endometriosis - Page 2

Endometriosis and Endo-Related Sexual Pain

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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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Conquering the Uterus – Trends in Hysterectomy

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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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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 March 18, 2013.

The Reality of Endometriosis in the ER

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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.

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If you have an endometriosis story that you would like to share, contact us.

This article was posted originally in February 2014. 

Thiamine for Fibromyalgia, CFS/ME, Chronic Lyme, and SIBO-C

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The Road to Thiamine

In August 2020, I was at my wits end. I had developed gastroparesis in March 2020, after 10 days of metronidazole (Flagyl), for a H. Pylori infection and SIBO-C symptoms. After seven days, I developed the symptoms usually associated with the intake of this drug – nausea, confusion, anxiety, paranoid thinking and mild gastroparesis symptoms. I no longer had bowel movements initiated by my body and had to use enemas twice a week. This state continued and worsened until the end of July 2020, when I also had a surgery for stage 4 endometriosis.

I managed to stay alive those months by eating an elemental diet (90%) and a few bits of solid food such as white rice, goat cheese, or lean meat. After the surgery, however, my gastroparesis got worse. I contacted my family doctor at the end of August and told her that I could no longer eat any solid food without severe nausea and that I need to be in a hospital to be fed intravenously or with a gastric tube. She agreed that my situation demanded immediate attention and she wrote me the referral for an inpatient hospital admission.

I was lucky though that at that exact time, I stumbled upon the low oxalate diet mentioned by a member of a Facebook group. I joined the Trying Low Oxalate (TLO) group on Facebook and read what researcher Susan Owens wrote about oxalates. I started implementing it and realized that small portions of low oxalate food every 2-3 hours were accepted by my body. In a few weeks my gastroparesis symptoms were reduced and my belly pain diminished.

From the Low-Oxalate Diet to Discovering Beriberi Disease

At some point in September 2020, while researching oxalates, I found Elliot Overton’s videos on oxalates and I listened to them. I also read his articles on this website where he talks about allithiamine, a thiamine supplement that contains something called TTFD, as being something radically different in terms of its unparalleled effects on the human body. I was skeptical, because I had spent about 20,000 euro on supplements in the previous four years, each of them being promoted as health-inducing by big names in the field of chronic Lyme disease, MTHFR, CFS/ME, SIBO and so on, while their effects on my health were only partial and temporary at best.

I decided that this would be the last supplement I’d buy. The worse would be losing 40 euros and I had already spent too much on worthless treatments. I took 150 mg allithiamine + magnesium + B2 + B3 for 3 weeks and I was less tired, could move more around the house, and overall was feeling much better, even my extreme light sensitivity was subsiding. Then I stopped taking it, not sure it was doing anything. That’s when I knew that it had worked and that I needed it badly. I took the same dosage for another 2 weeks. The next three weeks I had to wait to receive it from the USA, and I was again completely bed ridden.

However, I used this time to read most of Dr. Derrick Lonsdale’s book on thiamine deficiency. I became convinced that I had dry beriberi and that most of my neurological symptoms were caused by thiamine deficiency. I also noticed that the dosage is highly individual and some individuals needed very high doses of thiamine per day in order to function.

I now understood, why 2015 was the year I became bedridden for most than 90% of the time: I spent 6 months in a very hot Asian country, as part of my master degree studies. The energy requirement to deal with the hot weather and the demanding job depleted my already low thiamine levels. At that time, I was on my way to diabetes as well. I had fasting blood sugar levels of 120 mg/dl. I could no longer assimilate/use carbs in the quantities my body required (70% of the daily caloric intake) and I was always hungry and always thirsty. Looking back on my childhood and my ever-declining health from 2008 onwards, it was clear to me that I had problems with thiamine.

The Astonishing Effects of Thiamine

In December 2020, I increased my thiamine dosage to 300 mg per day and I was astonished at the changes I experienced – an 80% reduction across all my symptoms and some even completely disappear.

Mid-January, I decided to increase my allithiamine dosage to 450-600 mg because I felt like my improvements were stagnating. I also noticed that during the days I was more physically active (meaning: I cooked food for longer that 10-15 minutes, my energy levels were higher when I was taking more allithiamine and I didn’t experience the typical post-exertional malaise I was used to in the past). I also noticed that taking allithiamine alone in high doses doesn’t work so well and that the active B complex capsules and the B3 I was taking did have an important part to play in how I felt.

In the beginning of February, I was craving sugars so badly, that I gave in and bought a cake for my birthday. I ate two slices and discovered that my mental confusion, the brain fog and generally poor cognitive skills improved “overnight”. I was astonished, since I had been led to believe that “carbs are bad”, “sugar is bad” and “gluten is bad” and that the problem was with the food itself rather than with my body missing some vital nutrients. I didn’t experience any side effects from the gluten either, even though my food intolerance test shows a mild reaction to gluten containing cereals.

By February 20th, this high-dose allithiamine ‘protocol’ and the ability to eat carbs again, eliminated all of my symptoms of SIBO-C/IBS-D/slow transit constipation, endometriosis, CFS/ME, fibromyalgia, constant complicated migraine with aura, severe food intolerances, including a reversal of my poor cognitive skills. I was able to discuss highly philosophical concepts again, for one hour, without suffering from headaches and insomnia.

Early Metabolic and Mitochondrial Myopathies

On February 21st, I decided to go for a walk. I walked in total that day 500 meters AND walked up four flights of stairs, because I live on the 4th floor without an elevator. By the end of that day, my disease returned and I became bedridden again. I could not believe it. This was the only thing I did differently. I just walked slowly.

And so I searched the internet for “genetic muscle disease”, because my sister shares the same pattern of symptoms. A new world opened before my eyes. I found out that in the medical literature, exercise intolerance, post-exertional malaise and chronic fatigue are well known facts and are described in conditions known as “myopathies”. That there are several causes for myopathy and that they can be acquired (vitamin D or B1 deficiency, toxic substances impacting the mitochondria, vaccines and so on) or inherited. It was also interesting to find out that while doctors manifestly despise and disbelieve CFS/ME symptoms, they are not utterly unknown and unheard of or the product of “sick” minds.

