My Endometriosis Journey Thus Far

I am not one write about myself and what I feel is not a big deal, until it is a bigger problem than I realized. If I had not read another woman's story of her sister-in-law dealing with intestinal endometriosis, who knows how long it would have been before my condition was diagnosed. Hopefully my story will catch the eye of a woman (no matter if they are 13 years old or 50 years old) and make her aware of the fact that her pain is not normal.  One out of ten women in the USA are affected by Endometriosis.  It needs to be more widely researched, but recently has reached bipartisan attention in Michigan.  Copy the link below, paste it in your web browser, and read the link below for more information.

My first menstrual cycle hit when I was 11 years old. I went to my sister first who is 2.5 yrs older than me and said, "I think I am dying." Her response was, "Ohhhhhhhhh, you need to talk to Mom." My mom gave me a talk about how women's reproductive organs work and what happens during menstruation physiologically. I quickly realized that if I did not get Tylenol in me as soon as my period started, I would end up sick to the point of puking. If I did not vomit, I would be writhing in the nurse's office of my private middle school because the policy was no student could go home unless they had a fever or was visually sick (e.g. vomiting or diarrhea). Per the school's policy, the nurse could not prescribe nor administer any nonprescribed medications such as pain relievers.

Fast forward to high school, I would be stuck in the bathroom for about 10 to 15 minutes having noxious bowel movements that made the most stalwart high school girls gag and exclaim their horror! - to which I would respond, "Oh yeah, I think the girl before me blew up this stall because it smells so bad." They would voice their empathy and go on their way none the wiser. Looking back on it, it is quite amusing. However, humor aside, it was also very likely a sign that things were amiss.  

My college years did not have the bowel issues that I was used to in high school. My cramps surrounding my menstrual cycle were uncomfortable but normally Tylenol kept the pain at bay. A new symptom had started occurring though, cramping with ovulation. It normally was about a week or so from the end of my period. For a while, I thought it was just constipation, but it was too regular and eventually I figured it out with some quick google research.  

Post-college, I had started dating someone in my alumni friends group. We dated long-distance for about two years. During one of my trips to see him and spend time with his family for the holidays, I remember riding in the car with his family when I had a horrible bout of constipation out of nowhere. No position was comfortable and I just ended up having my head in my boyfriend's lap while in the fetal position. The next morning, I had not slept well and was the first one up. My morning bowel movement was unsuccessful and only resulted in mucus discharge from my anus, which struck me as odd since I had never experienced that before. From that point on, during every menstrual cycle I had would slowly over the years have more of that discharge.  

After my boyfriend proposed and I moved from Florida to Kentucky, I found a job at a small medical office employed by mostly women. Within the first year my coworkers realized that my menstrual cycles were extreme in terms of pain and were empathetic toward my plight. One referred me to a women's care clinic locally for routine OBGYN appointments. I went to them after I was married for a few months and asked if sex was normally a little bit painful. The medical professional responded affirmatively and I did not give it much thought for a while. I had not had sex before I got married and figured my husband and I would get better at having sex as time progressed.

My husband and I had initially planned on having our first kid about a year after we had been married. Six months after we were married we thought that if we started trying to have kids early, then it would be best to have him or her born in the summer when my husband was on summer break from teaching. We switched gears around November of 2014 from using NFP (Natural Family Planning) to avoid having children to using NFP to make sure we were having sex during the most fertile periods of my cycle. We had been trying for about 7 months and there was no progress. My body was giving me signs of fertility (clear, elastic mucus a week or less after my period ended), but it was also giving me weird signs during my menstrual cycle. I ended up having my first colonoscopy in May of 2015 because I was starting to get rectal bleeding during my period. I would feel constipated, but was still having bowel movements. The stool, though, seemed laced with bloody mucus so I reached out to a PCP to search for some answers. 

The PCP visit showed that my routine bloodwork looked great. My stool test came back normal, but since there were signs of blood he diagnosed me with Irritable Bowel Syndrome and referred me to the GI specialist for a colonoscopy. I questioned the PCP's diagnosis, because what I found after researching IBS was that it was unusual for it to only flare up during a woman's menstrual cycle. He responded that it was not unusual and prescribed me a medication that dealt with IBS for diarrheic symptoms. It did not help at all, if anything it made me feel worse (which could have been my perception since my hopes were high that any medication would help). Next he prescribed a suppository to help when I felt constipated, which also did not help. It was as if everything that was being offered to me was trying to force my body to defecate properly and it was only making my pain worse. After the colonoscopy, the results came back as "essentially normal" except for a bit more mucus than expected at my cecum. The specialist recommended a different medication meant for IBS focused on the constipation type, but the cost was far too expensive at $300 per bottle after insurance adjustments. I knew something was wrong and IBS seemed like a BS diagnosis.

