Endo Journey: Danielle

The following is a heart-wrenching story told by another lovely Endo Sister, Danielle. I recently met the Danielle through twitter, and was so happy that she agreed to share her story. Danielle has been down a long, painful path before finally being diagnosed with her illness. Please read on to learn about Danielle's struggle with bad doctors, endometriosis, and the emotional pain after her diagnosis:

Although I was diagnosed with endometriosis in October of 2011, my struggle with the disease goes back seven years ago.  I knew something was wrong when I started getting “stomach aches”. These stomach aches, located in my lower abdomen and lower back and sometimes stretching up to my stomach and chest, were all consuming and agonizing. On multiple occasions I found myself doubled over in agony, clawing at my own skin as I broke into a cold sweat.  Almost as quick as they started, the “stomach aches” would end, and I would be left feeling rather confused as to what these pains were. My mother took me to see a doctor, but no tests were run and the matter was left unresolved. I didn’t think much of it, as the mystery pains seemed to have gone away on their own accord. When I began getting my period regularly in High School, I thought that extremely heavy bleeding, agonizing cramps, and nausea was entirely normal. My friends often complained of cramps, and I figured that I wasn’t experiencing anything different. My condition took a turn for the worse around High School graduation in 2010. I recall my “stomach aches” had returned, and I couldn’t escape this painful panging sensation over my left ovary. I didn’t complain to my parents about the pain- I’ve always been a tough cookie and kept from complaining about things. But as the pain in my abdomen worsened, my mother brought me to the family doctor. The doctor set me up for an ultrasound, as he suspected I may have had an ovarian cyst. He also had me complete a test to determine whether or not I had stomach ulcers, which he suspected were the cause of my mystery “stomach aches”.  When the test for ulcers came back negative, the subject of my “stomach aches” was dropped and entirely forgotten, as my ultrasound results returned and it was clear that I had a small ovarian cyst. The family doctor then referred me to a gynecologist, and that is when my nightmare began.

In the weeks preceding my first ever gynecological visit, the pain over my ovary worsened.  Between periods, I had begun to bleed a thick, heavy, black discharge. I recall being at my friend’s Halloween party, and breaking down and bawling in his basement. I was terrified to find that my panty-liner was soaked through with black blood, which was different than the regular dark blood I often got before and after my regular periods. I knew something wasn’t right, and anxiously awaited my visit with the gynecologist. 

When my appointment with the gynecologist arrived, I was tremendously nervous. I have always been extremely private about my body, refusing to have physicals done at the doctor’s. The gynecologist was a very old man. What I am about to tell is entirely true and without exaggeration: this man had been practicing gynecology since the early 1950’s. He looked so old and so frail; it appeared that he would simply die just standing there in his own office. It was appalling to me that a man so old was still working! He made it very clear, though, that he had retired but was pulled back into the work force due to a shortage of specialists. The whole appointment started off on the wrong foot, as I was extremely nervous and uptight. I sat there with my hands in my lap, rubbing my sweaty palms against my sweatpants as I told the doctor about my recent diagnosis. Naturally, I wanted to know what the next step was. The old man told me that he would like to conduct a physical. My eyes grew wide and I shook my head no. The doctor told me that it would be extremely beneficial to have an internal physical done. I recall crying out that I was still a virgin and was not keen on the idea. The old man doctor offered a different internal approach, reminding me again that it would be extremely beneficial and help him make suggestions about my next course of action. I grudgingly agreed. I really didn’t handle the procedure well, and I was a complete head case by the end of it. The add insult  to injury, after the examination the gynecologist began asking me questions about my home life. He asked if I got along well with my brother, if my mother and I fought, and if I was happy at home. I rudely interrupted his questions, asking him what relevance my home life had to the cyst on my ovary. He proceeded to say that sometimes mental stress can exert itself on the musculoskeletal system. He told me that the pain I was feeling was a mental projection, and that I would not need treatment for the cyst. Outraged, insulted, and humiliated, I demanded my family doctor refer me to a different gynecologist. And that is when I met Doctor C. 

Dr. C reviewed my previous ultrasound report and suggested that I be put on a birth control pill to try and shrink the cyst. Having stubbornly clung to my virginity for eighteen years, I had never been on the pill, and the idea scared me. I was worried about being put on hormones, feared they would make me gain weight, and make me moody. But alas I agreed, and Dr. C had me put on Cyclen, and had me set up for another ultrasound in a few months’ time.  I began on the Cyclene but didn’t notice a change in the pain on my ovary. I had stopped bleeding the sticky black blood, but I was frustrated that the pain was still present. My ultrasound showed that my cyst had grown since my first ultrasound, and was about 6-cm in diameter. I was kept on the pill, and Dr. C said we would monitor the cyst with regular ultrasounds. I had asked about a laparoscopic surgery, but Dr. C said we would use it as a last resort and in the meantime continue with the hormones. As the months went by, I found myself becoming disabled with the pain. It had been bad before, obviously it was enough to spur me to see doctors and specialists. But it worsened, to the point where I could no longer take part in physical activity. I have always been a very athletic girl. I am a talented horseback rider, competing in barrel racing events in the summer and show jumping in the winter. While on the top of my game I was clearing nearly five feet on horseback and was confident in myself as an athlete. But I found that my pain was aggravated by physical activity, and my gynecologist advised me to take it easy and refrain from sports, as the cyst could rupture and cause an infection. I kissed a ski season, show jumping, and clubbing goodbye. Another ultrasound in the spring concluded that my cyst had grown again, but Dr. C still didn’t want to operate. I was convinced that I was stuck with the 9-cm large cyst (it was constantly growing, disturbingly by increments of 3-cm in all directions).