When I read this paper, although old and maybe not completely accurate in the diagnostics, I understood everything about my health issues.

I remembered my mother telling me that my pediatrician said he suspected muscular dystrophy when I was one years old, because I could not gain weight. I weighed only 7 kg at the age of one year, but he wasn’t convinced and so no tests were done in communist Romania. In addition to being overly thin, throughout my childhood, I always had this “limit” that I couldn’t go past when walking uphill or if I ran up a few flights of stairs, no matter how fit and in shape I was. Otherwise, I would develop muscle weakness such that my muscles felt like jelly. I would become completely out of breath, which I now know is air hunger. I couldn’t climb slightly steeper slopes without stopping 2/3 of the way up. My heart would beat very hard and very fast. I would feel like I was out of air and collapse. I first experienced this at the age of 5-6 and these symptoms have been the main feature of my physical distress since.

Because of these symptoms, I have led a predominantly sedentary lifestyle with occasional physical activity, never daily, apart from sitting in a chair at school. I didn’t play with classmates for more than 5 minutes. I couldn’t participate in physical education classes. Any prolonged daily physical activity led to general weakness, muscle cramps, prolonged muscle “fever”, and so I avoided them.

Now, I know why. Since reading this article, I was able to present my entire medical history to a neurologist and my symptoms were instantly recognized as those of an inherited mitochondrial or metabolic myopathy. I am currently waiting for the results of the genetic tests ordered by the neurologist, which will make it possible to get the right types of treatments when in a medical setting.

Before Thiamine: A Long History of Unexplained Health Issues

In addition to the problems with gaining weight and inability to be active, I had enuresis until 9 years old, along with frequent dental infections, and otitis. I had pain in my throat every winter, all winter and low blood pressure all the time. At 14 years of age, I weighed about 43-45 kg. I remained at that weight until age 27. I had a skeletal appearance. I also had, and continue to have, very flexible joints. For example, my right thumb is stuck at 90 degrees, which I have to press in the middle to release. I can feel the bone repositioning and going into the joint. This happens at least once a week.

My diet was ovo-lacto-vegetarian diet, with 70% of the calories coming from carbohydrates from when I was able to eat until 2015. In 2015, I could no longer process carbohydrate due to severe thiamine deficiency.

Since the age of 18, I have had quasi-constant back pain in the thoracic area. I have stretch marks on thighs, but have had no sudden weight gain/loss. Among the various diagnoses I had received before the age of 18 years old:

  • Idiopathic scoliosis – age 18. No treatment.
  • Iron deficiency anemia – at 18. Treatment with iron-containing supplements. No result.
  • Frequent treatments for infections (antibiotics)
  • Fasting hypoglycemia (until 2015).

The Fibromyalgia Pit

In 2008, my “fibromyalgia” symptoms began, although looking back at my history, many of these symptoms were there all along. I made a big change in my physical activity levels and this began my 12 year decline in health. In 2008, I started my philosophy studies at the university and decided to get more “in shape” by walking daily to and from the university. A total of 6 km per day.

  • Constant fatigue, no energy.
  • Worsened back pain.
  • Weak leg muscles at the end of the day.
  • Frequent nightmares from which I could never wake up. I felt like I couldn’t find my way out of sleep. After waking up, I would sit down and after 10 minutes I found that my head had fallen on my chest and I had fallen asleep involuntarily, suddenly.
  • Sensations of waves of vibrations passing through me from head to toe, followed by the sensation of violent “coming out” of the body and out-of-body experiences.
  • Heightened menstrual symptoms.
  • Fairly frequent headaches.

Over the summer, I recovered completely as I resumed my predominantly sedentary lifestyle. Then, in the fall, I began walking to and from university again, and my symptoms just got worse. This cycle continued for the next few years. My symptom list expanded to include:

  • Migrating joint pains.
  • Frequent knee tendinitis.
  • Pain in the heels.
  • Generalized pain, muscles, joints, bones.
  • Frequent headaches.
  • Sleep disturbance with insomnia beginning at 2-3am every night.
  • Frequent thirst, increased water intake (3-4 l/day).
  • Frequent urination, especially at night (woken 2-3 times).
  • Bumping my hands on doors/door frames.
  • Unstable ankles.
  • Painful “dry” rubbing sensation in hip/femur joint.
  • Prolonged angry spells.
  • Memory problems (gaps).
  • Difficulty learning new languages.

I underwent a number of tests including, blood tests, X-ray + MRI of the spine, and a neurological consultation. All that came back was high cholesterol (180 LDL, 60 HDL), low calcium, iron deficiency anemia, scoliosis, and hypoglycemia. No treatment was offered.

From February 2010-August 2010 I had a scholarship in Portugal. Philology studies interrupted. I was using public transport to go to classes, which were about only 3 hours a day. I required bed rest outside classes with only the occasional walk. I had a complete remission of all symptoms in July 2010 when I returned home and resumed my sedentary lifestyle. This was the last complete remission.

From August 2010 – December 2010, I resumed day courses at both universities and resumed the walking.

All of my symptoms were aggravated enough that by December I was bedridden. I stopped attending classes due to back pain in sitting position. I wrote two dissertations lying in bed. Once again, I sought medical advice and had a number of tests and consultations with specialists. I was diagnosed with peripheral polyneuropathy and “stress intolerance”, fibromyalgia. The treatment offered included:

  • Medical gymnastics: aerobics, yoga and meditation presumably to get me in shape and calm me down.
  • Calcium and iron supplementation, gabapentin, and low-dose mirtazapine.

The physical activity worsened symptoms, as it always does. The mirtazapine improved my sleep. I took it for 2 weeks and then stopped because I was gaining weight extremely fast.

