Two years ago I shared my Endometriosis Story. A lot has happened since then, so I thought that I would re-write it. Some parts will be word-for-word from my first post, which you can read here. I’m sharing my story to raise awareness and be a voice for Endometriosis. There has been a lot of improvement in the community and research that’s being done, which is really encouraging!
My Endometriosis story began when I was eleven. However, I didn’t hear of the word until I was twenty-one. I’m sharing my story again to bring awareness to this disease. I try my best to be accurate in any medical information or statistics, but if I’m wrong with anything please let me know. Before I start, please don’t let the topic of periods keep you from reading this. Yes, Endometriosis is a disease that involves the uterus. But it’s nothing to feel shy or embarrassed about.
What is Endometriosis (Endo for short)? It’s a disease where tissue called endometrium is found outside of the uterus. Basically, when a woman who has normal periods bleeds it flows out as it should. However, when a woman has Endo the blood makes it way out of the uterus and sticks to other organs. These are called lesions, which continue to bleed every cycle and create scar tissue as the body tries to heal itself. A way that I describe it is that each lesion is a blister that reopens every month and then creates scar tissue as it heals, which sticks to other organs. This cycle repeats month after month. As you can imagine, it causes a lot of problems and pain.
(A diagram of what Endometriosis adhesion’s can look like.)
During the summer of 2004 I was 11 years old and at a bible camp. I remember waking up one morning to cramping and bleeding. From what we were taught in school that year, I knew that I was having my first period. During the class it was mentioned that women experience cramps with their periods and that Pamprin or Advil should help. So I went to the camp nurse for some advil, but it didn’t help much. Swimming time was nice because it helped ease things. One of my favorite parts of camp was playing soccer, but my pain would get worse as I ran around so I couldn’t play that summer. Instead I read a lot and went swimming whenever the chance came up.
That’s my first recollection of the pain. However, I just shrugged it off as cramps everyone who has their period experiences. When school started that year I remember visiting the nurse whenever it was my time of the month. I would be allowed to lay down in the back with a heating pad for thirty minutes and then be sent back to class. Soon other girls in my class started getting their periods and I couldn’t relate to what they were talking about. I remember saying once, “I can feel myself bleeding right now.” and then being told that I was being dramatic. What I was experiencing is called Menorrhagia, which is not normal for an eleven year-old (or anyone) to have.
Things stayed the same until 7th grade. One morning while I was walking to my bus stop I felt a sharp pain that kept getting worse while I was on the bus. The bumps from the ride were too much and I was crying from the pain. I went straight to the nurses office when I got to school. At first I was given a heating pad and advil, but it continued to get worse. That’s when she called for an ambulance. When I was in the ER I found that I was bursting 5 oh-so-lovely cysts. However, after that episode I was told that it’s common for women to have cysts and to see my general practitioner (GP) about it. When I saw my GP I was told that I had developed the cysts because I was depressed and was given anti-depressants to prevent them from growing again. Being 13 I trusted my doctor and took the Prozac, which didn’t help any of the symptoms I was experiencing.
The Prozac did nothing to help stop my painful periods. I ended up in the ER a couple more times from bursting cysts, each time being told that it was normal. I missed a lot of school, even when I was in school. I failed gym class. Twice. I just didn’t have the energy or strength to participate whenever I had my period. There were two nurses at my high school: one that let me have the dark room, a heating pad and an hour or two of rest. The second one would give me one of those Thermacare sticky heating pad with the same comment every time, “I can only give you this once. They’re only meant for students to sample and then have their parents buy them more if they liked it.” and then would send me back to class.
It was around this time that had I started to cut myself. In hindsight now, I think that I resorted to self-harm because no one believed the pain that I was in. Every time that I would go for help I was told that it was either normal or that I was making it up for attention. So I released my pain and frustrations by cutting myself. It was a pain that I had control over combined with antidepressants that made me feel hollow. I am so relieved and happy to say that ultimately, it was Jesus who took control over me and my life. It was His grace that saved me from my downward spiral and (dare I say), period of my life.
When I was 15 I finally decided to stop taking Prozac. I was taking it to stop the cramps and it wasn’t doing that one bit. My GP was still telling me that I was depressed and exaggerating my pain to get attention. I continued believing her until I realized that the bad cramps, heavy bleeding and frequent bursting cysts weren’t normal and there was no way all of this could be caused by sadness. Something was wrong, but the ER docs and GP didn’t seem to care much about finding the cause.
