endometriosis Archives - Page 4 of 16

Navigating the Doctor Patient Relationship When Tensions Fly

Published on June 28, 2017

4.5K views

Recently, I was contacted by a patient who raises a good point that I have been pondering awhile – doctors becoming angry at patients. In this case, the patient was asking questions about the advisability of working with the utero-sacral ligaments and pelvic floor support when her he blew up at her. This is not the first time we have had reports of a specialist unloading on a patient. It’s hard to say why these things happen, every case is different, but in my 52 years as a nurse I have some thoughts.

In the past patients accepted blindly what doctors said and offered. For many this worked out OK. They did, after all, know more than we on any given subject. And for doctors this was the most efficient way.

In endometriosis, with less than 100 doctors doing effective surgery, the ‘doctor as expert’ model has not worked out so well. So part of the endometriosis awareness process has been to educate women with as much information as we know and understand about endometriosis. This leads to informed patients who want to fully understand everything that is being recommended or discussed; patients who now understand why so many of their treatments in the past have failed.

To the doctor who truly is an expert, he or she is comfortable with their knowledge base. For some physicians, however, particularly those who are not well versed in endometriosis, questions can be taken as affronts even when posed in the nicest way. The reaction can be surprising to the patients because they are trying to become more educated, to understand fully so as to avoid the revolving operating room door of one ineffective surgery after another.

What To Do When the Doctor Patient Relationship Sours

While most of the experts do not have issues with interactions, occasionally they do go south. We always have had to walk the fine line between ego and skill with doctors. Not all doctors are like this, but ask any nurse who has been in the field for a number of years, and you will find that some are. Here nurses can be allies. Over the years the nurse doctor relationship has improved for the most part and physicians have come to see nurses as assets, as opposed to subservient workers. I suspect we will see the same evolution between educated patients and doctors as time goes on. Even now, I run into doctors who appreciate patients coming to the office with a better understanding of their disorders, as it saves time and makes treatment and patient education needs easier. So if you are having difficulty with a doctor, if you have questions that are not being addressed, ask the nurse as she often has the doctors ear and can be helpful. Not all doctors offices employ nurses though so ask to be sure.

Dr. Google Evoking Tensions Within the Doctor Patient Relationship

Sometimes the information on message boards and other internet groups is incorrect. This can be frustrating for the physician and confusing for the patient, particularly when the situation is not handled appropriately. In these cases, it is a good idea to check with the nurse, perhaps review the information and even get a second opinion for clarity. As someone who works online to educate patients, I understand sometimes our information is incorrect. In our case, we have been fortunate to have some physicians, who are willing to sort out our misinformation and correct our teachings. To the extent we may have a role in the misunderstandings between patients and doctors, then I apologize.

What I won’t apologize for, is helping women and their families understand why things have not worked in the past and what to avoid for the future leads to better care. That means for endometriosis care and education we are looking for doctors who are committed to excision of disease, who can help patients in one or two surgeries, who do not feel the need to use GnRH agonists or other medical therapy (which has never been shown to TREAT endometriosis but may quiet symptoms temporarily). True experts in excision have had long-lasting relief for their patients in one or two surgeries, and will only use drug therapy post op to stop periods where the uterus is quite painful and the patient wants to keep it. Then, with periods suppressed a patient may well be able to keep her uterus and have less pain until conception or until she reaches menopause.

The Second Opinion

In reality, a good doctor will welcome your questions. If you are running into resistance then it might be time to seek the opinion of another specialist. Sometimes it is a simple matter of personality differences and no matter what you do, things will not improve. It is OK to move on if you are not comfortable.

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Image credit: CC0 Public domain; https://pxhere.com/en/photo/851933

This article was published originally on Hormones Matter in March 2014.

Endometriosis, Adhesions, and Physical Therapy

by Philippa Bridge-Cook, PhD

Published on May 16, 2017

16.9K views

Almost a year ago, I had a surgery that was supposed to fix all of my health problems, not create a whole set of new ones. My endometriosis symptoms had become severe and debilitating—I was on medical leave from work, wasn’t much help to my family, and couldn’t go out with friends. I searched out the best endometriosis specialist in Canada and scheduled laparoscopy excision surgery, a procedure where all of the endometriosis the surgeon can find is cut out. Although excision surgery is not a cure, it is one of the only endometriosis treatments that offers many women long-lasting relief from symptoms.

My excision surgery seemed, on the surface, to have been successful. My endometriosis had been extensive. It was found on the walls of my abdomen and pelvis, on my left ovary, on my large intestine, and on my left ureter. In addition, I had extensive adhesions (bands of scar tissue) that had bound those organs together and attached my intestines to my abdominal wall. My doctor had removed all the endometriosis, cut all the adhesions, and removed my left ovary and tube, which were badly damaged by adhesions and were unsalvageable. I cried when I heard the news, out of relief. My severe symptoms were explained, and the cause of them had been treated. My doctor had characterized my surgery as long, difficult, and complicated, but ultimately successful. I felt that once I healed I would have a very good chance of feeling much better.

If someone had told me that the next year would bring another surgery, several ER visits, several hospitalizations, a new diagnosis, and a new set of chronic problems that rivaled my old symptoms in severity, I might have questioned their sanity. I went home from my surgery sore, but very relieved that it was over with. I didn’t know that my battle with adhesions was just beginning.

Adhesions are scar tissue that forms inside the body in response to injury. Some adhesions are thick bands, and some are more diffuse and filmy. They can glue organs together and to the abdominal wall, which can interfere with the function of the organs that are affected, and cause pain. Many organs need to move in order to be able to function: for example, the intestines need to be able to move to push food through, and the ovaries and Fallopian tubes need to be able to move for the ovary to release an egg and have it move down the tubes into the uterus.

Surgery is a major cause of adhesion formation. One third of patients are readmitted to the hospital an average of 2 times in the 10 years following open abdominal or pelvic surgery, for conditions related to adhesions. The most common problems caused by adhesions are chronic abdominal or pelvic pain, small bowel obstruction (where the intestines are kinked or twisted, and are partially or completely blocked), female infertility, and inadvertent bowel injury in subsequent surgeries. Although minimally invasive laparoscopic surgical methods are superior to laparotomy (open surgery) for many reasons, laparoscopic surgery does not necessarily result in fewer adhesions.

