2019
It was like my body went into full panic mode. I wasn’t getting a period for months at a time, my weight ramped back up, and now I was frequenting the ER/OB office every month due to unbearable pain. The biggest concern was that the ultrasounds weren’t showing large cyst ruptures or anything that would explain these intense pain flares. I thought I was starting to lose my mind. I did everything I could to feel better. I quit smoking. I cut out carbs, sugar, and dairy. I worked out as much as I could, and started taking supplements to promote fertility and ovulation and an overall healthier lifestyle. Nothing was working and it was only getting worse.
To add salt to the wound, in June my group of doctors let me know that unfortunately there was nothing more they could do for me. Looking back, I understand and appreciate them doing this instead of stringing me along; but none the less it was a hard pill to swallow. I felt like they were giving up on me, and I was at my absolute lowest point. For 2-3 weeks of each month I could barely get off the couch or out of bed due to the consistent crippling pain, and I had no idea where to turn.
I knew I could either drown in my own self-pity and just give up, or I could do something about this. If you know me, then you know that the self-pity route really isn’t my jam; so I started doing research. I decided to just start going down a list of specialists in my area, and if that didn’t work, I was planning to go to the Mayo clinic.
The first specialist I went to asked me if endometriosis was ever discussed. It sounded familiar, and looking back at my file it was brought up briefly years ago, but there was no further discussion or look into it. She explained what endometriosis was, and recommended we do an exploratory lap with fulguration if the disease was found. First doctor, first try, and I was already getting some better answers and plan of action, so without really thinking I jumped right in. I was genuinely hopeful for the first time in a while. I was already in pain constantly so a little more to feel better was fine in my book. We scheduled my surgery for Halloween of 2019.
I now had a direction and the start of a plan. I was also VERY fortunate to have a best friend who was a nurse and was also very familiar with reproductive issues (she also suffers from PCOS). When I told her what the doctor has said, she introduced me to a couple of very helpful online forums, including the Nancy’s Nook Endometriosis Education page. This forum was very impressive. It was not your typical support page, instead it was dedicated to real and helpful information from doctors and nurses. I began reading every file I could about symptoms, diagnosis processes, and methods of treatment. I very quickly learned that fulguration and ablation were not the best methods of treatment for endometriosis; and that instead I should be looking for someone that specializes in endometriosis excision. This page also provided a list of recommended excision surgeons, and lucky enough, one of the surgeons was only a half hour away from me. I immediately made an appointment to see him, and postponed my other exploratory surgery.
The first thing this new specialist did was request all of my records be sent over prior to our meeting. It was a daunting 110 page file from the past 5 years, so I had to go and physically drop a printed copy off. When I saw him two weeks later we began discussing my history. He had actually read it all, which to me was very surprising and encouraging. He explained that he would definitely consider endometriosis as a diagnosis, but he asked if I would be comfortable to do a physical exam to explore this further and I agreed. Not going to lie, it was brutal. He pressed on every part inside of me that swelled with hot molten lava pain. I turned beat red and nearly sweat through my shirt; I squeezed my husbands hand so tight as he wiped the tears off my face. The doctor could see my pain and was very apologetic, and he explained what he was doing and why through each sorry. He was trying to pinpoint in my pelvis what was affected by the endo, and my winces and moans were showing him exactly where it was. Once he was done he gave me ample time to get dressed and recover from the exam, and then we discussed that the next step would be an exploratory lap with excision. This was a huge step for me and I was beginning to be hopeful again. We got the surgery scheduled for December, and I cancelled the other one. I just had to make it 2 more months.
Unfortunately, there was another ER visit in between the appointment and my surgery due to extreme pain. I told them my history and that I am due for exploratory lap for endometriosis. I thought this information would be helpful, but it was like in the moment that I said “endometriosis” a switch flipped and I was no longer taken seriously. Even my husband started to get extremely pissed at how I was being treated, as it was clear that they were pushing off giving me any medication that would help relieve my pain. After a couple of hours in a hospital bed moaning in pain, miserable, and consistently being dismissed, I had a panic attack in front of the doctor. Full blown meltdown, and it was extremely embarrassing that it took me crying hysterically to be taken seriously, and for him to give me something to relieve my pain. You would have thought that the invasive pelvic exam and internal ultrasound would be humiliating and horrible enough, but I guess not. It was unreal.
Jump forward a few weeks to surgery day. I was nervous of course, but I was honestly more excited. This was a huge step towards getting my life back. The surgery took about 3 hours and I received a confirmed diagnosis for endometriosis. The endometriosis was found and removed from the right and left pelvic sidewalls as well as the Posterior cul-de-sac region. He told me that a lot of tissue was removed but he was very confident that he removed it all. I was SO READY to start recovery.
4 days later I started to experience a lot of heavy pressure and sharp pain in my lower left abdomen. It was much worse than the post op pain I had been feeling and was getting increasingly worse each hour. It got to the point that I couldn’t even move without yelling in pain. Something was seriously wrong and I was terrified. My husband rushed me to the hospital and they took me back right away due to just having surgery a couple of days prior. I was screaming in pain at this point, as any slight move was like white hot lightning coursing through my lower left abdomen. I knew this pain. I was sent for immediate imaging and recommended to go in for emergency surgery for expectant intermittent torsion.
