I believe this to be genetic and autoimmune in nature.

My doctor suspected I had this, based on the amount of pain and bleeding I had during period cycles and pain that I was experiencing during sexual intercourse. I lost my virginity at the age of 21 and I remember the experience being very painful but I again assumed this was normal, because it was my first time. After this relationship ended, I did not have sex again until I met my future husband. When we started having sex, I hoped I wouldn’t continue to experience the pain that I had in my first relationship, but the pain unfortunately continued. I was afraid to talk about this, mostly because I was embarrassed and thought that there must be something wrong with me if I couldn’t just enjoy something totally normal. Something everyone around me seemed to have no trouble with.

But the normal that I was experiencing wasn’t normal at all, and it took me many decades to find my voice and learn how to advocate for the severe pain I’d been experiencing since puberty. And I’m a Nurse Practitioner, who advocates for patients every single day. Now at the age of 40 and just on the other side of a hysterectomy I look back on these chapters of pain, growth, and growing pains with more clarity but also some uncertainty about what comes next in my life. Having my uterus removed was the right call, but the emotional toll has been heavy, and I’m still working through it and what is all means for my future. Over the last few months, I’ve found grace and strength in sharing my experience with others, and I want to continue to do so through this blog. I don’t have all the answers, and there are so many moments and milestones from the last many years that I’m still figuring out. But I’m hoping by putting these thoughts to paper-or keyboard-I can begin to make sense of the path I took to understanding my body and the pain I was experiencing. And in doing so, I hope to give something to a community of women and folks with uteruses-even if it’s just the comfort of knowing you’re not alone.