Endometriosis

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    Monika Sudakov

    How to Talk to Your Doctor About Endometriosis

    One of the most common stories told by those who have dealt with endometriosis is the challenge of getting a diagnosis. Doctors often don’t even think of it as an explanation for the symptoms commonly associated with endometriosis. Being your own advocate and approaching your physician about the possibility can often be a quagmire. Doctors don’t like being told what to think when it comes to diagnosis. Often they will dismiss you with a “Don’t use Dr. Google” comment without giving any consideration to the fact that maybe you have done your own research and are on to something. With this in mind, it seems useful to share some of the specific symptoms I experienced due to endometriosis that baffled my doctors, and some suggestions for how to get the proper medical attention and care that you deserve. Please note: I am not a medical practitioner and I understand that everyone experiences endometriosis differently. This is simply my own lived experience and what I wish I had known sooner so I could have had a better quality of life during my late teens, 20s and 30s. Endometriosis Symptoms to Look Out For Many of these symptoms can be indicative of numerous different medical conditions. But in combination, they may be suggestive of endometriosis. Irregular periods While amenorrhea is common for athletes or those with anorexia, my periods were irregular on and off even when I was not exercising a lot or restricting my caloric intake. In an attempt at regulating my periods, I tried everything from acupuncture and supplements to seeking the help of an herbal specialist who gave me a cabinet full of disgusting concoctions designed to rectify whatever it was that was causing the irregularity. Needless to say, none of these approaches worked to correct the problem. Extremely heavy periods with debilitating cramping and frequent large blood clots It’s hard to establish what a “normal” period is since every woman is unique, but if your period lasts more than a week, and is so heavy that you are having to replace your tampon or feminine napkin every hour or risk bleeding through your clothing, you may want to bring this up to your doctor. Additionally, some cramping is fairly common but can generally be managed with over-the-counter pain medication and a heating pad. I was taking prescription pain medication and still couldn’t get out of the fetal position due to the pain for the entire duration of my cycle, which often lasted up to 10 days, leaving me exhausted, anemic and unable to do anything. And, while some clotting is common for many women, large frequent clots may be a red flag that something more serious is going on. Infertility If you are having trouble conceiving and there is no clearly identified medical reason that either you or your partner cannot conceive, endometriosis may be at play. My gynecologist who finally diagnosed me told me that most of their patients with severe endometriosis have difficulty conceiving due to the amount of scar tissue left behind by the endometrial lesions. Abdominal bloating and discomfort I had always attributed this to my irritable bowel syndrome, but, in fact, a lot of the pain and swelling I was experiencing was connected with my endometriosis, not something gastrointestinal. The endometrial lesions caused inflammation that radiated pain into my abdomen and sometimes resulted in constipation alternating with diarrhea, only exacerbating my discomfort, particularly during my menstrual cycles. Frequent bladder discomfort, urgency, pelvic floor dysfunction All of these symptoms can again be signs of other medical conditions, but the scar tissue left behind by endometrial lesions can cause pain and frequency issues with urination that mimic an actual bladder infection. What I thought were constant recurring infections requiring antibiotics were actually attributable to the scars on my bladder. In hindsight I likely took antibiotics far too frequently for something that didn’t require them, something many physicians now warn is ill-advised. While I still have some residual issues with this from left behind scar tissue, a lot of it has been resolved by my laparoscopy and subsequent hysterectomy where they removed a lot of the scar tissue from my bladder. Painful sex This is an uncomfortable topic to discuss, especially for people with a sexual abuse history like myself. While there are perhaps other contributing factors to painful sex that may be related to the emotional effects of trauma, again, endometriosis can affect the vaginal canal and therefore may cause vaginal sex to be uncomfortable at best and intolerable at worst. How to Discuss Endometriosis With Your Doctor Make sure you are comfortable with and trust your doctor This goes without saying, but particularly where gynecological issues are concerned, it is absolutely crucial to find a doctor you feel 100% comfortable talking to about all aspects of your gynecological health, including sex and sexual dysfunction. I specifically needed a female doctor to feel safe due to my sexual trauma, however, each person is different. Additionally, it may be helpful to discuss this with both your primary care physician and gynecologist. If both of them are involved, you may find it easier to get appropriate and timely treatment. Thoroughly document your symptoms This includes the length of, pain level and any other important details associated with your menstrual cycle. The more specific information and consistent pattern of symptom frequency you can present, the less likely they are to dismiss you. It may help to create a chart noting your daily symptoms and when they flare, noting your pain level on a scale of 1-10, 1 being minimal to 10 being the worst pain imaginable. Make sure your doctor isn’t affiliated with a hospital or medical organization funded by a religious institution At the risk of offending someone which is not my intention, I specifically had to deal with a doctor who refused to allow me to get a hysterectomy because it conflicted with his religious beliefs and those of the managing institution of the clinic he worked for. If I had this advice when I was going through treatment in my late 20s, I would have recognized the situation and sought a second opinion from someone else not within that institution. This may also affect coverage for treatments like birth control, which is commonly prescribed as a way of managing endometriosis. Don’t take no for an answer If your doctor ignores you or negates your suspicions that you have endometriosis, don’t give up. Persistence pays off. If one doctor won’t listen, seek counsel from another. Nobody knows your body better than you do. If you sense something is wrong, pursue it. Nothing frustrates me more than hearing stories from individuals whose doctors disregarded their symptoms or suggested they were somehow imagining them. This is particularly common with chronic illnesses like endometriosis and even more common with illnesses that typically affect women, partly because women’s voices and unique needs are often misunderstood or discounted. And one final note about getting treatment for endometriosis — don’t wait. So often women suffer in silence with this condition for decades. You don’t have to. Many new therapeutics are being developed to manage the symptoms of endometriosis and new diagnostic tools are becoming standardized that can make getting a proper diagnosis quicker and less invasive.

