endometriosis Archives - Page 15 of 16

Eating and Endometriosis: My Story

Published on December 6, 2012

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I have suffered from endometriosis for as long as I can remember. I am sharing my story so that others may learn from my experiences, and be encouraged to share their own. By sharing our stories, our voices can make a difference in the lives of other women struggling with hormonal issues.

This is my story about food, an eating disorder and my battle with endometriosis.

For as long as I can remember, food has always been a big part of my life–and often a challenging part. When I was a baby, I started to have severe reflux from infant formula and Pablum, a precooked infant food made from wheat, oats and corn. Was my reaction an early indicator of a food intolerance?

I remember the food we ate growing up because it was the same thing every week. Chicken sprinkled with salt, pepper and garlic powder or meatloaf with mashed potatoes some green string beans. Another day we’d have spaghetti with ground beef or hamburgers with brown beans and a nice glass of cold milk. I would always have seconds. On rarer occasions, we would have cabbage rolls, liver, chef Boyardee ravioli, Kraft Macaroni and cheese or Campbell’s Tomato soup with grilled cheese.

For breakfast we would have corn flakes, rice puffs or toast with cinnamon spread. I remember having Jell-O, candy and popcorn but for the most part we ate healthier than other families.

When I was in middle school I would get home starving and would heat up some ravioli or whatever was on hand. Most of the time I would be too full to eat dinner, but I would still have to eat.

In High school for the most part I didn’t eat. I would be in a hurry to catch the bus so I wouldn’t eat breakfast or bring a lunch because I had to make it. By the time I got home I would eat Kraft dinner then go back out. I weighted only around 100-110 lbs. I was a very active teenager, and sometimes forgot to eat. If I was on my period, I lost my appetite for a week and if I did have a bowel movement the pains were so intense.

I started to have a love/hate relationship with food.

After high school, I continued to struggle with my eating patterns. I had a friend who kept saying she was fat and she was a size 0. I have never been a size 0 and all I could think was ” if she is fat then what am I?”

I began to starve myself. Living in a constant state of hunger went on for around 7 years and then turned to binging and purging, the classic cycle of bulimia. I continued to purge up until 2009 when I realized that I needed to stop. I was able to stop purging, but I continued to binge. It was a vicious cycle.

I was also in pain from the Endometriosis rectally. I had generalized pelvic pain as well. I remember being nauseated and seeing stars all the time as well as blacking out.

In 2002 I became pregnant and started to eat 3 times a day while gaining over 70lbs but I wanted to make sure she was healthy and after I gave birth to my daughter I wanted to make sure she ate the best food possible. I became interested in avoiding processed foods for myself and my baby. When my daughter was 6 months old, I started making homemade pureed foods such as spinach, peas, carrots, applesauce and sweet potatoes.

My friend was a vegetarian and she introduced me to a whole new way of eating. She made me see how important food is encouraged me to focus on healthier foods like fish and quinoa.

My focus on eating whole foods changed my life.

I eventually decided to experiment with going gluten-free. I was on and off for so many years because it was really hard for me to do. In Nov 2010 I saw a naturopathic doctor who told me I had food intolerances to Wheat, Spelt and Dairy and that I was not fully absorbing any nutrients vitamins or minerals. She also said that I had Candida in my large and small bowel. She put me on a Gluten free and dairy free diet as well as many supplements. I succeeded in following the diet for 3 months then was put on Amitriptyline for the Endometriosis. The make me crave every single bad food out there. I felt really upset that I didn’t have the willpower to walk away. My cravings grew in intensity.

Even just eliminating gluten for 3 months, the Chronic Dermatitis on my toes went away for the first time in 3yrs and has not returned. Also all of my painful perineum fissures went away for awhile. Unfortunately they have since returned.

I have now embarked on a new Journey that started Nov 1^st 2012 and I have been gluten and dairy free. I plan on continuing and not giving up. I mentally feel better but I still struggle with stomach pain.

There is so much confusion and conflicting information about diets to follow. It is difficult to learn what is actually best for my body.

