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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.

My Endo Story. Part I [understanding endo]

by Julia | Jun 18, 2018 | Our Captured Life, When God Writes your Baby Story

It all kind of began around the end of 2016 when I saw an OB/GYN to see why my menstrual cycles were so severe and painful.. We did some tests and everything seemed pretty normal. He concluded that I probably have endometriosis and gave us a few options. One of the options was to perform laparoscopy surgery to see what he would find and also remove it. We however, did not feel at peace with it, something just didn’t feel right and I’m so grateful. In hindsight I can totally see it was guidance from God. So we picked another option. One of our biggest drawbacks was the chance of the endometriosis coming back n having to perform surgeries multiple times. Altho our Dr. did not put much emphasis on that and acted very confident that the surgery would be a ‘cure’ and it was not a big deal.

I did some researching in the next year and we had better insight on how to handle the pain, but it kept getting worse. I started having some pain in-between cycles, and a lot of the symptoms of endometriosis were definitely present. Fatigue and nausea at random times made my hubby think I had a blood sugar issue. But painful periods were definitely the worst, during which even with 3 Ibuprofen every 4 hours I was not able to perform the normal household duties; without them I felt like I was delirious n literally could not think straight to breathe through the pain. Hot baths, or heating pads helped some to be able to uncurl.. I also had pelvic pain especially in my left side and some bowel issues.

Fast forward to January 2018 I coincidently & divinely came in contact with a lady that had multiple endo surgeries and she answered all my hundreds of questions and explained to me the difference between removing endometriosis with ablation vs excision. Immediately it made sense to me. Through many voxer messages she became a friend to me and shared her experiences, not because she got anything out of it but just because she cared. We were becoming desperate for relief from pain, pain that is NOT normal. I did lots and lots of researching and praying. Is it too good to be true? Is this really the right path for us? We felt an incredible peace and clarity from God to pursue the excision surgery. So basically I want to share some of the insight that I gained through the process if there is anyone out there that has as many questions as I did. (Details of my specific surgery to come in Part II.)

Endometriosis (endo) is a very mystifying disease and I still struggle trying to explain it. So I’ll try to share it in plain terms and you can read more about it here and many more details here. There are many myths and explanations all over the internet but no one truly knows what causes endo or what it is exactly.

The theory that my Dr. perceives to be most accurate, and what makes the most sense to me is this: Endometriosis is when tissue (similar to endometrial-tissue, which is the lining of the uterus) grows outside of the uterus. It can form into endometriomas, fibrosis, adhesions etc, basically anywhere in your body. They think perhaps it is genetic, because they have tested babies born with it. In fact, women that have a close relative with endometriosis are 5 to 7 more likely to also have it. Generally the pain and inflammation is not a nuisance until reproductive age, however some never have any symptoms. The most common symptoms are:

Crippling period pain in people who menstruate
Abdominal pelvic pain at any time, often intractable and chronic
Bowel or urinary disorders/pain/dysfunction
Painful intercourse/penetration/sexual activity
Infertility/pregnancy loss/possible link to preterm births
Immune-related and other comorbid disorders
chronic fatigue with menstrual abnormalities
Nausea and/or vomiting
Not all persons with endometriosis will have all symptoms, and no two cases are identical.

Like I mentioned, it can be a bit of anywhere, but most commonly on or around the pelvic structures, bladder, bowels, intestines, ovaries and fallopian tubes. Very rare, but it has been found on the brain. The only way to be diagnosed is through surgery, typically a laparoscopy. Unlike what you may think it cannot be seen on ultrasounds. I did have an ultrasound to check for any endometriomas or “chocolate cysts”. Thankfully I didn’t have any of those.

