Hello Endo Tribe Warriors, It’s time for us to introduce some very special people to you: our boyfriends/fiances! We asked Nick and Ryan to weigh in on their experiences dating and living with an Endo Warrior. Keep reading below to get a guy’s point of […]
Month: July 2017
Endo Warrior: Allison Schmitz
Age 27, Diagnosis Stage IV endometriosis
I have an incurable illness. Finally, after years of question marks, I have a diagnosis. It’s devastating and hard, but it brings with it a validation I’ve sought for years. Validation for 6 years of horrible pain, countless doctor visits, and endless tests and treatments that never helped and made me think it was all in my head.
This is my story. In writing this, I hope to be a source of strength and hope for anyone that is suffering and to let them know… there is an answer out there. You’re not crazy and you’re not alone.
Endometriosis is a sneaky disease. It arrives at the onset of puberty (for me, age 15) and takes a chokehold of your entire body. Unknown to my teenage self, cells that my body should have been shedding regularly through menstruation were abnormally implanting outside of my uterus, causing lesions, adhesions, scarring and, most obviously, excruciating pain and excessive bleeding. But from age 21 until 27 doctor after doctor wrote off my “episodes”, writhing pain that gave me cold sweats and spasms, and the overall necessity to schedule my life around a normal bodily function as “all in my head.” I later found out that response was par for the course for women with my disease.
It took me six, long, painful years to get diagnosed. Only after I was diagnosed did I realize that my timeline was all too familiar for people with endo. The story of my doctor merry-go-round is the story of my disease, and the story of all that can be wrong and right with our healthcare system. Let’s start from the beginning…
Doctor #1: Dr. Minimizer
I was in my senior year of college and so excited to be on my own and drunk on the excitement of adulthood that was quickly approaching. I had a big move to St. Louis coming up and life was great! I woke up one night with abdominal pains. It felt like I was getting ready to start my period, but I wasn’t–it wasn’t even close to that time of the month. I pushed it out of my head and went back to sleep. Over the course of the next couple months, I started noticing that my menstrual cramps were getting more and more painful. I would sit in class and be in such blinding pain that I was unable to focus. Then I started bleeding in between my periods, which was very unusual for me. I decided it was time to talk to a doctor.
I went back to my doctor I had at home. She was someone I trusted and knew my family well, so I thought she would listen. I explained everything and she said “it’s probably just bad menstrual cramps. Your hormones are still changing. You’re only 21.” To be sure, she decided to do an ultrasound. The ultrasound showed a cyst with a solid component on my left ovary and she ruled it a hemorrhagic cyst. She sent me on my way with a new birth control, but the pain continued for months. I told myself it got better, but I think I just got used to the pain. I was frustrated because it seemed like my doctor didn’t believe how much pain I was in.
Doctor #2: Dr. Missed-The-Obvious
It’s 2012 and I’ve made my big move to St. Louis! I was making new friends, starting my first big girl job, living in my very own apartment, and STILL dealing with the pain every month. It was to the point where I would have spotting and terrible cramping up to a week before, during and after my cycle. I was lucky if I got 2 weeks with no pain each month.
It was time for Oktoberfest in St. Charles and a group of us were going to the riverfront to enjoy the festivities one night. I was already having some bloating and cramping, but I want that to stop me from going out with my friends. One beer in, however, and it was apparent that the bloating and cramping was going to make me no fun. I walked around a little while and then asked my cousin to take me home. It wasn’t even 15 minutes after I was dropped off that I got a sudden and intensely severe pain in my pelvis. I couldn’t stand. I collapsed on the floor and started throwing up. I don’t remember much, but I remember calling my cousin. She tells me I was shaking, screaming and crying on my bathroom floor when she got there and she called an ambulance. I remember the paramedic (a man) telling me on the drive to the hospital that this was “probably just menstrual cramps.” If I had been able to sit up, I probably would have punched him in the balls…asshole.
