I am not a doctor or medical professional, this is simply my story, my thoughts and my experience.
The past four years have been an absolute roller coaster thanks to endometriosis. Most people with endometriosis are diagnosed in their 20’s or it’s discovered if they struggle with infertility, not me, my story did not begin until I was 37.
I had always had painful cramps and heavy periods but just thought that was normal. I did not have any issues getting pregnant with either child. I had two normal pregnancies, so endometriosis was never on my radar.
I have always been a pretty healthy eater. I have never been over weight but like most moms just wanting to get to my pre-baby weight, and always trying the latest fad diets, paleo, keto, mediterranean, carb cycling, intermittent fasting, and eating all the things in between.
I have also always been pretty athletic. I love working out. It was my escape and happy place. I always hopped around trying new workouts, from cardio hiit classes to my favorite barre workout. I would try to workout 4-5 days a week, and if I missed a day, I would try to work harder the next day.
My weight was always up and down about 5 lbs. I was also the girl who could eat anything in college and never gain weight until after kids when everything changed. I was never really overweight but in my mind I was not who I was, so I was always trying to get to that goal on the scale. I share all this to say I know my hormones were all over the place.
In December 2019, a few days before Christmas, I woke up in extreme pain around my left side towards my lower back. I consider myself pretty tough. I’ve had 2 kids and have a pretty high pain tolerance. That morning I was in so much pain, no amount of Motrin could touch it, followed by feeling nauseous and throwing up, I had never felt anything like this. I tried to tough it our during the day, but could not get comfortable. Finally my husband, Jason insisted on me going to the ER. I had also consulted my mom who has been an Labor & Delivery/OB/GYN nurse for over 30 years. Her first thought was that I had a kidney stone because of where my pain was located. I’ve had never had a kidney stone but heard they were awful.
When I arrived at the ER they did an ultrasound where they were able to see a cyst located in between my left ovary and ureter. However they were not sure if I had a kidney stone and that was causing the pain or if it was a cyst causing the pain. In the ER I was seen by an ob/gyn who recommended a urologist see me, only for the urologist suggest me see my ob/gyn. So after a night of toradol, I was sent home with pain medication and told to just follow up with my doctor.
Keep in mind this was a few days before Christmas so there was no way to get in with my doctors before January. Christmas morning I woke up with extreme pain again, so bad I ended up back in the ER after hours of not getting any relief. Once again after a day at the ER and more pain medication I finally went home.
I followed up with my ob/gyn and a urologist. Because of the location of the cyst no one was really sure who was going to handle it. My ob/gyn referred me to a gyn oncologist because she was not sure about the cyst. So now I was in pain and scared after learning it may be a cancerous cyst.
January 2020 my gyn oncologist had prepared me for a full hysterectomy, depending on what kind of cyst she found around my left ovary. So I went under not exactly sure what to expect and woke up with her explaining that she did not remove anything except the cyst that was non cancerous (thank you Jesus!) and discovered that I was covered in endometriosis.
If you are not familiar with endometriosis, it’s where tissue grows outside of your uterus, and usually spreads around your ovaries and tubes, causing pain, especially if it attaches to nerves. Endometriosis does not show up on an ultrasound and can only be diagnosed laparoscopically.
After 6 weeks of healing from laparoscopic surgery I thought everything would be over. My regular ob/gyn recommended birth control to control my endometriosis. After trying 3 different birth controls over 6 months, gaining 10 lbs, and feeling absolutely crazy in my head, I decided I couldn’t do it anymore. I should add this was all during spring of 2020, so there were also a few other thing going on in the world that would make anyone feel crazy and depressed.
Life continued on until summer 2021 when I started waking up again in extreme pain. Once again I couldn’t get comfortable, I would pace, lie in the fetal position, lay on the floor stretching, anything to get relief. Nothing seemed to help.
In August I went to see a new gynecologist who recommended a hysterectomy if I was wanting to avoid birth control. So we scheduled a hysterectomy for October 2021. One thing you should know about me is I walk the line with medicine and homeopath. I feel there are often alternatives available before jumping into prescriptions or surgery, and I’m always wanting to know the root of the cause. But sometimes there is real need for doctors help, like with my daughter Ella and her medical story. You can read it here.
A fews days after scheduling the surgery and spending multiple nights in extreme pain, I was talking with my friend Kristen Pardue, a nutritionist who specializes in multiple things including GI Mapping. She asked me to try GI Mapping first and see if it helped because so many autoimmune diseases are related to the gut. I was willing to try anything to avoid surgery, so I began her protocol after some testing. A couple of things that helped was her lymphatic detox and parasite cleanse. Within a month my pain had gone down, and after 3 months I had zero pain.
So after a few months without any pain I decided to cancel my surgery. We had also taken in a newborn foster baby, which is another story, but this was the classic story of a mom who was so busy taking care of everyone else there really was not time for a surgery. I was also going to Accupuncture once a week.
I was pretty strict on my diet avoiding gluten and dairy whenever possible. I limited my alcohol intake and was eating as clean of a diet as possible. With a newborn in tow I had little to no time to work out, so my gym days were over, but I somehow managed to lose about 10 pounds. I truly felt my best and felt like everything was because I finally cleaned up my gut.
Fast forward to May 2022 when Mother’s Day weekend I did not sleep after being up all night and back in extreme pain. If I’m honest this past Mother’s Day was probably one of the hardest days of my life. The baby who had been with us for almost 8 months had just gone back to his mom so my heart was in a thousand pieces, and I had not slept in two nights from pain, but managed to find a way to put on a smile to go to my mother in laws. I remember sitting outside and trying not to burst into tears from physical pain from endometriosis and a shattered heart missing my little buddy.
I was in so much pain that day I ended up getting another IV with pain medicine just to find relief. I should add I’m also one who does not like pain medicine, I don’t like the way it makes me feel or how I’m always backed up the following day. So I was frustrated to be back in pain again.
The following month it was the same, more extreme pain. Nights of not sleeping. Up and down just trying to find relief. And if I’m not sleeping, Jason wasn’t sleeping, so our house was a lot of fun. We were also in the middle of kitchen renovation, so no stress at all.
I often wonder what changed, how did I go from zero pain to extreme pain. I’m not sure if after time my cheat meals of desserts and carbs finally caught up with my gut or the stress from handing a baby over with a kitchen remodel inflamed all the endometriosis.
So back to the doctor I go. This time knowing I need a change. Did I want the surgery, no, but was I willing to try, yes. I was hoping she would be able to just clean out all the endometriosis and leave what she could, to be honest I knew we were not having any more children but I did not want to be on hormone replacements.
Five days after my 40th birthday I went in for my surgery. She was able to leave my right ovary but said my left side was covered in endometriosis, so she removed everything (uterus and tubes) except my right ovary.
The first couple of days were the hardest. Today I’m 10 days post op and while I feel like I’m getting better everyday, I’m still limited to what I can do. For example after 10 minutes of standing, I’m exhausted and have to sit down. I’ve always been busy and on the go, so rest is hard for me.
I do plan to continue healing my gut, and will probably do some sort of detox after having anesthesia, and hope to continue eating as healthy as I can, but still enjoy life along the way.
I know every case is different and everyone is different. If you are struggling with endometriosis I’m not sure if there is a real solution but I just wanted to share my journey with the hope that maybe it will help someone. I do feel like GI Mapping and healing your gut is huge and can help you along the way.
Do I recommend a hysterectomy….ask me in a few months!