From 2011 – October 2012, I was almost completely bedridden. I had to take a year off because I couldn’t learn anything, my head hurt if I tried.  The physical symptoms improved after about a year, as did the deep and total fatigue. I tried to get my driver’s license in 2012, but failed. I couldn’t remember the maneuvers and the order in which to perform them. I couldn’t concentrate consistently on what was happening on the road. There was too much information to process very quickly.

From 2012-2015, I was getting my master’s in France. This aggravated all of my symptoms of exertion, both physical and intellectual. In 2013, I underwent general anesthesia for a laparoscopic surgery due to endometriosis, after which something changed in my body and I never fully recovered to previous levels of health. I took another year break between the two years of master’s studies. I couldn’t learn anymore. Symptoms relieved a bit by this break. After three months in Thailand for a mandatory internship, in one of the most polluted cities in the world, I got sick and developed persistent headache, with very severe cognitive difficulties. At this point, 90% of my time was spent in bed.

A general anesthetic in the autumn of 2015 for a nose tumor biopsy was the “coup de grâce”. Since then, I only partially recovered a few hours after a fluid infusion in the emergency ward and a magnesium infusion during a hospital stay in Charites Berlin in 2016. Other improvements: daily infusions of 1-2 hours with vitamins or ceftriaxone.

How I Feel Since Discovering Thiamine

In order to recover from the crash I experienced in February, I increased my B1 (TTFD) intake mid-March and made sure I was eating carbs every three hours, including during the night. I need about 70% of my total caloric intake to come from carbs.

I am currently taking 1200 mg B1 as TTFD, divided in 4 doses, 600-1200 mg magnesium, 500 mg B2/riboflavin, 3 capsules of an active, methylated B vitamin complex, 80-200 mg Nicotinamide 3X per day and 1-2 capsules of a multi-mineral and a multi-vitamin. I make sure I eat enough proteins, especially from pork meat, because it contains high amounts of BCAAs and helps me rebuild muscles.

I walked again the last week of April 2021, 500m in one day, because of a doctor’s appointment. I did not experience a crash that day or the following days. I did not have to spend weeks recovering from very light physical activity.

I can now use my eye muscles again, and read or talk with people online. I can cook one hour every day without worsening my condition.

After 5 years of constant insomnia, only slightly and temporarily alleviated by supplements, I can finally sleep 7.5 hours every night again. I no longer wake up 4-5 times a night.

My wounds are healing and my skin is no longer extremely dry and cracked.

My endometriosis, SIBO-C, gastroparesis, food intolerances, “fibromyalgia” pain, muscle pain due to hypermobility, are all gone.

And to think that all of this was possible because of vitamin B1 or thiamine, in the form of TTFD and that I almost didn’t buy it, because I no longer believed in that ONE supplement that would help me!

I will always be grateful for the work Dr. Derrick Lonsdale, MD, researcher Chandler Marrs, PhD and Elliot Overton, Dip CNM CFMP, have done so far in understanding, treating and educating others about chronic illnesses. More than anything, more than any physical improvement I experienced so far thanks to their work, what I gained was truth. Truth about a missing link, multiple diseases being present at one time and about why I have been sick my entire life.

Physical Symptoms and Diagnoses Prior to Taking Thiamine

  • Fibromyalgia and polyneuropathy diagnostic and mild, intermittent IBS-C since 2010;
  • Endometriosis symptoms aggravating every year, two surgeries, stage 4 endometriosis in 2020;
  • Surgeries under general anesthesia severely worsened my illness and set my energy levels even lower than they were before;
  • CFS/ME symptoms, hyperglycemia/pre-diabetes, constant 2-3 hours of insomnia per night and constant 24/7 headache since 2015, following an infection and during my stay in a very hot climate;
  • POTS, Dysautonomia, Post Exertional Malaise Symptoms from minor activities, starting with 2016;
  • Increased food intolerances (gluten, dairy, sugar/sweets, histamine, FODMAPs, oxalates, Sulphur-rich foods), to the point of eating only 6 foods since 2018;
  • Chronic Lyme disease diagnostic based on positive ELISA and WB test for IgM, three months in a row, in 2017;
  • Weight gain and inability to lose weight after heavy antibiotic treatment, skin dryness, cracking, wounds not healing even for 1.5 years, intolerance to B vitamins and hormonal preparations, since 2017;
  • Complicated migraine symptoms and aura, light intolerance, SIBO-C and IBS-D, slow intestinal transit, following a 4 month period of intermittent fasting that made me lose 14 kg, living in bed with a sleep mask on my eyes 24/7, severe muscle weakness, since 2018;
  • Two weeks recovery time after taking a 10 minute shower;
  • Gastroparesis, living on an elemental diet, in 2020;
  • All my symptoms worsened monthly, before and during my period.

Treatments Tried Prior to Thiamine

Gluten, dairy, sugar/sweets, FODMAPs, histamine, oxalate, Sulphur-rich foods/supplements free diets; AIP, SCD, Wahl’s protocol, candida diets; high dose I.V. vitamins and antibiotics, oral vitamins and antibiotics, liver supplements and herbs, natural antibiotics (S. Buhner’s protocol), MTHFR supplements, alkalizing diet, essential oils, MCAS/MCAD treatment, SIBO/dysbiosis diets and protocols, insomnia supplements, and any other combination of supplements touted as helpful for such symptoms.

And this is just what I remember top of my head. Their effect was, at best: preventing further deterioration of my body, but healing was not present.

Additional Literature

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

Yes, I would like to support Hormones Matter.

Image by Gordon Johnson from Pixabay.

This case story was published originally on May 11, 2021. 