Surgeons typically underestimate the incidence and complications caused by adhesions, and information about adhesions is provided in only 9 percent of surgical informed consent forms. Adhesions occur in 70 to 95 percent of patients undergoing gynecologic surgery, and post-surgical adhesions are cited as the primary cause of bowel obstruction. Adhesions are responsible for over one billion dollars annually in health-care costs in the U.S.

After my excision surgery, I had complications due to an undiagnosed bleeding disorder (see my story here) that resulted in another surgery 7 weeks after the first. Adhesions were once again found and cut during that surgery, but despite that, about 6 weeks after the second surgery I started to experience symptoms that eventually turned out to be adhesions again. The conundrum of adhesions is that surgery is both a treatment, and a cause. Multiple surgeries can increase the number of adhesions, although there are some surgical techniques that minimize adhesion formation to the extent possible. My problem with adhesions was likely exacerbated by my undiagnosed bleeding disorder, since meticulous control of bleeding during surgery is one important way to minimize adhesion formation.

By four months after the second surgery, my symptoms were once again greatly affecting my quality of life. I had severe pain in the left lower pelvic area that prevented me from doing many activities. I had severe lower abdominal pain and nausea after eating, even when eating only small meals of food that should have been easily digested. When my intestines would get partially blocked due to bowel obstruction, the pain was intense and I couldn’t eat without throwing up.

The pain I would get after eating would come on suddenly and intensely. It was waves of sharp, stabbing, knifelike pain that would leave me doubled over. I was afraid to eat while I was out of the house because sometimes I would end up on the bathroom floor, unable to move without throwing up due to the intensity of the pain. I started to hate food and avoided eating whenever I could.

My doctors (a general practitioner, an endometriosis specialist, a gastroenterologist, and a pain management doctor) all agreed that I likely had a problem with adhesions, but they all also agreed that little could be done about it. Unanimously they said that although I might get better with another surgery to cut the adhesions, I might also get worse. I was offered the typical array of medications, including antispasmodics to decrease the intestinal pain I had, antidepressants, which can sometimes be helpful for visceral (organ) pain, and the fibromyalgia/anti-seizure drug Lyrica.

After doing some research, I decided that a specialized form of manual physical therapy that treats adhesions non-surgically (Clear Passage Physical Therapy) was probably my best hope. I travelled to Miami twice for treatment with an amazingly compassionate and skillful physical therapist. I was amazed on my first trip to notice a big difference in my symptoms fairly quickly—on my second day I was able to walk up a small hill and a set of stairs without any pain, something that hadn’t been possible since the problems with adhesions had started. I also started being able to eat a little more normally. By the end of the second trip, my symptoms had improved very significantly.

I still have to watch what I eat quite carefully, and even as I write this I am recovering from another partial bowel obstruction. I don’t think my intestines will ever be the same as they were before my surgeries; they may always be affected to some extent by adhesions. However, I have to keep in mind that the gastrointestinal symptoms I had due to endometriosis on my large intestine prior to surgery were also very unpleasant and affected my quality of life. So fear of adhesions is not a reason to avoid surgery, but it is important to be aware of the potential for problems. I was lucky that my doctors recognized the problem as adhesions very quickly, since many doctors do not. And I was also fortunate to receive physical therapy treatment that finally, a year after my excision surgery, has allowed me to feel like I am really getting my life back.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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Photo by Anete Lusina.

This article was published originally on Hormones Matter on July 22, 2013.

When Your Wife Has Endometriosis

by Daniel Pfeil

Published on March 14, 2017

8.9K views

For the first two wonderful amazing years of our life together, it all seemed like a dream. Everything was a dream; no fighting (still don’t), no needing time apart only wanting to spend time with one another. Everything was perfect. It was just how I pictured a perfect marriage should be. We tried to start a family but were having a difficult time because my wife had PCOS (polycystic ovarian syndrome). After six months of trying, we sought the help of a fertility doctor.

February 2016, we had just moved in to our new apartment, and had all the hope in the world that this was our year. My wife started her medications and we followed the rules and guidelines for us to start our family. One night we were talking on our deck about the future, where we should move to raise our family, where we could afford rent and still be close to her parents as they were very excited for grand babies. When we tried to get inside, we noticed that the door had locked behind us and now we were stuck on our deck (thank the universe it was summer). After a long while, we got help and made it inside to go to bed. Then all of the sudden my wife’s pain and discomfort shot up from a high 6 that it had been at for at least a week to about a 10.

We went to the hospital, and after waiting for what seemed like forever, we finally saw a doctor. He said bluntly that my wife had a softball-sized cyst that was causing her pain. They never told us this on her last ER visit, which was 4 days prior to this one. At that visit, they brushed off her pain and she was given pills to “help” with her pain until it passed. How could they have not seen a softball-sized cyst?

After many more hours of IV pain meds and no eating, she had emergency surgery. She ended up her losing a fallopian tube because it had been twisted and was dead from the cyst. As she recovered, it was not long before she could not move again because the pain was back and at times was so much worse.

She stopped eating from the pain and lost so much weight. She was in such a dark place it was all I could do not too just cry and beg her not to give up. One night we went to another hospital, one because the ER had quicker wait times, but for another doctors opinion. That is when a simple sentence from that amazing doctor’s mouth changed everything. She said, “I think you may have endometriosis,” and asked if they saw any endometriosis during the surgery. These words will haunt me until my grave.

After what seemed like every possible test they could run, they finally agreed to do another surgery to look for endometriosis. Sure as shit, they found it and “burnt it out”. Since that surgery, nothing has changed, except for the worse. I have read what feels like everything I can find on endometriosis. I came across another man’s perspective on dealing with his wife’s endometriosis and it made me tear up because I know the feeling. There is a gut wrenching feeling of helplessness, a feeling as if you have let your wife down for not being able to take any pain away, how the only thing you can do is make sure everything is good and that she has nothing to worry about. I try to make sure she feels taken care of. I try to help her feel as good as she can while battling this.