By that time I was going to youth group, had a job and no was longer self-harming. I was starting to find myself as a person now that I wasn’t foggy from the Prozac. It was around then that I came to an understanding that I was my own advocate when it came to my health. I lived in a small town in rural Minnesota, so there weren’t many options to find a good doctor. So I started to take a heating pad with me to school and wore it on the bad days, not caring what anyone thought. Since writing my first post, friends have reached out to let me know that I also slept in classes a lot whenever I needed my heating pad.
Me proudly wearing my heating pad at school.
I had transferred to a charter school for my senior year. They calculated credits different than public schools, so I ended up graduating on time. Somewhere along the way I got a bad ear infection, which turned into an infection of my Mastoid bone. I had to have surgery on my left ear when I was seventeen. My new school was understanding whenever I missed days for not feeling well, which was nice because it took 6-8 months for me to fully recover from that surgery. I was taking pain medications during my recovery, which in turn helped relieve my bad cramps. Though it took a while to recover, it was honestly nice to have a break from the pain during my period.
Then I went on to college. This is when things started to get a lot worse for me physically, but it’s also when I started to piece things together. I ended up in the ER countless times from cysts bursting and migraines. I talked to other women in my dorm about their periods, which is when I learned what a normal period should be like and that something was definitely wrong with mine. I started going to a chiropractor weekly, which helped me with migraines, back and hip pains. Not so much with my monthly cramps.
It was during my sophomore year when things quickly went south. I was starting to be in pain all of the time, not just 1-2 weeks out of the month. The doctor that I was seeing sent me to a Gastrologist to have a handful of tests done. They didn’t show much, so I was diagnosed with Gastroenteritis and was told that I just needed to wait it out. At this point my doctor knew my entire history of the cysts, painful periods, heavy bleeding, exhaustion and acne. However, it was all dismissed as a type of flu that I had to get over. I just knew that it all had a connection, but continued to suffer and wait to feel better.
The summer after my freshman year and onward I was dating, and then became engaged, to my husband Sam. We would switch driving 2.5 hours to see each other almost every weekend during the first semester of my sophomore year of college. His mom is a nurse and began to ask me questions after I was continually curled up with a heating pad on the couch. She was the first medical professional who showed an interest and concern about the pain I was experiencing. She encouraged me to try and see another doctor about it.
I found a new doctor right after Sam and I got married. I practically begged for her to help me. After having an ultrasound done, I received a call to come back in. She then told me that something didn’t look right about my uterus, but it was above anything that she knew about. I have to say that I really appreciate and respect when doctors are honest about not knowing something and referring you to someone who might. So I was sent to a Gynecologist, who I was able to see that week.
It was during my first appointment with him that I heard the word Endometriosis. He said that he strongly felt that I had it and there were two options: to start birth control and see if that helps, or have a Laparoscopic surgery (Lap) to diagnose, and if found, remove it. I chose to have the Lap, as we had wanted to start a family right away.
I was so scared when I went in for my first Lap. What if nothing was found? What do I do then? I remember waking up and immediately asking if the doc found anything. I cried a lot when the nurse told me yes. That my doctor had found Endometriosis Lesions. The cause to all of my pain finally had a name. I thought that this would be the start of a new life. My suffering had a name and now I could be taken seriously by doctors. Disappointingly, this was only the beginning instead of the end.
The doctor had botched my first Lap. Not only did he end up just taking a few samples of the lesions he had seen (instead of removing it all like he had said), but he also put the incisions in the wrong spots causing nerve damage. I was in more pain than I was in before the surgery. My doc told me that was impossible and eventually getting in to see him became difficult. Thankfully, Sam was offered a job in Maryland. We moved soon after that and I quickly started looking for a new doctor who specialized in Endo. I had my first surgery in November 2013, we moved to MD February 2014 and scheduled my second Lap for April 2014, just five months after the first.
It was during that surgery when my new doctor found a lot of lesions and adhesion’s that were left behind previously. There was also a lot of scar tissue that had formed over those five months. My doc said that he thinks the previous doctor had become overwhelmed by the amount and chose to close instead of excising all the lesions. I’m still angry at the first doc for lying to me about taking everything and treating me like I was crazy afterwards. Anyways, I had around a month of relief after recovering from my second surgery before the pain started up again. My doctor referred me to a Pain Management Specialist so I could be relatively comfortable as we tried to find out a new way to ‘treat’ my Endo.
