Growing up my periods were always rather unpleasant. Cramps would be primarily in my back but it was nothing that some ibuprofen and a heat pad couldn’t take care.
When I hit my late twenties, the pain from my period didn’t disrupt my life as much as the heaviness of my flow. I wasn’t going anywhere for a week for fear of what could happen when I stood up. I made an appointment with my awesome gynecologist, and she put me on a form of birth control to help with my flow. Side note – my husband at the time had a vasectomy so no birth control was needed. Sex sometimes did hurt but I just figured it was how I was moving, and I could get rid of the pain by moving another way. Honestly? I didn’t think anything of it.
The birth control she put me on had a low enough dosage of hormones that it didn’t really affect anything negatively. My moods didn’t fluctuate much, that I can remember, and my periods appeared to calm down. I was no longer a prisoner in my home one week out of the month.
Fast forward to my late thirties. At this point in my life, I was on my second marriage and living with my husband and 15-year-old daughter. My husband was not aware of the issues I had ten years prior with the period fairy. He would soon find out!
My husband and I love to go bass fishing. It is just for sport, but it is an amazing way to spend time together and enjoy the outdoors. When we first got married my ugly period fairy didn’t really put too much of a damper on our fishing trips but that changed as time went on. I would have to make sure there was a bathroom easily accessible or that the Porta Potty was not far from the boat launch. More times that I can count, my understanding husband would have to stop fishing and take his menstruating wife back to the boat launch so I could use the bathroom. Eventually, we would plan our fishing trips around the period fairy because it just got to be too much. I knew this wasn’t normal. Something was wrong with my body.
My how our bodies change! I was, and still am, on a daily dose of Turmeric for my joints as well as other supplements to help with my health. However, no matter how many healthy supplements I took, the nasty period fairy reared its ugly head once again. Only now, I was also consumed with overwhelming exhaustion. I worked full time and took care of my family. My daughter wasn’t driving yet so I would take her to dance a few times a week and drive her to school. I exercised regularly and didn’t partake in drugs or tobacco. I will admit, I do like my beer, but within reason. I was falling asleep on the couch after eating dinner and having no problem at all going to bed 3 hours later and falling fast asleep. Something didn’t add up. I wasn’t training for a marathon, and I got plenty of rest, but I was SO tired ALL of the time.
Sex became painful. Many time my husband didn’t know how painful it was. I couldn’t position myself in a different manner to make the hurt stop. I know there were a few times afterwards that I would lay there nearly in tears because I ached inside so bad. Once I realized I could just take more over the counter pain meds the problem didn’t seem so bad.
Once a month I would become severely uncomfortable only to find relief by lying down with the heat pad and piggy backing the ibuprofen and acetaminophen. I do not suggest this drug regime as it isn’t good for your organs.
I started to see blood in my stool but only during my period. I didn’t say anything to my family and had debated going to the doctor but then COVID hit. I was no longer concerned about my own health. This was not a good decision on my part. Always listen to your body. It typically lets you know when something is off, and it is your responsibility to listen to it.
The bleeding subsided and I just brushed it off. Again, probably not the best decision I ever made. It was now September 2021. I went to my gynecologist for my annual exam and told her about the infrequent blood in my stool. She was not happy with me to say the least. She told me no matter what, blood in your stool should always be taken seriously.
I came home that evening and let my husband know about everything. He was concerned and didn’t say a lot. I’ve noticed that his way of coping with anything really. He’s very quiet and it’s almost as if I can see him processing the information by the look on his face. I had also developed symptoms that mirrored IBS. It was horrible. I felt like I was always running to the bathroom. I was always uncomfortable.
I was able to get into a gastroenterologist and schedule a colonoscopy. Because I was under the age of 45 my insurance company did not pay for this colonoscopy. I was bleeding from my rectum, and they would not change my classification code from exploratory to cancer screening. Fortunately, we could pay for the colonoscopy, but so many cannot. That discussion is for another day.
Colonoscopy day! To anyone that has had to prep for a colonoscopy, I feel your pain.