The good days are amazing and it is as if all of this becomes a distant scary memory but it can change it a heartbeat. One minute everything is good and the next, she just wants to lay down and rest because the pain is kicking her ass. There are 3am pep talks that keep her grounded and feeling positive in a world of what has quickly become negative. There are special dinners brought home to her to make her feel more human than she has all day.

One of the hardest parts for me is the helplessness. It is an overwhelming pit of darkness to look in to the eyes of the love of my life and help her believe as strongly as I do there is still hope for a pain free future, that all of this will be nothing more of a bad memory for her and for us. The absolute hardest is to not be able to have children with my wife, that we made ourselves. It is a tearing feeling. One second I feel fine and the next it feels like my heart has been ripped out of my chest and crushed in front of me.

Since day one of her battle with this gut wrenching disease I told her, and have reminded her, for better or worse, in sickness and health. I said those words with all my heart and for the rest of my days and beyond I mean them. The only advice I can give for the boyfriends, girlfriends, wives and husbands is be there, don’t brush it off like so many do in the world. If it is three in the morning and they need to talk, listen. If they need something to help them feel better, get them that. Even if it is the last of your money until payday. They ask for it because it might just make it a good day instead of a bad day. Remind them you are not going anywhere and that you are in it for the long haul. It might seem like you keep saying it, but to them it means the world to hear those words. Tell them they are loved and supported in this fight. They may already know that but it makes them feel special.

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Kidney Stones: Not Just for Men

by Stephanie March

Published on February 2, 2017

7.1K views

When I first felt the unknown pain in my lower abdomen it was so sharp and so intense that I ended up in the fetal position on my living room floor. I was moaning, in tears, and scared. The hot fire sensation was ripping through my right side and around to my back. I had never felt anything like it before. I was home alone with nobody but my cat to sit there blinking at me in confusion.

My initial thought was it must be from the endometriosis I was diagnosed with a few years prior. Maybe a cyst on my ovary? A bladder infection gone unnoticed that was suddenly out of control? I knew it just had to be some kind of female problem. What else could it be?

As I made my way to the nearest emergency room I thought I was going to pass out from the pain. I was driving myself, which I highly don’t recommend, and considered pulling over to call an ambulance. I was extremely nauseous, dizzy, hyperventilating from a combination of nerves and pain, and somehow cold and sweaty at the same time. Luckily, I made it there safely.

When the Doctor first spoke with me he too suspected it was something related to my endometriosis or perhaps a cyst on my left ovary. I was given pain and nausea medication and sent for a CT scan.

A little while later the Doctor returned with some odd news: I was passing a kidney stone and it had gotten stuck, causing an extremely painful condition known as renal cholic. Essentially, this teeny tiny rock was making my kidney contract as it tried to push it out and into my urethra. But wait. I had a kidney stone? I was an early 30-something female. This didn’t happen to females, right?

Kidney Stone Prevalence and Composition

Kidney stones occur in 10.6% of males but they also occur in 7.1% of women. That translates to roughly 1 in 11 people in the United States from both genders combined. This is not only a male problem or an older person problem, as I was now finding out.

Not only was I passing a kidney stone, I had developed several others in both kidneys. They sit there, waiting, like little nuclear bombs that can drop at any second. Or at least that’s what I told my Doctor while under the influence of some very strong pain medication.

The pain eventually subsided enough for me to go home and the fluids they pumped through my IV helped the stone, which I never saw, pass from my body at some point. The next day I was sent to see a urologist. I was easily the youngest person in the waiting room and couldn’t help but laugh at my misfortune.

According to the urologist, there are several types of kidney stones. To find out which type I was personally dealing with would require me to catch one with a strainer. It was metal mesh with a long handle and loosely resembled something you would use while cooking in the kitchen. Unfortunately, I am stubborn and got tired of using mine so I never caught the stone. Also not recommended.

Fighting Kidney Stones with Diet

I was given information about diet and certain foods that can contribute to the formation of kidney stones. Like any pamphlet about food handed to you by a doctor, this contained many of my favorite things like sweet tea and chocolate. I tossed the information in a drawer when I got home and sat down on my couch to pout.

After my pity party, the realization of it all began to settle in. I was fairly young and dealing with several health problems including endometriosis and the frightening reality of multiple kidney stones. I really never wanted to experience that again and knew it was time for a change. A real change. A drastic change.

My urologist mentioned stress being a possible factor for the creation of kidney stones and encouraged me to reduce it. At the time, I laughed and said “I wish” but I now realized that he had a point. My stress levels were out of control and had been for a very long time. I tried different things to reduce it but nothing seemed to truly work long term.

Yoga, Mindfulness, and Meditation

I dragged out my laptop and searched YouTube for beginner yoga videos for stress relief. I thought it was a long shot. I am the opposite of flexible, but I decided to give it a try. I tried one video and then another. Before I knew it, I was wrapped in my own little bliss cocoon. I was hooked. I began to practice on a regular basis from the comfort of my home and eventually branched out to practicing mindfulness and meditation.

Mindfulness graphic — Photo courtesy of Nova Southeastern University. Link to full image listed below.

While I wasn’t sure that yoga and practicing mindfulness and meditation would stop my body from producing or passing more kidney stones, I loved the way it calmed my maxed out mind. It undid the knots that formed along my spine and in my neck and shoulders from stress and anxiety. I was sleeping better and felt happier.

This change led to me wanting to make more changes. Another huge culprit of kidney stone creation is dehydration. I was a chronic soda and sweet tea drinker. The only water I drank was in my coffee each morning. I thought giving up these beverages and switching to water would be torture. Impossible. But it wasn’t.

Small Steps, Big Changes

I began with drinking water throughout the day and having either a soda or sweet tea with dinner at night. Eventually I found myself craving water at dinner. I kept the one cup of coffee in the morning and began tracking my water intake with an app on my phone. I began drinking green and herbal teas when I craved something with flavor. I became an antioxidant nerd and found I loved researching the benefits of different types of tea.

All of this water drinking led to me pulling out those pamphlets about diet. I began with slow changes. Less fast food and pizza and more cooking at home. More vegetables and fruit. I made it fun by looking up new recipes on Pinterest. Eventually I found that I craved the exact foods I used to avoid.

