endometriosis Archives - Page 2 of 16

Lupron Induced Osteoporosis?

Published on May 1, 2024

17.1K views

Women who suffer with endometriosis do not have many options for treatment. As a result, many women try Lupron because they are desperate to be pain and symptom free. I was one of these women. In 2011 and 2013, I tried Lupron for a total of three doses and wish I knew then what I know now.

In 2010, I was diagnosed with endometriosis laparoscopically. After that, I tried everything from many different types of birth controls and pain medications to depression medications that can also be used to treat pain. Nothing worked. My doctor at the time suggested Lupron to me and I was desperate. I felt like I had already put my life on hold long enough because of this disease and just wanted to be out of pain. However, now I feel like I am suffering the consequences and it didn’t even get rid of my pain.

In 2015, I was diagnosed with osteoporosis. Prior to this, I had never had a bone scan done, not even before being administered Lupron. In 2009, I was diagnosed with Vitamin D deficiency and have been taking a supplement ever since. Three months before being diagnosed with osteoporosis, I stress fractured my knee and was told at my age, it should not have happened. In 2014, I had a hysterectomy because of endometriosis; I couldn’t take the pain anymore and had disease on both ovaries.

Before this, I had never had bone problems or been told that I could. I blame Lupron and strongly believe using it as a treatment for endometriosis led to me having osteoporosis. At 27 years old, I am still trying to work with doctors to determine if there are any treatments I can do because people my age having osteoporosis is rare. Many medications women use for osteoporosis could negatively impact my bones even more because of my age. If I don’t use any treatment, I could suffer from even more fractures or bone breaks the older I get. Right now, my average T-score for my left hip is -3.6 and was -3.3 when I was first diagnosed. I have no idea when my bones became so brittle. In my case, I wish I would have never tried Lupron as now I know this is one of the many side effects of this terrible treatment for endometriosis and something I will have to deal with for the rest of my life.

There are not studies done on medications for osteoporosis in my age group because there are not enough people with the disease to study. The medications my current doctor wants me to try would be a daily injection I would give myself in the abdomen for two years. They are known to possibly cause osteosarcoma, a bone cancer. Based on my history, I don’t like my odds. At this time, I don’t know how I will try to treat osteoporosis. I am planning on looking into natural ways of treating the disease and see how that goes.

As a result from my knee injury two years ago, I had to have an arthroscopic surgery. My doctor repaired my torn meniscus and removed scar tissue. It is taking me longer to heal than I anticipated and I wonder if it is because I have osteoporosis.

If doctors use Lupron for patients, they should be required to give these patients bone scans before their first dose and do follow ups yearly. It is a known fact that Lupron should not be administered in more than 12 doses over a patient’s LIFETIME. I wonder why this is?

I hope my story helps someone make a decision that is best for their body and raise awareness about Lupron. I am not a doctor, nor do I claim to be, but I am a patient that continues to live with the outcomes of having endometriosis.

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If you have experience with Lupron or other GnRH altering drugs, please share your story.

Image credit: Laboratoires Servier, CC BY-SA 3.0, via Wikimedia Commons.

This article was published originally on December 13, 2017.

Shattering the Mirror: Becoming More Than the Reflection of a Disease

by RC

Published on March 20, 2024

9.4K views

While writing a letter about myself to an online website recently, I found myself shocked and very much amused by the telling way I accidentally introduced myself. “Hello,” I began my letter, “my name is endometriosis and I am 29 years old.”

“Endometriosis?!?” I giggled as I re-read what I mistakenly wrote, I had introduced myself as endometriosis?? Could there be a more obvious way of telling the world that endo defines me? I suppose not. But who really needs a Freudian slip to guess that one? Anyone with even a bit of insight could figure out the truth ten minutes after meeting me! And don’t you try to hide it – I’m sure it’s true for you too. Endometriosis consumes and defines the lives of all those who suffer from it.

But is that really true? Does endometriosis really have to infiltrate every part of our lives? Does it have to be the focal point of everything we do, or be the root of everything we feel about ourselves? My initial answer is an emphatic yes; there is no possible way to view our lives beyond the scope of endometriosis. But as I sit to muse about it longer, I begin to see another side.

You see, it’s not necessarily about seeing ourselves as something significant other than the endometriosis; it’s about viewing ourselves as significant despite the endometriosis.

