‘Something’s off with your scans.’ We left in shock. This body wasn’t MINE anymore.’: Stage 4 endometriosis warrior has 2 miracle babies, ‘Kids are like having your heart on the outside of your body’

“I never expected that a viral video of how we handle our sons’ tantrums would connect with so many other parents. We have been using that ‘five minutes of fame’ to connect with, share, and help so many others, like yourself. However, so many don’t know our full story and the struggles we have had to face before that. From chronic illness, to infertility, to having a scary few days where we weren’t sure if we would lose our son. It has been a whirlwind of ups and downs and definitely hasn’t been easy. Sharing our experiences and stories to possibly help normalize and embrace the mess that is life has been an incredible journey.

It all started the first night in our new home. We didn’t expect it to include a trip to the ER. Throughout our moving day, I was dealing with quite a bit of abdomen pain that I had never felt this severely before. We were blessed to have lots of friends and family to help us move so it was easy to avoid lifting a lot. A few of them insisted I call the doctor, but I felt like I might have been over reacting. Maybe it was just bad cramps, or maybe I ate something that didn’t agree with me? I have never been a fan of doctors, so I looked for any excuse not to go and tried to shrug it off. After everyone left, I remember my mother in law and husband showing real concern for the pain I was in. I reassured them that if it was still bad by Monday, I would go to the doctors.

Sometime during the night, I decided enough was enough. I couldn’t lay down, sit, or even breathe without feelings terrible sharp pains in my lower abdomen. I woke my husband up and told him I was going to drive myself to the ER to get checked out. He gave me a hard time about wanting to go alone, and even though I was stubborn, he won in the end and drove me. I waited hours in the waiting room and kept telling him to forget it, I’d be fine. Remember that love/hate relationship with doctors I mentioned earlier? I kept downplaying my pain, even to myself. I just wanted to go home. He reminded me that if it was bad enough for me of all people to want to come to the ER in the middle of the night, then it was worth waiting to be seen.

couple sitting next to each other
Courtesy of Kayla McDowell

We were pulled back into a room after a few hours of waiting where they did all sorts of tests. After a few more hours of waiting, the doctor finally came back in to tell me that something was, in fact, amiss and I should follow up with my Obgyn once the weekend was over. When we pressed him for more information he said something looked off with my uterus scans, and that I could potentially have cancer. My husband and I left there in complete shock. How could they just say something like that and scoot you out the door like nothing had happened? They didn’t even give me a prescription for the pain or any answers as to why I could be feeling it. It was about 6 a.m.; I remember it clearly because we went to a local diner where I broke down in tears. Afraid of the unknown, still in pain and shock at the change of events. We had only been married for a couple of months, this was not what we had imagined our first year of marriage to be like.

I followed up with an Obgyn two days later. By that I point, I was in so much pain that I was shaking, sweating profusely, and talking through gritted teeth. He asked a few questions, looked at my scans for the ER, and said he believes I have Endometriosis. I had never even heard of that, but was happy he said anything but cancer. He gave me pain medicine and told me he would want to do some more invasive tests to see exactly what was happening, then told me to follow up in a week.

When I went back to his office, my pain was doing so much better that he wrote it off and said, ‘Endo pain doesn’t just come and go like that.’ He refused to do any more tests, even after I had told him the pain was still there, just not as bad as it was before. I left the office and immediately looked into a different doctor and booked with her that same week. By the time I met with her I was feeling very firm in what I was and wasn’t ok with, and decided that the only way to get answers at this point was to be a better advocate for myself. I told her everything and she wanted to do a couple tests that would include a biopsy with me awake. I really feel like that was a turning  point for finding my diagnosis. I told her that I wanted to be put under, and it didn’t matter what the ‘normal’ process was, I wouldn’t be letting them do anything otherwise. She agreed that if we did it that way, it would be best to do an explorative laparoscopy and a DNC to rule a few other things out. I agreed and we planned for it to be within the next month. I was nervous but excited to get answers concerning this pain I kept feeling.