I joined a gym for the first time in several years. I lost weight. And, a year later, when I went for a check up visit with the urologist after passing no additional stones I was told I had also not created any new ones. What I was doing appeared to be working.

Kidney Stone Management

Recently, I found myself in the emergency room not once but twice with kidney stones. So back to the urologist I went. The bad news? In the past year my kidneys have created about half a dozen more stones. Kidney surgery is being discussed. The thought of it makes me squeamish.

The good news, although this was not a happy development, is that I know what worked before. I have slipped in my yoga and exercise and I have backtracked a bit on my healthy eating. Okay, fine, I backtracked quite a bit. But there’s nothing like the excruciating pain of a kidney stone and the awareness of more that could strike at any moment to grab your attention and get you back on track.

There are many chronic health conditions we don’t think about very often as women and kidney stones are one of them. However, chronic kidney stones can lead to kidney disease and possible kidney failure. We are more than our reproductive organs and we need more than knowledge about the importance of mammograms. Ladies, please drink your water and take care of your kidneys.

Mindfulness photo courtesy of Nova Southeastern University. Full image available here.

This post was published originally on Hormones Matter in October 2015.

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Dealing With Endometriosis Naturally

by Morena Protti

Published on November 9, 2016

10K views

In August 2016, I discovered that my endometriomas were shrinking, without surgery or traditional Western medications. I had previously had surgery a year and half before for my endometriosis, and after only 10 months, other endo lesions and cysts developed in various areas, including the bowel. I learned that endo is a chronic condition, and I couldn’t picture my life having many surgeries again.

It was pretty shocking. I was always told I was healthy, or just “aging”, until I was diagnosed with a chronic illness for which medicine can only try to suppress symptoms. The options for traditional treatment of endometriosis are medications, which all have side effects in some form or other, or surgery, which can potentially compromise organ functions and create complications through formation of scar tissue. Both methods do not address the causes of the illness and do not work to rebuild the body’s ideal health and balance.

I did my research. Bowel endo can be risky and difficult to treat. The surgery may either cause perforation of the bowel or may need to remove part of the bowel, decreasing quality of life. I looked for alternatives, and I found out I could improve my symptoms naturally, but only through some serious changes. I become hopeful, trusted in myself, and motivated more than ever.

Many say relief from endometriosis symptoms is out of our hands, but having these symptoms shows that my body is not functioning properly, otherwise my health wouldn’t be compromised. I needed to do everything necessary to help my body heal and work as it should. For instance, for years I suffered with sinus issues and only got corticosteroid spray and many rounds of antibiotics. I now know that my sinus issues were caused by inflammation, and medications deplete the gastrointestinal system, opening the way for candida and leaky gut.

So I approached my disease with many paths: diet, holistic medicine, exercise, toxin reduction and mental support.

Diet and Supplements

With the help of my naturopath, I addressed my diet. We focused on an anti-inflammatory diet overall, adding Brassicae family vegetables, fibre and flax oil to help with estrogen metabolism and clearance. We also did food sensitivity testing in order to help reduce overall inflammation. This also helped with the chronic sinus problems.

I added some supplements in a program individualized for me by my naturopath. I used probiotics to help improve my digestive health. I used a supplement called Estresense to improve estrogen metabolism through cleansing the liver, and to reduce total estrogen in order to balance this with progesterone (helping improve symptoms such as heavy and painful periods). I also used a progesterone cream: to help counter balance the effect of excess estrogen and prevent the progression of endometriosis, and to improve PMS symptoms associated with low progesterone, and excess estrogen (low moods, cramping, acne, insomnia, breast tenderness). I took B-vitamins and magnesium to help with liver metabolism, to improve PMS symptoms associated with low progesterone and excess estrogen. I used fish oils as an anti-inflammatory.

Adapting to the diet and supplements was very difficult. It took several months to understand how important it was for me, through tons of reading and personal experience, and stop grieving the food of my past life. I now do a diet similar to paleo (with only hormone free sources of proteins and mostly organic and unprocessed food ), as most of my food intolerances are important sources of protein in a vegan diet, like beans, nuts and seeds. Indeed, I felt even sicker when once trying the China Study diet, a vegan diet.

A doctor suggested sexyfoodtherapy.com, a great website, where a nutritionist has very yummy recipes and offers a motivational support network to stick to the plan, which includes exercises and meditation.

Other Natural Approaches

I made a point of doing 90 minutes of exercise every day, which included walking, biking and yoga. I discovered that doing the hardest activity in the morning would address my fatigue issues.

Regarding the toxin reductions, I threw away every care product that had toxic components and replaced them with natural ones, or made my own, and I did the same for the house cleaning products. I also substituted plastic containers for glass ones, did skin brushing and castor oil packs.

For mental health and general physical balance, I had acupuncture weekly or biweekly at a community acupuncture studio, which also helped to balance my hormones. I joined a local support group which helped me to understand more of my symptoms, to be able to talk about it to other people, and to inform my family and friends. I also did meditation, Reiki, body talk and Shiatsu. I started to say no to people when they were asking too much for what I could comfortably do. I put myself and my health first, and stayed away from any abusive kind of relationship or situation.

I’m looking forward to the day I’ll be completely cleared of the endometriomas, but I can tell I am feeling much better. Seeing these improvements, my surgeon supports my holistic path. He’s impressed that I can avoid gluten and sugar, but I think it’s necessary. When people feel sorry for me about my lifestyle changes, I tell them, “Why? I am not sorry to feel well!”

It is challenging to maintain this lifestyle, in terms of time management and social activities, but my job allows for flexible hours and most friends are understanding. My very supportive partner is also helping in some of the home chores and sharing these changes in our lives.

Functioning properly is the most important thing for me and I’m very determined to keep this as my number one priority. If I am not functioning well, I am of no use for anybody else.

Highlighted Readings

“Endometriosis: You can Heal Yourself” by Cristiana Zenoni

Endometriosis Resolved

“Never be sick again” by Raymond Francis

“The Hormone Cure” by Sara Gottfried MD

“Taking Charge of your Fertility” by Toni Weschler MPH

“Pandora’s Lunch Box” by Melanie Warner

Nightmare on Lupron Street

by Lynne Millican, RN, BSN, Paralegal

Published on August 9, 2016

10K views

Think Halloween, spooky costumes, and “trick or treat” – only it’s summertime. And you’re in the doctor’s office, awaiting your first Lupron injection.

