My Endo Story. Part II [the logistics]

by Julia | Jun 25, 2018 | Our Captured Life, When God Writes your Baby Story

It all seemed to be happening kind of fast. I know it was God opening doors and not just incidental happenings! In short, January 13th is when I started chatting with my miracle friend. By January 31, I mailed in my 37 page case & they called and accepted it on February 27th. Had my ultrasound on March 2nd and surgery on March 26th!! It seemed like a super fast turn-around to me! Although I had been told it would be a longer wait, so I’m sure it varies..

Like I had mentioned, even though we had wanted to do the surgery, we had not felt at peace doing it with my regular OB/GYN, and didn’t know until later why that was. So when my friend told me about her experiences, she was referring to her surgery with Dr. Sinervo in Atlanta, GA. I also checked with my Creighton Model teacher who gave me a few names of NaPro surgeons that I would have trusted as well. But something about Dr Sinervo seemed right, I emailed them and they were super quick and very personable in responding, answering every little question I had. I knew it would mean we would have to travel to have my surgery, but it was well worth it to us, for me to have someone that was a super-skilled LAPEX surgeon and also very respectful of my requests. Plus also a Christian!

So after the emails and we decided to go ahead with it, I asked them for the paperwork for the Free Review Process. Which meant they could get all the info they needed without me making a trip to Atlanta. Now remember, endometriosis is not diagnosed without a surgery. So there were lots and lots and lots of questions, if I remember right I filled out about 37 pages of information. It felt overwhelming, but once I sat down to do it, it really wasn’t that bad. They suggest including a picture of you and your family to help them make it more personal, you are not just another number to The Center for Endometriosis Care! So the Dr. looks over your case and determines whether or not he thinks you have the disease and are a good candidate for surgery and he personally called me to tell me that they can help me. He explained exactly what all they would do during my surgery and made sure I understood everything. A few days later a lady followed up with scheduling the surgery. Once again, if I had any questions, they were super helpful in answering everything! They also wanted me to have an ultrasound just to check for any endometrioma, which I had done locally.

We decided to make the 5 hour road-trip and had thought we might stay at an Airbnb and take the kids along, as we needed to be in Atlanta for right around a week. But we ran into some snags and decided to get respite instead, but had no idea who?!.. Our lil miss Glitterbug ended up leaving like the week before surgery, so we just had the boys. Once again God opened some doors super fast! The day they called to schedule it, I suddenly remembered a sweet couple we met 2 years ago at a Foster Parent Awareness Sunday Service. I scrambled around to get her info and in a matter of hours, she confirmed they had no placements and would love to care for our boys! I knew it would be a great place for them and I would be able to recover so much faster. We ended up getting this cute condo for 6 nights at less than half price through Priceline. Definitely glad it was on ground floor and only a few feet from the outdoors and our vehicle.

A few years ago I had an ACL repair surgery on my knee and the whole thing was a way bigger ordeal than I thought it was going to be. So this time I decided to plan for the worst and hope that it won’t be as bad as I planned. I read every article I could get my hands on from their website, The Center for Endometriosis Care, they have an awesome informative website. I also needed to do the bowel prep, and from another cleanse I had done, I knew it would not be pleasant, so again I researched and prepared like crazy! I tried to eat mostly greens the week before surgery, especially the last few days, and drink lots. I read every suggestion and tip from this list and went shopping for everything that I thought I might need. The day of my bowel prep I drank lots of water, tea, and 64 oz of white grape juice before I ever had to start with the pills and powder, and it greatly lessened the pain as the time in the bathroom was spread out quite a bit more. Also I was so glad I got 2 different flavors of Gatorade, it really helped getting the whole 64 oz of MiraLax liquid down. Because I knew we were not going to be at home during recovery I wanted to make sure we would be able to relax and have everything I needed. The things I was most grateful for were the Fiber gummies, which I started taking the week before, and the Neosporin, tea and white grape juice. My friend suggested drinking lots of tea as soon as I can start drinking liquids after surgery. I had 3 different kinds n switched off, drinking pretty much round the clock and I had very LITTLE trouble with gas pains afterwards, which seemed to be the number one complaint from others. In case you are interested, I got the Peppermint, Smooth Move w/ Peppermint and Ginger Tea Bags. I often added honey or lemon to them. The belly band and taking walks everyday were also my best friends and provided relief, plus the walks helped a lot in not getting constipated.

I was also pretty careful to follow the diet the week after surgery. Panera Bread came to the rescue with smoothies and soups. Jello, yogurt, cottage cheese, some fruit and then mashed potatoes were a few of my favorites.