I couldn’t believe my luck, and I hadn’t even really begun my healing from the last surgery. I was completely defeated, but there was nothing I else I could do. All I could do was move forward from here.
2020
I decided to go back on the depo shot to prohibit any other cysts from growing for the next couple of months while I healed. The recovery was rough, and my body was not reacting as positively to the depo this time. My periods were non existent, my cystic acne flared up, and after about 2 months I was starting to feel pain consistently again.
On March 3rd (literally a week before I was set to sail on a cruise) I had a huge pain flare that sent me back to the ER. At this point I just don’t take any chances with my history. Luckily, there was “nothing” wrong. But I yet again had no explanation for the unbearable pain.
I spoke with my doctor and he recommended that I start pelvic floor physical therapy once I return from my cruise. From all of the trauma I had experienced, he expected I had pelvic floor dysfunction. I had no clue what this was, but in layman’s terms, my pelvic floor was reacting to chronic pain and inflammation by tightening to a degree that was causing additional (and sometimes excruciating) pain. Well shit, that makes sense.
Well lucky for me I returned from the cruise to a global pandemic. I went from sipping mojitos in 80 degree sunshine to the frigid Midwest air and full blown panic. Within days of returning home everything was shutting down, including all elective procedures and therapies. My doctor recommended me to use an app for physical therapy in the meantime, which was somewhat helpful, but I was still experiencing chronic pain.
In this time, like many others, I lost my job, my pain was consistent, and I wasn’t able to leave the house. Hey there depression, long time no see. It didn’t last too long though as luckily at the end of May I got my job back and was able to finally go and see a physical therapist. After just a few sessions, and daily exercises I was really starting to feel better. The physical therapist also suggested I try elimination dieting, as it sounded like some of my pain may also be gastrointestinal. With her advice, I ended up starting the FODMAP diet and I found that gluten caused me to have horrible pain flares. So I completely cut out gluten, continued my therapy, was not on any form of hormonal therapy, and I started working out and doing the Noom weight loss program. Within 2 months I found myself 30lbs down, mostly pain free, and regaining hope and confidence! The only pain I was experiencing now was with ovulation, and I could deal with the brutal pain 1 day a month, it was much better than most or every day.
In August I started to experience some really extremely bad cramping, and was feeling really sick to my stomach. I was also super exhausted, so I was afraid that I had covid. I went and got a test, which came back negative, so I scheduled an appointment with my PCP. I sat down with her and the first thing she asked me was if there was any way I could be pregnant. I laughed. I was pretty much told in the past that I would most likely need fertility treatment to get pregnant, so it just wasn’t something I would ever even consider. She started me on omeprazole as I had a history of reflux and she told me to follow up in a couple of weeks. Within those weeks the nausea just kept getting worse, and I was EXHAUSTED. I also was really irritable, which I blamed on feeling so unwell. My husband asked me if I had gotten my period yet this month and I was actually supposed to be on it at this time. It wasn’t unusual for me to skip periods though, so I didn’t think anything about it. I told him that if I didn’t get it by Tuesday I would take a test to be safe, it was currently Saturday. Tuesday rolls around, and no aunt flow, so I decided to take a test. I was still groggy from waking up when that magic little stick all of a sudden showed 2 pink lines. I started crying and ran down the stairs as fast as I could yelling for my husband. He looks at me in complete panic, and I scream “IM PREGNANT!” and his jaw dropped. Tears welled up in is eyes and he scooped me up and swung me around. I didn’t trust a single test so I made him drive me to Walgreens, where I picked up 3 more tests. I got 2 more sets of pink lines and a YES+ on the digital! This was real life, I was really pregnant! I immediately called my OB to set up my first appointment, I was only estimated at about 4 weeks, so they had me come in at 8.
That first ultrasound was pure magic. I don’t think I have ever been so happy in my life. Seeing that little sac of cells in my uterus was the most beautiful thing I had ever seen, and my husband and I cried tears of joy as we held each other and watched the screen.
For a long time, we didn’t believe we were ever going to see this, as ovulation was generally unbearable, and the baby dance wasn’t usually able to happen at the right time. Everything had fallen into place, and even though I was ridiculously sick throughout the first 6 months of my pregnancy, I would do it a million times over.
I am now 31 weeks pregnant, and expecting to see my beautiful baby boy, Dakota James, in the next 8 weeks or so. Pregnancy has also offered a well needed break from the pain I had been suffering from PCOS and Endometriosis over the past years. I am basking in the pregnancy glow and am soaking up all of the joy of putting together the nursery, taking maternity photos, and savoring every second of feeling him “wooble” in my belly.
I know my journey isn’t over, as there is no cure; but I will stay strong, and am blessed enough to tackle it with a beautiful family to support me.
Jessa
-#BikerChick, #DogMom, #BombAssWife, #MetalHead, #ProfessionalShowerSinger, #PizzaEnthusiast, #EndometriosisWarrior#PCOSFighter
Want to connect with Jessa? Check our her Endo Insta- @theendoinsideme
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