The RN or MD enters the room, holding your Lupron injection, and s/he is wearing a chemotherapy gown, double chemotherapy gloves, and chemical safety goggles. Would you wonder, with legitimate fright, what in the world was going on? Would you hesitate to have something injected into your body which required special handling and protective gear by the healthcare worker in order to protect the healthcare worker from exposure to your Lupron injection? Would you consent to injecting this medication?

Hazardous Drug Classifications

In fact, Lupron, known as an “antineoplastic”[1] and “chemotherapy”, is also classified (along with other GnRH such as goserelin and triptorelin) as a “hazardous drug” by NIH (National Institutes of Health), NIOSH (National Institute for Occupational Safety and Health), and in Lupron’s MSDS (Material Safety Data Sheets); and the handling, preparation, and administration of Lupron by healthcare workers (or consumers injecting at home) requires special protective gear (gown, gloves, and goggles).

Yet, most peculiarly, no healthcare worker (to the best of my knowledge) has ever given a Lupron injection garbed in the required gear. And that would imply not one patient (to the best of my knowledge) has ever received their injection by a gowned, gloved, and goggled RN/MD. If you have received a Lupron injection by a healthcare worker wearing any protective gear, let us know.

How can this be? Several US government agencies, for several decades, have openly identified Lupron as a “hazardous drug” requiring special precautions in its handling, preparation, and administration. Since the 1990s and through the 2000s, I personally have been asking questions and trying to raise the red flag through articles posted on my site LupronVictimsHub. Think about it it for a moment. Shouldn’t the consumer of Lupron be informed of such information? Would you consent to an injection of a hazardous agent for a benign condition from a gowned and double-gloved health worker? I believe that the industry wishes to ignore the fact that Lupron is classified as a “hazardous” drug. As a result consumers have been ‘shielded’ from this, and other, information central to an informed decision.

So these facts have been ‘open’ and ‘known’ for decades, the questions have been asked, “Alerts” have been issued, and still it would appear that entire fields of medicine are in the dark (i.e., gynecology, reproductive endocrinology, pediatric endocrinology, urology) about proper handling and administration of this hazardous drug. As a result, consumers have been denied vital information necessary to form an educated decision about consenting to this ‘treatment’ (trickment).

Impact on Healthcare Workers Unknown

What impact would there be upon healthcare workers (or consumers injecting Lupron in the home) if no protective gear is worn? How important is this issue, since it could be said there have been millions of Lupron injections administered and seemingly there appears to be no evidence of any problem. But the problem is there have been no studies of healthcare workers’ occupational exposure to Lupron in order to answer this question definitively.

The NIOSH Director has said chemotherapy drugs “can result in adverse health outcomes in workers who are exposed to these drugs, including cancer, reproductive problems, and organ damage when recommended safe handling guidelines are not followed.”

Studies have been conducted showing increased levels of antineoplastic drugs in the environment and in the urine of nurses and other hospital personnel in contact with hazardous drugs or following a spill (here , here and here). Other studies have found a significant increased risk of miscarriages and stillbirths in nurses and pharmacists handling hazardous drugs, and another study of oncology nurses identified that occupational exposure to antineoplastic drugs may reduce fertility and increase poor neonatal outcomes. Unfortunately, these studies and surveys do not appear to have included Lupron and identify only a few or the ‘top 20’ antineoplastics.

A search of PubMed for ‘Lupron leuprolide’ and ‘occupational exposure’ yields “no items found”. In light of Lupron’s common use and the apparent long-standing disregard of safe handling techniques, there is no legitimate excuse for the lack of investigation into potential occupational exposure. (A search of PubMed for “Lupron” [as of 8/5/16] displayed 3,122 published articles.)

NIOSH Alert

The 2004 Alert by NIOSH (as well as in subsequent NIOSH lists), identifies that leuprolide (Lupron) has been included on NIOSH’s “hazardous drug” list because of its “carcinogenicity, teratogenicity (reproductive and developmental toxicity), and genotoxicity” properties (see pages 32, 37). This Alert (and subsequent NIOSH lists) advised “[w]hen a drug has been judged to be hazardous, the various precautions outlined in this Alert should be applied when handling that drug” (see page 33) (emphasis mine).

There are no safe exposure levels for carcinogens. For nearly three decades “authoritative guidelines developed by professional practice organizations and federal agencies for the safe handling of these hazardous drugs have been available … [yet] [d]espite the longstanding availability of safe handling guidance, recommended practices are not always followed …”.

Lupron labels completely fail to identify the need for protective gear when handling, preparing and administering Lupron. The manufacturer of this drug appears to have recognized the need to attempt to reduce occupational exposure, as evidenced in some formulations, by the manufacturer’s use of an engineering control in Lupron syringe luer-lock system. Clearly education and training on the hazardous nature of Lupron and need for personal protective equipment has been universally lacking, and much more information and instruction is necessary.

It would appear to be time to euphemistically ‘take the gloves off’. A ‘fast-track tutorial’ for healthcare workers (and consumers in the home) who are handling, preparing and administering Lupron/GnRHa needs to take place immediately (it’s time to ‘put the gloves [etc.] on’). The label should be revised to include, plainly and unmistakably, language identifying it as a “hazardous drug”, with specific delineation of safe handling technique and personal protective equipment required for its handling, preparation, and administration. Surveys should be conducted and studies initiated to evaluate the health and reproductive status of persons who, for years, regularly handled, prepared and administered Lupron without using any personal protective equipment. Finally, professional practice organizations should be made to explain how the proper handling of Lupron has ‘fallen through the cracks’ for 30+ years, placing healthcare workers (and consumers injecting Lupron in the home) at unknown and unnecessary risk.

For further details and additional background information, please see my recent article ‘Decades-Long Universal Disregard for NIOSH Precautions During Handling, Preparing, and Administering the “Hazardous Drug” Lupron’.