We arrived at the hospital the day before Thanksgiving for my colonoscopy. The procedure was quick, and my husband and I waited patiently for the doctor to give us some feedback. The pictures that were left on my bedside did not look normal. The best way I can describe it is a balloon looking mass protruding through the colon wall.
Friendly as she was, I do feel her response to the pictures left me a bit dumbfounded. She didn’t know what she was looking at exactly. “Well, it could be cancer.”
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Well, that isn’t a drop in the bucket! Imagine the look on our faces when she said that. I was in disbelief and did want to panic but Brad, my husband, did not let me panic. We made the decision at that time not to worry until we knew we had something to worry about. It seemed like it took forever for the results to come in from my biopsy. The results came back and to our relief there was no cancer. It came back as endometriosis.
What was I to do now? I have endometriosis in my colon. How does that even happen? I made yet another appointment with my obgyn to discuss the findings of my biopsy. She was very frank with me and that is one of the reasons I’ve been going to her for long. Her opinion was as follows: “You obviously have a great deal of endometriosis in your body, and I have no problem giving you a hysterectomy, if that’s what you want to do. I can’t touch your colon. You need a team of doctors for this Karen. If you were my family, I would tell you to go to U of M.”
This diagnosis explained so much. It explained why I was in constant pain, and it explained why I was so tired all the time. The iron in my body was constantly being depleted. The symptoms of IBS were because the endometriosis was on my colon.
The hardest part of getting into a huge hospital like University of Michigan is getting your first appointment. My obgyn sent a referral to the Von Voigtlander Women’s Hospital at the University of Michigan, Ann Arbor. I made my initial call in February 2022. They told me the first available appointment was August 29th. I took the appointment. I explained to the kind lady over the phone that I needed to get in earlier. Although she understood, there was nothing she could do to help me. She told me to call every week and ask if anyone canceled. I could then have their appointment.
Only by the grace of God, and lots of determination, was I able to get into the University of Michigan Ann Arbor that April. Yes, I was “that” patient calling every other day trying to get my appointment moved up. If you ever find yourself in the same situation, don’t give up. Keep making those calls to get in earlier and your perseverance will pay off.
An MRI in May 2023 revealed that the endometriosis had completely encapsulated my uterine cavity. My uterus was now attached to my colon and the disease had progressed enough that it infected over 50% of my rectal sigmoid. This is the very end of the colon right before the rectum. A very important piece of your plumbing to say the least.
By now, I was taking pain medication even when I didn’t have a period. I could only go through the day because of over-the-counter pain killers. I know I took far more than I should have. I was mixing drugs and taking more than the suggested dose. I knew at that time this was no way to live, but how else was I going to be a functioning member of society?
I had an amazing team of doctors that worked very hard so I could have my surgery by August of that same year. I ended up with a complete hysterectomy leaving me one ovary.
This little guy will keep me out of menopause for the time being.
I had the pleasure of having the head of Colorectal Surgery as the miracle worker that prevented me from having a colostomy bag. He took out nearly 4 inches of my colon and put me right back together. There were no complications. The wonderful woman who did my hysterectomy, I owe a debt of gratitude. Her kindness and compassion only reflected what a true genuine human being she is.
Von Voigtlander Women’s Hospital is an amazing facility with amazing staff. My experience was nothing but positive even considering the circumstances.
<----This is me the day of surgery.
I am in good health now. I don’t consume pain medication like candy anymore. I have my life back, pain free. Sex doesn’t hurt anymore. I had no idea endometriosis could cause such painful sex.
I don’t know of anyone who would choose to have a hysterectomy and part of their colon removed. This was surgery out of necessity. My doctor told me having over 50% of the endometriosis going around my colon could have caused a blockage. That would have been life threatening. If you have symptoms like I had, do not ignore them.
As we get older, we tend to be busy and ignore our bodies when we shouldn't. We all want to be around for our loved ones and even though you may think your symptoms are insignificant, it may be a lot worse than you think. Listen to your body. It doesn’t lie.
Do you have a story with a life living with endometriosis?
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