I know that I experience positive changes when I maintain awareness of how foods affect my digestion and mood.

I am devoted to continuing to learn which foods to avoid and to nourish my body to alleviate my endometriosis symptoms.

What affects have eating and dietary changes had on your endometriosis symptoms? Share your story.

To read more about my struggles with endometriosis, click here.

Personal Perspective – Hormones, Mood and Endometriosis

by Angela Wice

Published on November 29, 2012

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When I think back to when I was 10, that is when I started to get chronic headaches. This must be when my hormones started to kick in. I got my period at 13 and from then on things for me have never really been the same.

Hormones, Menstruation and Mood: Was there a Connection?

I had emotional outbursts as a teenager but I couldn’t connect them to my periods at the time because my periods were all over the place. My period could come every 15 days or 45 days. I never knew when it would come. There was no consistency and I was never one to check it off on a calendar, or worry about it.

I remember my teenage years as being dark and depressing. I couldn’t seem to get out of a funk. It only got worse after I graduated from high school. To me that was the beginning of the end, with excruciating abdominal pain, migraines and mood swings. In the 10 years since leaving school, I was diagnosed with multiple co-morbid diseases such as Fibromyalgia, Chronic Fatigue Syndrome, Thoracic Outlet Syndrome, Restless Leg Syndrome, Depression, complicated migraines and finally endometriosis when I turned 27.

Doctors made me feel so crazy in my head and were quick to tell me I was depressed. I was once told by a doctor that he couldn’t see me anymore because I cried too much. After seeing at least 40 doctors, I was starting to really breakdown mentally. Why was everyone ignoring what I was saying? No one seemed to listen. They just pricked me with needles and said I was fine. I knew I wasn’t fine.

Pregnancy and Postpartum Hormones

I had my daughter when I was 25 and from that point on, the hormones went through the roof. I thought I was losing my bloody mind. I started to get more and more migraines to the point I had no choice but to go to the hospital to get medicated. Nothing seemed to work because of how sudden they would come on. I didn’t know at the time that my hormones were so out of whack. All I knew was that my mental state started to deteriorate and I no longer felt safe in my own apartment. I was seeing demons in my room. I was freaking out on my daughter. She was only two years old at the time. I knew I was suffering from depression now, but this was too long after postpartum wasn’t it?

Could it be Postpartum Depression?

I was watching TV one day and saw a show about postpartum depression. I decided then and there that I was going to bring myself to the hospital and just pray they wouldn’t take my kid away from me. I ended up talking to some man that didn’t even get what I was saying. He just threw me some sleeping pills and told me I was just tired.

Hormones, Mood and Endometriosis: Maybe There was a Connection

Soon after being sent home with sleeping pills, for what was likely postpartum depression, I received the results from a recent ultrasound. The 10cm cyst that would eventually lead to my diagnosis with endometriosis, was found. I was put on Marvelon21, a form of hormonal birth control. From the first week, I swear on my life, I felt like my world was full of rainbows and butterflies. I didn’t have the depression or the horrible thoughts. I started to really calm down. To this day, it is rare for me to get really angry and yell. I really think my hormones had me trapped for far too long. It is probably the main reason why I don’t ever feel that I could stop taking Marvelon ever. It saved my life. One little white pill, a very low dose birth control pill worked for me. Although, I know it doesn’t work for everyone.

I definitely feel that there are more than just hormones that affected my state of mind. I don’t feel that my body has ever been normal. I was an object of wonder when it came to doctors and their students. I was treated like a piece of dirt by every doctor. Most acted like I was making this all up. The few that were actually nice, didn’t really tell me to do anything further with treatments. They just told me what diseases I had and sent me home. No follow-ups just more confusion.

I try not to focus on the co-morbid diseases like I once did. I take one problem at a time. I refuse to believe that I actually have some of these diseases. Either way, I am not going to let my ill-health steal my life or my mind another day.