Endometriosis, Lupron, and Fluoroquinolones: A Recipe for Autonomic Disintegration

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I am sharing my health story in the hopes that someone can offer assistance. I had stage 4 endometriosis for years before it was diagnosed. On top of that, I have had reactions in antibiotics, including fluoroquinolones and was given Lupron. Each drug destroyed more of my health. I am currently bedridden, in pain and unable to function. I have lost hearing in my right ear, have Sjögren’s syndrome, Hashimoto’s, adrenal insufficiency, hypokalemia, electrolyte imbalances, IBS, MCS, Ocular migraines and recently, have been diagnosed with dysautonomia. My body feels like it is disintegrating. We believe that everything is related, that I have mitochondrial issues at the root of these illnesses, but to date, no one has been able to put the pieces together. With the help of my husband, I have put together my health history. We are looking for input.

Early Warning Signs

1985: late summer, I was hit by car while riding bicycle. I was banged up really bad and definitely had head injury.

1998: started feeling off, not sure yet at this point still very young

2001: birth of my first daughter. I developed severe preeclampsia and had an emergency C-section three days later. My daughter was 6 weeks early and spent two weeks in the intensive care unit.

2002-2003: I felt off at times and did go to GP on several occasions. I had pain shot to my back. I am not sure what it was but it took the pain away. I also kept saying just didn’t feel well. I felt off but nothing was found.

2005: the birth of our son and second C-section. I was on bed rest last three months of the pregnancy. I was given an antibiotic for some reason. I do not remember. I had a reaction to it and turned orange. The doctor gave me something else to counter the effects of the antibiotic and my color returned to normal. It was a normal birth.

2006-2007: I was still in pain. The pain moved to the abdominal area. I developed bowel issues, had and ovarian cyst. I saw gastrointestinal physician who did scans and found a thickening of the lining of uterus. He referred us back to the gynecologist who did D&C in 2007 and said I had very minuscule amount of endometriosis.

2008- 2009: still seeing OB for pelvic pain, also seeing multiple other doctors including a neurologist, internist, and surgeon. Everyone kept saying same thing: ‘Your fine. It’s in your head.” They wanted to put me on mood enhancers. I tried lorazepam and felt terrible on it, so I stopped after two weeks.

The Lupron Disaster

September 2009: I started doing Lupron injections from gynecologist. She was very forceful with me and stated “if you don’t do these injections I can’t help you.” She said it was the only way they could know if the pain was below the belly or above. I agreed reluctantly, but at that time still thought my doctors had their best interests in me. After the first injection, my doctor called at home on a Saturday to see how I was feeling. I responded I was already in pain, but it has now quadrupled and I feel like an old person. Every bone in my body hurt.  I couldn’t believe the amount of pain I was in. She said I had to get all 6 injections if it were to be able to help me.

At that time, my husband because of work only went to a few of my appointments. I soon began to have him go with me because I felt I was getting the run around.

Hearing Loss Post-Lupron: Let’s Add Fluoroquinolones and Steroids to the Mix

2010: the last injection was in February. I began to lose my hair. I had memory loss, stabbing and taser sensations in head. I was still getting pains in abdomen area. In September, I went in for ear pain. The ENT said it looked like a scratch, so he gave me fluoroquinolone drops. I had also taken other fluoroquinolone antibiotics for yeast infections earlier in the year. In October, I had sudden sensorineural hearing loss in the right ear. Within an hour, I called my husband told him my hearing was acting weird. I went totally deaf in my right ear, 8 months after my last injection of Lupron. My local ENT immediately gave me a shot of cortisone (I was able to still walk and drive). It all went crazy when my ENT put me on a large dose of oral prednisone for 14 days. Everything in my body went nuts. I was rolling out of bed, holding on to the walls to help me walk. I totally lost my balance. The oral prednisone really did a number on my head.  I had done genetic testing through 23andMe and our doctor upload the report to a reader called Opus23. It said that I should never take prednisone.

I went to Stanford Medical and saw top ENT and received three cortisone injections into the right ear drum. Had a 50/50 chance for recovery and for me it didn’t work. I left Stanford with them telling me they still don’t have all the answers yet when it comes to sudden hearing loss. They thought it was some sort of viral infection that attacked the ear drum and deafened the ear. After the hearing loss. I had three ER visits. This is when I first started having low potassium. I felt like I was about to pass out. I was still driving at this time, I didn’t know what to think.

2011 -2012: I began seeing a naturopathic physician. I also did a trip down to LA to the House Ear clinic to see some specialist regarding her hearing loss. They couldn’t help either. I left my current OB and started seeing the physician who was filling in. I ended up doing a partial hysterectomy with her after finding a growth at one of my numerous ER visits that year. I was still working and a full-time mommy, while dealing with massive pain in my lower abdomen and now starting to deal with multiple autoimmune diseases including: Sjögren’s syndrome, Hashimoto’s, adrenal insufficiency. In addition, a lot of my minerals and vitamins were off at that time. I suspect this was beginning of my dysautonomia. I also began seeing an endometriosis specialist at Stanford.

Was it Endometriosis All Along?

2013: On January 31st, I had laparoscopic surgery to clear the endometriosis. I had stage 4 endometriosis which took my appendix. The physician said my body was littered with endometriosis. He even checked up in my heart cavity to make sure no endometriosis had made its way up to the heart. Before the surgery, I was talking with the anesthesiologist and telling him about my hearing loss and my low potassium. That is when he stopped the surgery and I had to take a stress test. We left and went to Palo Alto heart center and did a stress test I fasted for 24 hours and then they had me go do a stress test on a treadmill on an empty stomach. I did it no problem and went back to the surgery center. That is when they did the laparoscopic surgery and found stage 4 endometriosis.

Also, I want to point out that we didn’t find out until much later that during the course of the endometriosis surgery, they had left surgical clips and suturing material in me. We discovered this at one of our many ER visits. The OR report from our doctor says nothing about these things being left inside of me. I believe this is an additional pain I have on top of the other complications in my abdomen area. Nothing like having a wad of surgical clips throughout my abdomen and suturing material left inside my already struggling body. We are trying to get these removed, but no surgeon will take my case.