I have been to many support groups for women with endometriosis. Each time I go I am amazed and inspired by the inner strength and beauty of these women. It is truly uplifting to sit and listen to what each of them has to say. To watch as one woman painfully and awkwardly attempts to sit down comfortably on a chair all the while saying something like, “But today is a great day, I only had to take two narcotic pills!!” Or to see another woman comfort a fellow endo-sister by genuinely telling her how strong and beautiful she is or how amazingly she handled a certain situation. I have firsthand experience of being comforted by another woman who was suffering with excruciating pain at the very moment that she held me in her arms to ease my pain. Time and time again I have seen the strength of women who could have legitimately decided to be selfish and angry but, instead, made the choice to be giving and kind.

So next time we look in the mirror and see a pathetic woman controlled by her endometriosis, let’s take a second look. We need to allow ourselves to see what we have become regardless of the fact that we have a terrible disease. Let’s look past the silhouette of a woman hunched over in agony and instead see the proud form of a strong, defiant woman whose illness will not define her; a woman who is powerful, kind, giving and beautiful whether or not she suffers. We are so much more than just a reflection of this disease.

About the author: RC is technically a special education teacher, specializing in working with children who have autism; or at least she was until endometriosis took over her life. Now she writes, blogs and tweets about endo while taking care of her miraculous two children that she has with her equally miraculous husband; not to brag or anything. RC is currently gathering stories from women with endo from around the world to put together into a book. You can share your story with her, or read her blog at Endo from the Heart.

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This post was originally published in November of 2013.

Embracing Resilience: A Journey Through Endometriosis and Infertility

by Leslie Wakefield, MS, DPT, CSCS

Published on November 13, 2023

4.9K views

Last year I had the pleasure of interviewing Alyssa Chavez about her journey through the challenges of endometriosis and infertility. In this interview, she cries as she recounts the pain of losing her pregnancy and the difficulties of trying to conceive. In fact, both of cry as she discusses miscarriage and her repeated attempts to conceive and carry a child.

In her compelling story, she opens up about her path to an endometriosis diagnosis, the emotional trials of infertility and IVF, the pivotal role of her loving husband, the decision to pursue excision surgery for endo, and her current hopes of conceiving naturally. Alyssa’s mission now revolves around supporting and empowering women facing similar challenges, a testament to the strength that can be harnessed when one woman navigates her own personal adversity and is willing to share it with the world.

What Is Endometriosis

Endometriosis is a condition characterized by the presence of endometrial-like tissue that grows outside the uterus. As one might imagine, this causes excruciating pain. It can take a years for a diagnosis, and once diagnosed, there are very treatments available and even fewer experts to guide these treatments. Among the more successful treatments, is something called excision surgery, where the aberrant tissue is surgically excised laparoscopically.

In addition to the pain and suffering women with endometriosis experience, fertility can be challenging. According to the Center for Endometriosis Care:

…stages I and II had a 60% chance of conceiving without surgical treatment; those with stage III had a 15-20% chance of conceiving without surgical treatment and those with stage IV did not conceive in that study.

Many women with endometriosis are simply unable to conceive or carry a child naturally. Some require assistance with things like IVF, while others may require surgical excision of the aberrant tissue before conception and pregnancy are possible. Again, according to the Center for Endometriosis Care:

Other studies have also found that conception rates increase following surgical treatment of endometriosis. For those with stage I-II, the chances of conceiving after excision is between 80-85%, almost the same rate as if you did not have endometriosis. Those with stage III will have a 70-75% chance of conceiving and those with stage IV is between 50-60%.

Alyssa, required both.

A Painful Reality: Living With Endometriosis

Alyssa’s journey began in her late teens when she was experiencing severe pain during her menstrual cycles. Despite these excruciating symptoms that caused her to lose days every month due to pain, she initially encountered disbelief and was often told that her pain was “normal.” This experience is all too familiar to many women living with endometriosis.

Her relentless pursuit of a diagnosis and solution led her through countless doctor’s visits and interventions including cycle suppression via hormonal birth control. When she and her partner began pursuing pregnancy and she discontinued her hormonal birth control, her pain and digestive difficulties spiraled out of control. After years of negative pregnancy tests, IVF and a miscarriage, it became clear that she would need to tackle to the endometriosis surgically and undergo intense personal work to heal herself through nutrition before pregnancy would be possible.