The thing that saddens me the most is that 1 out of every 10 women in the US have endo, yet many remain undiagnosed. To me it seems like a confusing disease. Most regular Dr’s are not properly trained or educated about it. Many women, myself included, finally resign that it’s all ‘in my head’. But it’s not. Way too many times the pain is not looked at as a serious issue until the subject of infertility comes up. And that is just one of the symptoms. There are many women that deserve to have their case looked at and treated even if they have not been seeking infertility treatments.

There are 4 stages of endometriosis: minimal, mild, moderate, severe. However, stage was primarily developed to assess fertility and has no bearing on pain or symptoms. A person in stage 1 can suffer in the extreme while a person with stage 4 does not experience any pain (though higher stages often present with painful, fibrotic and deep disease).

Ok, so a little bit about ablation vs excision.. I debated about copying paragraph 10 from this page, but decided to keep writing in my own words to make it as plain and simple as I understand it. Basically the ablation surgery is the normal everyday surgery most of your OB/GYNs will perform. They will just go in and skim or burn off the tops of the endo, what they can see. Leaving behind the bulk of your endo and allows the subsequent adhesions to bury the remaining disease. Definitely causing you pain again in the future. Most likely the Dr will give you medication or advise diets to control the inflammation and chances of it causing pain again. Laparoscopic Excision (LAPEX) is the surgical cornerstone of any high quality approach to correctly treating the disease. LAPEX allows for endometriosis to be meticulously removed – cut out – from all areas, without damaging surrounding structures or removing otherwise healthy organs. I also firmly believe that it is not just important to find a Dr. performing excision, but find one with lots of experience, who really knows what he’s doing-his speciality. Also make sure you trust the skill of your surgeon! (more details on how & why we chose our surgeon in Part II.) So basically imagine an adhesion of endo as a huge iceberg with only 1/4 of it poking up out of the water, ablation will burn off the top 1/4 and leave the rest. Excision will remove the entire iceberg layer by layer until there is none left. With ablation you have a 40-60% chance of the endo symptoms returning in 1 year, and 80% chance that it will be back in 5 years. With excision you only have a 5-7% rate of return in 5 years.

Whew that felt like a lot of information. If you have any clarifications or comments, feel free to comment! Also stay tuned for Part II where I will be sharing about my personal experience with LAPEX by Dr. Sinervo!

If you enjoyed this post and would like to connect on a more personal level, please connect with me. Or if you need prayer, I would love to be in touch with you! 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.

Hello again

by Julia | Jun 11, 2018 | Our Captured Life

Hey hey, I decided to spend the month of May focusing on sharing from our fostering experiences on Instagram. May was Foster Care Awareness Month and I joined a group of ladies posting something everyday. So if you want to see a bit more into the depth of our journey, read the last months posts and give me a follow! 🙂

Also I have been writing out the details of my journey with Endometriosis and a glimpse into my surgery, so they should be coming soon. I can hardly believe that it’s been 11 weeks since my surgery!

One more tiny detail… I’m going to be 30 years old the end of this year, no I can’t believe it… Anyways, in my family we get to choose (& plan) what we want to do with the whole family as a celebration! We try to have the celebrations in the summer, so I picked May as the perfect month, although we ended up going on our Wedding Anniversary wknd. Planning a 3 night stay and finding lodging for 20 adults and 20 kids is no small task. At first I thought it was more of a punishment than a privilege, but it ended up being quite the success, not to mention an accomplished feeling getting it all worked out! I wanted to go to the Creation Museum and Ark Encounter. I found that General Butler State Resort Park in Carrollton, KY was perfectly between Creation Museum and Ark Encounter. We had right under an hour drive to both places. We went to the Creation Museum first on Monday and Tuesdays at the Ark. Definitely recommend doing it in that order and going during the week. Also we discovered that in the afternoon we would have had way less people at the Ark than first thing in the morning. Although we did go before school break and I am sure the summer is busy all the time! My family gave me creative gifts of cash for my birthday and I got to buy my dream- a Shark Robot Vacuum!! I’m in love with it, well almost, lol!

Enjoy 🙂