Mitochondrial Damage and Autonomic Disintegration

April that year, I had another ER visit. I lost all bodily functions. My potassium was severely low. I would go to the ER in 2013 many more times.

2014: I had to stop working totally this year. I tried to come back and assist a friend of mine just being her loan officer assistant but the neurological pains and crazy foggy brain I was experiencing was just too much. Something that was so easy for me years earlier, I was now having trouble just doing basic loan officer task at this point. Strange neurological pains were becoming a normal. I stopped driving this year also. It was just getting to scary for me to continue. I continued to go to ER for multiple visits

2014- 2017: I went to the ER over 50 times for various reasons: heart pains, chest pains, shooting stabbing pains throughout my entire body. I almost always had low potassium. Over these years, we spent our life savings and pulled out a $100,000 from my husband’s 401k, which we spent on various treatment plans. We have traveled as far away to Philadelphia looking for answers. We even gutted our house when we were told at one time it must be mold that is killing me. We lived in a borrowed 5th wheel while my husband put our house back together. There have been numerous days where I felt I couldn’t go on one more minute. I felt like death was right around the corner.

In 2015 one of our doctors after reading my genetic report thought he found a breakthrough with a patient that had hypokalemia and Sjogren’s syndrome. He provided me a copy of the study they did on a girl with very similar symptoms to mine. He had our local compounding pharmacy mix a solution called Shohl’s. I took the solution after my doctor assured me I would be ok. Well, I tried it almost within in minutes I was convulsing and went into tachycardia. My husband called 911 ambulance took me to the ER. In route to hospital paramedic gave me nitroglycerin. I was monitored for several hours and eventually went home. During this time had been staying at my mother-in-law’s house for about 6 months because we weren’t sure at this point if something in our house was making me so sick. This was a very stressful time for me at this point we have no idea what’s going on and what’s causing this.

We did have some relief in 2017 when our local naturopathic doctor was able to get a new treatment called UBL or ultraviolet blood irradiation. I had about 6 months where I was feeling off, but having somewhat good days where I could semi-function. My viral count has been very high during these years, EBV, CMV, HHV6, etc., and possibly Lyme. If I push myself, I will crash for hours sometimes days until I start to get any strength back just to walk to the restroom.

Next, I went in for a completely different treatment called prolotherapy. I got one injection into my shoulder, and just like that my body reverted back to like I was before the UBL treatments. I was worse again. It was very strange my body reacted like that.

2016: I was diagnosed with dysautonomia by another specialist, an electrophysiologist cardiologist. I have several of the sub symptoms of dysautonomia including: postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope (NCS), dizziness, vertigo, fainting, fast, slow or irregular heartbeat, chest pain, low blood pressure, problems with gastrointestinal system, nausea, disturbances in visual field, weakness, breathing difficulties, mood swings, anxiety, fatigue and intolerance to exercise, migraines, disrupted sleep patterns, temperature regulation problems, concentration and memory problem, poor appetite and overactive sense, especially when exposed to noise and light. We also met with a dozen or so other specialists. None were able to help.

I have multiple tears in both hips worse on right side. Multiple torn areas in the pelvic floor also.  Surgery is out of pocket and we have not been able to fly back and have surgery to repair those tears and hips yet as of 2019.

2018- 2019: I went to the ER only three times in 2018 and so far only three times in 2019. We try not to go because we know they never find much. I only go to be reassured that my vitals are still strong when I’m feeling at my worst. I have been denied disability. I had a neurocardiogenic seizure in the courtroom with judge and she still denied me. I have one last appeal that I am waiting on. I am not very hopeful that will go through. At this point, the dysautonomia, fibromyalgia/ chronic neurological pain and the low potassium are what are the hardest things for me to deal with. As of right now, we are concentrating on rebuilding my mitochondrial cells in hoping I can reverse some or most of the damage I think was a direct cause from the Lupron injections.

I was also on bio-identical progesterone creme from around 2012 to 2018. Then, in middle of 2018, my ND wanted me to try the bio-identical that went off the lunar moon cycle. It was a separate estrogen and progesterone creme in a plastic push-up type applicator. She said she was looking into it and thought it might help. Well, I tried it and had terrible side effects, I think most likely from the adding in the estrogen. After second month, I was having terrible stomach pains. I looked four months pregnant and was begging my husband to take me to the ER. The pain was worst at the part of the cycle where I took the estrogen only. I felt like she was going to die. In the past, I was always high in estrogen. I am not sure, but as soon as I introduced in that estrogen, it threw me out of whack terribly. I stopped that in November of 2018.

This is where I am now: in pain, unable to work or care for my children. My husband is my full-time caregiver. He takes care of our kids, shops cooks, does everything I used to do plus works his full-time job. I couldn’t do this without him. The doctors have run out answers. I believe it was the endometriosis all along, made infinitely worse by Lupron and the various rounds of antibiotics, including fluoroquinolones. The only way I can maintain my potassium levels is through huge daily doses. Otherwise, I slide into hypokalemia. We have a standing order at our local hospital to measure my potassium whenever I suspect it is low. We have sought treatment from dozens of specialists and spent our entire life savings and I am no better than I was 10 years ago. In fact, I am worse. Over the last 8 years, we have been supplementing with vitamins and minerals to try and repair the damage done to my mitochondria by the Lupron and the fluoroquinolones. Some things help and others do not. We are at wits end and do not know where to turn for help. Below is a list of supplements that I currently take.

Supplement List

Upon waking:

  • 600mg potassium,
  • 1 1/4 grain Naturethroid

Breakfast:

  • 3 200mg potassium. Daily total 1200mg
  • 1 Chewable Hydroxo B-12
  • 1 COQ10 100MG
  • 1 Biotin 10,000mcg chewable
  • 1 Chromium picolinate 200mcg chewable
  • 1 Desiccated adrenal from Standard process
  • 1 magnesium malate 100mg
  • 1 Thiamin 50mg
  • 1 Mitocore – it is like a multiple vitamin
  • 5 grams vitamin C, mixed with juice, plus I add Lugol’s iodine, colloidal silver, lymph drain and trace mineral mix.