Pelvic Inflammatory Disease Post Endometriosis Surgery

by Angela Wice

Published on November 15, 2012

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Part three of my twenty-five year battle with endometriosis.

I went to a walk-in clinic to get a pap done for the bleeding that was happening during and after sexual intercourse. While waiting for the results during the week I was on the floor doubled over in the most intense pain I have ever felt in my entire life. I went to my general practitioner; I was white, slight fever and delirious. I was in so much pain. I told her I had a pap done, but the results were not back yet. I was told to call the walk-in for the results but they weren’t back in so they had to call the lab. In the end, I was told I had Pelvic Inflammatory Disease (PID).

None of it really sunk in right away because I was in so much pain I thought I was going to die. I was given an antibiotic but I was in so much pain I threw up the medication in the parking lot, picked it back up and put it back again. I was delirious, I couldn’t think straight and I really have no idea how I got home that day. All I knew was I was in pain. I got a phone call from the pharmacy three days later telling me that they had given me the wrong dosage and it should have been 3x what I was given; that explained why the pain never went away. The disease was pretty much wreaking havoc on all of my insides, everything that was fixed with my endometriosis surgery. I was devastated.

Years later, I realized that my doctor made the wrong choice in medicating me as she should have sent me straight to the hospital to put me on an IV drip because there were abscesses that burst and were now covering all of my insides. From the day of diagnoses of the PID, the pains never really left. I started to have problems having bowel movements, which I hadn’t had since before the surgery. I just couldn’t go and I felt that my bowel was twisted somehow so I went back to my surgeon. He looked at me like I was making up my pain and that there is no way I should have pain and should go home. I was so angry.

About 6 months later, I ended up in the ER for excruciating pain on my left side near my ovaries. At this time I swore it had to be my bowels but it wasn’t My tube was enlarged and there was blood inside and all around it. They had no answers for me, just sent me home. I researched it. Either it would be tubular cancer, PID remnants or endometriosis in the tube. I knew it wasn’t cancer; it has to be either the PID, that was not treated properly almost 3 yrs later, or endometriosis.

During this time my pap came back with mild dysplasia twice so I was sent to my gynecologist to have a colposcopy. The test showed high grade lesions with no HPV. The pains persisted during sexual intercourse and so did the bleeding.

At the beginning of 2012, I went back to my surgeon again as pain during sex as well as bowel movements and urinary pain and he said there was fluid in the cul-de-sac and if it was endometriosis, a prescription of Lupron would resolve the issues. I went back three months later. I was too afraid to have sex during that time, but it made no difference, the doctor it isn’t endometriosis. “You have Neuropathic Pain Syndrome,” I was told. At that point I could have put my hands around his throat and strangled him. This surgeon had the worst bedside manner ever. He knew I was going to the Wasser Pain Management Clinic in Toronto and said that if the gynecologist there (he had trained her) agreed to the surgery he would do it. However, I already decided that I was never going back to him because every time I left his office, I cried for hours.

In July 2012, my gynecologist at Wasser agreed to do another surgery since I had only had one. She put me on various medications such as Gabapentin, Amitriptyline and Visanne. During this time I was calling her office to actually book the surgery and I didn’t get a hold of her for months later. Finally, on November 6^th 2012, I made an appointment to book my surgery for this year or the beginning of next year.

To bring you up to date my husband and I got married in August 2012 at city hall and are going to Dominican for a symbolic ceremony. My dream is to be able to finally have sex with no pain with someone I truly want to spend the rest of my life with.

Until my surgery I continue to take the Marvelon and do weekly if not twice a week enemas as I can no longer have a bowel movement. I hope that whatever damage was done, any endometriosis that is there and any scar tissue that is obstructing my bowels, will be removed so I can carry on with the next chapter of my life.

Forty Years of Pain and Still No Diagnosis

by Louise Heiner-van Dalen

Published on November 12, 2012

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I am Louise Heiner-van Dalen, 63 years old. I live with my husband André in Elim, a little village in the east of the Netherlands.