In the ER, the physician gave me some pain meds and the nurses barely acknowledged me. Most of my 4 hours there were spent alone in the room with my cousin. They never ran any imaging tests and all the doctor did was push on my abdomen a couple times. I left with an information packet on mild pelvic pain and mild menstrual cramps. I left once again with no answer, more frustration, and the feeling that no one thought my pain was real.
Doctor #3: Dr. Devil
After my visit to the ER, I scheduled an appointment with an OB/Gyn that I was referred to by a friend. Leading up to my appointment, I tried to think of ways to describe the pain I experience so that she would understand, and so that she would believe me. I went in for the appointment, and she did all the routine things for a well woman exam She had a very cold bedside manner and seemed to be in a hurry, but still I said “I have some concerns-could you take the time to listen to them?” She reluctantly agreed. I described my history; cysts, pain, spotting, frustrations that no one really listened. Then I tried to describe the pain.
“My pain radiates. It starts off quiet and low in my abdomen and then gets louder, more sharp, more twisting, pulling, until it’s completely taken over. It’s like someone has ahold of my insides and they’re slowly wrapping them in barbed wire like you’d wrap a Christmas tree in lights. And then it radiates into my back and down my hip.”
Her response was “do you want me to prescribe you pain meds or something?”
I said “No. I want you to tell me this isn’t normal, I want you to tell me what’s wrong.” She ordered another ultrasound and wrote me a prescription for Norco and sent me on my way.
About a week later, I got a call from her office saying she wanted to go over my results in person. I thought “great! An answer!” I got to her office, expecting to be put in a consult room. Instead the nurse had me undress and put me in an exam room. Unusual I thought, as I was just supposed to be getting results, not an exam. I sat half naked waiting for the doctor for about 20 minutes. She walked into the room, never shook my hand, never sat down. She just said “you have a large dermoid on your left ovary and several cysts on your right ovary. You also have a septated uterus, so you will probably have a miscarriage every time you’re pregnant. As for the cysts, we will probably have to remove the dermoid and I’ll probably take your ovary out too.”
She said it very cold and dry. I sat there still half naked and in shock. Did she just tell me I’m losing an ovary? Did she say miscarriages? What is a uterine septum? Did that really just happen? Why am I half naked? That’s when I realized she had left the room. I got dressed and found a nurse, and asked if she could have the doctor come back. She said she was with another patient but she had left orders for me to have an MRI and ordered new birth control. They gave me instructions on how to schedule it and I was once again sent on my way. This time I left confused, scared, and very emotional. I could lose an ovary? But I’m only 23 years old. I don’t have a family yet. I want to be a mom.
MRI Results: Dermoid cyst was ruled out, so I get to keep my left ovary The MRI confirmed the septated uterus. In fact, the septum is so large that I basically have 2 uteruses. This confirmed that I in fact have an 88% risk of miscarriage every time I get pregnant. Devastating. She told me all of this in a very similar manner as she had before. She tacked on the fun little fact that my septum could be surgically corrected, but she would have to see that I would in fact miscarry before she would do the surgery. That’s right: she was going to make me miscarry before she would do a procedure that would prevent miscarriages.
I never returned to her as a patient. I will never refer anyone to her. The only thing she did to help me was prescribe the Norco. It helped my pain immensely, but made me so groggy that I could only take it if I knew I would be at home.
Doctor #4: Dr. Hope
My first visit with her went just like most of my other first visits. I explained to her all of my symptoms and tried my best to describe the different types of pain. Guess what?She ordered another ultrasound. In case you are counting, this is imaging test number 4. And let me tell you: these ultrasounds are not comfortable and pleasant like the ones you see on TV. They make you drink about a gallon of water before so that you have an incredibly full bladder for the test. You know what happens next? They push down on your bladder to get the first round of pictures. Then you empty your bladder, oh relief right?! Nope. Because the next thing they do is put a wand up your hooha to take some more pictures. It’s fun…not.