Listening to Intuition: The Decision for Surgery

One of the hardest moments in Alyssa’s journey was her decision to undergo excision surgery to address her endometriosis. This decision was not made lightly, as her initial fertility doctor and another specialist both recommended against it. Their primary focus was fertility rather than the endometriosis itself. But after a miscarriage, Alyssa knew in her gut that something had to be done. She went against the advice of her medical team, and even defied her own logic of finding a natural cure, all based on her gut feeling that surgery was the correct path for her.

The pain (emotional and physical) and intuition led her to consult with an excision specialist who also considered her fertility goals. Her surgery ended up being extensive, with endometriosis found throughout her abdomen and pelvis, as well as adhesions binding her pelvic organs together. The procedure was longer and more involved than anyone had expected but has given her the relief that she desperately needed.

The Crucial Role of a Supportive Partner

Throughout her challenging journey, Alyssa was fortunate to find unwavering support in her husband. He proved to be the anchor in her life, offering love and encouragement every step of the way. Their shared experience of fertility struggles and the challenges of endometriosis not only deepened their bond but demonstrated how adversity can bring a couple together rather than tear them apart, as is so often the case.

Alyssa acknowledged in this interview that many couples experiencing fertility issues encounter additional strain on their relationship, as she and her husband also did. However, in their case, these challenges brought them closer together. The couple’s strength and determination allowed them to navigate the complexities of IVF and endometriosis with resilience.

Hope for the Future: Natural Conception

With her endometriosis surgically addressed and now armed with nutritional knowledge to heal her body systemically, Alyssa now looks to the future with renewed hope. The surgery, which removed binding adhesions and relieved her debilitating monthly pain, gives her hope that she now has an environment conducive to natural conception. IVF was physically and emotionally taxing as well as expensive, so she continues to heal herself with nutrition and supplements and now holds optimism for the future and a natural pregnancy.

Supporting Others on Their Journey

Alyssa’s journey transformed her into a passionate advocate for women facing similar challenges. She now offers one-on-one coaching to guide women through the complexities of healing endometriosis, hormones, and fertility from the inside out, with a focus on nutrition. Her holistic approach seeks to address the systemic causes, considers individualized needs, and aims to make wellness practices fit into everyday life.

By sharing her journey and empowering others to seek help, she hopes to break the silence and stigma surrounding women’s health issues. She has a thriving one-on-one coaching business as well as her podcast, The Endo Belly Girl Podcast.

Alyssa’s journey through endometriosis and fertility challenges stands as a bright light of hope and resilience for other women who are on the same path. The fact that her journey is not yet over makes her story so much more compelling and relatable! Her willingness to share her experiences is an invaluable contribution to the broader conversation surrounding women’s health and I am so grateful that she took took the time to speak with me so transparently. I invite you to listen in on this interview to learn more, and to be assured that you are not alone in your struggles with endometriosis, fertility, and systemic healing.

Endo and Infertility with Nutritional Coach Alyssa Chavez

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Thoracic Endometriosis

by Philippa Bridge-Cook, PhD

Published on July 26, 2023

19.8K views

Endometriosis is a common disease, affecting up to 10% of women. It is characterized by the presence of tissue similar to the lining of the uterus (the endometrium) forming abnormal growths elsewhere in the body. Usually endometriosis growths/lesions are found in the pelvis, most commonly in the cul-de-sac (between the rectum and the back wall of the uterus), the ligaments of the pelvis, the bladder, the ovaries and tubes, and the sigmoid colon.

Endometriosis lesions can more rarely be found outside of the pelvis, and the most common type of extrapelvic endometriosis is thoracic endometriosis. Although thoracic endometriosis is relatively rare, there has been an increase in diagnosis in recent years, probably because of increased awareness among medical professionals that endometriosis can occur outside of the pelvis. Thoracic endometriosis is often found in conjunction with severe pelvic endometriosis.

The average onset of symptoms of thoracic endometriosis is 35 years old, much later than for pelvic endometriosis, where symptoms often begin in adolescence. It is not clear why this is the case. In addition, the majority of thoracic endometriosis is right-sided, with a smaller number of cases being left-sided or bilateral.

Symptoms and Clinical Presentation

The most common symptom of thoracic endometriosis is catamenial chest pain, which is chest pain occurring right before or during menstruation. In one study, 80% of women with thoracic endometriosis had catamenial chest pain. In another study, 90% of women had chest pain, 30% had shortness of breath, and 7% coughed up blood. These symptoms occurred more often during menstruation, but were not necessarily limited to menstruation. In 40% of women, chest pain was the only symptom of thoracic endometriosis.