The Pain of Puberty

From the moment my periods started at age 15, I had a lot of cramps and stomach pain. I went to the practitioner, and he did screenings of my blood and urine. Nothing was found. This was in 1964. The doctor told my mother that I was making it up to get attention. So my mother and my younger sister started telling me that they were strong and never complained, while I was weak and always had something to complain about.

Every two weeks I had a lot of pain, and I felt so bad; I really was ill. My mother and sister started to call me names and to tell everybody how childish I was.

Miscarriages and Endometriosis

I got married in my 25^th year, and after two years, in 1976, we really wanted to get pregnant. In those years I lost two ‘babies’ during the first part of pregnancy.

We went to the gynecologist and examinations started. Fertility examinations did not seem to be possible for some reason, and in those years the only option was a diagnostic laparoscopy. Then they found that there was a kind of flap mechanism, which was why they couldn’t do the first examination.

During this surgery they also saw that there was a lot of endometriosis in the abdomen. They had to tap off a lot of infection. When I woke up the doctor told me it was impossible to get pregnant because the ovaries were shriveled up by the endometriosis.

He gave me medicines that should have stopped my periods for a longer time, but after a couple of months enormous bleeding started. I was not able to take a step because of the bleeding and there was no way to stop it.

My husband and I talked about it, and with pain in our hearts we decided to that I should have surgery to take out my uterus and ovaries. We were afraid that going on like this could cost me my life, and I didn’t like to live like this. I was only 29 years old, it was 1978.

Hysterectomy

After we talked with our practitioner and with the gynecologist, my surgery was planned. The gynecologist told us that they would inspect everything, and it maybe it would be possible the take out the endometriosis and to keep the uterus.

When I woke up after surgery, I felt the incision with my hand, and it felt empty. I knew. In those years, the gynecologist thought that leaving a tiny little piece of one the ovaries would be enough to prevent problems with estrogen hormones.

Post-Surgery- Cycles of Pain

I could no longer have children. We planned on adopting before we got married, so we started the process before my surgery. In the mean time, I didn’t feel well, but it was hard to tell what it was. My muscles and joints started to give problems, and I had a lot of headaches. Every four weeks I had several days of physical discomfort and mental instability.

In 1980, we adopted our first baby boy and we were so happy, but I was still in pain.The doctors kept on telling me that I needed medicines because of mental problems. I refused that, because I was sure that there were other problems. The abdominal pain returned. Another gynecologist did a laparoscopic examination again, and again he found endometriosis and a few chocolate cysts.

Our second baby boy came in 1981. The gynecologist monitored my condition.

Premarin, Other Hormones and Psychosis

In 1992, after another surgery, doctors conducted an intra-uterine inspection and discovered that my mucus membranes were very thin and sometimes bleeding. He decided to give me Premarin, an estrogen hormone.

In a short time, I felt better than ever before. We were so happy and the gynecologist told me that I had to take this for the rest of my life. But then more and more the doctors found out that using this medicine could cause a greater risk of developing breast cancer.

Because of my husband’s job we had to move every four years or so. This meant every four years I had to find a new house doctor. In 2004, our new house doctor forced me to stop the Premarin. I refused. Then he refused to give me a new prescription. Day by day, my situation got worse. There were signs of psychosis. I had a lot of pain in my legs and seven nightly perspiration in 15 minutes, so I never slept. We asked the doctor to send me to an endocrinologist, but he refused saying it was all mental problems and I had to see a psychiatrist. I refused, and my husband went to the doctor to tell him that he wouldn’t leave before he had a referral letter for the endocrinologist. The doctor gave him the letter, and my husband told him that we would never come back to him.

The endocrinologist agreed with my need for the medicines. He did screenings of my blood and wanted to monitor my progress. We had to find another practitioner.

Prescription Mishap – Pseudo Pregnancy and Leg Pain

In 2010, I planned to travel to Québec, so I took my new prescription for Dagynil, a hormone, to the pharmacy four weeks before I left. I told them that it was important to have them in time.