[1] Lupron is most often referred to as a “Hormonal Antineoplastic”. However, it has also been classified (by the deHaen Modified American Hospital Formulary Service Therapeutic Classification System) as an “Antineoplastic/OTHER” (emphasis original). This deHaen Classification System further delineates its categories numerically, and Lupron’s “Antineoplastic/OTHER” classification is assigned the number “10:00.12”, as opposed to the deHaen’s “Antineoplastic/Hormone” classification number of “10:00.10”. (deHaen Modified American Hospital Formulary Service Therapeutic Classification System, New Drug Analysis Europe and Japan, 1995, Vol. XIV, p.16). I remain unable to define “OTHER”, however other drugs carrying the “10:00.12” classification include Interferon.

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Escaping Endometriosis: Hell to Happiness

by Sandra Saville, DC

Published on June 1, 2016

6.2K views

It all started at the age of 13. I went from a tall, lanky tom-boy, to a young frightened teenage girl who was having her first surgery, a laparoscopy, to determine if I had endometriosis. I didn’t know what the word meant; I only knew I wanted it to go away. I was confirmed to have endometriosis and given laser treatment to burn off the lesions, scar tissue and cysts that were forming on my right ovary. I had started my period a few months earlier, and with each cycle my problems began and intensified. At the time of my diagnosis, I had Stage IV endometriosis. Little did I know that this was only the beginning of a long and hellish life-altering journey over the next 2.5 to 3 decades.

One in ten women have endometriosis, but despite that, this disease is not well recognized. I had become a statistic that most people don’t understand, and even fewer have patience for. Looking back, I felt like I fell into a rabbit hole with no way out. My teenage years were awkward to say the least. After being diagnosed with endometriosis, I was placed on birth control pills for several years and not allowed to have a period. The pain wasn’t as bad, but my acne, anxiety, mood swings, concentration, and other complaints continued with full force. I hated my teenage years and basically everything about my life. Pictures were not allowed to happen.

Dealing With Infertility

During my early twenties, I got married and decided I wanted to have a family. I went off the pill and dealt with the acne, pain, constipation, mood swings, and depression as best I could. My marriage was far from good, and I mistakenly thought having a child would fix everything, or at least make me feel semi-whole. But, I was infertile.

For over five years I tried to get pregnant, without success. To say I felt less than a woman is an understatement. It was just one more thing I couldn’t do. Between 1980 and 2005, I consulted numerous specialists and followed their protocols, bought thousands of herbal/natural products, gave up one thing after another, and went to the extreme of cosmetic surgery in an effort to help myself with my acne and skin. Yet, with each passing year, I continued to yo-yo up and down, and my ability to bounce back with each down swing became increasingly harder. I was left infertile, feeling ugly and alone, and felt completely helpless and hopeless.

Anxiety, Depression, and Suicidal Thoughts

In 1997, after going through a very stressful and painful divorce, my endometriosis became uncontrollable. The all-encompassing and incapacitating pain of my condition, as well as the severe cystic acne, uncontrollable bleeding, and low self-esteem sent me spiraling into the depths of depression and anxiety. I thought to myself, “Is the rest of my life going to be like this? This is hell! I can’t continue to live like this. How will I ever escape from this nightmare?” My list and severity of symptoms were increasing despite trying many different protocols and consulting with a myriad of practitioners across all specialties. My acne went from my face to traveling down my neck onto my chest and my back, making the upper half of me raw and ugly looking. I tried dermabrasion, laser resurfacing treatment, Retin-A, Witch hazel, topical acne creams, internal acne remedies, all without success.

Worsening Symptoms of Endometriosis

Towards the end of my divorce, I started bleeding more and more. Each cycle lasted longer, became heavier, and the cramping intensity increased. My time in between my periods became less and less. I was put on birth control pills again to try and stop my bleeding. After a couple of months we increased the pills to two a day in the hopes of slowing down the bleeding. But, after six months, I was still bleeding heavily, anemic, exhausted, and severely depressed. The pain I dealt with on a constant basis felt like knives cutting me from the inside out. The panic attacks started shortly thereafter.

I went through four different procedures in the hopes of slowing down my bleeding: another laparoscopy, two endometrial ablations, and a D&C. These did work for a short period of time, but then within weeks, my bleeding would start again. Suddenly, I had a whole new list of things to deal with. On top of everything else, my legs started blistering, my hair started falling out, I didn’t have the strength to get out of bed, and I couldn’t stop crying or feel any joy with life. I absolutely wanted it all to end. Then came the hot flashes. I was consumed by hopelessness and despair. I was alone, without support, and ready to quit.

The doctors I went to for help gave me one excuse after another as to why things were going the way they were going. I was told “I was allergic to the sun”, and “everything was in my head and I needed to see a shrink.” One didn’t know what was wrong with me but he would give me more drugs in the hopes that it will help, at least with my depression and panic attacks.

Finally, I went to my gynecologist. When I told my doctor what was going on with me, he tested my hormones and found that being on the pill caused the majority of estrogen to be gone from my body. My hormones were completely screwed up. So, that day, he decided to take me off birth control pills so my body could ‘correct’ itself. I went from being a suicidal, crying, pimply mess to an enraged, homicidal crazy woman…and in the space of about three days.

The Beginning of the End

I HATED men, and HATED doctors even more. And then one day, while working, I broke. I had a nervous breakdown. I was immediately put on leave, and told to see the state psychiatrist (I worked for state government at the time). It was at this point, I knew I had to help myself.

My Healing Journey Begins

It was during this time in my life I decided to become a doctor. I didn’t want to be a medical doctor because frankly, they didn’t help me and it felt at times made me worse. I wanted to help heal people. So, I chose to become a Doctor of Chiropractic. This one decision led me to discover another side of medicine I had never heard of before…functional medicine.

Functional medicine teaches that each body system is inter-related. One system or organ has an effect on all systems in our bodies. And, when our systems fall out of balance, we are no longer able to adapt and overcome physical, physiological, emotional, mental, or spiritual stressors. The principles of healing our bodies using functional medicine involve several areas that are often neglected by traditional medicine. We need to cultivate a mindset for healing and transformation, and establish a nourishing lifestyle and optimal nutrition. We also need to minimize the toxic burden on the body by eliminating as many environmental and physiological stressors as possible, and at the same time maximize the detoxification pathways. We need to reduce stress, and break destructive patterns that create a stress response.