About a week later, I came in for my ultrasound. The tech completed it and then, in a wonderful turn of events, I was walked back to a consult room and told the doctor would be back shortly to discuss my results. I got to keep my clothes on and everything! She came back and went over my results: more large cysts, and this time an enlarged Fallopian tube as well. She also gave me all the same information about my uterus as the last doctor, only she gave me this information in a warm, kind, empathetic way. She held my hand asked me if I had questions and took the time to answer them. She told me this could explain some of my pain. She said surgery was an option and that I DID NOT have to go through a miscarriage before it was an option. She suggested we try another new birth control (once again, in case your counting, this is my third change in birth control in an attempt to control the cysts) and scheduled a follow-up ultrasound in 6 weeks.
6 weeks later: Most of the cysts in my right ovary had decreased in size, but that stubborn one with the solid component in my left ovary was bigger. Once again, it was ruled a hemorrhagic cyst. She decided to continue with the birth control and I was to come back in if my pain didn’t decrease in the few months. At this point I felt hopeful that this new birth control was the answer. That my pain would finally go away. And things did get better for a while, but not for long enough.
The pain came back. The spotting came back. The bloating came back. And they had no rhyme or reason. It happened at completely unexpected times. I could be having a great day and then sneeze wrong and BOOM debilitating pain. It was 2016 now and I had started a new job which came with new health insurance, and which meant I had to find a new doctor. I couldn’t believe I would have to explain this all again, and I dreaded once again being dismissed.
Doctor #5: Dr. Turning Point
I researched, read endless reviews, and finally decided on someone to go to. Doctor Turning Point: you were the beginning of my answers. You didn’t know it but you were, so thank you.
This first appointment went the same as every other. He listened. He was kind and he said my cysts were probably causing my pain. He ordered another ultrasound, and said everything else on my pelvic exam was normal.
Another week went by and he called me and said I need to make another appointment with him because my Pap smear came back abnormal. At this point I’m exhausted with everything. I’m sick of tests, imaging, and doctors.
I went in and had a cervical biopsy, and at the same time he told me my ultrasound showed just the left ovary partially solid cyst. So why was my pain back?! Why was it so random?! He had no answer. He changed my birth control again, said he would see me in a year for an annual Pap smear and probably another ultrasound. I liked this doctor, I did. He listened to me, he seemed to believe that I was in pain, and he wanted to help. He just didn’t have answers. Like everyone else, he just didn’t know what to do.
My cervical biopsy came back normal and I went on about my life. Months went by, my pain never fully went away but remained sporadic, unexpected, and debilitating at times.
Flash forward about 9 months and it’s April 2017. At this point, I’m having a plethora of new symptoms. I feel bloated all the time, constipated, nauseous (with vomiting at times), missed a period and that twisting, pulling, gnawing pain that seemed to radiate all over my abdomen was a constant companion. My first thought this time…maybe I’m pregnant. The test was negative, but I made an appointment with my primary care physician, concerned something is really wrong.
Doctor #6: Dr. Dick
I went in and explained ALL of my symptoms. He looked at me and said “you’re pregnant.” I told him “no I’m not. I took 2 digital tests at home and they were both negative. It’s something else.” “Yes you are, I’m the doctor here and pregnancy is the most likely cause. Your hormones just don’t register on a home pregnancy test. It happens to a lot of women. I’ll put in an order for a blood test you can go get it done at the hospital where you work.”
I sat there in shock. He didn’t care what I had to say at all. “Is that the only labs you are ordering?” I asked. “I’ll run some other labs too just to make sure there’s nothing else…you can go now.” I left that appointment feeling defeated. I cried in my car for a good 20 minutes. Why was he such a jerk? I think I would be able to tell if I was pregnant. But what do I know? No one has had answers. Maybe it is all in my head.
A few days later, I got a message from his office. I was not pregnant and all of my labs were normal. My reaction? Tears. Lots of tears. I still had no answers and it had been 6 years of dealing with pain, nausea, vomiting and constipation.
I called and requested one last appointment with my OB/gyn (Dr. Turning Point). He had me get another ultrasound before coming in for my appointment. The day of the appointment, I went in and expected the usual run around. I liked this doctor– he was upbeat and funny and made awkward appointments a little less awkward, but after 6 years I just wasn’t in the mood for funny or upbeat. I just wanted answers. And guess what? I was finally going to get some.
