Alive

Seventeen years ago I was diagnosed with Endometriosis. I was 21 years old at the time. It took me 7 years to get the actual answer to many of my "ailments". That is 7 years too long to be honest. My symptoms first started when I was about 11/12. I know I started my period young. It wasn't so much the heavy periods that did me in, it was never being able to have a tampon fit comfortably, it was the GI symptoms that literally became an everyday occurrence. 

Doctor wise at that age, it was pediatrician based where I was placed on birth control pills and some dissolving pill to take when I experienced the GI symptoms and severe cramping. I think it was the whole being dismissed that has followed me into my adulthood to be honest. To think about how many doctors I had to see and how many I trusted that overwhelms me to be honest. I think I was on every brand of birth control pill throughout my life until my partial hysterectomy. 

The first surgery is sort of a blur, the second as well. I just know the pain came back worse each time post op. That was due to ablation. Something to which back in my early twenties was the proper standard of care. 

My first excision surgery was around the age of 25 where it took almost seven hours to excise and unstick my parts due to everything adhering to my body thanks to the mess of ablation. Following suit to that surgery, I had my partial hysterectomy at 30. A choice that wasn't easy however I knew it had to be made due to adenomyosis. The pain returned and 2/3 years later, another surgery. This time my ureter was bent and embedded in the disease. I had a stent placed for a few weeks. Something I won't ever forget. That pain was horrible. Then 2/3 years again, my left ovary was stuck to my bowel. Every time the surgeon would try and stitch it out of the way my body would go into bradycardia. (good times). Now here I am at 37, heading back to my excision specialist yet again for answers. As much as I don't want to have another surgery, my quality of life, my mental health, my entire life is just unbearable. The GI symptoms have never gone away. I have had endoscopies and colonoscopies, MRIs, Ultrasounds, Pelvic Therapy, Regular Physical Therapy. I did everything as I was supposed to but yet here we are. Trust me I am grateful to be alive and to be able to push through the pain daily but there comes a point where I want my life back. 

I may never be where I want to be and I am okay with that. I have lived with this disease long enough so I know how to block it out but when is enough enough??

Enough

March is Endometriosis Awareness Month, something as my fellow readers know that it is something I have struggled with my entire life. Someone commented on my social media post the other day saying you've been through a lot. It really made me think about it and yeah I sure have been through a lot. Rewinding to my teenage years, well actually, when I was 11/12 when I started my period and it just all went downhill from there medically. I can say that pain changes you. People also don't know what to say or do around you and to be honest, some avoid you. It feels like you are battling alone most of the time and you hate to even complain about being in pain because you don't want people feeling 'sorry' or think that you are looking for attention. One day I will put it all out there but to be honest I have blocked so many early memories of this disease because it has been isolating and traumatizing all at the same time. 

Now I just do my best to protect myself from everything and just continue to try and live as best as I can. I often feel guilty when I get home and the only thing I can do is laundry. I also lately feel useless and alone in all of this. I mean the only one that fully understands being in pain daily is my mom. She has been my shelter from all of this. You know the saying about being strong for too long? Well I feel as though I have been strong for 37, almost 38 years and I am tired. I think this is why I try and put timelines on many things because I missed out on so so many things being in and out of hospitals. Like when will it be my time to be married and settle in to just having someone there with me to keep me company and just love all of me. I am lucky in love do trust me on that. I never thought I would find love again after Jeremy but I just know how short life is and how one minute you can say goodnight to someone and the next day they are gone.