The four main clinical entities associated with thoracic endometriosis are catamenial pneumothorax, catamenial hemothorax, catamenial hemoptysis, and lung nodules. Of these, catamenial pneumothorax has been the most researched. This is when the lung collapses during menstruation. It is considered to be catamenial when the collapse occurs during the window of 24 hours prior to the onset of menstruation to 72 hours after onset. The majority of catamenial pneumothorax is caused by thoracic endometriosis; however, not all pneumothorax associated with endometriosis is catamenial. In one study of 150 thoracic endometriosis patients, 37% of the pneumothoraces were catamenial, and 63% were non-catamenial. Pneumothorax typically causes chest pain and shortness of breath.

Catamenial hemothorax is bleeding between the chest wall and the lung that occurs during menstruation. This is a rare cause of pleural effusion (fluid around the lung), and like pneumothorax, usually causes chest pain and shortness of breath. Catamenial hemoptysis is coughing up blood during menstruation, and is usually associated with chest pain and shortness of breath. Catamenial hemothorax and catamenial hemoptysis occur in thoracic endometriosis less frequently than catamenial pneumothorax. Pulmonary nodules are one of the least frequent manifestations of thoracic endometriosis, and are masses in the lung that can be mistaken for malignancy. They can be asymptomatic, or sometimes cause coughing up blood.

In most if not all cases of thoracic endometriosis, lesions are also found on the diaphragm. In the majority of women, diaphragmatic endometriosis penetrates through the diaphragm. However, in a small number of women, the endometriosis lesions are found only on the visceral (abdominal/pelvic) side of the diaphragm, or only on the pleural (thoracic/lung) side. Not all women with diaphragmatic endometriosis will also have thoracic endometriosis. The symptoms of endometriosis on the diaphragm are similar to the symptoms of thoracic endometriosis, with chest pain during menstruation. This pain may radiate to the shoulder, neck or arm.

In rare cases, endometriosis on the pericardium has been reported (here, and here). The pericardium is the membrane that surrounds the heart. These women also had diaphragmatic endometriosis, and one of them had severe pelvic endometriosis, and the other had an endometrioma in her liver.

How Does Thoracic Endometriosis Develop?

A common theory about the development of endometriosis, known as Sampson’s theory, suggests that retrograde menstruation, menstrual blood flowing backwards (away from the uterus) through the Fallopian tubes towards the pelvic cavity, deposits fragments of endometrium into the pelvis, which can then implant and grow into lesions. This theory has many flaws, as discussed here. The existence of endometriosis outside of the pelvis is one of several facts about endometriosis that cannot be explained by Sampson’s theory.

So how does endometriosis outside of the pelvis develop? There are three main theories, and it may be through one or a combination of these that endometriosis develops in the thorax. The fact that thoracic endometriosis develops later than pelvic endometriosis may suggest that there is something fundamentally different about the way it develops. The migration theory suggests that endometriosis moves through the peritoneum (the lining of the pelvis) to the diaphragm, and from there, can move into the thorax through small holes in the diaphragm. The embolization theory suggests that endometriosis can be transplanted to the thorax from the pelvis through the lymph circulation, or the blood. Lastly, the metaplasia theory suggests that certain cell types can be transformed or changed into endometriosis. Clearly, more research is needed to delineate how thoracic endometriosis develops, and even how pelvic endometriosis develops, as this is not fully understood either.

Diagnosis

The definitive diagnosis of thoracic endometriosis, like all endometriosis, is through biopsy of endometriosis lesions/growths that have been removed surgically. Video-assisted thoracoscopic surgery can be used to visualize and remove endometriosis growths in the thorax. This type of surgery is similar to pelvic laparoscopy, where a small video camera scope allows the visualization of the surgical area, and instruments are inserted through small separate incisions. However, without surgery, a tentative diagnosis can be made through the clinical history and sometimes imaging results. In a woman with pelvic endometriosis, thoracic endometriosis may be suspected if catamenial chest pain is present, or any of the other clinical entities described above. Chest x-rays can show pneumothorax, pleural effusions, or lung nodules. CT scans may show certain findings characteristic of thoracic endometriosis, but sometimes CT scans are normal when a woman is not menstruating. MRI can also be helpful.