My ultrasound showed the same old cyst on my left ovary only it was bigger again, and another on my right ovary. My doctor prescribed another new birth control and then said a phrase that gave me hope…something I hadn’t had in a long time…”I want you to go see a specialist, he’s a reproductive endocrinologist and surgeon. One of the best. I think he will have answers and he will also be able to fix your uterus.”
I cried. And that same day I called and scheduled my first appointment with Doctor #7. My final doctor. Dr. Saji Jacob. May 19th couldn’t come soon enough.
Doctor Saji Jacob
When I walked into the doctor’s office the morning of May 19th, I was pleasantly surprised. The office was small, very personal, and I was greeted by the office manager Ashely right as I walked in the door. “Hi! You must be Allison! Good morning, have a seat and Megan our nurse will be with you shortly.” My anxiety almost instantly relieved. I didn’t feel like a number. I didn’t feel like just another patient. I felt like they cared and right then, I knew I had found the right place.
The nurse came and got me only 3 minutes after I got there, she took my vitals, made some pleasant small talk and then sat with me in the consult room until the doctor came in.
Dr. Jacob came in, shook my hand, introduced himself and then sat down next to me for our consult. I felt at ease; these people were so caring. We talked for almost an hour, I explained everything and repeated all of the same things I had told everyone else. He read over all of my previous imaging reports and all of the different birth controls. Then he said those 6 magical words that I have been waiting to hear for so long…“I think I can help you.”
He spent another 30 minutes with me explaining what he saw in the reports (mainly the MRI) that no one else had seen. My uterus definitely had a large septum and he needed to do another test to look at it and see how extensive the surgical repair would be. He also noted that my uterus was tipped toward the back of my pelvic wall. This position was also not normal and could cause pains. Remember that “hemorrhagic cyst” on my left ovary that was on every ultrasound? Well guess what? It’s not a hemorrhagic cyst. He called it a mass. Cysts are fluid filled. This was not. He said he couldn’t be sure of what kind of mass it was, but I was likely a large endometrioma(these can cause incredible amounts of pain). And lastly, he noted some abnormalities on my kidneys. My first thought? WHAT THE HELL ARE MY KIDNEYS DOING AT THIS PARTY?!
He told me he believed I was in a lot of pain and he wanted to help me, but part of that help would absolutely require surgery. I it was instantly on board. From there, things moved very quickly. He scheduled me to come back that afternoon for an SIS ultrasound and scheduled a procedure called a hysterscopy for Monday, May 22. This procedure would tell him more about my uterine septum.
I got to my car and I cried. Only this time, it was because I was finally getting answers. Someone was finally going to help me. I was happy, nervous, excited and scared all at once. Surgery was a scary idea. I could still lose an ovary and that terrified me. What if this mass wasn’t an endometrioma? What if it was something worse? I headed off to see my cousin Maureen to kill time before my ultrasound appointment. She can always lift my spirits when I’m in a funk. She’s my best friend and twinsoul, not just my cousin. As we talked and drank coffee, we laughed and decided that we were only going to be positive about this. It’s scary, but maybe I’ll finally be done with all of the pain.
Later that afternoon, I returned for my SIS ultrasound. The best part? Dr. Jacob did the test himself! My actual surgeon was giving me the results in live action. He projected the ultrasound on to a screen in front of me so I could see everything he was seeing. My right ovary looked good. When he moved to the left one, he said “there it is–there is the mass. It’s big.” He highlighted the mass for me and it was about 3 times the size of my ovary. No wonder I was in pain. He said surgical removal and pathology was the only way to confirm it was an endometrioma. There was a chance I would lose my ovary, but he would do everything he could to reconstruct it and save it after removing the mass. The next part was something I had never experienced. They inserted an IV into my cervix and then filled my uterine cavity with saline. This allowed him to better view my uterine septum and two uterine cavities. He said the septum was very large and then printed off a picture for me (see gallery). After the ultrasound, I left a doctor’s office feeling relieved and not defeated for the first time in years.