I applied the principles of functional medicine to correctly identify and remove the physiological stressors that were blocking my health. In order to determine where the breakdown was occurring I utilized specialized salivary testing that most medical doctors don’t even know about. I also checked my detoxification status, methylation, HPA Axis dysfunction, and much more. I learned how important our gut health and brain health were in relation to our hormones, and worked on correctly the real problem. And I succeeded.

I have learned that the magic bullet, “quick fix” protocols do not work. This is not ‘take a pill’ to ease one symptom, this is a process that allows for your body to heal all symptoms. Just focusing on one aspect of your health and your body is the wrong way to determine and correct where the breakdown is occurring. Understanding, accepting, and working with your body as a whole is the way to healing. It requires time, active participation, and the right type of health professionals to guide you through the process. My new understanding of health and healing have changed my life.

Brandi’s Endometriosis Story: 20 Years of Desperation

by Brandi CK La Perle

Published on April 20, 2016

6.9K views

It Started in Childhood

My story of life with endometriosis begins early. I was four years old the first time I collapsed from anemia. I was such a character, my parents laughed at first thinking I was acting to entertain them only to realize quickly something wasn’t right and rushed me to the doctor. I was given liquid iron supplements with dietary changes involving raw liver, spinach, raisins, and other natural sources of iron, but energy levels were a struggle.

At the age of nine, I was a competitive baton twirler training for competitions. I suffered from severe seasonal allergies that seemed to affect me in ways the kids with asthma didn’t envy. While all the kids were running outside in the spring at recess, I was kept indoors until June looking out the window at all the fun because my eyes and throat would swell shut by evening (even with antihistamines) if I walked on the grass. Rapid weight loss prompted a visit to a GI specialist as adults around me openly suggested I was suffering from an eating disorder, making me feel ashamed and insecure about my body, and wondering what was wrong with me. I felt bad that my parents were having to defend their parenting to so much judgment and wanted so badly to stop the pain that dropped me to my knees during bowel movements. Maybe I was constipated. Maybe I was under too much stress. I was given a special diet and had to sit out of the annual 24-hour Fast for hunger at school while my peers hangrily accused me of not caring about poor kids that can’t eat. At that age it was the end of the world.

Puberty

My mother prepared me for puberty with careful age-appropriate discussion to alleviate fear when it should come. Nobody prepared me for the emotional roller coaster and pain I would be in for that is a “normal” part of becoming a woman. I didn’t take it well at all and was convinced my mood swings were evidence of a personality disorder. My energy levels dropped so low I couldn’t get up in the morning and the pain with menstruation felt like I was going to die. I would wake up to loving letters of encouragement from my mother on the night stand letting me know I was going to be okay and acknowledging such a confusing stage in my life. I was angry with her and angry with the world. Nobody understood how I felt and I resented having to go about life each day as if I was normal. My mother took me to doctors that all insisted I was just difficult. The battle to get me up in the morning stressed the entire household, with my father away at work and my mother trying to start the day with two other young children.

By my late teens the rifts and mood swings in combination with my stubbornness, tore my life apart. As one period ended, the fear and stress of the anxiety and pain to come was already beginning. I saw counselors and doctors. I was told to take Midol, that it was all in my head, and that some girls have a low pain tolerance.

My social life didn’t exist. I was an anxious ball of nerves ashamed I was so damaged and unable to snap out of it like a strong person. Why was I so weak? My senior year of high school involved a bout of rubella (even though I had been vaccinated), and a mysterious acute immune response we never gained answers for after numerous allergy tests and specialists. I almost missed my high school graduation, and drank water while my peers partied to usher the end of 1999.

Years of Pain and Anguish Before my Diagnosis

Young adulthood wasn’t any better. I would wake in a thunderclap of pain, crawl to the bathroom, and lock my boyfriend out of the bathroom so he wouldn’t see the blood spilling out of me. It looked like a murder scene, but I knew I wasn’t dying because it had been going on for years, and doctors insisted some women just have worse periods than others. I was just sensitive. I would spend my shower time fighting between washing myself and cleaning the tub with barely enough energy to hold myself up.

One night my boyfriend didn’t come home and I knew he was lying about where he had been. Too weak to fight, I went to the bathroom, feeling like I couldn’t breath, pulling my necklace off, telling myself he wouldn’t have done that if I was normal. If I could just have sex without it hurting, and stop my body from being so unfair to him weeks out of every month maybe he would love me. I took a bottle of antihistamines and told him I was going for a walk to think things through. I wanted to die, but I didn’t want anyone to try to stop me. Maybe if I wasn’t around anymore the burden on my loved ones could be lifted?

He came after me once he found the medication packages and took me to the hospital where he had my parents waiting. I went home with my mother and father who were so angry with the situation, and extremely concerned for my mental health.

I didn’t want to die. I wanted my pain to stop!

I desperately wanted to be normal.

Over the years the pain became worse and lasted longer and longer in the month. I was given birth control pills that made me feel mentally unstable and didn’t seem to make any difference in the pain.

Abusive Doctors

My worst experience with a doctor happened when I was 21 working in the art business. I was experiencing frequent kidney infections on top of my “menstrual pain” and pain during bowel movements that brought me to my knees. The pain during urination wasn’t like a UTI I had known before. It was different with stabbing pains on my left side. My ovaries throbbed and nodes in my thighs swelled, with pain shooting from my pelvic region down my thighs to my feet. I collapsed when I stood and decided I needed to go to the ER. I was given antibiotics and released with the doctor advising to return straight to the ER if it didn’t improve later in the week.

Later in the week, I was even worse. I had heavy “break-through” bleeding as my “kidney pain” escalated, which required that I attend the IV clinic multiple times a day for several days for antibiotics and observation. One particular morning the nurse noticed my pain was only getting worse. Something wasn’t right and the kidneys should be clearing up. The doctor on-call picked up the phone and I could overhear him telling my family doctor to stop being such an “censored” and come look at me.

My family doctor did come that day. He yelled at me. Berated me. Screeched how I needed to stop going to the hospital for attention! My kidneys were fine and I had nothing but mild inflammation and told me there’s no way my pain was where I was showing him. It wasn’t possible for me to have such acute pain on the left side and a little break-through bleeding is normal for a woman my age.