We were still trying to conceive, so during the summer of 2015 we started doing rounds of Clomid, two to be exact. I wasn’t told beforehand that Clomid is known to cause Endo to grow quickly, which is what ended up happening to me. The Clomid rounds didn’t end with pregnancy, instead the pain increased and became even more constant. I started having Painsomia, which is when pain is so severe that you can’t sleep through it. The pain was literally 24/7. I started doing damage control by taking a birth control named Aygestin and cried uncle when it didn’t work. I couldn’t keep putting my body through all of this to become pregnant. I had to accept that carrying a child in my womb wasn’t going to happen. Even if it did, I became afraid that if we had a girl I would pass Endo onto her. So we stopped TTC and scheduled my 3rd Lap.
This is where my story hit a pause when I wrote the first one. We had just announced that we were adopting and that I had my 3rd Lap scheduled for Dec. 2nd, 2015. It’s hard to imagine, but I went through hell recovering from that surgery. There were nights where I felt that I could have died from the pain I was experiencing. Honestly, a lot from that time is fuzzy to me. But I’m going to try and explain what happened.
Photo taken before being wheeled back to my 3rd Lap.
I went into my 3rd surgery with an expectation that this one was going to change my life. My doctor had placed Lydia, an IUD, during the Lap. Our hopes were that this form of birth control would lessen my estrogen amounts, making my periods lighter and in result lessening the amount of lesions that could form. I woke up from my 3rd surgery in so much pain. My doctor had forgotten to consider the amount of pain medication I was taking daily and prescribed the wrong strength for coming out of surgery and for the recovering period. I had been taking 10mg of Norco every 4 hours and he prescribed me 5mg of Norco to take every 4 hours and wouldn’t listen to me when I tried to explain that to him.
The pain was unreal. I was also experiencing contraction like pains from the IUD. I was told that my body was trying to reject the IUD, but he felt like this was the best plan so to wait it out for 3-5 months while my body gets used to it. If I could just make it until my body accepted it we could try Lupron and I could feel so much better. Alarms in my head went off when Lupron was suggested. I’ve read so many stories from fellow Endo Sisters that Lupron is not the right treatment plan.
What is Lupron? Well, to doctors who know nothing of Endo, it’s a miracle drug that can cure Endometriosis (please note the rich sarcasm in my tone) It has some unruly side effects like hair loss, weight gain, bone density loss, hot flashes, chills, nausea, diarrhea, insomnia, facial hair growth, acne, depression and memory loss. That’s only naming a few. Doctors who prescribe it for Endo tend to never mention that it’s used as a chemo drug in certain cancer cases.
The non-sarcastic answer is that Lupron is a drug that puts women in temporary menopause. Which, theoretically could make absolute sense with Endo. It would stop estrogen, which is the hormone that feeds Endo. For some women this treatment works wonders and does help them, but for others they experience what was said in the paragraph above. The chances are unknown and some of the side effects, like bone loss, are irreversible. It’s a really big gamble and doctors act that it’s not a big deal, but it is.
In the end, the doctor who I trusted to perform two Lap’s on me, who was running Endo studies and performed surgeries nearly every day, wasn’t actually a specialist. He did an okay job, but not the best. I cut ties with him when he refused to take the IUD out and continued pushing that I try Lupron. A few days later I started getting these awful migraines and the contractions were just getting worse. I cried uncle again and went to the ER, where they told me that my body was fully rejecting the IUD and the hormones from it. But they didn’t have anyone trained to remove it, so I had to go back home and wait a week to see a new gynecologist to take it out.
In the three months that the IUD was in I had gained 30lbs and I had a pretty serious moon-face. Since my body was trying to expel it the entire time that it was in, I now have scar tissue damage in my uterus. To be frank, since then having intercorse is very painful and I’m angry that Endo has taken that away from me too. I’m also still furious at that doctor for refusing to take it out and insisting that I take Lupron. From what I’ve heard from other Endo Warriors that’s sadly a fairly common thing to have happen. There are (find statistic) real Endo Specialists in the US. All other doctors who claim to be cause more harm than good.
Photo taken soon after Skyla was taken out.