The next step was to prep for Monday’s Hysteroscopy procedure. No time to relax–I had to pick up prescriptions to take to prepare my body for the procedure. I had to secure a friend to take me to the appointment as they would be using local anesthesia and muscle relaxers to keep me relaxed throughout the procedure. I called my friend Terrie, and she didn’t even hesitate to say yes she would drive me. One thing I have found throughout the years of dealing with all of this is who my true friends and supporters are. I have some of the most amazing people in my life. Friends who would drop everything to be there for me. To all of you I say thank you beyond words: you have no idea how much your kindness means.
Monday morning rolled around and it was hysteroscopy time! I was nervous. My friend Terrie was excited, mostly because she was going to get to see me all loopy on muscle relaxers. Once again my surgeon performed the procedure himself and I was able to watch on the screen as well. The procedure was quick– only about 10 minutes and moderately painful. The nurse help my hand the entire time. The painful part was having my cervix dilated so he could insert a small camera (a hysteroscope) into my uterine cavity to get very clear pictures of the septum and uterine cavities. They used the saline IV for this procedure as well. It was very neat to be able to finally have a visual of everything that was causing my issues. He pointed out the septum. It was muscular, which would make the procedure to fix it more difficult, but not impossible. He also noted the tilt of my uterus again. It was being pulled toward the back of my pelvic wall, which is not at all normal. Thirdly, he saw multiple polyps in my right uterine cavity. All of these were signs that I could have endometriosis, and that led him to further believe that the mass on my ovary was indeed an endometrioma. All of the tests and information he needed were done. He told me he wanted to do surgery right away and that the office manager would help me schedule it. Just that quickly, I was scheduled for 2 surgeries on May 30th: A hysteroscopic
I left his office that day with so many thoughts. Was this real?! I had answers! My pain was real! It wasn’t in my head! And then HOLY SHIT. MAY 30th is only 8 days away. And then came more tears. Tears of relief, happy tears, scared tears, nervous thoughts of still maybe losing an ovary. I always knew I wanted to be a mom. It was the most important part of every dream I had for my future. The thought of losing an ovary was terrifying to me, but for the first time in years, I had confidence and trust in my doctor. Everything was going to be ok.
The Big Day: Surgery
I spent those 8 days preparing myself mentally and emotionally for what the surgery could bring. I talked to my boss at work because I would need about 1-2 weeks off work to recover. I let my support system know so they could take time off to go with me. My sister was driving up the morning of the surgery and my cousin Maureen would go as well. Every one kept asking how I was feel…”I’m fine” I would say, but on the inside I was anxious, scared, nervous, terrified, and worried that something would go wrong.
I couldn’t eat the morning of the surgery, and I didn’t eat after my dinner at 5:30, so I woke up hungry and full of nerves. I slept lightly off and on all night because I couldn’t shut my brain off. I woke up around 5 am and didn’t have to be at the hospital until 10:30. I cleaned to calm my nerves. I showered. I packed a bag for the hospital just in case I ended up staying the night. I called my sister to see how her drive was going and texted my cousin to see what time she would be there. My nerves got the best of me and I started to dry heave. My dry heaving irritated something in my abdomen and I got one of my severe cramping spells. This just affirmed how ready I was to get this over with. Everyone arrived to my house by 9 and my cousin brought me a wonderful little surgery recovery gift, full of snacks, coloring and a comfy new robe. We waited impatiently for 10 to roll around and off we went to the hospital.