The middle aged woman sharing the room with me wept. The nurses rushed in teary-eyed after he stormed out to release me, and advised me I had the right to refuse to let him ever practice medicine on me again. I lay there crying until he returned to tell me he had already informed the ER doctors I was wasting everyone’s time, so don’t bother going back. I told him he was no longer my doctor and never to approach me again. “You need me more than I need you” he said, as he stormed out yelling how I need to get a life.

I was taken back down to the ER where I was sent for a vaginal ultrasound. The doctors were dismissive and insisted the GP I had just “fired” is a highly respected medical professional I should have appreciated more.

I had no infection, but inflammation was present and loose blood unrelated to my menstrual cycle was found. I was told “sometimes that happens,” and sent home to rethink my life.

I went from doctor to doctor until my weight ballooned from 125 to 165 pounds practically overnight. My boyfriend’s friends and family fat-shamed me as he sat in silence embarrassed by my appearance. I began having seizures, migraines, repeated bouts of the flu, then mononucleosis. A medicentre physician sent me for testing that revealed that I had Hashimoto’s disease even though my thyroid had been tested very recently with no results. He said, “they don’t normally check the more expensive test.”

It would take time adjusting my synthetic thyroid levels, but they said I was going to be fine. My weight dropped off naturally, but the pain became worse. I went back to the doctor that diagnosed my Hashimoto’s disease at the walk-in clinic, hopeful she would be the first doctor to listen to me. It was the first time a doctor ever suggested I may have ” endometriosis ” and I was referred for laparoscopic investigative surgery with a top gynecologist.

My life was in ruins and I ended my long-term relationship exhausted by the constant accusation that I was faking everything for attention.

Finally Diagnosed with Endometriosis

I had surgery on November 1, 2013 and a week later the gynecologist validated me for the first time of my life at the age of 31. He looked me in the eyes and said “this pain you’ve had most of your life is very real, but we don’t know a lot about this disease”. Ablation was done on the lesions he saw and I agreed to keep taking continuous birth control, but my pain became daily even in absence of a menstrual period.

My Lupron Nightmare

I went back to the gynecologist in hope he could offer a better solution. There was none. He suggested I research a drug called Lupron and make an informed decision to try it. I read women had devastating experiences on this drug, developed for end-stage prostate cancer (the one Lena Dunham has been taking), but I was desperate to try anything.

I wasn’t prepared for what instant chemical castration would do to my body. The day after my first injection I felt extremely nauseated, weak, depressed, hot flashes, and muscle soreness. I went to the doctor and was told it was too soon for the drug to be the cause. My pain continued to worsen with new symptoms and brain fog.

I would lose my phone only to find it was already in my hand, put the remote control in the refrigerator, left an oven burner on forgetting I was making dinner, and even left the house well groomed with a nice blouse forgetting to put pants on. “You’re not wearing pants today?” My neighbor greeted me and I ran home to tell the law firm I would be late and cried on my bathroom floor holding my pelvis wondering how I would live the rest of my days in such pain. Was I safe to live alone? I was alone, scared, and desperate.

My best friend encouraged me to try stand-up comedy, and I felt new freedom on stage for a few minutes trying to make others laugh. I had the opportunity to open for Jeff Lesson from Ontario early on, and as I continued my comedy set, pain shot through my rectum like a thousand knives. There is no running off stage to cry, so I finished and shook hands with the audience after the show. We went to a nearby restaurant with the other comedians and when I went to the bathroom I found something was protruding from my bum. The pain caused me to drop to my knees and I felt as though I could black out. On the way home I asked to be dropped off at the ER where I learned I had a prolapsed rectum.

Excision Surgery: The Start of Healing

In June 2014 I traveled to Calgary, Alberta with my mother for excision surgery, by a specialist with additional training specific to endometriosis. During this surgery it was found that my organs were glued together with scar tissue and being pulled by a spiderweb of adhesions, and my rectum torn out and glued to my vaginal canal by adhesions. The inflammation was so raw that I had to be assessed by an Acute Pain Team. The surgeon removed all the areas of endometriosis including my appendix, cut away all of the adhesions, and restored normal anatomy, including my vagina and rectum.

When I was in Calgary for excision I called a friend at 3 am crying incoherently that I was going to jail break from the hospital to steal cheeseburgers from Pete’s Drive-Thru (I had an elaborate plan set). I was on high doses of pain killers and still feeling the effects of the anesthetic. On the drive back to Edmonton my mother finally got me a Pete’s Drive Thru cheeseburger, but I fell asleep eating after a few bites. When we pulled into Edmonton I woke with my beloved cheeseburger stuck to the side of my face.

In recovering from my surgery, I’ve abstained from sex for years since my last relationship, focused on rehabilitation and learning to live a “new normal” with a multidisciplinary approach to care adding nutritionists, pelvic physiotherapist, acupuncture, mindfulness, meditation, holistic medicine, Reiki, and an army of professionals for an improved quality of life I was told couldn’t be possible with my endometriosis. I’ve even had one pain-free sexual experience that left me feeling like a satisfied woman for the first time in my 34 years of life.

In December 2015 a CT scan found benign lesions on numerous organs throughout my body. Although not surgically confirmed, they are suspected to be endometriosis. I know now that an allergic reaction can trigger my over responsive immune system and the inflammation can cause lesions to bleed, and scar tissue to develop. I am working with my multidisciplinary team for the best quality of life I can have.

No woman should have to go through the pain, humiliation, and isolation of such a silent devastating disease.

Stand Up and Speak Out

I have been EndoMarching with Worldwide EndoMarch since it’s first year in 2014 to put an end to systemic failure in care for endometriosis. I have met thousands of women, a couple of men (very rare, but some men have endometriosis too), countless medical professionals, and I’ve heard too many heartbreaking stories similar to my own. Frustrated doctors that want to help, and desperate families struggling to understand that also need support. One thing has been the same in all of the endo warriors I’ve talked to and that is an active willingness to do anything to make a difference to lift others no matter how bad they may have it. They have the hope and the will, but lack of access to resources to get the effective care/support they need.

endometriosis - Page 4

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