Patiently Waiting | My Endo Journey
1 year ago - LEAVE A COMMENT
Last week, I shared what endometriosis is and how it’s so much more than just a “bad period” and that it’s more than just “in our heads.” If you missed that post, head back to my post to read first.
My endo journey began when I was in high school. I started my period late in the game as a 15-year-old freshmen in high school. All of my friends had started years and months before me, but while they waited annoyed that they were only of the last to start what we thought meant “becoming a woman”, I was actually very glad to wait. Little did I know how glad I would be.
Almost immediately, my periods came heavy with painful cramping. I remember having to wear super plus tampons and still change them every few hours. My heavy days would last 3-4 days and my period would often last from 7-9 days. Most of my friends couldn’t even use a tampon or hardly needed anything as heavy duty as me, nor did they suffer through the long periods I did.
Get ready for a funny/oh-I-feel-so-bad-for-15-year-old-Mandi story! I still remember my freshmen year traveling to Panama City Beach with my youth group for a weekend trip. I had the biggest crush on a boy (hey Joey!) (who did end up two years later becoming my high school boyfriend, so this luckily this story didn’t scare him off). I sat next to him on the way down. We stopped just two hours after leaving the church for a restroom break. When I stood up, one of my friends (Leia, you were a lifesaver) immediately grabbed me and threw her jacket at me and said to tie it around my waist. She could see I had bled through my tampon. I felt it immediately and cautiously walked to the restroom, fearful of how bad it would be. I still remember the moment of horror when I saw how much had leaked out. I immediately started crying and didn’t know what to do. All of my clothes were in my suitcase in the U-Haul behind the church van. God only knows how far packed my suitcase was behind everyone else’s. I panicked. Thank goodness for the sweet summer intern’s girlfriend (Jessica Strickland, this is you!) who was there to help me clean up. Girl was a saint. She washed everything out for me while I embarrassingly walked to my youth pastor to tell him I needed to get into the U-Haul. Thank God he had 4 girls and didn’t flinch for a second, but imagine as a 15 year old girl having to approach your youth pastor to tell him you need a change of clothes from the U-Haul. Even if you don’t say why, he knows- or he assumes that you need it for that or possibly poop your pants. I dunno which is worse! God was looking out for me that day as my suitcase was literally sitting right there when we opened the U-Haul. At this point everyone was back in the bus waiting and wondering why it was taking so long; but the people sitting around me didn’t have to wonder; because waiting for me when I got back to the bus was a big red spot on the COTTON covered seat of the bus. What kind of bus has cotton covered seats?? Seriously? Of course it would be cotton and not that standard vinyl material all other busses have. Mortified, I sat down over a plastic Kroger bag. We drove the rest of the way down to Panama City and when we got there, sweet Jessica helped me scrub out the remains of my most mortifying moment of my life.
I share this story as a funny one to laugh at nearly 18 years later, but I also share it to show how bad it was for me. TWO HOURS? I couldn’t hold that in for two hours? Come on. That isn’t a normal flow for a 15-year-old girl. But my high school OBGYN said some girls just have heavy flows.
My cramps were bad in high school, but manageable. I didn’t have debilitating cramps that kept me out of school like many endo sisters do/did. I am thankful for that; but they were bad enough (coupled with my heavy flow) that my mom took me to my OBGYN to see if there was anything they could do for me. She immediately threw the words “birth control” at us. At the time, neither my mom, nor I were comfortable with going that route, so she basically told me there was nothing else to help if I didn’t want to do that. A few years later, during my freshmen year of college, I did try some months on birth control; but it didn’t help enough to where I felt like I wanted/needed to stay on it. I wasn’t using it as a contraceptive as I was waiting until I was married; so I got off it.