In July of 2011, I invited two friends to visit my family and I in our cabin in the Rocky Mountains. The weather was gorgeous, and my athletic self was dying to go play in the mountains. I was holding off on mountain biking (my dearest father I am so sorry that beautiful Mountain Bike you bought me has been collecting dust- one day when I am healthy I will use it), but thought that a simple hike would be harmless enough. We all head out to the mountains and spent a few hours on a Saturday afternoon hiking. I felt the cyst was aggravated, but I ignored it. We chose a more challenging hike the next day, and I loved it. The endorphins allowed me to ignore the pain in my ovary, and I felt so free being able to use my body again. Little did I know, I would be paying for that weekend of hiking with the most excruciating agony. 

On Monday, after my friends had driven home, I was struck by a sudden pain in my abdomen. I cannot put into words how bad the pain was. I managed to get myself into the bathroom, where I felt onto the counter for support. My entire body had broken into a sweat, and my complexion was stark white. I began to moan in agony, and my knuckles cracked as I gripped the counter top. I began to cry, and soon panicked when I realized the pain was getting worse rather than subsiding. I collected myself as much as possible and made my way downstairs to find my parents. My father helped me into the car, where I screamed and writhed in my seat as he drove me to the hospital. The doctors at the hospital were amazing and patient, giving my painkillers and saying soothing things. The pain began to subside, and the nurses suspected my cyst had ruptured, or I had twisted my ovary. If this was the case, I would need to be transferred to a bigger hospital in a city two hours away and it was an urgent matter, so I had an ultrasound completed right away. To everyone’s surprise, the cyst was intact. The doctors were baffled and didn’t know what was wrong. One doctor suggested that I had “bled into” the cyst, causing it to enlarge suddenly. That was the answer I accepted and I was sent on my way. Upon returning home, I made an appointment with Dr. C. I told her that I wanted surgery, and she agreed that it would be the right thing to do. My surgery was scheduled for October, 2011. And I couldn’t wait. 

When October finally rolled around, I was mentally prepared for my surgery. I was excited by the prospect of having my old body back. Although I was excited, I was very nervous. My father told me to “buck up”, so I shut my mouth and didn’t make another peep about being nervous. My father saw me into the waiting room, then left the hospital, telling me to call him when I was done. I’ll admit, I was taken aback and hurt, but I kept my chin up and bravely continued on. I remember being wheeled into the operation room, which was freezing cold. I eased myself out of the rolling bed and onto the narrow metal operating table, then a very nice woman attached electrodes to my chest and a drip to my wrist. It was then I began to feel overwhelmed and scared. I was all alone in a cold room on a metal table, and soon, my belly would be cut open. I maintained my composure as I met my anesthesiologist (her name was Dr. Sweet). But as the attendant (the nicest old lady ever) lowered the mask onto my face, I began to cry. 

I awoke to a nurse trying to slip disposable undies over my legs in a recovery room, and I began to scream. My face was extremely itchy, and I pulled the oxygen tube out of my nose in a panic. I was crying, and screaming for my boyfriend at the time. I slipped out of consciousness, then awoke in a different recovery room.  I threw up, felt extremely weak, and recall my stomach being bloated and tender. My incisions had bled through my gown and bed sheets even though they were covered with gauze. My face was itchy from the morphine I was on, and I wanted my father or my boyfriend to be there. A doctor that had been assisting Dr. C during my operation came to visit me, and that is when I learned I have endometriosis. Apparently my surgery had been complicated, and I had been under for 4 hours. My cyst, which turned out to be the size of a tennis ball, had ruptured during surgery and made  mess in my abdominal cavity. They discovered that I had “mid to high grade” endometriosis. The endometriosis was on my ovaries, my fallopian tubes, the outside of my uterus, my abdominal walls, and my bowels. I was shocked. There I was, lying in a hospital bed literally just bleeding through my pajamas, being told I had a disease I had never even heard of before.. I was high as a kite on my drugs, and struggled to comprehend everything. The Doctor told me that Dr. C would discuss everything in our follow-up appointment. 

