In 2016 I had excision surgery to remove Stage 4 endometriosis at the Center for Endometriosis Care with Dr. Ken Sinervo. I had endo/adhesions removed from the surface of my bowels and bladder, pelvic walls, ovaries (pretty much my entire abdominal cavity) and my diaphragm. I also had my appendix removed and chocolate cysts from both ovaries. If you are thinking about going to the CEC or already have a surgery scheduled, you are in great hands. Here is my personal experience and some advice to you.
I know that many people travel from across the country, and even across the world to have surgery with Dr. Sinervo. Wherever you are traveling from, know that you are making a smart and very brave decision to take control of your health and your quality of life. You should be proud of yourself for getting here!
When I first received a call from Dr. Kongoasa after sending in my application to the CEC, I felt like I was dreaming. I could not believe that it was actually happening; it almost felt too good to be true. All these years of suffering without answers would possibly come to an end soon. It was the first time I felt like things might turn around for me with this horrendous disease.
After talking to Dr. Kongoasa about my case and the procedures expected for my surgery, I started communicating with Beth, who was quick to answer any questions I had and easy to get in touch with. From there I spoke with Jean, the scheduler, who provided me with so much useful information and advice. Everyone at this office is not only kind and caring, but very competent and productive.
Once my surgery was scheduled I started looking for accommodations for my fiance Hayden, mother and I during our stay in Atlanta. I have to say, the thought of getting through a surgery away from the comfort of my own home made me uneasy. But it actually ended up being quite cozy and comfortable. I think this was because of my decision to book a townhouse with HomeAway instead of staying at a hotel. You can find small houses on HomeAway or Airbnb for practically the same price as the hotel discounts. Although you may not be as close to the CEC or Northside Hospital (I found 15 minutes to be the average distance in Marietta, GA) it is worth it to have a kitchen, several bathrooms and bedrooms – and a backyard with some privacy. The extra ten minutes of driving was absolutely worth it and not a problem at all. I have booked through HomeAway many times, and my best advice for having a great experience is to go by the reviews (reviewer’s do not lie!) and use the area they have pinned on the map to Google Earth the general location.
With my surgery being on the 18th and pre-op on the 17th, we drove down and arrived the evening of the 16th and that worked out great. I recommend staying at least three or four nights after surgery before heading home. I slept for most of our seven hour drive home on Monday afternoon, following my Friday surgery.
On our way to my pre-op I was very anxious to meet Dr. Sinervo for the first time. But all the nerves went away as soon as I walked in and was greeted by the staff. We only waited a few short minutes before being taken back for some blood tests, a physical exam and my consultation with Sinervo. He was patient, funny and very informative. I left without having any questions unanswered – and that’s a first for me, and most Endo patients. Am I right?
Seriously, nothing could have prepared me for this experience. I really underestimated this and I wish I had known more before going into it. First, if you have Interstitial Cystitis, the gatorade may irritate it. If you have a remedy that works for your IC pain, be sure to use it. Drink plenty of water as well. I would ask the doctor about using a 1:1 ratio of water and gatorade. I suffer with bladder retention and pain, but past cystoscopies showed no signs of IC. So going into this I thought my bladder Endo was causing the problems. But Sinervo did find a bad case of IC during his Cystoscopy.
They tell you to eat light a few days prior to the prep. My bowels cleared out really fast and I believe it was because I cut out red meat and dairy for three days before.
Pooping out water or being confined to the toilet wasn’t the hard part of this experience. For me, it was the nausea,puking and chills. USE YOUR PHENERGAN SUPPOSITORY at the first feeling of nausea. That is given to you in your bowel kit. I did not know I was allowed to use it before the surgery, but found out after the fact from the nurse. Also, smelling fresh scents like fresh towels from the dryer helped calm my nausea.
Things to bring:
- Organic Baby Wipes (Honest Brand or Seventh Generation)
- Gas X for after surgery gas pains
- Colace for after surgery
- Prep H (If you are prone to Hemorrhoids)
The morning of surgery was rough because I was still feeling the effects from the bowel prep. But it wasn’t long until I was back in pre-op with the nurses and on some “happy” drugs. Hayden and my mom got to come visit me one at a time about an hour before I went back. During that time, Dr. Sinervo also came back to see me and said a prayer.
During my past surgeries I have been asleep before making it to the operating room, but not this time. Instead, Dr. Sinervo sat beside me – along with other nurses, surgeons and the anesthesiologist – to hold my hand tight and help me imagine sitting in one of those huts in Tahiti until I fell asleep. It was hands down the most kind thing a doctor has ever done for me. And I didn’t even have to ask or express that I was anxious.
Things to bring: All the sweat pants you own, warm socks and the most comfy granny panties you can find.
After my four hour surgery was over, I opened my sleepy eyes and saw Dr. Sinervo in the room. I was not even close to being responsive so I imagine he had to head out for his next surgery. I do not know how I remember this, but I do! Doctor Kongoasa ended up checking on me that night or the next morning, I cannot remember.
Pretty soon after waking up I saw Hayden and my mom. I felt extremely comfortable and pain-free. Hayden sent pictures to friends and family and everyone kept saying how great I looked for just coming out of surgery. And I have to admit, I looked much better than I did after my previous surgery – and still do.