It was surgery time! I went back for prepping while my family had to wait in the waiting room. They asked a million questions as they took my vitals… I was clearly nervous as my normally perfect blood pressure was 140/102. They had me change into the ever fashionable hospital gown, socks and hair cap, and proceeded to place multiple IVs in my hands and drew blood from my arm. Once I was all suited up for surgery, they let my family come back to sit with me. Countless people came in– nurses, CRNA, the anesthesiologist, and finally the reassuringly familiar face of my surgeon. He went over the procedure. We were removing the mass on my ovary to test it for endometriosis and removing the septum and polyps from my uterus. He promised to do everything he could to save my ovary. All in all the procedure would take less than 2 hours and I would likely go home in the morning. It was time. They came to wheel me into the OR. I was suddenly very nervous and got a little tearful as I was hugging my sister and cousin goodbye. “See you in a couple hours” I shouted as they wheeled me away.
I was still awake when we got into the OR and it was freezing! They said it would be, but it was still a surprise. I saw the DaVinci robot and couldn’t believe how big it was…the size of my small kitchen at home. My doctor would use the robot to complete my surgery and I would only have 2 small incisions, one in my belly button and another in my abdomen. The room was filled with people…who knew it took an army to complete a surgery?The last thing I remember is the CRNA telling me she was injecting the anesthesia and closing my eyes.
The next thing I knew I was waking up in the same OR and hearing lots of people calling my name telling me I did great throughout the procedure. I wanted to talk, I wanted to ask how it went, I wanted to know if I still had my ovary, but all I could do was think about how cold I was, how much I hurt, and that I just wanted to go back to sleep.The moments after were a blur of warm blankets and being transported to recovery.
I was in and out of consciousness in recovery, but I remember trying to ask questions. Every time I woke up I was in so much pain, that the nurse would hold my hand, give me pain meds and I would fall asleep again. I remember briefly glancing at the clock during one of my moments of consciousness and seeing that is was 5:45 pm. I thought to myself, that can’t be right, I went into surgery at noon, it was supposed to be less than 2 hours…something’s wrong. But the medicine took over and I couldn’t focus on it. Before I knew it there were two young people here to take me to my hospital room, I was being admitted for observation, I knew this was probably going to happen and I would go home in the morning. Just like that, I was being wheeled out of recovery. I apparently told the two transporters that the elevator ride was like six flags and I put my hands up like I was on a rollercoaster. For the record, I have no recollection of any of this.
I got to my hospital room and waiting there were my cousin and sister, two of my favorite people. I remember asking my sister “how did it go? What did the doctor say?” She wouldn’t tell me while all the admitting people were in the room. She just grabbed my hand and said “we’ll talk about it soon”. I knew this wasn’t good but I wanted to stay positive. About 30 minutes later when the admission has done, my sister kneeled down by my bed and grabbed my hand. At the same time, my cousin came to the other side and grabbed my other hand. I could tell by the look on my sister’s face that it wasn’t good news.
The removal of my uterine septum and polyps had gone very well, but when they opened my abdomen to remove the mass on my ovary they found much more. They found lesions, adhesions and masses all over my abdomen. They were on both ovaries, my Fallopian tubes, my uterus, my bowel, my bladder, and my pelvic wall. This explains all of my intense pain over the years. I had adhesions on the back of my uterus attached to my pelvic wall pulling my uterus backwards. The lesions and adhesions on my bowel were causing my constipation. The cysts and lesions on my ovaries and Fallopian tubes caused significant pain. The surgery ended up taking 5 hours, requiring 5 incisions in my abdomen and resulted in them taking 27 biopsies. I was diagnosed with stage 4 severe endometriosis, and while he was able to save both of my ovaries, my surgeon says my chances of ever conceiving a child of my own are very, very low.
All I could do was cry– this was a heartbreak I had never experienced before. It’s the kind of heartbreak you can feel in your bones. Thank god for my cousin and sister being there– I couldn’t imagine getting the news from anyone else. I ended up staying in the hospital for 3 days, having many emotional ups and downs, but ultimately coming to terms with the fact that I will be fighting this for a very long time. Surgery was a major step forward, but just that-a step. My journey with this disease will be with me forever and my fight is just getting started. Endometriosis has robbed me of so much, and one day this will all be a memory of a time filled with so much pain. Until then I say…ENDOMETRIOSIS YOU WILL NOT DEFEAT ME!!!