Mid-morning:

  • 3 200mg potassium again – daily total 1800mg
  • B12 shot, a 100iu syringe

Lunch:

  • 3 200mg potassium, daily total 2400mg
  • 1 vitamin A 10.000iu
  • 1 vitamin K 90mcg
  • 1 Lugol’s iodine plus
  • 1 nettle leaf cap 400mg
  • 1 Monolaurin 600mg
  • 2 L-lysine 1000mg
  • 1 thiamin 50mg
  • 1 magnesium malate 100mg
  • 1 more Hydroxo B12

Diner:

  • 3 200mg potassium, daily total 3000mg
  • 1 thiamin 50mg
  • 1 milk thistle 150mg
  • 2 L-lysine 1000mg
  • 1 DHEA 25mg
  • 1 magnolia bark 450mg
  • 1 Digestive enzymes
  • 1 Dr. Berg Hair formula.
  • 1 L-carnitine 250mg

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

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Image: Maximum Speed of Raphael’s Madonna, Salvador Dali, 1954.

Posted originally on Aug 20, 2019.

Undiagnosable or Sustained Ignorance?

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Over the last several years, I have born witness to immense human suffering; young women wracked by pain, with organs diseased, struggling to survive; some have seizures and brain infections are common; many have nerve damage, some develop cancer, and others die; sometimes by their own hands, so desperate for relief that suicide seems like a legitimate option, and other times by the cumulative effects of bad medicine.

These women are poked and prodded by physicians, hospitalized for extended periods, surgery after surgery, failed treatment after failed treatment, with no hope in sight. Their pain grows. Their symptoms worsen. Their suffering continues. In many cases, they are dropped by their physicians because their conditions are too complex to understand and too difficult to manage. They are undiagnosable, often untreatable, and their struggles are mostly invisible to the public.

They are your sisters, your mothers, your wives, your daughters, your girlfriends and colleagues. They are the 50% of the population that medical science ignores and the pharmaceutical industry preys upon. They are women. This is their story. And as a woman, a mom, a scientist and an advocate for women’s health– this is my story too. As a human being, how can it not be your story too?

Let me point you to the personal stories of the women I work with. Many were healthy once, prior to a medication or vaccine adverse reaction or ill-conceived surgery or surgical device. Some were not so healthy, suffering from one of the many undiagnosable women’s health conditions. But all of the women I work with have one thing in common – they fell victim to the promise of medical science. They believed that their doctors understood the effects of the drugs they were prescribed. They believed in the surgical treatment their doctor suggested. They believed that their doctors could find the source of their pain and treat it. They were wrong.

Meet Alisa, Alexis, Nicole, Britt, Nina, Ashley, Tracie, Susan, Danielle, Michelle, Kerri, Rosemary, Jordan, Philippa, Lisa, Angela, Kelsey, Rachel, Roxie, Rosalie, Heather, Jill, Louise, Sydney, Suki, Destini, Lisa, Emily, Debra, Patti, BJS, Joan, HollyMAK, DES Daughter, Lisbeth, Robin, WS, Sarah, Zoe, Gabriella, Erika, Janet, Yuka, Sharne, SWC, Stacey, Bette, Amber, Momoka, Yumi, Dorothy, Samantha, Kristin, Katelyn, Jean, Sarah M., ErikaCharlotte, Kerry, Sharon, Taylor, Brandi, Alisen, Jess, J.H., Alex, Sandra, Theresa, Ann, Connie, Jessica, Kristyn, Bernadette, MJ, Marit, Alyson, Detrease, Claudia, Kristen G., Annie, Rebecca, Grace, JuliaBrooke, Anna-Karin, BrittanyKristen S., CS, Asha, Anne, Leslie, Sharida, Lisa P., Daniel’s wife, AnnieJMR, June, Lisa MH, Casey, Margaret, Nicole, Stacey R., Stephanie, Karen, and all the men and women who shared their stories anonymously and the millions of others suffering in silence.

I have come to realize that their suffering is not uncommon. It is not a fluke. They are not the outliers of modern medicine; rather, they are the norm. Perhaps, the details of a particular story change somewhat, but every woman (and more and more men) has a health story; one that is marked by unending medical confusion and half-witted diagnoses based, not on a deep understanding, but on wild-assed guesses levied by pharmaceutical marketing. Indeed, if the illness does not have a medication then, in the eyes of all but the most progressive physicians, it does not exist. That may explain why the prevalence of medically unexplained symptoms ranges from 25-75% in outpatient settings, with pain being the most common.

Worse yet, when a medication elicits an adverse reaction, especially one that is chronic and complex, the patient is left to fend for themselves. It takes decades for recognition that a medication or vaccine might evoke complex reactions beyond those associated with anaphylaxis. The statistics for women’s healthcare back this up.

Did you know that it takes 5-10 years to diagnose common women’s health conditions and that once diagnosed there are often no medications or effective treatment options? You’d think that that since the development of modern medicine, someone, somewhere, would figure out how to diagnose and effectively treat some of these conditions? You’d be wrong.

Did you know that only 30% of Ob/Gyn Clinical Practice Guidelines are based on actual data – 70% are based on consensus? Sit with that one for a minute. You’d have a better chance of getting an accurate diagnosis with a dartboard.

Did you know that before the mid-1990s, women were prohibited from being in clinical trials – meaning that no medications developed before then were ever tested on women? Hundreds of medications currently on the market were developed before women were permitted into clinical trials.

Did you know that even today women represent only about 30% of early clinical trial participants? It is in the early trials that safety and efficacy data are established. Not even female rodents were used in testing drugs that would be used in the female population until 2014.

