I was diagnosed by a regular GYN in July of 2012 and have had surgery for endometriosis every year since, including surgery last year at NYU and this year at Lenox Hill. I can definitely say there is a huge difference between seeing a specialist for endometriosis versus an inexperienced or nonspecialist. I was treated as a person, not just a diagnosis. The hospital staff knew about endo without my needing to explain it to them.
I woke up from this surgery and knew the pain I was experiencing was different from my normal endo pain. It was purely surgical pain and I was thrilled. It was an incredible feeling to know that I was better. I spent the night in the hospital and the staff was very sweet and understanding to both myself and my family.
At postop I learned about all the work that the team of surgeons did during my four hour procedure. I am so lucky to have had such a great team working on me to get me well. My mom and I were able to see pictures of my procedure and the doctor explained everything that was going on in the procedure. I was able to learn so much about my body and endometriosis at that appointment and I think mom gained a new understanding of how I had been feeling every day and why I was experiencing such high amounts of pain.
Rather than bore all of you with all of my results, I will say that endo was found again [despite a past surgeon’s ridicule for saying I thought such a thing] as well as adhesions and scar tissue. It was an extensive excision surgery that involved many techniques on various parts of my body. I am grateful for each of those techniques and each of the hands performing in the surgery as I am slowly beginning to feel like myself again.
I think the greatest way to talk about my surgery is by stating what I am now able to do as compared to what I was not able to do before surgery. As I said, I woke up feeling only surgical pain as compared to endo pain. I was walking to the bathroom and around the hospital halls on my own the night of surgery. My pain was well managed in the hospital and at home. At home I needed minimal pain medications for a few days and was able to manage on Motrin for a few days after that and on bad days. I was able to shower on my own once I came home from the hospital [day 2 postop].
At two weeks postop and with stitches removed, I was able to start doing yoga and have completely changed my diet around. I have been able to lose 12 pounds so far, in hopes of getting back to the healthier lifestyle and body that I had before my surgeries.
At 3 weeks postop I was able to wear my real jeans with minimal swelling as compared to my maternity jeans needed for my abdominal swelling that got worse throughout the day. I am not as fatigued-although I do get tired as I am still recovering. I am able to sleep through most nights and don’t need to take a nap during most of my days. While, I do still have uncomfortable days, I am feeling much better than I used to which gives me time to focus and concentrate.
Healing does not happen overnight. I felt it was important to share all the little accomplishments that I have had so far in my recovery. These accomplishments give me hope that I will get back to being myself soon.
If the opportunity to see a specialist is there-please take it. The knowledge and experience that a specialist has is unmatched by those that are not specialists in the field. It is one of the reasons that I have written about the need for endometriosis as a specialty in the past and the advocacy for excision surgery with a specialist as a main focus of Knock Out Endo. We strive to help women get the opportunity that I was lucky enough to have and to help women with this disease get their quality of life back.