The day of the surgery my amazing husband stayed by my side as long as possible. He had been such a trooper through it all! When I woke up from my anesthesia, I actually panicked and kept asking if he was the one that was ok. I thought that we had been in an accident. We still get a chuckle out of that when we think about it. The surgery had taken longer than expected, but they did find that I had extreme endometriosis all over my reproductive area. I was diagnosed with Stage Four Endometriosis that day. I was so loopy from the surgery that the only thing I remember after waking up and panicking are the things I see on videos that my husband took over the next 24 hours. It was a harder recovery than I ever expected, and looking back now that I have had two cesarean sections, I can say it was definitely worse than both of those recoveries. After all of that, the Doctor said to just focus on getting pregnant, since we were trying for kids, and that I would be fine. It was extremely frustrating that I felt like no one would do anything. It felt like I wasn’t being heard and that I had to just keep dealing with this pain, which again in hindsight I can say was worse than any pain I felt during labor. Some days that pain would be so bad that I would have to take off work, just to take pain meds that wouldn’t take the pain away. They would make me so tired that I could get some rest. Nothing eased it…. and we weren’t getting pregnant. I decided to start taking videos documenting some of what I was feeling. Mostly for myself so I would remember the things I was going through if the time came.

endometriosis scars post surgery
Courtesy of Kayla McDowell

About six months after my first surgery, I saw an Endometriosis specialist. My husband and I went together to the appointment with all of the pictures and information from my previous surgery. I will never forget the doctor looking at me and telling me we never would have been able to get pregnant with what he was seeing on the pictures, that the endo was up against my bowel and we would have to go back into surgery as quickly as possible to remove it. I felt so angry, but even more so I felt defeated and exhausted from it all. Exhausted from the run around with doctors, exhausted from feeling like I couldn’t live a normal life like I had before, sad and scared as it was pointed out our chances of being able to have children was put before us. We leaned on our faith and each other through it all, and went into the next surgery less than a week later, right after our first anniversary.

This surgery was 100% better than the first one I had done. The staff was amazing, and my husband advocated for me when I forgot about how sensitive I could be to anesthesia after my first surgery. They were much more prepared this time when I woke up. I remember that it was a very nice woman who looked so similar to the ice queen from Narnia. I told her that as I was going to sleep, and remember her being the first person I saw when I woke up. They were so kind and thoughtful during that whole process, and I am still grateful to this day for that. The recovery from this surgery was much easier than the first, even though they did a lot more. The did an excision surgery where they cut out as much of the Endo as possible.

woman after surgery
Courtesy of Kayla McDowell

Unfortunately, they weren’t able to remove all of it due to some of the locations and us wanting children. He still felt confident with what they were able to accomplish. They also removed my appendix since it was looking very congested. When we did our follow up with the Dr, we found out that if we would have waited even a week longer it was very possible my appendix would have burst. Knowing the level of pain I had been in for so long, I believe I would have waited longer than most to seek help for that. We counted our blessings for that, and because the endo didn’t pass through into my bowel which was a concern of his originally. He told us that I should feel pain free or quite a bit better for a few years. Imagine my surprise when not even a month later I was back with the terrible pain.

woman recovering from surgery with her dog
Courtesy of Kayla McDowell

I did another appointment with him. He said to keep trying for children, and if in six months we weren’t expecting, we could try a drug called Luprin. If you do a quick search on it, you can see why I was again feeling defeated in this. I came home that day a complete mess. I was feeling hopeless and exhausted. This body didn’t feel like mine anymore. I kept reminding myself that so many others had it worse, but it was still difficult finding ways to cope through it all when it was an invisible disease. I looked fine on the outside, and we tried to smile through as much as possible, but on the inside I was struggling more than ever. I decided to make an email address for our future baby that day. The baby I truly felt we would be blessed with one day. When I would start getting down about our chances of starting a family or we would get more bad news, I would send an email to the account. It was a little piece of something that I felt like I had control over during a time where I really had none.

We were referred to a fertility clinic to see what our options would be for children and if they could help with any of the lingering and growing endo pains I was feeling. We went into the appointment knowing I would not be ok with IVF. I had already gone through enough with my body, and knew I couldn’t take on the physical or mental load that comes with that process. One of the options they gave us was to try the drug Luprin, which our endo specialist had mentioned. I was terrified to try it after being that told about the terrible side effects. The fertility doctor reassured me he would help through any of the hormonal issues which came from it, and we hesitantly agreed to give it a try. I knew it wasn’t something I wanted to do, but felt like we were out of options. We got in the car and I told my husband my doubts. Not even a block away from the office we got a call that with insurance, the prescription would be $600 for one dose. I told my husband that clearly that was God’s way of giving me the ‘out’ I so desperately wanted. I called the doctor back and we went a different direction. We were scheduled for a couple more tests, as a couple, to see what options we had for pregnancy.