Treatment

Hormone therapy such as birth control pills, depo-provera, and Lupron are associated with greater than 50% recurrence of symptoms within six months after treatment was stopped. Video-assisted thoracoscopic surgery has been shown to be a safe option for treatment of thoracic endometriosis, and it can be combined with pelvic laparoscopy in the same surgery if pelvic endometriosis also needs to be treated. As with all surgery to excise endometriosis, the goal is to locate all of the lesions and remove them completely, in order to minimize recurrence. Most studies of surgical treatment of thoracic endometriosis have a fairly short followup, typically median followup of 18 months, and the number of patients in the studies is usually a small number, so it is difficult to draw robust conclusions about the long-term effectiveness of surgery. In one study, all patients had improvements in symptoms after surgery, but two out of 25 had recurrence at nine and twelve months respectively. Overall, though, surgical excision of thoracic endometriosis appears to be effective in the majority of cases.

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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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This article was published originally on July 16, 2016.

Healing From Lupron and Endometriosis With Thiamine

by Kristy Townsend

Published on February 28, 2023

9.6K views

I was diagnosed with stage 4 endometriosis in 1996. In 2017, I was ready for a hysterectomy. I had two children and was finished with childbirth. I was having a lot of pain on my left side where my ovary was located. My Veterans Administration GYN refused to do a hysterectomy without first giving me Lupron shots assuming that my pain was due to the endometriosis. I was trying to hold down a very demanding government job and missing a lot of work from the pain. I had two laparoscopic surgeries in 1996 and 2001, respectively. Both were to excise the endometriosis. At the time, I was required to take Lupron in order to have a hysterectomy, I was 46 years old. I was denied a hysterectomy after my son was born in 2000 because I was considered too young at 30 years old to have a hysterectomy.

Endometriosis in the Colon and Lupron

After the injections of Lupron, a colonoscopy confirmed a diverticula pocket in that spot that was painful and others on my large intestine. The laparoscopy and excision in 1996 confirmed that my endometriosis extended to my large intestine. The colonoscopy found that I have so many pockets of diverticulosis, a resection surgery was not possible. Basically, if I were to become septic due to an endometriosis/diverticulosis flare, they would need to remove all of my large intestine. My options were very limited. My GYN wouldn’t perform a hysterectomy and laparoscopy under the assumption that the pain I was having was due to endometriosis. He convinced me to start the shots to see if they would help the pain because he assumed the pain was due to endo. I didn’t research the Lupron injections much prior to receiving them. I fully trusted my GYN. He mentioned hot flashes and suppression of symptoms with estradiol.

Immediately I noticed a difference. I don’t take prescription drugs of any kind unless I am really sick. I had nothing for any preexisting conditions. I could not tolerate the injections and function at work. I had severe hot flashes every few seconds 24/7 for three months even with add back estradiol. Worse, the estradiol made my migraines flare and so I was a hot mess. After stopping estradiol, my migraines continued to flare and still do without supplementation. I was also having diverticulosis flares every month sometimes twice a month. I had terrible gas and severe IBS symptoms. My work leave, FMLA and advanced sick leave were dwindling from all the visits to the various doctors. Within three months of my last Lupron injection, I was forced to retire or be fired for not being able to work. I never fully recovered from the Lupron.

Finally, a Hysterectomy

My GYN finally agreed to the hysterectomy in 2018 where they found my left ovary and left fallopian tube in one mass of adhesion scarring with my large intestine. The GYN removed the left polycystic ovary, left and right fallopian tubes along with my uterus, which had fibroids, and cervix leaving me with just my right ovary. Prior to the hysterectomy, I began noticing some numbness and cramping or burning in my feet at work that was much worse at night. I had the same kind of cramping and burning in my lower back too. I would later learn that these are symptoms of thiamine deficiency. Trying to keep it together at work with all of this was a nightmare.

Around this time, I also began having severe nausea and pain in my stomach. The GI doctors did an upper GI scope to confirm duodenal ulcers. The digestive issues, especially the diverticulosis should disqualify anyone from having Lupron as Lupron causes major digestive upset according to the FDA fact sheet. My digestive tract was inflamed from mouth to anus post Lupron. I had an inflamed esophagus and ulcers, diverticulosis flares, IBS with constipation and diarrhea and hemorrhoids that I couldn’t heal with meds. The low FODMAP diet helped though.