Did you know that even when women are included in clinical trials, there is no mandate to analyze the safety or efficacy data by sex – to see if a particular medication causes more adverse reactions in women, or even works in women? It took 20 years to realize Ambien dosing for women was different than for men. And by different, I mean, it should have been half. For the twenty years this drug was on the market women were over-dosing because no one bothered to consider sex as a variable in pharmacokinetic research.

Did you know that women account for disproportionately more serious and more frequent adverse reactions and that most of the major drug recalls in recent history were due to the adverse events experienced by women?

Nope, you probably didn’t know that because it’s not common knowledge. Unless, you are one of the millions of individuals suffering from an undiagnosable, untreatable, unknowable disease or adverse reaction, then it is all too real.

And though I focus of women’s health, men are not completely risk free. The British Medical Journal reports that when 3000 commonly used medications were reviewed, less than 50% had the appropriate data to suggest any efficacy whatsoever. Worse yet, because of publication bias, fraud, and the closed clinical trials system allows pharmaceutical companies hide their negative results behind the walls of intellectual property, when already approved medications are re-evaluated using the previously closed trial data, the recommendations for use changed for 93% of the medications – 93%. For cancer drugs, efficacy could be confirmed in only 11% of the studies reanalyzed. That’s just wrong. We can do better. We must do better.

As I rattle off these stats, you might be thinking to yourself, ‘but Chandler, those adverse reactions, those drug side effects are rare, they wouldn’t, they couldn’t, happen to me or my family, we’re healthy.’  Think again.

According to the Mayo Clinic, 70% of all Americans take at least one pharmaceutical chronically, 50% take two, and 20% take five or more medications, even during pregnancy where 80% of women take at least one medications and 30% take four or more, an increase of more than 60% over the last 15 years. And don’t get me started about administering vaccines to pregnant women under the auspices of protecting the fetus. There are no data suggesting that a vaccine during pregnancy is anything more than a toxic cocktail that both mom and fetus have to survive, and many do not. None of these medications or vaccinations have ever been tested for safety or efficacy during pregnancy, read the package inserts. Similarly, infants, children and adolescents represent key demographics for pharmaceutical marketing and once again, only 10-20% of pediatric medications were tested on children. We have no idea what illnesses we are initiating by our overuse of medications and vaccines. None. And therein lies the problem.

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

Yes, I would like to support Hormones Matter.

This article was published originally on October 31, 2017, and as one might expect, the list of women who have suffered at the hands of sustained ignorance has grown considerably. 

Image credit: Imgflip.

Treating Infertility with Specialized Pelvic Therapy: A Natural Approach That Works

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In a 10-year study of 1392 infertile women, manual physical therapy yielded high pregnancy rates for women in three categories of hormonal infertility. Subsets of participants showed success for women with endometriosis, polycystic ovarian syndrome (PCOS), and high FSH (follicle-stimulating hormone).
The therapy was originally designed to treat pain due to the adhesions that form when the body heals. Adhesions tend to remain in the body, acting like an internal glue after healing has occurred. Adhesions can act like tiny straitjackets, causing pain or dysfunction – including infertility.

Endometriosis adhesions

Endometriosis, Infertility and Adhesions

Endometriosis is considered both a mechanical and a hormonal condition, with adhesions frequently accompanying endometrial implants. The therapy is designed to decrease the cross-linking, the tiny but powerful white attachments shown in the drawing. In the 10-year study, 43% (128/299) of the women diagnosed infertile with endometriosis became pregnant after receiving the therapy. This rate compares well to surgical success rates, but without the costs or risks of surgery.

PCOS and Infertility

In the study, 54% (15/28) of women diagnosed infertile with polycystic ovarian syndrome (PCOS) achieved pregnancy after therapy. While this is a smaller subset, this rate is encouraging; it is much higher than the 22% to 33% pregnancy rates achieved after surgeries cited in the study. In surgery for PCOS, the physician will either drill holes in the ovary or remove a wedge-shaped portion of the organ. One reason for the low pregnancy rates after PCOS surgery may be the new adhesions that form as the body heals from the surgery.

High FSH Infertility

pregnancy rates for women with high FSHOne of the biggest surprises in the ten-year study was in women who were diagnosed hormonally infertile due to high FSH (follicle-stimulating hormone). As a woman approaches menopause, her ovaries demand more and more FSH to stimulate egg growth in older follicles. Measured early in the menstrual cycle, most physicians feel a woman’s FSH levels should be at or below 10 mIU/mL. When a woman’s FSH is above 10, she is considered unlikely to conceive. At FSH of 25, the woman is generally considered to be menopausal.

In the 10-year 2015 study, a surprising 39% (48/122) of women diagnosed subfertile or infertile due to high FSH became pregnant after receiving the therapy; 43 of the pregnancies were natural, and five were by follow-up IVF.

“The data with these women has been absolutely remarkable” said Belinda Wurn, director for Clear Passage Physical Therapy. “Before this study, nothing in medicine has been shown to improve FSH and fertility naturally. Until now, none of us imagined that a manual therapy could have such profound effects, without surgery or drugs.”

The therapy (Clear Passage Approach™) is available at a dozen locations in the U.S. and the United Kingdom. Treatment consists of 20 hours of hands-on care described as “feeling like a deep, site-specific massage.” The therapy is often given 4 hours a day for 5 days. For more information, visit clearpassage.com.

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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.

Yes, I would like to support Hormones Matter.

Feature image: Tulia Colombia Torres Hurtado Pixabay

This article was published originally on August 15, 2017. 

Infertility Faux Pas: 5 Things Not to Say to Someone Struggling to Conceive

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Infertility is really, really hard. It’s harder than I’ve ever even admitted to myself. It’s also deeply personal. Reminders of your infertility are everywhere. I’m not just talking about all of the babies at the employee picnic or the pregnant women at the grocery store or the mailbox full of baby announcements and shower invitations. I’m talking about insidious little reminders like this ad that Aldi posted on Twitter.