One of my aunts on my mother's side had endometriosis, but my symptoms did not exactly align with the norm for the disease. For one, my cycles were on time. They were not irregular in terms of how much I bled. No crazy blood clots larger than the size of a quarter...or a golf ball as one patient at my work told me. Sure I had fatigue, but most women seem to experience that during their periods. Same thing with bloating, most women complain of bloating during that week of the month. At the time, I did not have pain with bowel movements or urination. After moving to KY and being married, slowly but surely my low back was starting to hurt with menstruation, and that paired with the weird bowel symptoms and increasingly questionable fertility made me decide it was time to make an appointment with a specialist OBGYN.  

While waiting the 3 to 4 months to be seen as a new patient with the OBGYN, I had contracted a UTI. I was prescribed some antibiotics in July of 2015 and went about my normal routine until my menstrual cycle was late by a week. I thought I saw signs that it was coming though, weird rectal discharge with a slight bloody tint to it. On day 10, I took a pregnancy test and it came back immediately positive. That changed the purpose of my OBGYN appointment that point.  

The pregnancy was easy and felt amazing for the most part. No pain each month. No GI symptoms or distress. I just had some nausea here and there and some food aversions, which meant no Taco Bell or sauerkraut for a few months. My daughter arrived in April of 2016. She was perfect. My husband and I were dumbfounded how blessed we were with such a beautiful girl that we co-created. I was blessed to skip having a menstrual cycle until my daughter was about 9 months old. I breastfed her as long as I was comfortable and she was comfortable, especially with the hope that it would stave off my period. Also as a side note, I finally realized how enjoyable sex was supposed to be! There was no pain, only a closeness to my husband on a different level than before the birth of our daughter. But once my period was back in play, slowly but surely sex was painful again and it became increasingly difficult to orgasm on my part. The rectal bleeding came back and was getting to the point of feeling tenesmus, which is the feeling of unproductive defecation. 

In 2018, I was hospitalized for what I thought was food poisoning but was diagnosed with a bout of colitis. I was discharged after 3 days and given 10 days' worth of antibiotics which cured an UTI I had suspected having before being admitted. There is a specific reason I needed to share about this hospital stay: another symptom had emerged. My flatulence has changed in tone. It sounded a lot louder and longer, like an engine trying to start. It took approximately 4 months after this first episode of “colitis” for me to have a solid bowel movement again. Since that incident, I normally have this usual flatulence about a week before my period starts.

Together with the rectal bleeding, the tenesmus was getting so bad that I would get nauseous and vomit. My abdomen would freeze up into a spasm or contraction that would last 4 seconds and would result in 1 to 2 small rabbit-sized pellets of fecal matter. Over time, I discovered that if I were lying down in a bathtub for example, I could defecate with little to no pain. Something anatomically was wrong, so I scheduled an appointment with an endometriosis specialists OBGYN's office.

Around the time I first called to make that appointment, I came across a prayer request from a fellow alumni on social media. Her sister-in-law had been diagnosed with severe endometriosis that created adhensions (kind of like patches of endometrial tissue that attach where it shouldn't and cause things to bind together) up to her small intestines. She was having two surgeries the next month in Omaha, NE, at the St. Paul VI Institute. I later found out that this institute is the leading center (in my opinion) for infertility research and the formation of NaPro doctors in 1985 under Dr. Thomas Hilgers. He sought to create women's healthcare environment that worked with women's reproductive systems in a holistic approach. Most reductionist medicine deals with Endometriosis with birth control, hysterectomies, and in vitro fertilization. Dr. Hilgers spearheaded the research that resulted in the creation of Creighton Model FertilityCare™ System and NaProTechnology.  

