Caroline's journey with endo and to the center for endometriosis
Featuring: Caroline Wise
Interview By: Fela M'tima Dunfee
FELA: Hi Caroline! Thank you for letting me interview you. Before we talk about the CEC, tell me a bit about your endo journey before your big surgery?
Caroline: Before my most recent (and largest) surgery I had two laparoscopic excisions done by my specialist here in Pittsburg. I have had a long battle with endo and in the last year and a half it had gotten extremely out of control and I was in a very bad place. I could barely keep down food and was hospitalized twice over the summer for that reason. I also was in so much pain I could just manage going to work and coming home and getting into bed. In February i had to have my mirena removed because it was stuck in the wall of my uterus, I never really recovered from that. The pain, bleeding, cramping, and nausea were becoming too much to bear. I begged my doctor here for a hysterectomy and he refused me multiple times. I was so fed up and looking for another option when the CEC about fell into my lap. With some encouragement (Thank you Fela) I sent in my paperwork and story and decided that the CEC would be my second and ultimate opinion.
FELA: The CEC is a popular term now in the endo community, can you explain what it is for those that don't know about it?
CAROLINE: The CEC is The Center for Endometriosis based in Atlanta. It is a private practice started by endometriosis expert Dr. Albee and Dr. Kenny Sinervo, who is now head surgeon, as a place for where the gold standard in endo treatment and surgery is practiced and researched. The center is staffed by the most caring, compassionate, and helpful doctors, nurses, and employees you will ever come across. The CEC is often a second or even last resort for many of us who have tried unsuccessful treatments or had multiple previous surgeries with no improvement. The private practice works through local Atlanta hospital, Northside Hospital, to give patients top of the line care.
FELA: What type of surgery did you have and what caused you do have that specific surgery?
I had a full hysterectomy, meaning they took my uterus, cervix, and tubes, as well as an appendectomy and excision of endometriosis and adhesions. I had already been thinking that I wanted a hysterectomy, as I said my symptoms were only getting worse and really affecting things to the point where I felt I had very little quality of life. I ultimately decided on this surgery after a phone consultation with Dr. Kongasa of the CEC. Every case that is sent to them is reviewed by a doctor and then gone over with the patient. With a history of stage 4 endometriois and likely adenomyosis and having exhausted other options it was a mutual agreement that a hysterectomy was the best option.
FELA: How did you prepare mentally to get ready to travel for surgery?
CAROLINE: I actually worked up until the day before I left for surgery, in hind sight not the best of ideas, which kind of kept my anxiety at bay. I made a point of keeping a diary of my feelings before leaving, both written and a video so that I could look back on it later. I also read lots of articles/accounts of those who had been to the CEC and gone through this surgery. Talking with other women who had gone through this definitely helped as well. The last major help was my chronic illness therapy group I am in. It was great to have a place where I could share these feelings and had people who understood and who were supportive of me. I made sure to have all the travel arrangements set up down to the last detail. Including calling ahead for wheelchair service at the airport, making sure I had a suite with a kitchen, and double checking all of this a few days before leaving. I actually flew into the hurricane so I had to adjust some things.
FELA: Ugh yes, not the best timing! I remember when I went, I was so nervous about what to pack traveling out of state. What were your must have items that you're happy you brought with?
CAROLINE: I was soooo nervous about what to take! I asked around and got some advice, so thank you to those sisters. I love my creature comforts so I packed a lot haha. Obvious must haves include- medications, heating pad, comfy clothes, toiletries, comfy shoes. My personal favorite items that I brought were- my own duvet cover for the hotel comforter, my own pillow, my surgery blanket (I always take it with me to hospitals) a squatty potty!, coloring books, laptop and hdmi cord, chapstick, and dry shampoo!
My bag was definitely big and I probably could have packed less, but I wanted to make sure that I had everything I could possibly want for comfort in this strange place for the biggest surgery of my life.
FELA: Wow let me just say you were a million times more prepared than I was! What advice would you give endosisters who are debating traveling to the CEC?
CAROLINE: Haha well honestly I think talking to you and other sisters that went before me helped me to be prepared. Also I am such a spoonie that I know there are things I can not live without. My advice for other endosisters debating traveling to the CEC is DO IT! It was the best decision of my life, hands down. If/when you decide to go take what you need to feel comfortable, because it is unnerving going to a place you don't know to meet a doctor you barely know yet. However the staff at the CEC will quickly become your new family there and can help you with anything you may need and is so supportive. Northside hospital also gives you a great patient packet with toiletries and other amenities, as well as my favorite item, a water mug (super useful for keeping intake up!).
FELA: As someone who has also been to the CEC, I can contest to all of that! I am so proud of you for doing all of this, I know how scary it can be and it was obviously the best choice you could have made! What has been the most positive change in your pain post surgery?
CAROLINE: You are so welcome! I am so grateful to you for suggesting that I send my files and so happy to have gained such an amazing friend through this. Post op the biggest change in my pain has definitely been that I no longer feel the terrible cramping and gnawing pain that kept me in bed before. I still have some pain, however it no longer dictates my life and what I am doing. I am no longer waiting for the next bad thing to happen. I feel like I am taking back my life one day at a time and for that I am forever grateful to all involved in this journey. Oh and I do not miss the random horrible periods that would show up uninvited anymore!!