Discussing my disease with Dr. C was hard for me. I cried during the appointment, as I learned that infertility is common amongst women with endometriosis. This was crushing to me, as I want to be a mom so bad. My health took a serious nosedive after my diagnosis. I became depressed, and after explaining to my then-boyfriend about my condition and the possibility that I may not be able to have children, he cheated on me and left me without a goodbye of any sorts. I developed a serious case of depression, and was prescribed a daily dose of Prozac. I developed an eating disorder, and became extremely skinny. When my pain worsened and I developed another cyst (once again on my left ovary) Dr. C suggested that I have a Mirena Coil inserted. I agreed. Having the coil inserted was excruciating. I was still a virgin, which caused me to feel extremely miserable about having the coil inserted. I screamed and cried during the procedure, as it hurt so much. I even threw up in the car on the way home. After the IUD insertion, I bled extremely heavily constantly. The amount of blood I was losing in combination with my anorexia left my extremely weak. I was hardly over 100 pounds, and was fainting and falling down the stairs on a regular basis. Truth be told, I was just full out miserable. I was so pale in the face and had such dark purple bags under my eyes that people stopped talking to me. My arms were bruised from all the blood tests I was having, to the point where I looked like a heroin addict. My hair was thinning and falling out, and I found no joy in life. I bled heavily and without end for six months straight. Six months. Imagine being on your heavy period for six months without rest. The bleeding was so heavy that one day I sat through an entire lecture and bled through my tampon and liner and through my jeans. My whole bum was stained red and I had to walk around the university with my leather jacket tied around my waist. I was crying constantly, and was making frequent appointments with Dr. C, complaining about pain and bleeding and feeling hopeless. She assured me that it was normal to bleed for a long period of time after having Mirena inserted, so I just shut up. During this time my mother was getting exhausted with me. She was tired of taking me to appointments, tired of picking up prescriptions, tired of her daughter looking so terribly sick. I remember sitting in the kitchen one day when my father returned from work. He looked at me, long and hard across the counter, then said “It looks like someone punched you in the face.” He was right, the bags under my eyes made me look like someone had broken my nose.  

But in the Spring of 2012, something amazing happened: I met my current boyfriend. I was determined that I wouldn’t tell him about my endometriosis. I was sure he would leave me, just as my ex had. But he noticed that something wasn’t quite right. I was always “on my period”, I often complained of abdominal pain, and in almost every candid photo of me since 2011 I am seen with an arm crossed over my abdomen. So I told him. I told my boyfriend a month or so into our relationship that I had a disease called endometriosis. He asked a few questions, and that was that. He has been incredibly patient and supportive with me during my healing process. When my body finally accepted the Mirena, the bleeding stopped and I haven’t had my period in about 8 months. Although I still have a cyst and I still experience pain, I am very grateful I no longer get my period, which is when my pain would be at its worst. Most of the time I am pain free,  and I sometimes even forget that I have endometriosis. But the disease makes sure to remind me that it is alive and well- I cannot handle any vigorous movement. Any twisting motion causes me agony, as the lesions gluing some of my insides pull apart. Sometimes, even something as simple as sitting down or getting up out of my seat has me frozen as I’m overcome with pain. I recall chasing my boyfriend’s younger brother around outside last summer. I sprinted after him, then collapsed onto the lawn, gasping for breath. The agony in my abdomen was unreal, like someone had stuck a vibrating cheese grater in there. I cried and clutched my belly and prayed for the pain to subside. One of the biggest struggles I have with endometriosis is the problems it causes with intimacy between my boyfriend and I. I did lose my virginity to him, and while I do love him and enjoy sleeping with him, sometimes I simply can’t as the pain is unbearable. I’m ashamed to say that I feel like less of a woman because of this. It has made me anxious and insecure, and endlessly frustrated. But I am reminded that my boyfriend is kind, patient, and gentle with me. For this I am incredibly thankful.  I tried the medication “Visanne” and it seemed to help to an extent. I will be picking up my prescription for Visanne and then begin a regular exercise routine. 

In the end, I am extremely thankful that I have been diagnosed with endometriosis at this young age. Because of this, I can work on preventing the spread of the legions, thus increasing my chances of having a family. It also gives me peace of mind, knowing that endometriosis is the cause of my mystery “stomach aches”, the reason why I had to be rushed to the hospital in July, and why going to the bathroom during my period was excruciating. To learn that there was a reason why I was hurting was such a relief. I cannot express how thankful I am to have found this support group, my lovely endo sisters. To know that I am not alone and that we are all here for each other is incredibly comforting. A lot of people brush us off. Because we have an invisible disease, many don’t understand the impact it has on our lives. To know that we have each other and to continue to raise awareness is so important.

-Danielle  

                                          

Thank you for sharing you story Danielle, endometriosis affects so many aspects of our lives. Endometriosis is not just a pelvic disorder - many other medical conditions can arise from endometriosis. I pray that you were able to overcome your eating disorder. Thank you for helping to raise awareness on endometriosis.

  

If any of my readers are experiencing eating disorders or depression due to endometriosis, please reach out to me. I will help you find help.

xo Heather