I started researching what symptoms were associated with intestinal Endometriosis. The search engine automatically forwarded me to bowel endometriosis symptoms. To my utter surprise and delight, I read something along the lines of "often misdiagnosed as irritable bowel syndrome (IBS)." I felt a wave of relief wash over me. I was justified in that moment to doubt the diagnosis given to me years prior. Suck it, PCP. Additional symptoms included: pain during bowel movements, rectal bleeding, constipation, diarrhea, pain during sex, fatigue, bloating, nausea, heavy bleeding during periods or between cycles, etc. It causes a chronic inflammatory reaction which explains why applying a heating pad to reduce my cramping had the opposite response on more than one occasion. It also explained why Ibuprofen was the only over the counter medication that seemed to make a difference to my pain during my periods. Everything clicked.

My first appointment was with a local OBGYN who was concerned that there was more going on than just bowel endometriosis so she diverted me from jumping into the laparoscopic surgery, which is the only way to diagnose endometriosis. Insurance companies are not keen on doctors jumping to surgery without other steps being taken first. First was the Transvaginal Ultrasound that showed a lot of inflammation in my uterus and something descending behind my uterus. At this point, I wanted an MRI, but the OBGYN wanted a pelvic CT scan. It turns out that medical insurance companies want to do the less expensive scan first, but the imaging is not as clear. What it did show was that there was some thickening of my rectal wall, a small cyst on my left ovary, and inflammation. Next they sent me to a GI specialist to get a colonoscopy. There was a blockage in my sigmoid colon which prevented the colonoscopy from being completed. From there, they ordered a stat MRI, which was scheduled the day after Christmas in 2019. They also referred me to a colorectal surgeon, based on the assumption that the scan would show something that needed to be removed. I was trying to line up the scan to coincide with my period, but it ended up acting as a control since I was late by almost a week. The scan showed that there was some free floating blood in my abdomen, but it did not show a specific blockage in that area. There was still the rectal wall thickening and also some inflamed lymph nodes that they were concerned about. I cancelled the colorectal surgeon initial appointment and rescheduled with the OBGYN provider that was concerned that there was more than endometriosis going on with me.  

About 2 and a 1/2 months later, I ended up being scheduled with a different provider in the practice, because my original one ended up calling out sick and did not have another appointment available for 3 months. Fortunately, this new provider in the practice listened to my abbreviated summary of my medical history and immediately recommended a laparoscopy to scope what was going on. She also agreed that it sounded like endometriosis of the bowel and that this surgery should have been scheduled months ago. FINALLY!  Just a little bit of affirmation goes a long way. I had instructed the doctor that if she could not safely take out any endometrial tissue, assuming that she would see some, that she just leave everything alone so as to not cause any additional scar tissue. Coincidentally (or through Divine Design), my sister-in-law ended up having endometriosis stage 3 diagnosed years earlier and saw a NaPro doctor for her treatment. My sister-in-law ended having an 8 hour laser surgery that cleared up her endometriosis immensely while leaving her reproductive system intact. Since I was convinced I had endo (but didn’t know what stage), and still wanted to have more children, I knew I wanted to see the same type of doctor.

In March, I woke up from the laparoscopy to hear the doctor say, "You do have endometriosis. And it is stage 4, which is the worst stage."  Since there were no NaPro doctors in the whole state of KY, I reached out to my sister-in-law's doctor for advice. We consulted over the phone; based off where I live and his familiarity of good NaPro doctors that work with bowel surgeons, he referred me to a doctor in St. Louis, MO.  

My first appointment with the NaPro doctor was through tele health medicine over video chat because of the restrictions of Covid-19. It is only because of the pandemic that I was able to be seen earlier than usual. He prescribed me Naproxen to take for my menstrual pain instead of Ibuprofen. Since that switch, I have not had any of those intense abdominal spasms when trying to defecate during my cycle. Little victories! We scheduled an in-person appointment in June, which would include another transvaginal ultrasound and a HSG (Hysterosalpingography) to see where my fallopian tubes were blocked. This test is ideally done within 5 to 9 days from the start of a woman's cycle. It was not the most fun of medical tests I have experienced thus far in my life. They instructed me to take some Ibuprofen beforehand, but honestly I don't know if it made a difference. There was intense cramping when the dye was inserted into my tubes. It showed that my right fallopian tube was completely blocked, but my left tube was more open. Unfortunately, the left side is the one that chronically shows more fluid retaining properties (hydrosalpinx) that deform the tube and cause scar tissue to form. 