Aldi Tweet

“Dear Aldi, you are opening a giant, fluorescently lit discount grocery store. You are not having a baby,” is what I was thinking when I read this tweet. (After clicking the link, it turns out that Aldi is starting to carry a line of baby products so I can see how the people in charge of marketing would think this advertisement is clever. Even so, it still feels a little like- “oh, even a grocery store can have a baby… but not me!”)

Infertility affects millions of women— over 6 million in the United States alone. It is so common that I’m sure you know at least one person affected by it. Yet as common as it is, people still say the strangest things when they find out you are struggling to conceive. So if you would like to be a more sensitive person to those you know (or may not even realize you know) that are dealing with fertility issues, here are some things not to say.

“You just need to relax and then it will happen.”

I cannot count how many well-meaning people have told me this. I also cannot count the ways I tried to “relax” in order to get pregnant. I got massages and acupuncture and did so many yoga classes I became a yoga teacher. I meditated. I feng shui-ed my house. I talked to my belly. I went on vacation. I thought about getting pregnant. I stopped thinking about getting pregnant. And guess what? None of those things make you pregnant. You cannot relax your way into pregnancy any more than you can relax your way into making it rain. If it’s not going to rain, it’s not going to rain.

Why this is unhelpful: You are essentially blaming me for my infertility when you say this. Infertile women (and most women for that matter) are already blaming ourselves for so many things that are really out of our control. Please stop blaming us for this, too. Also, studies show that moderate stress does not affect fertility.

What to say instead: Wow, that must be really hard. I’m here to listen if you ever want to talk about it.

“I know so many people who started the adoption process and then got pregnant.”

Good for you! Good for them! Do I really need to explain why this is so ridiculous? Okay, I will. Adoption is not a cure for pregnancy. I could see how this would be confusing to some people because it can be an alternate way to grow your family when you can’t grow them in your body. However, it is not a magic pill that tricks your body into getting pregnant. Most people who say this think that you are just too focused on getting pregnant and that starting the adoption process will distract you and therefore make you pregnant. This false logic is closely tied to the “relax and it will happen” (see above). It is akin to telling Michael Phelps that his body will swim faster if he just takes up knitting.

Why this is unhelpful: The only people that should start the adoption process are the people who are ready and excited to adopt. Adoption is not a placebo for pregnancy.

What to say instead: Wow, that must be really hard. I’m here to listen if you ever want to talk about it.

“Why don’t you just adopt a (twelve-year-old/ handicapped kid/ kid with cancer)? I would totally do that.”

The people who have said these things to me are invariably the people who had zero problems conceiving their 2-5 perfectly healthy children. Let me tell you something about coming to the decision to adopt a child. It is a very hard thing for many people. Especially when you have dreamed of having a child that looks like you and your partner. Especially when you have imagined what it must be like to feel your baby move inside you, a very part of you.

When you don’t actually have to make that decision, you can imagine you are the type of person that would adopt any and every desperate child in the world no matter the circumstance. Your heart is just that big. You can imagine that you would be the Mother Teresa of adoptive parents. And you can sit with your perfectly healthy, instantly conceived child in your lap while having fantasies about what kind of person you are. BUT when you actually start the adoption process, the fantasy stops. Because you literally have to write down what you are willing to deal with and what you would rather not deal with. Which means you have to say, “hey, you know what, I don’t really want to adopt a kid with cancer because going through the adoption process and becoming a parent is already hard enough.” Remember above where I said we infertile women are already blaming ourselves enough? Cue the crashing waves of guilt for wanting a healthy baby when there are so many other children that need homes. Does anyone ever blame a pregnant woman for wanting a healthy baby?

Why this is unhelpful: The adoption process is challenging, exhausting, and often extremely expensive. Judging anyone’s decision about when and how they proceed with this process (especially if you have no experience with adoption) isn’t just ridiculous. It’s cruel.

What to say instead: Wow, that must be really hard. I’m here to listen if you ever want to talk about it.

“I’m pregnant! April Fools!”

Since the United States treats pregnancy like a disability anyway, this could be a little like saying “I’m in a wheelchair! Just kidding!” Okay, maybe that’s a stretch, but it’s a weird thing to joke about. And it’s a thoughtless thing to joke about.

Also, according to the CDC, nearly half of all pregnancies are unintended. I would imagine an unintended pregnancy is very stressful, too.

Why this is unhelpful: Not only are you poking those of us who are infertile but you’re likely causing anxiety for half of your pregnant friends as well.

What to say instead: Nothing. Have you ever heard a good April fool’s joke?

“Happy Mother’s Day.”

I don’t think I am one to take things personally when it’s not warranted. Maybe I used to but as I mentioned above, I’m very relaxed now (lots of yoga classes… seriously, tons). However, this one stings. It just does. For the past couple of years, I’ve been lucky enough to spend Mother’s Day with two of the best mothers out there, my mom and my sister. During the course of the day, sales clerks, servers, and other people we encountered would say to each of us, “Happy Mother’s Day!” Sure, these lovely folks got it right for two out of three. Yet for me, each time felt sort of like a tiny little dagger into my infertile little heart.

Why this is unhelpful: It’s not really unhelpful. It’s well-meaning. But it still hurts those who aren’t mothers yet desperately want to be.

What to say instead: I don’t know. Keep being nice to people for sure. The world is too hard not to. Maybe try a genuine, “I hope you’re having a really nice day” rather than a robotic “Happy Mother’s Day!” to every woman that comes through your check-out line.

I did leave one thing off the list. Never, ever, ever comment when a woman is buying a pregnancy test. There is no right thing to say here. Not “oooh how exciting!” Not “uh-oh, good news or bad news?” Not “you must be celebrating tonight!” Remember when I said above how many people were dealing with fertility issues and also how half of all pregnancies are unplanned? More times than not, pregnancy tests are bringing tough news. Don’t comment on these at all.

I’m sure if you have dealt with fertility issues you could add others to this list. What have people said to you that made things harder? Was there anything anyone told you that was helpful?

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This article was published originally in June 2016.