Tuesday, August 18, 2015

My Journey to The CEC.

For the last few days, I've wanted to scream it from the mountaintops : I'm HOOOOMMEEEEE!

Our trip to Atlanta ended up being a more eventful and lengthy visit than we had expected. So after all of the plot twists and emotional rollercoastering that went on in the south, being home has never felt better.

Over all, our time at The Center For Endometriosis was a success. I was very impressed with The CEC's compassionate and understanding staff. It felt really incredible to walk into a doctor's office where everybody understood what I was going through. They know endo like the back of their hands and a couple of the nurses mentioned that Dr. S even performed their excision procedures at some point.

My surgery ended up being much more involved than anticipated. I ended up having an excision of endometriosis adhesions, a hysteroscopy, an appendectomy, a presacral neurectomy, and my bowels were moved! So recovery has been a more challenging and lengthy process than it was after my last lap. We ended up having to stay in Atlanta for several extra days before flying home but now we are finally back and I'm finishing recovery here in California.

The past few weeks have been one of the hardest experiences of my life but also the most rewarding. Ever since the surgery, I haven't felt any endo pain. I've had post-surgical pains, so I'm still not quite where I want to be.. but I have hope that soon I will heal and stop hurting. And then I can start living a new and improved life without endo limitations. And that is pretty damn incredible.

Those are the big updates but if you're interested in more of the details from our trip, you can continue reading below the pictures. As always, thank you so much for reading, learning about endo, following along and truly making our story a part of your own. We always feel the love and support! xo

My mom and I arrived in Atlanta two days before my surgery. We stayed at Sonesta ES Suites which I highly recommend to anyone who may be considering out of state surgery in Atlanta! It was very comfortable, accommodating, and even though it wasn't home, it felt like the next best thing.

The second day in Atlanta, everything came to fruition and we got to head to The CEC for my pre-op appointment. When we walked in, I started getting a little emotional but I was able to keep my tears from falling. All of the nurses were so welcoming and kind, and then I was called into the back and I got to meet DeeDee.

I had spoken with DeeDee on the phone the week before when I was having trouble keeping any food down and we were worried about getting to Atlanta. She had been so incredible over the phone and offered great suggestions and comfort, and when I'd thank her she kept assuring me in her sweet way, "Baby, it don't cost me nothin' to be nice! The good Lord blesses me every day so I am glad for the chance to bless others!" 

When I saw her in person and she greeted me, I asked if I could hug her and when she opened her arms and said "of course!" I started crying. I was just so thankful to be there. It's something that I've prayed for and hoped for so long… and to finally be standing there with it as my reality was overwhelming.

After a checkup, she led me and my mom into Dr. Sinervo's office. He was calm, friendly, and even mannered. We discussed all of my health issues and how he intended to fix them. Our plan was to do an excision of endometriosis, a hysteroscopy, and we talked about the possibility of the presacral neurectomy, where the nerves that transmit pain signals from the uterus to the brain are severed.

I had done a lot of research on that procedure after I was contacted by The CEC about being a candidate for it. People were very 50/50 about whether it was a good idea and I was torn between wanting to be sure I did everything I possibly could to be pain free… and not wanting to do anything too drastic. He gave me some statistics and insight into his previous experiences with it (he says he estimates he's performed about 400 of them!) and I ended up telling him that during surgery I'd let him make the decision based on what he saw.

During my examination, he diagnosed me with a moderate to severe case of Pelvic Floor Dysfunction. He explained it like this : when you're having a lot of that cramping/pelvic pain, your pelvic floor contracts and tries to keep everything from moving to stop the pain. When you've had extreme pelvic pain for a long amount of time, the pelvic floor weakens from trying to hold everything in place. So he advised me to wait about a month after surgery, then seek out a specialist for some good ol' physical therapy on my pelvic floor. I've heard from a lot of girls that it is quite unpleasant (just like most physical therapy) but that it helps over time. We will see!

After the appointment, my mom and I headed back to the hotel to start the glamorous surgery prep process, which involved drinks and pills to cleanse my body from the inside out. Unfortunately, I wound up getting super dehydrated and having horrific stomach pains around two in the morning. So my frantic mom drove a weak and writhing me to the Atlanta ER and I was admitted to the hospital. It was probably the most horrible hospital experience I've ever had - and I've had some bad ones. I was so sick from the pain medication but couldn't throw up because I had literally nothing in my body. We were being told by the nurses that I probably couldn't have my surgery the next morning which was a devastating thing to think about! Eventually I fell asleep and after that, my memories are blurry and jumbled for a few days.

Later that morning, the day of my surgery, I remember Dr. S coming into a small room I was in (turned out to be pre-op), holding my hand and asking if he could pray for me. He assured me, my mom, and Weston that he felt comfortable going ahead with the surgery and they wheeled me off.