The next step was to wait for the appointment with the bowel surgeon working with the NaPro doctor, which I had already scheduled. I was steadfast in my expectation that I would need my bowel resectioned. During my exam, the bowel surgeon was so convincing that the risks outweighed the benefits that we compromised. If she could shave off the endometrial cyst blocking my colon each month, then I would not resection it. Despite the partial colonoscopy last December, we agreed that we should try again for the sake of the impending surgery. If it was blocked again, then we would do a barium enema x-ray to at least map out my colon so she could get a better look at what the rest of my colon looked like beyond the endometrial mass. At least that was the plan. A few days later, the colonoscopy was another failure, as was the barium enema x-ray (which was more painful than the HSG test). The bowel surgeon was able to get back in touch with me 4 days later. She back pedaled and said that we should resection the bowel. The failed procedures indicated that shaving the endometrial mass would ultimately be ineffective. She also advised the NaPro doctor to move up my surgery timeline from November or December to September if possible. I appreciated that severely. Covid-19 has thrown the schedules of the doctors into chaos and all of their surgeries were delayed during the shutdown. Because of the bowel surgeon's advice, I can take comfort knowing that this surgery will be in the same year as the laparoscopy back in March. Most of my expenses will be within the same year for our deductible, which is also a blessing.

My 8 hour+ surgery is scheduled for Tuesday, September 29th. Then a secondary surgery will be on October 9th to take out the Gore-Tex mesh that is used to reduce scar tissue from forming on my reproductive organs. I am 75% excited to get this show on the road and 25% apprehensive and scared. This will be the largest and longest surgery of my life so far. Despite my best intentions, I could still wake up with a hysterectomy, a colonoscopy bag, or both. In my heart, I feel God has pushed me to the right medical providers. The tests I have had so far have provided data crucial to the two doctors I am trusting to perform my surgery. I am giving my will to Christ and trusting Him to give my reproductive system the best chance to naturally do what it is intended to do. If it turns out that I cannot naturally have more children, at least I can take comfort knowing I did my best. So please pray for me as we approach the 29th and of course on the date itself. Feel free to join me in a Novena to St. Michael the Archangel that my husband and I started Sunday.  He is my husband's patron saint and His Feast Day coincides perfectly with my surgery. We are praying for the Holy Spirit to guide the medical professionals performing my surgery, its success, and my recovery afterwards.  Copy the link below, paste it in your web browser, and click it at the bottom to follow along with us!  Since prayers are outside of time, you can double up today's and yesterday's prayers.  If you accidentally miss a day, that rule still applies.

I have had plenty of friends and family encourage me to get checked out by a doctor in the past few years.  One of the big reasons I waited was money. Specialist appointments are expensive, as are the diagnostic tests they order. Until I had come into a bit of money, I was not going to endanger our family finances. We don't qualify for passport, and what is adjusted by my husband's medical insurance plan only covers so much. Fortunately my husband's employer changed their employees' coverage to include more infertility services. It has definitely helped us this year keep our heads above water. Also, I have dealt with this pain for so long that until the rectal bleeding appeared, I figured it was normal. We hear the phase "toxic masculinity," but toxic feminism is just as bad. The idea of women being able to handle everything a man can or that women's pain tolerance is higher or to just toughen up and deal with it is destructive. The mentality "pull your panties up and deal with it" for men or women is dangerous. Listen to your body and be your own advocate when dealing with doctors and insurance companies. I have done a lot of reading throughout the years and had to fight misdiagnoses in my Endometriosis journey thus far. I hope that my testimony reaches at least one women and turns on a lightbulb in her mind, shedding light on her symptoms and emboldens her to get to a specialist's office for an initial appointment.

 

https://catholicnovenaapp.com/novenas/st-michael-the-archangel-novena/#

https://finkenauer.house.gov/media/press-releases/house-approves-push-finkenauer-and-endometriosis-caucus-double-research-funding

P.S.A: I realized that if I had gone to an OBGYN when I was in high school, most likely they would have put me on birth control and sent me on my way (especially since I did not connect any G.I. symptoms with my menstrual cycles at the time).  Here is the problem: the birth control would have paused the progress of the disease, but the endometrial tissue would have been lying in wait until I was off the birth control (the disease fluctuates with estrogen levels).  The affects of long term birth control are not something I would have wanted to risk.  The connection between birth control and cancer is not 100% verified by research, but there is enough data to make me pause and be cautious.  Cancer runs through my family and I would rather try to avoid that disease for as long as possible.  Pros and cons are present for any treatment you choose and my testimonial shows how my choices have played out.