No More Pharmaceuticals

In 2019, I finally stopped taking all pharmaceuticals. No pharmaceutical made me feel better. Every medication I took for GI issues and neuropathy made me worse. I only took one for one or two weeks at a time to log all my side effects from each so I could have them added to my growing list of allergic reactions. I did have some sensitivity issues with prescription drugs prior to Lupron, just not as bad. I have the MC1R redhead gene. Redheads are more sensitive to pharmaceuticals and have more adverse reactions. I struggle with topical solutions as well. I couldn’t use estradiol patches because I’m allergic to the adhesive. Thankfully, my primary care physician also has endometriosis and suggested herbal supplements and remedies. All of this ,surprisingly, is from the veteran’s hospital. I was ordered by her to stop working. This was a final attempt to heal my ulcers, as they would eventually kill me if I could not find relief.

How I Healed Myself With Thiamine and Diet

I decided to try high dose thiamine after researching it via Drs. Lonsdale and Marrs and Elliot Overton. I started with 100mg daily for 6 months. Then 500mg for 3 months and currently 1000mg (500mg 2x daily). The thiamine works as well as the acupuncture with EMS. I also take Alpha Lipoic Acid and Dandelion root daily. The increases in thiamine are proving to be a significant factor in recovery. If I miss one day of supplements I’m sick for several days so I’m convinced that it is working.

To help myself heal, I no longer work a 9 to 5 job. I follow a low FODMAP diet with modification for diverticulosis and supplement with elderberry or dandelion for inflammation and immunity, turmeric, prebiotic + probiotics, magnesium for bone loss, palpations, anxiety, alpha lipoic acid for neuropathy, high dose thiamine for neuropathy, fatigue anxiety and brain fog, b vitamins and D3+K2 for b1 uptake regulation and delta 8 CBD for fibromyalgia pain and fatigue. I have regular chiropractor adjustments of my neck and lower back. Acupuncture and light therapy on my feet helped with the burning and cramping.

Where I Am Now

Currently, I have no endometriosis pain, only some lingering PMDD. I have no ovarian cysts and the migraines are not as frequent. Now only a couple a month versus weekly. I still have some burning and cramping in my legs and feet, but it is tolerable. Before thiamine, I was bedridden. The back and neck pain I had previously has improved with thiamine along with physical therapy/yoga and regular chiropractic care. I no longer experience diverticulosis flares with the new diet and supplements for inflammation like dandelion root, turmeric, and elderberry. I switch out the dandelion and elderberry because they work about the same. Depends on what is on sale.

I am able to stand for longer periods of time. My anxiety is significantly reduced, my palpations are gone, I can remember things, and my ADHD flare ups are minimal. In 2022, I only had two mild diverticulosis flares. Prior to the diet changes and supplements, I was having them once a month. I went from being bedridden completely to cooking (I still need to sit some), cleaning with short breaks, gardening with a sit on garden cart, and walking about a half mile every few days. I still have numbness in both feet. I am hopeful that lowering my A1C will resolve this. It may be permanent. Only time will tell. I’m going to the VA this week for a checkup and requesting more PT to see if it will help. They did an EMP on both legs with normal results. That was pretty painful but I felt nothing in my 3 little toes on both feet. Overall, I am doing much better with the higher dose thiamine and have much more energy.

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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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Endometriosis and Endo-Related Sexual Pain

by Leslie Wakefield, MS, DPT, CSCS

Published on November 15, 2022

7K views

Endometriosis is a painful, chronic, inflammatory condition that is poorly understood but affects more than 1 in 10 women and an uncounted number of gender diverse people. Previous articles have discussed endometriosis in general and some of the specific symptoms and complications that may arise. Hallmark symptoms include painful periods, painful bowel movements, and painful sex. Fatigue is another major symptom associated with endometriosis, and one which is frequently discounted by physicians due to it being such a challenging symptom to objectively measure. Currently, the gold standard for diagnosis is diagnostic laparoscopy, and the gold standard for treatment is laparoscopic excision.

In this interview, Philippa Bridge-Cook, an international endometriosis advocate, describes how the disease of endometriosis involves tissue that is similar to the lining of the uterus, which grows outside of the uterus. Often this tissue is in the pelvic area, but can also be in other parts of the body completely unrelated to gynecologic structures. These tissue growths are inflammatory and can be hormone-responsive, meaning that often people with endometriosis experience increased pain during menstruation, which can be severe and debilitating. However, endometriosis has much wider-reaching consequences “just” period pain.

Painful bowel movements may occur due to the location of these lesions, either on or within the bowels, or surrounding structures. They may also be related to chronic inflammation in the body. Digestive difficulties may extend beyond pain and include severe bloating, gas, painful cramping, and sensations of fullness, food sensitivities, diarrhea or constipation.