During my college years, I began to suffer with extreme bowel pain. I would cramp up so badly that I would curl up into a ball in my dorm room from the pain. I would eat and almost immediately have to use the restroom. I pretty much knew where every restroom was on campus in each of the buildings I frequented often. Very TMI, but it was so bad, I would feel like I often wouldn’t be able to make it to the restroom in time. Talk about an even more embarrassing story than my period pants! “Remember the time that Mandi diarrheaed all over herself in D-Hall?” Thank goodness that never happened! Not so sure I would be laughing at that one as much today! I finally went to see a gastroenterologist my senior year. Talk about a fun experience as a 22-year-old young adult being the only one under 50 in an office to have a colonoscopy. My best friend, Kristi, had to take me. Talk about a good friend! (Thanks Kristi!) After months of trial and error and testing, my doctor said I had “IBS” (irritable bowel syndrome) aka “we don’t know what’s wrong with you, so we will lump you into this category.” I continued to suffer with it and even still do today despite changes in diet and exercising consistently.
When I got married in 2007 at the age of (almost) 23, the heavy periods were still there as well as the cramps, but the period cramps became much more tolerable after I got on birth control. Guess it worked this time? In fact, I no longer had to take tons of ibuprofen each month. My life was manageable and my pain was very little during those years. My only main affliction was my IBS.
At the end of 2012, we decided we wanted to get pregnant and start a family, so I got off the birth control and we got pregnant the next month. Early in my pregnancy, I had excruciating back pain around my waist, to the point of it being so painful to walk and being unable to stand up straight. This was the first time I had experienced this pain. My OBGYN said it was because of the hormones and my body adjusting to the pregnancy. It very well could have been, but it also could have been my first lower back pain thanks to endo. Luckily, the pain went away and didn’t come back again during the pregnancy.
I didn’t have any noticeable endo pain for a few years until we decided we wanted to try for another baby. I got off birth control once again at the end of 2014, but this time, we didn’t get pregnant right away. If you’ve followed my story for any period of time, you know that it’s been 3 years since we started first trying to have a baby. During that time of trying, I started developing more endo symptoms, but I didn’t know they were endo symptoms. The first one to come was my back pain coming back. It would rear it’s head every few months and keep me in a lot of pain for a week or so, even keeping me in bed at times, but it feels like I pulled my back whenever it happens, so I didn’t associate with anything more than pulling my back out because I was carrying a giant child or possibly from my running.
My ovaries started hurting next. This part of the story is pretty personal and a lot of TMI, so if you want to skip over this paragraph, you can if you want; but I am going to share it, because it’s a big part of my story and why I got diagnosed eventually. I began to have pretty severe ovarian cramping most of the month-it feels like I’m being stabbed in the ovaries- especially during my days of ovulation and while we were trying to make a baby. It got so painful that I would be in tears often times. I hated trying to conceive. It was a chore and painful. Our heartbreaking infertility coupled with the pain made me want to avoid it at all costs; but we wanted another baby so I sucked it up and did what I had to to try and have a baby. After two years of infertility, I brought up the painful ovarian cramping to my OBGYN in February of last year. She said it was pretty common for women to cramp around ovulation and even weeks beyond. I asked her “even 3 weeks out of the month? I only have one week where I’m not in pain.” And she told me that it sometimes happens, and that was that.
Now I’m going to preface that I do feel like my OBGYN let me down here, brushing off my symptoms as practically nothing to be concerned about; but I don’t blame her. I blame the lack of teaching in the medical profession that there are so many doctors in the gynecology field that know little to nothing about endometriosis or the symptoms to look for with women who are suffering. Unbeknownst to me at the time, I shared with her at least 3 key endo symptoms and it didn’t even register on her radar. Should I be able to trust my OBGYN to see these symptoms of infertility and painful ovarian cramping and begin to ask me more pressing questions? Yes, but sadly, my story is not uncommon. Endometriosis didn’t really being to be talked about in the medical community until the 1980’s and 90’s and is still a big unknown to many out there; and the general public in general hasn’t heard of it. You tell someone they have diabetes, high blood pressure, or even cancer and they know what it is and most likely what that means for their lifestyle. Many women diagnosed with endometriosis will ask “endo what?” because they have never heard of it before. Nor do they realize how debilitating it can be for a woman. Because it’s chronic pain and people can’t see a physical ailment, women are often accused of “overreacting to periods” or that “it’s all in their heads” or that “it can’t really be that bad.”