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    Community Voices

    Living Life With Endometriosis: What to Expect

    I was 12 years old when I woke up one Saturday morning laying in deep red blood on my hot pink bed sheets. I got up and went to the bathroom to discover I had just started my first period. “Welcome to womanhood, my love” my mom said from her bedroom jokingly. I wasn’t that phased, it was a part of life. I got up and started a shower, and the next thing I know, I’m on the bathroom floor coming too again as my mom tries to frantically wake me up after passing out whilst trying to get out of my shower. Nothing could have prepared me for the way my life would drastically change forever from that Saturday morning as a 12-year-old girl. Nobody had told me that every month in the days leading up to my period I would have pain that would stop me in my tracks and make my whole body freeze and tighten up out of nowhere. As if the pain was slowly suffocating me to the point where, I had to hold my breath because each breath made the pain just travel further and further. Nobody told me about the chronic fatigue I would feel that would put my life on hold because my body feels like it starts to shut down in this haze of exhaustion. Nobody told me about the golf ball-sized blood clots I would pass each month, and how the heavy bleeding would always soak through every single pair of underwear I changed into, regardless of the pad I just changed not even 10 minutes ago. Nobody told me I would have my head over the toilet being physically sick from the pain I’d endure for days on end each month. But when I presented these symptoms (and more) that I was experiencing to my doctor, what they did tell me is that it was a “normal part” of being a girl. I was told to take some Panadol and I’d be “right” in no time. Each and every doctor I went to, assured me I was fine and these things are normal. Years passed, and I was still experiencing the same dreaded period pains. I also began to bleed and clot heavily out of my normal cycles and pain started to persist through the month, regardless if I was bleeding or not. I felt like I had no control over my body. I was 18 when I finally heard the word “endometriosis” after being sent to a doctor first thing in the morning from my boss at work, as she could see I was unwell and “white as a ghost” as she put it. The doctor referred me to a gynecologist who I met with and was soon put on a waiting list for a laparoscopic surgery to try and get some answers for my years of pain. My one-hour scheduled diagnostic laparoscopy turned into a four-hour procedure where my surgeon found extensive endometriosis in my uterus, pouch of Douglas, bowel, bladder and it had damaged my uterosacral ligaments. Nothing prepared me for the heart dropping, gut-wrenching feeling I would feel at my post op appointment where I was told at just 19 years of age, my chances of having children naturally were very limited. They said to “act quickly” if I wanted a chance to be a mother because of the extent of damage my endometriosis had caused in my reproductive organs. Nothing could have prepared me for the side effects of the multiple drugs I would trial over the next 12 months to try and get some relief and manage this disease, and then the disappointment of them all failing. Nothing could prepare me for the fact that at times, I would be labeled as a drug seeker by medical professionals when trying to get pain relief, despite my never-ending paper track record of endometriosis and everything that comes with it. Nothing prepared me for the emotional and psychological toll endometriosis would take on my mental health. The toll it would take on my relationships both intimately and with friends and family. The fact that no matter how much I threw myself into my work that it would never be enough due to my endometriosis making me ill so often. It changed my own views of who I was as a person; I felt like my own body had failed me and broken me, along with my spirit. Nothing prepared me for the words I would hear from my surgeon 18 months later at the hospital after my second laparoscopy where she said, “It has all grown back, there are new endometriosis lesions that have formed in the same places where I previously removed them, and then more too.” This is life with endometriosis. There is no cure. This is just one story out of a million other stories of women just like myself. We go through surgery after surgery, in hopes to get some relief, in hopes to live pain-free even if we know it may only be for a short period of time. We live with hope to fall pregnant and have the families we’ve always wanted, in hopes to live better quality lives. End the delay in diagnosis. I am 1 in 10.