One of the most intrusive tests I had done while being awake was one I’m sure my husband will never forget. I was able to have him come back with me, and even though I was in an extreme amount of pain during it, he held my hand and then almost passed out. I remember seeing the concern on his face and him lose color. I decided to try and hold it together for him, and after the procedure was over we joked about him almost passing out. It helped to lighten the tension and mood in the room. It was all so much more emotionally taxing than I ever could have expected. I went to get changed and sat there for quite some time thinking about all the adventures we had before we got married. We went on trips and loved to travel together, we hunted and went fishing. We pushed each other to try new things and had so much fun together. How did it all come to this so quickly? We stayed positive through so much of it, and tried to joke through the tears. But it was so much harder than people around me believed it to be. I started to find that when it came to an invisible disease, or even just women issues in general, a lot of people didn’t talk about it. You could be labeled as being dramatic, and doctors would disregard what you were really feeling.

After multiple tests on both of us, we were told we only had a three percent chance of being able to get pregnant, even with their help. We decided to push for a less invasive procedure called IUI even though we knew our chances were so low. I went in earlier than I told my husband for bloodwork after getting a negative test result at home. I guess I was hoping that if it had actually worked, I could still surprise him with the results.  To the amazement of everyone, the first round worked! I got the call at work and was in complete disbelief! I wish I had some epic story on how I told my husband, but I was too excited and told him that night as soon as he came home from work.

The pregnancy wasn’t all rainbows and butterflies as I still had pain. However, it was so much better than it had been! What I didn’t expect was how nervous and worried I felt. I thought I would only feel joy, but I was so afraid of losing the baby that it took some time for me to accept it all. Once baby was moving, a lot of those worries went away. The day that he was born was filled with so much emotion that it’s hard to describe it all. I was eight cm dilated when we got to the hospital and shortly after my body began pushing without me asking it to and without an epidural. They had never talked about that in birthing class!

I ended up bleeding more than they liked, and his heart rate was low, so we ended up having an emergency caesarian. I remember it being a no brainer on doing it since that was best for both of us, but I couldn’t help but be concerned. I was so close to having him naturally and didn’t want the scar tissue that I knew would come from it. Think of Endometriosis as a sticky tar inside your body that can bind organs and tissue together. It gets worse around scar tissue, so that’s where my concern came from at that time.

We were blessed  with our very beautiful baby boy, Levi, not long after. We were told he had the cord wrapped around his neck twice and were even more grateful for the peace we had about getting the caesarian done. Even though I was very disoriented from the drugs used during the procedure, I remember crying to my husband that, ‘I’m a mommy.’ He was the most beautiful baby I had ever seen! I felt so much relief in the coming days. My pain and recovery was better than anything I had experienced with any of my endo surgeries, and we were blessed with such a sweet, handsome little fella! It was more than I ever could have dreamed.

woman with her newborn son
Courtesy of Kayla McDowell

As we started to find our new normal, I found that from all the new hormones, my endo pain was very minimal! I enjoyed every second of that and took full advantage of feeling somewhat normal physically again. I did struggle with postpartum depression, however I had great care with my follow up appointments to make sure I was taken care of during that time.

As we were approaching Levi’s first birthday, we were shocked to find out we were pregnant again! Not only were we able to have Levi but now we would be expecting our second little miracle baby. This pregnancy was actually more difficult for me, though. A few months into it, we were struck with an event that almost changed our lives forever. Levi was diagnosed with virus called RSV. He woke us up in the middle of the night having non-stop seizures. I will never forget the sound he was making as I rushed to his room and started yelling for my husband to call 911. He was unresponsive. I yelled at my husband to get to the car and he rushed us to the hospital close by. I remember practically throwing him at these two large men waiting at the doors for us. All I could keep asking was if he was going to die. His seizing wouldn’t stop and they had to have him flown to another hospital that was better prepared to deal with what was going on. I was a mess, but remember telling the one young lady that kids are still worth it. ‘It’s like having your heart on the outside of your body, walking around.’ We got to see him before they left, he was covered in wires, IVs and had in a breathing tube. It was a horrible sight, but I was glad they were sending him to a place where he would be well cared for.

woman holding her son with her husband by her
Courtesy of Kayla McDowell

The next five days were spent in the hospital. I never left his side, and my husband only left once for work. We had family and friends who helped make such a terrible time a bit easier. We pulled through it all together, and it made us even more aware to not take things for granted; it can all change in the blink of an eye. Little Levi was such a champ through it all! He was mostly smiles unless the pain was bad- he has always been such a happy boy! Nurses even commented on how well he did with taking his medicine and staying cheery through it all.