Around the same time of my painful ovaries, I started to get bad hip pain. It hurt mainly when I ran, so I assumed it was associated with my running. It got so bad that I finally had to take a break from running last February and I haven’t been able to really get back into it since. Despite the almost year of rest from running, my hip still hurts on a regular basis. But once again, I never associated it with anything more than another sports injury.
The ovarian pain got to be so bad that I finally decided to go see a fertility specialist about it. Despite what my OBGYN said, I knew my body and knew that what was going on wasn’t normal. Again, if you’ve followed me for any period of time, you’ll remember that we didn’t go to the fertility specialist to try and get fertility help, I really just wanted answers as to why we weren’t getting pregnant. I sat down in her office and she told me to tell her everything I have going on with my body whether or not I thought it was fertility related, so I did! I didn’t think to share my hip or back problems just because I genuinely thought it was running related and honestly didn’t even think of it at the visit; but despite leaving those pieces of the puzzle out, she heard my cramping ovaries, heavy periods, IBS diagnosis, and infertility and said, “I believe you have endometriosis.” I had heard of endo before from a few of my friends, so this was not a foreign word for me, but I really didn’t know the scope of how far reaching the symptoms could go or that so many of my health issues were endo related.
I went home that day and looked up endo online and saw the symptoms listed and my jaw dropped to the floor. I could not believe how the pieces all fit together. My eyes were opened to a whole new thought process that I didn’t have a bunch of random things wrong with me, but that it was a bunch of things related because of endo. I felt immediate relief knowing there was a reason for my infertility, a reason for my terrible stomach issues, a reason for my back problems, a reason that I was exhausted all of the time, a reason for most everything going on with me!
Now, I will note that the only official way to diagnose endometriosis is through a laparoscopic procedure to see the endo inside of the body, but that doesn’t mean a doctor knowledgeable in endo can’t tell that you have it. I have not yet done this despite being scheduled for excision surgery tomorrow. Even the endo specialist I am seeing says based on my symptoms that he knows I have it, and could even tell you where I have it mostly based on my symptoms, it’s just a matter of how bad it is and how much is in there.
I’ve never been more ready for a surgery. Dr. Sinervo and his team at the Center for Endometriosis Care are one of the top in the United States. I know this won’t cure me, but the hope and prayer is that it will give me my quality of life back. This disease has taken so much of who I am. It’s been hard living in daily pain. I live in fear that I will have to miss a wedding for a client because I have a flareup. I have had to cancel plans with friends due to the flareups and pain associated with them. As I’ve already mentioned and if you know me, you know I’m an avid runner. In 2016, I ran 4 half marathons and hit almost 1,000 miles running. Last year in 2017, due to my endo, I logged less than 200 miles and haven’t really run since July. I know my identity isn’t in running, but so much of my mental health is linked to my physical health. It’s been hard for me to sit on the sidelines of fitness. Some days are outright painful to take care of my children. Last month, I had to call my in-laws to come and watch the kids one afternoon because I had the worst flareup of my life, leaving my bedridden for 4 days. I’ve had to rely a lot on the Lord in the midst of my pain. I haven’t been the greatest at that. I learning to lean and rely on Him even in the midst of my health problems.
Thank you to everyone who has followed and supported me during this time. Surgery is tomorrow and recovery is going to be a beast, especially with two kiddos at the house; but I have an amazing support system in family and friends who are stepping up to help me. I know it will be hard, but I am so ready for the endo to be gone. I’m praying that Dr. Sinervo and his amazing team and get rid of all of the endo and that it will give me many many years of pain free living. Is there a chance it can come back? Yep. Is there a possibility that I will have to have this surgery again in 5, 10, 20 years? Possibly. But for now, I know this is my best chance of having my life back and I can’t wait!