Shortly before leaving, my husband went to the pharmacist to get my Dagynil, but they didn’t have to correct dosage by mg. They gave him a splitter and told him that I could simply split the tablet. I always thought that it was not good to split this kind of medicines, but the pharmacist said it was safe.

During my stay in Québec, I felt more and more sick, especially in the morning, with nausea, and my daughter-in-law joked that I seemed pregnant. After the month long trip, I came home and a week later I felt another psychotic attack coming. I knew for sure that the pharmacist and the house doctor had made an enormous mistake.

My husband called for the doctor, and he didn’t believe us! I had so much pain in my legs, I felt so bad, and was really panicking. I asked the doctor to make a phone call to the endocrinologist, but he refused. Again the same story!

It took three weeks; by then I was so upset that I started to shout at the doctor as soon he entered my room. I lived in a strange world that wasn’t mine. I wanted to die to be with the two little babies I had lost. It was horrible. I kept on shouting at the doctor, and he was trying to make a phone call for a psychiatrist.

My husband told the doctor that it would be better to make a phone call to the endocrinologist. Finally he agreed, and the next morning he made a phone call to us to tell us that we had to go to the hospital immediately. Thank God!

The endocrinologist felt so sorry for me. Again the same story. He agreed that I was pregnant – at least I had all the signs – but there was no baby, of course. It took several weeks before I was feeling better after this bad adventure. I was prescribed the correct dosage of Dagynil and slowly I felt more myself.

Today

In 2011, we moved again, and we found a good, friendly doctor. We told him openly about the problems we had in the past, and he listened very carefully.

About six months ago, I woke up and felt strange, like another psychotic attack was coming up. I made an appointment with the doctor and told him that there seemed to be something wrong. He looked through blood tests from the last few months, since I needed monitoring because I have collagen/microscopic colitis. Then he saw that my thyroid numbers were going up slowly but still within the margin that is normal.

I asked the doctor to make a phone call to the endocrinologist, which he did immediately, while we were sitting there. The endocrinologist explained my hormone troubles, and he advised him to prescribe Euthyrox. I was happy and felt better within a couple of weeks.

My abdominal pain is still there, and nobody knows if it is the endometriosis or the colitis, but another surgery will give more scars and troubles inside. Forty years of pain and problems and I still do not have a diagnosis and my treatment plan changes often.

My Experience with Women’s Health, Endometriosis and Hormone Research

by Lauren Chmiel

Published on November 10, 2012

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My journey into the fascinating world of hormone research officially commenced in 2007, when I joined together with group of psychology and anthropology students who decided to create the Hormones and Disease Group at University of Nevada, Las Vegas. Our goal was to disseminate information about diseases and research via workshops, lectures and presentations to the UNLV community, as well as the greater Las Vegas community. We wanted to not only enlighten ourselves, but to help other students and community members who may suffer from health problems such as Polycystic Ovarian Syndrome (PCOS), endometriosis, diabetes and cancer (to name a few).

Hormone Research, Endometriosis and Misdiagnosis

I became further involved with hormonal research in the winter of 2008 after one of my professors from UNLV’s Anthropology Department introduced me to Dr. Chandler Marrs and the Maternal Health Lab. At the time, I was under the impression (thanks to a misdiagnosis) that I suffered from endometriosis, and with a desire to learn more about myself and other health issues specific to women, I became an undergraduate research assistant for Dr. Marrs. I believed that women’s health research was severely under-funded (a position I maintain), so in my mind, Dr. Marrs and her students were a beacon of light in a confusing, dark world filled with many questions and not nearly enough answers. Personally, I assisted with human menstrual cycle research and the role hormone fluctuation plays in the lives of young women. I believe this type of research is incredibly necessary for understanding the connection between our bodies and minds.