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    Kristi Menello

    My Mental Health Journey Following Endometriosis Surgery

    It’s been one year ago that I went into surgery with normal expectations. My doctor and I had talked thoroughly, and I was prepared for all scenarios mentioned, or so I thought. Two hours after my surgery had started, at 12:31 pm exactly, my heart went into cardiac arrest. I stopped breathing. Code blue was called, and a team of doctors and nurses fought to get my heart started again. It was eight long minutes before they got my heart started again. No one ever tells you how painful it is to wake up after eight minutes of CPR. I’m here to tell you, it hurts very badly; but I survived. The next four hours of my life were the worst. They called code blues on and off as I struggled to fight to stay alive. The nurse by my side kept speaking to me, “Stay with me Kristi, keep breathing for me.” She would shake my body firmly, but gently, to help keep me awake and alive, because every time I drifted off to sleep, I stopped breathing and my heart rate dropped. I had no pain killers in my system and just had my organs removed and endometriosis excised from my abdomen walls and sacral joints. Not only did my chest and spine feel like I was crushed by a semi-truck, but the pain from surgery itself was excruciating. I had to fight to stay awake and feel all of it so my heart and lungs wouldn’t stop again. As I drifted in and out of consciousness, I remember looking around and seeing all the frightened faces of the nurses. I could hear them talk to each other as they scrambled to figure out what to do, because apparently my situation had never happened before and they were terrified. I’m the one patient with rare complications that all doctors and nurses dread. I did warn my doctors before surgery, and thought they were prepared, but they had no idea it would get that bad. Even through it all, I was glad I had a whole team by my side who was quick to help me through the worst day of my life. I spent the next several weeks struggling to even function. The CPR may have saved my life, but my sternum, spine and ribs were bruised. I literally had a palm sized bruise on my chest. I had bleeding under my sternum that formed a large hematoma. Breathing in was very painful; raising my arms was not possible. I couldn’t hold onto much of anything and dropped everything I tried to grasp. I had difficulty with word recall and slurred, garbled speech. I kept passing out from the metabolic acidosis that had developed from the raised hemidiaphragm. It may have been a struggle and long recovery, but I was alive, which is what matters. I had difficulty sleeping for about a month, the post-traumatic stress disorder (PTSD) kept haunting me. I was terrified every time I tried to fall asleep, afraid I’d stop breathing again. Logically, I knew I was going to be OK and didn’t think it would be a big deal. But apparently my body didn’t believe me. I kept having nightmares of dying every night. The constant pain from CPR and surgery was fueling my nightmares. I often woke up gasping for air because my brain was convinced I was dying all over again. Once my CPR injury had started to heal, I could move around more. I was finally able to do some gentle exercise to gain my strength back. I had started to feel amazing for the first time in my whole life. That is when I knew my surgery was successful. I had never known what I had been missing out on. I was able to move without severe pain, my muscles didn’t ache like I had done an extreme form boot camp exercises, my spine was flexible and didn’t seize up every time I bent, my hip had no pain when walking or running, my chest had stopped hurting, and my stomach was smaller than it had been in years due to the endometriosis bleeding into my abdomen every month. I was so excited to know what a “normal” body felt like for the first time in my whole life. Then in late October, only three months after surgery, I started to get familiar pains again, my muscles started to get stiff and hurt again, my spine began to stiffen and hurt, my hip began to hurt, my sacral joints shifted again, my chest pain started to hurt and the constant exhaustion kicked in once more. Since we had moved, I had to find another endometriosis specialist. It took a couple months before I was able to see the doctor. They ran more tests to confirm my endometriosis had grown back. I was told that I needed revision surgery. We set a date for surgery after the holidays. Unfortunately, I was not able to make arrangements at the time. I soon noticed I wasn’t able to reschedule this revision surgery because an old fear had crept in. I spiraled into a deep depression because I wasn’t sure I could face another surgery after what happened the last time. Not to mention another surgery to recover from in general, and I wasn’t even fully healed from the first surgery. However, for my sanity, I decided to travel to a more specialized team of endometriosis doctors in Atlanta, with the Center for Endometriosis Care (CEC). They are more equipped to deal with complicated cases. They are not in network with any insurance company, but they do help you file claims and such. We will also need to be able to have the budget for travel expenses and be able to plan a time around my husband’s job. We do not have any family who is able to come and help during surgery and recovery time, so it is up to my husband to do it all alone. This year has been all about recovering, physically and mentally. I am finally at a place where I am able to think about the revision surgery and not spiral into despair and depression. As I look back to one year ago today, I am so thankful I had my surgery; even with the complication, I’d do it all over again. It did change my life with 50 percent less pain, and it gave me hope of a better future for myself. While I have been learning to navigate my own mental health, I have been learning to find my inner voice. Even through all the pain and complications, this has been an amazing journey I never expected.

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