Painful sex can occur and may be related to either the location of these pain-producing lesions (for example, if they are in a place that is directly affected by sexual contact, and therefore directly irritated), or it may be related to pelvic floor dysfunction that arises due to chronic pain. Pain may be experienced during arousal, sexual touch, sexual penetration, orgasm, or after sexual activity.

As a Doctor of Physical Therapy, this specific complication of endometriosis falls squarely into my wheelhouse, and I treat many patients who are suffering from pelvic floor dysfunction related to chronic pain. In this interview, Philippa and I talk about how the pelvic floor muscles (muscles in the area of the groin that control urination, defecation, and contribute to sexual function) can become tense and tender due to the stress of chronic pelvic pain. During sexual activity they may be painful to touch, painful to penetration, or painful when they contract reflexively during orgasm. I discuss physical therapy for sexual pain here (link: Physical Therapy for Female Sexual Pain).

Dr. Bridge-Cook discusses not only the generalities of endometriosis and endo-related sexual pain, but also actionable, specific strategies for charting symptoms, speaking with your physician, and pain management. She reviews different imaging techniques, surgical techniques, and incomplete/inaccurate treatments. She is a true expert in the subject, informed by her years of personal experience as well as her extensive research and advocacy work. She speaks in a way that is easy to understand and provides hope, closing by encouraging women to not give up and to seek help with physicians that are willing to take them seriously.

Endometriosis and Sexual Pain

Share Your Endometriosis Story

Endometriosis affects millions of women but goes largely undiagnosed for years and treatment options are limited. To raise awareness about endometriosis and build the knowledge base, we need your help. Share your experience and your knowledge about living with endometriosis. To learn more, click here and send us a note.

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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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Conquering the Uterus – Trends in Hysterectomy

by Chandler Marrs, PhD

Published on October 26, 2022

11.3K views

Every 10 minutes, 12 American women lose their reproductive organs, every day of every year. Hysterectomy is second only to cesarean in common surgeries. Approximately 660 women die each year in the United States from complications related to hysterectomy. Thousands more suffer long term side effects associated with oophorectomy – removal of the ovaries. The most common reasons for hysterectomy include: uterine fibroids or rather the menorrhagia, heavy bleeding associated with the fibroids and endometriosis, an incredibly painful condition where uterine tissue grows outside the uterus. Both conditions are hormonally modulated, plague millions of women and take years to develop.

One would think that with such extended period of disease progression, 5-10 years, researchers and clinicians would have ample opportunity to develop innovative treatment protocols, long before the surgical removal of the uterus was necessitated. One would be wrong. Despite the cost of long term care leading to, and as a result of the hysterectomy; despite the outcry from the hundreds of patient associations, some with high profile members; despite the billions of dollars spent annually on performing what should be last resort surgeries, there has been no innovation in diagnostic tools for these conditions and no new therapeutics for women’s reproductive health developed in over 50 years, unless you call the re-purposing of old meds innovation.

Instead, innovation in women’s healthcare, much like American healthcare in general only magnified exponentially, comes at the end of the disease progression – when no other choice but surgery exists. Let’s build a cool robotic tool to remove even more uteri. Sure it will cost significantly more and have a higher complication rate, but the technology is so impressive that does not matter. Forget about developing early diagnostics and less invasive, more effective therapeutics, just take it all out and look cool doing so. Who would not want to perform surgery remotely with a million dollar piece of medical technology? Women don’t need their uteri anyway – a win win for all involved.

Robotic Assisted Hysterectomy

The robotic, joystick controlled, remote surgical tool is an impressive piece of engineering. With a price tag of over a million dollars per, it provides the cutting edge stature that all top-notch hospitals strive for. An added bonus, it makes gynecology, the long derided medical profession, the cool kid on the block. But does it work?

Well, not really. Sure it removes a woman’s uterus more quickly and with less scarring; a single ½ inch belly button scare versus two or three ½ inch abdominal scars, but it costs more and doesn’t reduce complications – may even increase them a bit. Compared to the minimally invasive laparoscopic hysterectomy, the robotic assisted hysterectomy costs $2000 more per procedure. As of 2010, about a quarter of all hysterectomies were performed robotically. That’s about $300 million dollars per year more to perform a robotic hysterectomy with no added gain health. When combined with the costs multiple hospital stays, ineffective therapeutics and possible other surgeries that often led up to the hysterectomy, it is clear why women’s healthcare is so expensive.

