Part 3

by | Nov 1, 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.

At age 35 I moved back home to Philadelphia to be around my Dad as he had cancer and it was progressing. I sought out an endometriosis specialist on my own at this point and found one in the city of Philadelphia. I was never recommended to an endometriosis specialist by another healthcare provider. When I inquired about a specialist with my personal gynecologists over the years they would say, “There is no treatment for it and there is nothing that a specialist is going to do differently. Do not waste your time”. Being the nurse practitioner that I am, I finally did some research on my own and took matters into my own hands. I met with an endometriosis specialist in downtown Philadelphia. She told me about a new drug option for endometriosis that helps with period pain, pain during sex, and bleeding, called Orlissa. This is not birth control and was recently FDA approved at that time, back in 2018. It had a low side effect profile, which definitely appealed to me. I figured why not?

She discussed surgical options with me as well. Surgery was always deemed as a last resort and only necessary if you are trying to get pregnant. These are the common stigma’s behind surgery, “last resort, high risk, you may need more than 1 surgery once you start having surgery, better options with medications” I heard it all. Surgery is a way to remove the endometriosis from multiple areas within your pelvic region, laparoscopically. It is not curative but can certainly help with pain and bleeding. I talked myself out of doing surgery initially with trying Orlissa first. The endometriosis specialist talked me into Orlissa though, once again hearing that surgery is last resort. Orlissa initially worked great for me, at the higher dose. There are two doses recommended by the FDA. You can only be on the higher dose for a certain time frame before switching to the lower dose for an additional two years. I had less pain with sex, less pain overall during my periods and in fact I stopped getting periods for a brief period of time. However once I got to the low dose, this no longer worked as well. I started to get side effects similar to when I was on birth control therefore I stopped taking this, valuing my quality of life.

I moved on and found a gynecologist at Main Line Health, Dr. Grimes, who at our first visit, immediately referred me to an endometriosis specialist, Dr. Jordan Klebanoff at Main line Health. I valued her for this as over the decades no other gynecologist would refer me to a specialist as previously mentioned. During our initial visit he listened to my entire gynecologic history, as I describe in my journey throughout this blog. He discussed options of Orlissa and laparoscopic surgery to remove the endometriosis lesions. The only way to officially diagnose endometriosis is via surgery, which is a laparoscopic procedure (through your belly button). Tissue samples are sent to pathology, which confirms the diagnosis. He requested a pelvic MRI which can sometimes show endometriosis but based on my story and symptoms he knew I had it. The MRI can see if you have Adenomyosis (endometrial tissue in the uterus) to determine if a hysterectomy would be the appropriate choice of surgery. My MRI did confirm Adenomyosis.

I came to the conclusion weighing all benefits and risks of surgery to have the laparoscopic excision surgery. I chose against a hysterectomy at the time as I was not mentally ready to say goodbye to my uterus. Dr. Klebanoff respected my decision and in fact said he would not perform a hysterectomy until I was mentally ready and accepting. Giving up my ability to become a natural mother is something I needed to process further and more deeply. I knew deep down given endometriosis my chances of having children on my own were very slim. Over the last decade, I have slowly began to process this as a possibility. It personally was harder for me not having a partner in my life since I was divorced in 2015. I have been asked if I would have a child on my own and I ultimately decided I would not. I know plenty of women who have and would but my personal love story has always been to have a partner/companion to raise a child or children. I was asked by several people if freezing my eggs were an option. Yes this was an option and I went to a fertility specialist in the city in 2019 to explore this possibility. I discussed this with my Dad, who said, “Let nature take it’s course.” That stuck with me wholeheartedly, and I decided not to freeze my eggs. I have discussed fertility issues with a series of women over the last decade. One friend recently said, “This is not talked about enough.” Society has shunned women into feeling shameful and keeping these issues private. We need to change this dynamic.

I turned 40 in May of 2022 and had my first laparoscopic surgery performed in June of 2022. Happy 40th to me! as I finally felt relieved and pain-free. I suffered for decades feeling unwell, defeated, sad, horrible mood swings, bloating, nausea, fatigue, excruciating cramps and horrible pain with sex (not my partner’s fault). The fatigue and pain took over my life and I felt trapped. This horrible disease sacrificed friendships and relationships. I was lonely. Sadly, I had not enjoyed my life to the fullest extent possible. I felt ignored. I can remember countless times complaining to all of my healthcare providers of pain and horrendous fatigue. They would say, ‘You are working too much, you exercise too much, you are not as young as you used to be.” Since when did being in your 30’s become old!! God bless my boss and coworkers as I would be bent over at my desk with a heating pad on despite decent doses of Tylenol and Naproxen. This is NOT normal nor OK! This was every month and right on time. At least I could plan and warn people ahead of time, right? I had to plan my life and any events around my period always. It took over my life and consumed me.

Sound familiar? I have talked to countless women since I began sharing my story and we all share similar stories in someway. Let’s change the dynamic and stigma behind women’s gynecologic health. Help me share my journey.

Stay tuned for the next part of my journey where I will dive into my post operative recovery in a few weeks.