As someone who lived approximately 6 years of her life believing she suffered from a disease she did not have, I understand the desire to self-educate as well as assist others in understanding their own bodies, pain management techniques and alternative treatments. Not only was I coping physically with pain, I had to psychologically deal with my diagnosis and what the possible implications of endometriosis are. I went through a number of gynecologists and it took many years for my diagnosis to be corrected (I had a hernia that was creating scar tissue around my uterus and intestines). The discovery of this was a shock; not only can a hernia be fixed rather easily, I had grown accustomed to the role of an endometriosis patient seeking answers for herself and others in the same situation. However, looking at this from a positive perspective, this misdiagnosis had opened me up to a realm of health I likely would have not been so interested in.

In tandem to my position with the Maternal Health Lab, I have also conducted independent, original research for diabetes and alternative medicine as a student of medical anthropology. For me, food is a large aspect of our lives that can either hurt or harm us; it can be poison or medicine. In my opinion, the link between diet and health is incontrovertible. The more this is part of the public discussion, the further we can raise awareness and help people make better lifestyle choices. Personally, I am curious about the connections that exist between our dietary choices and how they can interact with our hormonal pathways. I believe Lucine Biotechnology is a sorely needed resource for women who are tired of having unanswered concerns and questions and I look forward to contributing to the Lucine community.

Endometriosis and Neuropathy

by Chandler Marrs, PhD

Published on November 5, 2012

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Every now and again, I stumble upon research that I believe will absolutely shift a paradigm in a particular field. That happened this morning. Sprouted Innervation into Uterine Transplants Contributes to the Development of Hyperalgesia in a Rat Model of Endometriosis, published in PLOS One earlier this year, is groundbreaking. Results from this study suggest that endometriosis is a neuropathic pain disorder or in layman’s terms, a nerve disease. This finding will open entirely new directions for the diagnosis and treatment of endometriosis, if it is heeded.

A Rodent Model of Endometriosis

Researchers from Florida State University, transplanted small pieces of uterine or fat tissue next to the abdominal arteries of female rodents. The uterine tissue became vascularized and formed cysts, the fat did not. More importantly, the transplanted uterine tissue sprouted nerve connections (innervation), which led to vaginal hyperalgesia or increased sensitivity to pain. Over time, as the density of nerve fibers increased, researchers speculate that signals to central nervous system become hyperactive or sensitized to pain.

Interestingly, the density of nerve fiber innervation was not regulated by the size of the cyst, some large cysts located near the ovaries or peritoneum didn’t innervate at all or only minimally. Rather, nerve innervation developed according to the cyst’s proximity to densely innervated anatomical areas such as the rectovaginal septum and the uterosacral ligaments. This may explain why pain does not always correlate with the size of cysts or stage of endometrial disease. It appears that it is the degree innervation that determines the level pain.

Squelching the Pain of Endometriosis Before It Begins

If the innervation is associated with endometrial pain, it is possible that curtailing the nerve growth could eliminate, even prevent the pain, but only if this disease process is identified early enough.

In the rat model, innervation developed in phases. Within the first two weeks of the tissue implant, a cyst developed and initial sensory and sympathetic nerves sprouted. Over the next weeks, the nerve sprouts became functional and neurogenic inflammation developed. Finally, over weeks four and five, the cysts became wholly populated by functional sympathetic and sensory nerve fibers. Pain ensued. Researchers found that removing the cysts before they reached the functional stage prevented the development of neuropathic pain- the vaginal hyperalgesia.

Although it is not clear what the time course of cyst innervation would be in human women -for rats the entire estrous cycle is 4-5 days, significantly shorter than the female menstrual cycle- it is clear that efforts should be made to identify and diagnose endometriosis significantly sooner than is currently the average.

That would require investigating the causes of dysmenorrhea and not automatically attributing the pain with menstruation to normal premenstrual or menstrual cramping, as is so often the case. Currently, the average time to diagnose endometriosis is nine years. Research suggests that 90% of adolescent girls have dysmenorrhea and 25-38% of adolescent girls with chronic pelvic pain have endometriosis.

If cyst development stages could be identified in women and if endometriosis diagnosed earlier, then removing or treating cysts before fully innervated could prevent a lifetime of what we now know to be neuropathic pain.