Throughout my second pregnancy, I kept having massive amounts of pain in a very specific area. Every time I pointed it out, it would get disregarded. When I think back on moments like this, I still find myself frustrated at the lack of support women sometimes receive from the medical world. I ended up having to have another cesarean. This time, I was extremely relieved because of the pain I was feeling during my pregnancy. I knew something wasn’t right. Once they started, they said I had an adhesion from the top of my uterus all the way down into my pelvic region, most likely caused from my previous surgery and endometriosis. On top of that, they had to lower the table and really pull this baby out since he was so low already. When we heard him cry, we felt immediate relief.

Another boy, our sweet baby Jonah! We were so happy Levi would have a brother. A couple minutes later, they told us they would have to send him to the NICU for his breathing. I didn’t even get to hold him, just look at him and he was off. After they finished taking care of me and enough time passed, I was able to hold him for five minutes. I didn’t want to let go of him, but they reassured me that he should be able to come back to our room sometime that night or, at the latest, the next morning. They just wanted to keep him for a bit. It still tears me up every time I see NICU babies. Those mommas are so strong and so tough to endure all that they do, especially when they have to leave their little ones.

He was back with us later that night and all was well. I was having a bit more pain during this recovery, but nothing compared to what I had dealt with in the past with my endo. We transitioned into being a family of four and loved it! The boys adored each other and still do. Levi has been doing an amazing job as a big brother, and Jonah is all about his brother. He did give me a run for my money for quite some time when it came to sleeping, but we always joke that it’s the stubborn redhead gene in him.

woman with her two sons
Courtesy of Kayla McDowell

At my six week follow up, I was talking with my doctor where it was pointed out that she was concerned with my postpartum depression. I was so busy focusing on my children and home that I neglected to take care of myself like I should have been. I wish I could say that we got things cleared up that day, but it didn’t. Mental health is so important, especially for new moms, even if it’s the second or third baby.  I went home that day, got busy with kids, busy with life and all things of being a mom to two under two. After months of going down hill emotionally, I hit my all time low. It was a very hard and confusing time for me and my husband. We weren’t sure what to do, but together we started to pick up the pieces. I started to take better care of myself. I saw a physical therapist for pain and still do for some of my pelvic floor problems. I went on a medication to help with the horrible depression I fell into and started talking with a therapist. I hadn’t had time to slow down and think about all the trauma we had been through over those couple of years. I always felt guilt and would tell myself things like, ‘So many people out there have it worse.’

In November of last year, while hitting our biggest lockdown due to covid, I was looking for a new outlet and took to Tiktok. I loved watching all the fun videos people made and was happy for the distraction! I decided I wanted to make some as well and before long we went viral on how to handle toddler tantrums. I never expected it! We had Six million views in a couple of days, and people started following me to get my input on how to help with all things kids and family life. We were featured on many different platforms, blogs, and even the Today Show. I couldn’t help but try and point out that we aren’t perfect, and things aren’t always as easy as a 30 second video makes it look. However, it’s a process that works for us and I know can work for others when they are having a hard time during that phase. I started using the platform to reach other moms and normalize the difficulties that come with parenthood. And normalize what real family life looks like, which can sometimes be messy. It doesn’t mean we don’t love our children or being moms. The mom guilt can be bad enough, but when you are in a society that can sometimes downplay the hardships that moms have, it can be downright depressing!

To normalize that we are people outside of being moms and wives. To acknowledge the challenges that come with both and how we can make it through it. Sometimes I look in the mirror and don’t even recognize the person I’m looking at. My body doesn’t feel like mine anymore, my thoughts can linger on negative things longer than they would before. I’m exhausted, and sometimes feel so lonely even though I’m never really alone. To let other moms know that this is normal and so many people feel that way, even women that struggled to get pregnant. It doesn’t make you less of a mother or women to feel that way. The guilt we carry as mothers for ‘not having it all together’ can be overwhelming in itself sometimes. The more we talk about it, the more we share the good, bad and ugly, the more we can come together and accept that our best is MORE than enough.

family portrait outside with two kids
Courtesy of Kayla McDowell

I took a break from social media after my nana passed away in January to focus on my family and mental health again. However I plan on coming back over the next couple weeks to continue to create relatable content for moms and women. To give us a voice when we sometimes don’t feel heard. To raise awareness on endometriosis, normalize the mess that life and being a mom can be, and show some different techniques we use to help our kids be the best they can be through these scary times we are facing as a country. We don’t always fit the mold, but we have been getting through some really crazy things and feel blessed that God is using us to reach so many others and help them through our experiences and stories.”

This story was submitted to Love What Matters by Kayla McDowell from Pennsylvania. You can follow their journey on Instagram and Tiktok. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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