I started to give up hope that I would find a good Endo doc. My Pain Management doc is wonderful though. I was one of her first patients with Endo and she’s since grown to mostly seeing Endo Warriors. I was her guinea pig and would help teach her more about the disease. Every month that I see her she knows more and more about it and seems very passionate about helping women who suffer from chronic pain. We made a plan to just help keep me comfortable while I search for a new doc.
For the past year and a half that’s what I’ve been doing. My pain is generally at a 7-8 everyday without pain medications and a 4-6 with. My periods have been all over the place some being 7 days and others 19 days long. During my cycle the pain is a 11-14 without meds and a 7-10 with. I haven’t had a 0-3 pain day in 4 or so years. It’s become my normal and it’s definitely been a struggle to learn how to thrive in life while experiencing 24/7 pain. I’ve become depressed numerous times, but am thankful to have been able to realize that and seek help to be pulled back up.
I have a new plan, which fills me with a bit of hope. I’m going to be spending 2018 researching and interviewing real Endometriosis Specialists. A handful of them provide free consultations, so I’ll be taking advantage of that. Then we’ll be changing our insurance in 2019 that will help cover out-of-state surgery. I want my fourth Lap to be life changing. I hope to know what a pain-free day feels like again someday. And I can only dream of that becoming my new normal.
Right before my 3rd surgery I was searching for an Endo shirt that would make me feel empowered. I was able to find one that said, “Do something about Endometriosis” and it’s since become my motto. For a disease that affects 176 million women worldwide not many people have ever heard of it. If every single person who has heard of it does something, whether it’s sharing stories, talking about it in normal conversations, going on awareness walks, etc. It’s just so important to do something.
Who am I aside from Endometriosis? I’m a wife, mom-to-be through adoption, sister, friend, nanny, baker and small business owner. I try my very best to be present aside from the pain and to raise awareness for this disease every single day. I love this quote, “Scream so that one day, a hundred years from now, another sister will not have to dry her tears wondering where in history she lost her voice.”
In the past year I’ve worked at opening an Etsy shop where I sell Endometriosis Warrior tees that I’ve personally designed. This past winter I was part of a Holiday Bazaar with Endometriosis Foundation of America where 10% of sales were donated to the work that they do. My own story could have changed when I was 11 years old if my school nurses had known what Endo is, so I’m going to continue donating 10% of every Endo tee sale to EndoFound that will go towards education in schools. I’ve also started a new Instagram page named hopeandpatients. My hope is that it can become a place for people to come to for support, awareness and stories being shared. Follow along there for all things Endo, as my blog also follows our Adoption journey.
Wearing my Endo Warrior tee.
Thank you for taking the time to read my story. It took 10 years for me to be diagnosed. I pray everyday for young girls who are struggling that this won’t be their story. How can this be prevented? By doing something. Share my story, share your own story. Talk about it. Doctors may not know a lot about Endo, but those who have it do. We can all be a voice, turned into a booming change.
Do something about Endometriosis. If you have Endo, do something. If you know someone who has Endo, do something. If you’re just learning about Endo now, do something. There’s an estimated 175 million women worldwide who suffer from this awful disease, yet there isn’t a cure yet. It takes a woman an estimated 10 years to be diagnosed properly and even after being diagnosed they still have to fight to be heard and helped. This could be prevented if those in the medical field were better trained in this disease, and also if it were taught during sex-ed/puberty talk in schools. There is so much that could be done. So let’s just start with this: Do something about Endometriosis!
Below are a few articles that I’ve found useful over the years. There’s also my IG page and my Etsy shop information. Please feel free to e-mail me at channyn.kay@gmail.com if you would like to talk.
Shop:
http://www.etsy.com/shop/designsbychannynkay
IG: hopeandpatients
Links:
- http://www.thisisendometriosis.com
- http://www.myendometriosisteam.com
- http://www.endofound.org/endometriosis
- http://www.theguardian.com/society/endometriosis
- http://sexsiopa.ie/blogs/sex-siopa/54623492-living-with-endometriosis-an-interview-with-jeanne-sutton
- http://www.graziadaily.co.uk/beauty/fitness-health/what-is-endometriosis-20150954418
- http://www.prnewswire.com/news-releases/new-genetic-discoveries-in-endometriosis-300164855.html
Hope & Patients 