Endometriosis, Hormones, Nerves and Neurons

Better yet, let’s determine what is causing the extra-uterine tissue growth and subsequent innervation in the first place. Though many are loathe to admit it, hormones are likely involved. In many regions of the brain hormones elicit and modulate neurogenesis. Research also demonstrates a role for hormones in spinal and peripheral nerve functioning. As results from this study suggest, hormones may also influence somatosensory nerve growth in the uterine and extra-uterine endometrial tissue. Understanding the role of hormones in the innervation of endometrial tissue could open up entirely new therapeutic options.

My Battle with Endometriosis and Migraines

by Angela Wice

Published on October 31, 2012

8180 views

Twenty-Five Years for the Correct Diagnosis: Endometriosis

My name is Angela Wice and I am 35 years old. I had one child with natural birth in 2003 and was diagnosed with Stage IV endometriosis June 2006. My Journey has been long, depressing and still not over 25 years later. Here is my story.

Early Childhood and Early Troubles

I was a very busy active, athletic, child growing up. I would say besides being born with jaundice, I was healthy until I turned 7 years old. I was rushed to the hospital because I started bleeding rectally. I was operated on within hours of being at the hospital for intestinal volvulus and appendectomy. They sewed my bowel to the pelvic wall so it wouldn’t happen again.

By the age of 10, I started to get chronic headaches and was told to stay away from chocolate, peanuts and cheese.

The Pain of Endometriosis

I got my first period when I was 13. The second time I got my period is when the pain started. I had the worst cramps ever, my legs would go numb, I was nauseated, I was bloated, and I was in so much pain I would vomit. I remember them saying that you should only bleed 1 TBSP a period and I was like “Are you kidding me, I do that in an hour!!”

My mother took me to the doctor the same year. The doctor did an ultrasound and a transvaginal one as well. The pain was so bad on the left side when she inserted it inside me but other than that nothing showed up but she did say that I possibly had endometriosis. That was at 14 years old, nothing was done about it. I was given Naproxen and that was that.

Endometriosis and Migraines

My first migraine happened when I was working at around 16 years old. My whole right side went numb including my tongue. I went to the hospital and they said it was an Aura Migraine.

By 17, I was far beyond constipated and the rectal pain I had was so severe and sporadic. To be honest, I never really put two and two together because I could just be driving and all of the sudden it felt like was being stabbed with a knife in my rectum. That never went away. It was constant.

I knew I was getting my period because I would, all of the sudden, not have constipation and I mean literally evacuate all my bowels at one time. That was my sign to start taking the Advil, and by the next morning or the middle of the night there it was. Sometimes if I didn’t take the Advil in time it was too late, nothing would work. I would pump my system with so much of it until my period was over. During my period I could not have a BM at all until my period ended. It was excruciating. I got fed up went to see a gastrologist. I had a colonoscopy and was told it was IBS, which I did not believe. That was the first of over 40+ doctors/specialist I was to see until I was diagnosed.

Endless Misdiagnosis

For the next 15 years it became a blur. I was depressed, angry, frustrated, disappointed, rejected and in so much pain that never seemed to end. I went to doctor after doctor only to be diagnosed with fibromyalgia, chronic fatigue syndrome, restless legs syndrome, thoracic outlet syndrome, TMJ, irritable bowel syndrome, chronic pain, cluster migraines, complicated migraines, neuropathic pain syndrome, overactive bladder, depression, anxiety and I developed an eating disorder (Bulimia).

I was at the end of my rope in 2006 and had another ultrasound only to find out my results were misplaced until I called 3 months later to find out that I had a 10cm complex cyst. I was sent to an oncologist who took blood work CA125 to see if I had cancer. The first test done was 37 on my period and 78 when I was ovulating. He felt positive it was endometriosis and sent me to a local gynecologist who told me nothing could be done about the Endo and to take Lupron. I refused, as I had done my research. She then put me on Marvelon21 and sent me on my way. One thing changed for sure right away from taking the birth control pill and that was the chronic nausea was gone within a week, acne cleared up and my mind was right. I really felt like I got a new lease on life.