During my procedure, as mentioned, Dr. S ended up doing a lot more than expected. He removed the endo adhesions, performed an appendectomy since my appendix was not in the best condition, did a hysteroscopy and took a uterine wall sample, moved my bowels since endo adhesions were pulling them higher than they should be, and lastly, based on the condition of my uterus, he went ahead with the presacral neurectomy.

My memories from those next few days are also choppy and dream-like.

I had a private room at the hospital and I remember getting out of bed to walk with Weston. My mom and Weston fed me applesauce. The nurses kept coming in to have me take deep breaths which was very uncomfortable. Weston slept at the hospital with me that night and my mom was back early the next morning. I remember being super happy that she brought my favorite blanket with her. The hospital staff was wonderfully kind. Everyone seemed to love their jobs - especially the girl who brought out the patient meals. She was such a sweetheart! My nurse on the second day was also recently engaged and was going to be honeymooning in California so it was nice chatting with her a bit about wedding stuff and feeling back-to-normal for a while. It was a happy distraction.

We were able to leave the hospital the second night and go back to the hotel. For the next few days I made progress! The hospital gave me a binder to wear around my stomach that helped me stand up a little straighter when I walked on our deck and helped sneezes/coughs/laughter not be quite so miserable. I was surprised by flowers, cards, and care packages that were sent to our room from sweet friends and happily decorated my room with those reminders of love and encouragement.

Weston stayed several more nights with us at the hotel before he headed back to California on Sunday. We were planning to follow shortly behind him and be home on Wednesday but on Tuesday, the morning of my post-op appointment, I woke up with horrible pain.

Near the right incision I felt an intense stabbing sensation. I couldn't walk anymore, or hardly even move. When my mom called The CEC to tell them, they insisted we do whatever possible to get me to their office. I also started having a bad reaction to the pain medication I had been taking. Again, so many moments of this day are a blur.

When we arrived at the CEC they met us in the parking lot and wheeled me up to the office in a wheelchair. They had to help me move into a chair for some tests and when Dr. S came in to see me I was in so much pain, I was almost blacking out. He explained that it could be the stitches from the appendectomy poking the wall of my pelvis, could be gas left inside me from the surgery pushing on a nerve… he wasn't quite sure. He gave me four injections - steroids, something for nausea, pain medication, and a local anesthetic. I sat there slowly feeling that numb, drugged feeling sinking through my body and I sat slumped in the chair, holding my side, feeling defeated, trying to keep my eyes open while the doctor reviewed my surgery with me.

And then Dr. S said I needed to stay in Atlanta a little while longer and my heart broke into a million pieces. I was in so much pain, missing Weston, missing my house.. I understood why it was important that I not try to get on an airplane in my condition, but I was so upset to have regressed so much the day before we were supposed to go home. With several more prescriptions, we left the office and went back to the hotel.

The next morning, my dad and brother flew in to Atlanta to help my mom take care of me which was really amazing. For the next few days it seemed like every hour I took a few steps forward and a few steps back. It was very hard to gauge progress and figure out what medicines helped, what foods I couldn't eat, how far I could walk… It was all just trial and error. It kind of felt like cracking a code. By the end of the day, we'd figure out the code and then I'd wake up the next day and the code would be entirely different.

We watched a lot of LOST (my mom is hooked, y'all) and although I never got to have any peach cobbler, I did get my summer storm one afternoon, followed by a beautiful rainbow that I could see from my window.

Four days later, we finally packed our bags and headed to the airport. I was extremely nervous to be flying when I still was having so much pain, but I was desperate to get home so I had extra incentive to stay strong and push through. My dad helped me through the airport in a wheelchair and we were able to board the plane early which was very helpful. The flight was turbulent and every time the plane would jolt, I'd feel that stabbing pain by my right incision but we finally landed at LAX and tears of joy and relief streamed down my face. A man who had been sitting next to my mom and I leaned over and said, "I don't know what you've gone through. But you're a very brave young lady. I could see it in your face how much you're hurting, but you are strong and I believe everything is going to be alright."

When we walked back into our house, I was so happy to reunite with Toby and so many sweet friends and family members had filled our home and mailbox with welcoming gifts - flowers, food, cards.. So much thoughtfulness.

Now that we've been home a few days, I'm still battling the stabbing pains but at least I've finally figured out that it IS the surgical gas pushing a nerve. During laparoscopic surgery they inflate your belly with gas so that they're able to move around and see with their camera inside. Afterward, some of that gas remains and it can cause some serious bloating and discomfort. With my first lap, I felt a lot of pain in my right shoulder from the gas for about three days after the surgery. This time, however, it's that stabbing feeling and the gas is pushing a nerve that affects my leg and back as well. So every few seconds I get this searing feeling of a knife going through my upper leg and pelvis through to the right side of my lower back. Actually, kind of comparable to certain kinds of endo pain!