I spent my first night recovering in the hospital with a catheter (due to my history of retention) and I am so glad I did. This way, Hayden and my mom got a good nights sleep at our HomeAway to better prepare for taking care of me for the next three days. The nurses at Northside were absolutely amazing and responsive. They took great care of me and I felt minimal pain through the night. The hospital bed was so comfortable, I felt right at home! You won’t feel like it, but make sure you walk around when the nurses ask you to. It will help very much with the gas pain.
The next morning they took out the catheter to see if I could urinate on my own before leaving. Not to my surprise, I wasn’t able to. So they put a catheter back in and I was discharged.
As soon as I got to our HomeAway I started taking a 50mg Colace each time I took 1 pain killer. This saved me from severe constipation in the long run. Colace is very gentle and does not cause stomach aches. Please take this as soon as you get home. Gas X also helped the gas. Eating after surgery is not easy, so start off small and light. I recommend soup and saltines.
Lastly, get up and walk around every hour or two to fight the gas. This might be TMI, but sitting on the toilet for a while also helped me pass most of the gas. When you lay down in bed it just seems to sit there in your stomach.
After two days at our cozy HomeAway, we went back to the CEC for my post-op appointment. My catheter was removed and I was finally able to urinate on my own. Dr. Sinervo went over the photos from my surgery and what was done. I hugged him and thanked him – and maybe cried a little…
If you are driving, I recommend stopping for bathroom breaks at hotels or restaurants instead of rest stops, as they are a much cleaner option for someone post surgery.
1 Week Post-Op
I am getting a little better every day. For the last few days I have been able to stand up straight. Although, I think I was able to all along but just scared. I am showering without assistance and able to get into bed on my own now. I still need help putting on pants though.
As for pain, my hips and back are bit achy from being in bed so much, and I have some twinges of pain in my ovaries and where my appendix was removed. Fish Oil has helped so much with my inflammation, but I take Advil when I need to.
I learned a lot of Do’s and Dont’s after my first lap to remove Endometriosis and it has helped me a lot this time around. Here is my best advice to you:
- Take Colace until you are able to have your first regular BM.
- Avoid stairs and over-doing it. You may be feeling fantastic, but trust me, one wrong move and you will be recovering even longer.
- Eat small meals, very often. I say this because it is easy to lose too much weight after surgery. But eating too much at once will cause gas.
- Avoid dairy, it will only contribute to the gas.
- Take Fish Oil for inflammation.
- Take Magnesium for pelvic floor muscle spasms.
- Drink Corn Silk tea if you have irritated your IC. Buy fresh organic corn and put 2 tbsp of the silk into 2 cups boiling water, let steep for 15 minutes. It helps calm inflammation of the bladder and worked wonders for me.
- Take a great Probiotic. I recommend Florastor to prevent yeast infections from the antibiotic.
- Walk around slowly, as much as you can.
- If you are tired – just sleep. No matter what time it is or how much you’ve slept already, listen to your body. I have been napping twice a day and going to bed around 8pm. I wouldn’t let myself do this during my last recovery but wish I had.
- Most importantly: Let others help you. Don’t reach down to get that cooking pot if someone else can, or try to cook dinner just yet. Let someone help you get your legs into bed and wash your feet in the shower. It is worth it in the long run.
- Do not panic over every ache and pain. You had a lot of work done and your insides have a long recovery ahead! Try to take deep breathes often and meditate if possible. This will help with inflammation by lowering stress and anxiety.
2.5 MONTH UPDATE:
Overall I am doing well, but I still have a long way to go. I kind of had it in my head that at 3 months I’d be running and climbing mountains but Dr. Sinervo reassured me that my surgery was extensive and it’s normal to have a longer recovery than others (could be even 6 months to a year before I feel the full benefits). I start Pelvic Floor Therapy Monday. I know it will uncomfortable but I need to push through it, because my pf dysfunction is awful. Some days I feel great and others I feel like I’ll never heal. It’s certainly been a rollercoaster. Back pain and hip pain for me has been tough from lack of exercise. My advice to anyone is to not compare yourself to others. Everyone will heal at there own pace. Hoping I’m feeling good as new in the near future. Will keep updating.
5 months Post – Op
Hallelujah ! I am finally feeling signifant benefits from the surgery. It was not until month 4 that my period became significantly less painful. Before excision, I’d be hunched over, laying in bed, and taking three Advil every four hours on my period. Now, I can get through a period with 2 Advil – just one time on day two (my roughest day). By month 5 my flow lightened up a lot.
My daily pains are much less frequent. They all are related to my pelvic floor spasms and IC rather than endometriosis. However, I still have bloating and some endo belly – but I’d take that over sharp adhesion pains any day.
I ended up tearing my right hip labrum while in stirrups during surgery due to FAI condition. So I am 3 weeks post-op from surgery to repair my hip. Not easy, but easier of a recovery than the excision surgery. Now that my hip pain is improving, everything else seems to be improving.
Over all, I get a little better every month thanks to physical therapy for my pelvis and hips. I am excited to feel more improvements as time goes on.
Good luck to anyone having excision surgery! Feel free to comment below or contact me with questions.