The Power of Patient Groups

I ended up on Medhelp and found a great group of women that to this day we still talk. We have a private group of about 20 women on Facebook called the BBBC (Bulge Battling Battalion Cysters). Some of the women had cancer, some were in remission, some had Endo etc. They were my support and still are, without them I would have surely not been here today.

I did my research and found the best Endo doctor in Ontario. It took 3 minutes for him to find the rectovaginal cyst that had caused me so much pain all of these years. I was in tears, tears of relief that finally, finally someone knew what was going on. He couldn’t do the surgery because I had previous bowel surgery so he sent me to his protégé and he operated on me a month later.

My story continues. More next week.

Underinsured, Underdiagnosed and Anonymous: My Hormonal Hardships, Part 1

by Hormone Stories

Published on March 8, 2012

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It all started in my late teens. Recent high school graduates, my then-boyfriend and I were on our way from O.C. to L.A., when a driver entering the freeway rear-ended us as they were coming off the 91 onramp. A suddenly totaled car and severe case of whiplash quickly changed our prior plans, sending us instead to the local E.R. for immediate medical attention. A series of rush diagnostic tests later, my CT and MRI scans confirmed that I had suffered a C2 cervical neck-spine fracture with lumbar nerve involvement in the collision. I was fortunate to be alive, and luckier still to have survived without brain damage or paralysis, but I would not be simply walking away from this, either. Quite the reverse, it was actually just the beginning of a long battle to come.

Injuries sustained from the crash had triggered a myriad of chronic side effects and secondary conditions, including (but hardly limited to) chronic pelvic pressure, lower back pain, hip misalignment, fatigue, dizziness, and at that time, as-yet “undiagnosed hormonal issues.” I was 19, hurting, scared, and tens of thousands of dollars in debt overnight, due to my emergency room stay, all, through no cause of my own. Having to drop out of college to go through rehabilitative therapy and further hormone assessments over the next couple of years only seemed like more of an end-all to my young future back then. Launched head-first into a cold, cruel world of consistently inconclusive diagnoses and expensive, limited healthcare options, I truly felt the social stigma of being sick and uninsured. Splitting up with my high-school sweetheart a mere few years later, in no small part, because he wanted to have “children of his own”, I also really grew to feel the societal shame of being female and infertile, as well. So, I found myself dually disheartened as my abdominal pain and pressure continued to worsen, going on undiagnosed and untreated clear into my early twenties, despite the ever-growing list of costly blood labs, urinalyses, ultrasounds, and other screening tests, that my doctors had already exhausted.

Even with an employer-provided PPO, it would still be almost five years before any specialist would finally suggest what might be wrong with me (maybe endometriosis, maybe not), or explain what could have caused my prospective condition (maybe trauma from the earlier wreck, maybe not), much less tell me about potential treatments (oral contraceptives, laparoscopy, hysterectomy, or just plain living with the pain and hoping for the best). I was again referred to yet another gynecologist for yet another pelvic sonogram when, at long last, the ultrasound image revealed the suspected endometrial mass, once and for all (or, so we thought). The new gyno’ subsequently diagnosed me with endo’ and put me on low-dose combo estrogen-progesterone birth control pills, taken seasonally, as an alternative to surgery and nerve damage risks. The pill helped relieve some of my symptoms for a while, but it was far from being a permanent cure to my ailment, and ultimately became much more of a curse than a relief to me. Additional complications from an unexpected, ruptured ovarian cyst, followed by an increasingly negative response to the synthetic hormones, also lead to questions about my original diagnosis and method of treatment. Did I have endometriosis at all…was it something else entirely…what do I do now…what do I do next? …

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Hormones Matter

Where health, hormones, and a whole bunch of other stuff, make sense.

endometriosis - Page 15

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Personal Perspective – Hormones, Mood and Endometriosis

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