So without going into much detail about the actual surgery and the amazing Northside Hospital, I just want to quickly share what they actually found! Of course I was slightly worried with the thought of “what if they don’t even find any endometriosis”?! And I think that was my first question once I finally got to see my husband. They did a number of things, all of which I fully understood and had to repeat to every person (almost!) that I met before surgery. Yes, they did find endometriosis, stage II. All of it, along with some benign fibroids/fibrous tissue, & pelvic adhesions were successfully removed. My appendix also had some reactive changes in it, possibly from endo, and was removed as well. I thought it was interesting that the biggest endo spot was the exact place where I had the most distinct pain. Also had some removed from my bladder, everything was in very ordinary places and they didn’t have any complications. He also found I had a mild Arcuate uterus, which he cut and made normal. So basically everything they checked out was good, removed or repaired.

finally awake & in my room

I was very, very impressed with Dr. Sinervo. We actually had our phone consult with another Dr. at their clinic, but then the morning of the surgery we met with him and he explained everything again and answered any questions. He met us at the hospital before surgery and had prayer just before I got my happy ‘drink’ and everything felt really light. He said he would be the one in the operating room holding my hand as I went under anesthesia but I sure don’t remember any of it. He talked with Dan after my procedure and then personally came by once I awoke to explain how the surgery went. But even so, I was glad Dan recorded it because I couldn’t remember much!

Of course my primary question was, “Is this really going to help my pain?” I don’t remember his exact words, but basically if we could get it down to a 0 it would be a homerun, but if we can at least get it from a 10 down to a 3, it’s still a win. Which I wholeheartedly agreed. But he warned, and I found to be true for me, although every case is different, that I would very likely still have pretty bad pain for at least the next 3 cycles while everything heals and settles down. This quote from their site described it well: “New peritoneum must be generated to cover the raw area. The swelling must have time to subside. The patient’s nerve endings can’t tell the difference between endometriosis and the surgery to excise it: all they know is that something is causing them to fire, and the result can be pain.” He also said that even with my endometriosis, statistically we still had a good percent chance of getting pregnant, and surgery only increased our chances by about 20-25%. I think that was because of where my endo was located, not necessarily affecting my reproductive organs.

We got paperwork with all the details of the surgery, everything they did and removed, even a step by step report from the operating room. Just a lil whoozy, but interesting, reading how they propped me up, how they removed stuff and exactly how they cut etc..etc..

favorite leg massagers to prevent blood clots

I’m really not sure what all to say about the recovery, I was so glad we got to stay at the hospital overnight. It was pretty awful those first days and I stayed medicated as much as I could, & slept. The first time they tried to get me to walk, it was all I could do to make it to the bathroom, I got really nauseated from pain meds so they gave me something for nausea. A few hours later I could walk a tiny bit down the hallway. The main focus was to get up and walk frequently which was more difficult than I imagined but it definitely helped and got better by the day. We had to stay in the Atlanta area for 72 hours after being released and I was glad for every day before having to travel home. That first week recovery was pretty rough. By Friday I was feeling considerably better and we stopped almost every hour on the way home so it went really well.

I was able to have a follow-up at their center before heading home and then another one 2 wks later with my own Dr at home. Both of which I almost fainted.. I failed to drink enough water and I had low blood pressure. But it cleared up ok as soon as I had fresh air n water. At about 2 wks I went off the prescription pain meds as they just kept making me sick, & over the counter ones worked great. Up to that point I also got my hubby to wake me during the night with meds and crackers so I could wake up painlessly in the morning. My husband was with me the first 2 wks and my niece came to help out with the boys as I couldn’t lift them. I hardly did anything but spend time on the recliner and go on walks. It really went quite well & my brain was done with the recovery at about 3-4 weeks, but my body took more like 6 weeks. However I think my swelling/bloating took about 9 wks to fully disappear. It was definitely a surgery to recover from, but I just felt so grateful that we actually did it. All in all, it wasn’t as bad as I expected! My sweet friends brought in food and I focused on resting instead of working! I had 3 months of free return checkups at the center but thankfully didn’t need them as everything healed well. I had some random things come up, but whenever I checked with them, it was all okay and ‘normal’.

Dr. Sinervo himself!

I’m so so happy we were led to do the surgery, to come in contact and experience Dr. Sinervo. I am excited about more pain-free days to come!! Most of all, I am so grateful that God led us here and gave us a successful surgery. An amazing blessing!! A verse I carried with me and claimed to be true, NO MATTER the results of the surgery: “Because thou hast been my help, therefore in the shadow of thy wings will I rejoice!” Psalm 63:7. A success like this just makes me in awe again of God’s mighty works!

I can’t say it enuf, be your own advocate. trust your intuition. Google doesn’t even remotely tell you what you need to know, or even the truth. Your regular Dr. won’t know or be able to explain endo to you. Find people with experience, Dr.s that specialize in it. RESEARCH. For me I knew the Holy Spirit was guiding us and I am so thankful we listened and followed and not just pushed ahead with the first thing the first Dr said. The peace in moving ahead is so worth waiting for. Ask tons of questions, ask other people, do research. Don’t just assume the Dr. knows best. If it doesn’t feel right for you, then wait till it does. We knew without a doubt this was the right path for us.

Also if anyone has any questions, especially if you are considering the surgery or have experience with endometriosis, please reach out to me. I would be delighted to answer any questions or give more specifics! Email me at capturingjewels@gmail.com -Follow me on Facebook or on Instagram. To follow along on our journey and not miss any posts, subscribe to the blog or follow my blog Facebook page, not just my personal one.