All the typical gas remedies aren't helping us much : Gas X, Peppermint Tea - I walk when I can, but usually standing makes the pain much more severe. I'm also finding that my digestive system is just very thrown off by the bowels being moved, being so sick before Atlanta, being so sick IN Atlanta, and now most foods are making my stomach pretty unhappy. But every day gets a little easier and the pain seems to lessen slightly. I just have to remember that a little bit of progress is still progress and find happiness in my baby steps. :)

Thankful that this isn't endo pain that I'm feeling!
This is only temporary and I can't wait to be all better soon.
Thank you again for your care, concern, and prayers!


  1. Thanks for updating. In a way, I'm happy for you but only because it isn't Endo pain! Hoping you feel a lot better sooner than later and can't wait to see you again! Welcome back Kelle! 💛💛💛

  2. (Ugh, I just wrote a huge long comment you but wasn't signed into google :( it disappeared!!)

    Anyways, Kelle, I'm beyond thankful to have stumbled upon your Instagram when I did. I'm JennKay0612 :) As I commented there, I'm recently recovering from my second lap (1st was in 2011) & I'm finding this recovery to be more challenging as the procedure was slightly more invasive. It's been comforting to me to find someone who I can relate to AND who is so positive despite this obstacle!!!

    Thank you for sharing your experience and story! Though I've recently found a great doctor...so compassionate, caring and really trying to help me find treatment... I'll still keep the CEC in mind as I'm in the suburbs of Atlanta. I honestly had no idea it was right in my own backyard!

    I'm sorry to hear that you're still having pain! Girl, I cannot imagine flying home post op! You ARE strong! I'm so hoping that you are pain free soon! I hate the gas pains...I hope you have some relief from them soon!

    I feel like I could on and on as I'm just so thrilled to have "met you" but I'm looking forward to following your journey, hearing of your recovery & being pain free and getting to know you through your blog & Instagram!

  3. "So every few seconds I get this searing feeling of a knife going through my upper leg and pelvis through to the right side of my lower back."

    No big deal! You're just a warrior woman! I know you've still got a ways to go before you're feeling like yourself again, but I just want to say I'm so happy for you! I feel like I've said that in a lot of your comments. So...sorry for the repetition. But it's just honesty!

  4. Hi! I am having my second laparoscopy surgery to treat endometriosis on October 19th. My doctor has suggest a presacral neurectomy as well. He explained that there are minimal risks (e.g., initial symptoms with constipation/urgency to urinate); however, he said it would alleviate my pain. Have you noticed a difference since your surgery in your level of pain? I would love to have some feedback before I make my final decision! :)

    1. Hello! How exciting to have your surgery coming up! So far I have felt almost no endo pain at all! My first period after surgery was very painful, but that's expected no matter what. I'm just now starting to digest food normally again and not having pain from constipation after the PSN… I'm about 6 weeks post op. But for a lifetime of being pain free I'd say it was worth it! You want to make sure your doctor is certain that the uterus is the cause of your pain before going through with such an invasive procedure though, because if the pain is occurring outside of the uterus this won't help at all. So far my only drawback has been the stomach cramping after eating and the constipation. Everyone's body is different but if you have faith in your doctor, I'm sure they will lead you to the right decision. :) I'll be thinking of you and praying for you! Hope this surgery brings you relief, sister! xoxo

    2. Thanks so much for your reply! So glad to hear that your endo symptoms are improving after surgery! I'm sure the other symptoms with digestion will improve as well with time.

      I'm not 100% certain that the pain is being caused solely by the uterus...I do have pain that isn't midline in my pelvis (probably caused by cysts on my ovaries). I'll have to make a decision soon though, but you are right to have faith in your doctor - I am with one of the North American specialists for the second surgery, so I have to put my trust in him!

      Thanks so much for sharing your story with this blog! It has been really therapeutic reading about your journey with endo! :)

  5. Hi Kelle,
    A friend of mine shared your page today - thank you for speaking about your experiences and helping to spread awareness of this disease.

    I've been very unwell with endo for over 15 years, but only finally diagnosed when I moved to the states 2 years ago. In that time I've had 3 surgeries, been on strong pain relief most days and gone periods of months and months without being able to leave the house (apart from going to the hospital!)

    I was about to start Lupron - my Mum was really concerned about the med so scraped enough money to get me home to London to try something else first. I went to a Bio Identical Hormone Therapy clinic, basically doing the same hormone treatments as I've been on for years, but in a natural form. For whatever reason it seems to be really working. Gone from being unable to leave the house and off my head on pain meds all day and night to being able to work, go to the gym and everything, all off pain meds. Not perfect obviously, still have some issues going on - and it's still early days for me on this treatment, but thought I'd share incase it was a treatment you hadn't heard of yet - I hadn't, it isn't something most doctors seem to be acknowledging.

    Wish you all the best - I know how shit this disease can be!