Perhaps we could use our health dollars a little more wisely. Maybe we should spend some of those many billions of dollars or even a fraction of the $300 million spent annually on robot surgery, on prevention, early diagnostics or more effective therapeutics.

Update

Since this article was originally published in 2013, additional reports of complication rates for robotic surgery have been published. In a study of 298 patients undergoing robotic hysterectomy published in 2015, the complication rate was 18%. In 2017, a study of complication rates of a single surgeon using the robot, was 5.5% suggesting that some surgeons are better with this tool than others. In comparison, a study looking at 4505 hysterectomies performed by the same team between 1990 and 2006 (3190 were performed by laparoscopy, 906 by the vaginal route and 409 by laparotomy) saw the complication rates below 1%, significantly lower than that of the robotic surgeries, but again demonstrating that the skill of the surgical team is paramount.

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Photo by Sander Sammy on Unsplash.

This article was published originally on March 18, 2013.

The Reality of Endometriosis in the ER

by RC

Published on June 16, 2022

20K views

I’m lying on an emergency room bed, writhing in agony, screaming in pain, as though my insides are being torn to shreds. I curl up my body, protecting myself from the evil inner force that resides within me, stabbing me, shocking my organs. My mind is frantic, confused, and manic. Lights and sounds mix together around me and I close my eyes to minimize the sensory overload. The white sheets under me feel scratchy and irksome, I can’t deal with any added discomfort. Searing pain bubbles within me, threatening to boil over, and when it does, I let out a scream from the very depths of my soul.

I hear a voice and attempt agonizingly to open my eyes. A woman in a white coat stands in front of me, arms crossed in a stance that conveys a mixture of disdain and apathy.

“Rachel,” she demands, her voice both indifferent and annoyed, “want to tell me why you’re here?”

Is she joking? I wonder to myself while trying to gather my coherent thoughts, does she not see I’m in excruciating pain?

“Pain…” I manage to say, the word more a miserable moan than an answer. “I need meds…”

“I’ll decide what you need,” she replies nastily. “You’ve been here way too many times, asking for medicine each time. You don’t need meds, Rachel, you need to go to rehab. You’re an addict.”

I can’t control my tears any longer and I let them flow freely as I sob uncontrollably. Didn’t she see my chart? Doesn’t she see that I have endometriosis? Does she know how painful it is?

“I have endometriosis,” I muster, “I take normal pain meds every day but they are not working today. The pain is worse than usual!”

And then my senses can’t take the pain any longer, and I scream out desperately once more. All thoughts abscond from my brain, all I can think of is dying to get rid of the pain. The doctor looks at me like I am a dirty piece of clothing on the floor. She purses her lips and then spits out, “I suppose I can give you some Motrin or Tylenol.”

I am so desperate at this point I agree to her pointless suggestion. My head knows the meds will not help, but my body is starving for relief. Needless to say, thirty minutes later the Motrin has left me right where I was before I took it: in paralyzing pain.

A nurse comes into my cubicle a throws a glance at my miserable form. “You’re being discharged!” she sings, as though she is freeing me from jail. Her smile is grotesquely wide as she hands me a pen to sign my name on the discharge papers. I want to explode at her, to hurl words in her face that describe my agony, and wipe that inane grin right off her face. But I don’t. Instead, I meekly take the pen, wait for a moment in which my body is able to stop shaking, and then sign the papers.

“Wheelchair will be here in a minute!” she croons, then leaves me alone with my emotions.

I fold my beaten-up body into the wheelchair feeling completely empty and numb despite the pain. I am so shocked at the experience I just had. I left my heart, soul, and voice in that emergency room, trying my hardest to explain the agony I was in. I laid in front of a doctor trembling with pain, and she in turn called me an addict and sent me away. She didn’t bother to understand what I was going through and didn’t test me to see what drugs I had in my body. Instead, she took my trust, ruthlessly pummeled it, and carelessly threw it away. I leave feeling nothing more than a desire to give up and let it all go. Tonight, I have become one more casualty in the fight for us with endometriosis to be heard.

We Need Your Help

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, and like it, please help support it. Contribute now.

Hormones Matter

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

endometriosis - Page 2

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Embracing Resilience: A Journey Through Endometriosis and Infertility

What Is Endometriosis

A Painful Reality: Living With Endometriosis

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Conquering the Uterus – Trends in Hysterectomy

Robotic Assisted Hysterectomy

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The Reality of Endometriosis in the ER

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endometriosis - Page 2

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