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High Dose Thiamine Healed My Fatigue. How Do I Navigate Pregnancy?

Published on November 7, 2023

2737 views

Downward Spiral, Upward Hope, Asking Advice

The year 2020 marked a big change for a lot of people. For me, it meant a downward spiral into intense fatigue, brain fog, and heart palpitations. Healing came in increments over the next three years until I found thiamine, which expedited my healing in six months. Now, I am considering pregnancy, but I need your advice. How do I navigate taking megadoses of supplements while growing a baby? How do I know when my healing journey is “complete,” and does that mean my supplement regimen ought to change? Any and all comments are welcome!

How It Started

It was early 2020 when I returned from a vacation from Thailand and got a stomach bug somewhere along the way home. I rested in bed a couple of days and mostly recovered, but had a lingering burning sensation in my stomach for the next month or so. I then noticed my stool started to smell strange and I experienced bloating after some meals. I went to the gastroenterologist, and within a month they had done an endoscopy and discovered erosive gastritis. I was put on a proton-pump inhibitor (PPI) and sucralfate to coat my stomach.

Two weeks on these medications and I felt immense brain fog and extreme fatigue, so much so that I felt like I would fall over in my chair at work. The fatigue hit me like a ton of bricks– I slept throughout the night and forced myself to take naps, and nothing helped shake the overwhelming fatigue. I took a few weeks off of work and tried to rehab myself at home, eating as much healthy food as possible (I was tracking 3,000 calories a day, which I felt I must need to get healthy again). I tracked all of my nutrients in an app and made sure I hit (and exceeded) the RDA for every nutrient (with the help of supplements). Still, things were not improving much, and I couldn’t even walk one stretch of the block without being utterly exhausted. It was during this time off of work where I felt so helpless and drained in every sense that I remember thinking, “this is what the beginning of dying feels like.” It scared me. But I honestly did not know what to do or where to turn.

A picture from July 2021 after a short hike. I felt horrible and my husband felt great :).

I knew the medications were not making me healthier (even if they made my stomach feel better), so I went off of them cold-turkey. The burning in my stomach became quite severe due to the rebound effect of getting off a PPI, but I pushed through, knowing that I needed my body to heal on its own.

The next three years brought incremental improvements, but still much suffering. Intense brain fog, insatiable fatigue that heightened post-exertion, and dysautonomic symptoms plagued me daily. I was waiting for a big break that seemed like it might never come. Little did I know, my time was coming in the spring of 2023.

How It Really Started

It would be easy to blame a stomach bug for all of my problems, but I now know that my nutrient stores have been taxed and depleted over many instances in my life. Here is a snippet of what led me to the crash:

– Childhood: Ear infections (antibiotics), chronic stomach aches, sugar consumption

– Adolescence: Traumatic brain injury (brain sheer, 3 days coma), mononucleosis, asthma

– Young adulthood: chronic UTIs (i.e., chronic antibiotics (including 3 separate Bactrim prescriptions and anti-fungals (fluconazole) afterward), several deaths in the close family (emotionally taxing), monthly naproxen for menstrual cramps, developed gluten sensitivity, shortness of breath (air hungry).

The stomach bug was simply the straw that broke the camel’s back. All of the stressors in my life (physical, emotional, etc.) depleted my body until it couldn’t retain a guise of “healthy” anymore.

My First (Unknowing) Megadose

Throughout the entirety of 2020, I experienced bloating and IBS symptoms. I managed the symptoms well enough with a low FODMAP diet, but one tiny piece of garlic, onion, etc. and I was ruined. I knew I wasn’t healed with this diet, but I didn’t really know how to heal, especially hearing that IBS is something you have to live with for the rest of your life. This scared me, but I wanted to see what answers may be out there.

I came across a study that claimed that the vast majority of participants taking a multivitamin, B-100 complex, and vitamin D3 were cured of their IBS within three months. It seemed like a miraculous and promising study, so I decided to try it myself. Lo and behold, around the three month mark, I was able to incorporate high FODMAP foods without experiencing bloating (it took a stretch of a few weeks to fully incorporate these foods as my body was adjusting).

Back then, I thought it was the vitamin B5 that was responsible for ridding me of bloating symptoms. Vitamin B5 is closely linked to gut health. Looking back now, I have a strong notion that I was helped due to the thiamine content in the B-100 + multivitamin. I megadosed without knowing it. And unfortunately, after about 4 months, I stopped taking the B-100.

My Second (Reluctant) Megadose

I visited a naturopath in the spring of 2021 to try to get more answers. I still had brain fog and fatigue, and had also developed a regular heart palpitation every ~15 minutes, which coincidentally happened after my second round of a certain vaccine. The naturopath prescribed many supplements, one of which was 150 mg of iron per day. I was shocked by this and thought that was wayyyy too much and was scared I would get iron overload, but he assured me that with my ferritin levels at a 9, it was desperately needed.

Within a week of supplementing with iron, I felt a big boost in energy and felt I had found the answer that I had been waiting for. While it did help, I reached a threshold of improvement that did not change despite continued supplementation with iron for over 1.5 years. The iron supplements did help with my heart palpitations, but I still had brain fog and fatigue. On a scale of 1-10, with 1 being my lowest point in the summer of 2020, iron brought me to about a 4.

My Third (Homecoming) Megadose

So time went on and I tried every supplement under the sun. I focused on vitamins and mitochondrial nutrients such as L-carnitine, alpha lipoic acid, CoQ10, and others, and I was able to live a life that looked kind of normal. But it didn’t feel normal. I was obsessed with finding the answer(s) to this dark cloud that had been engulfing me the past few years.

Until one day, just six months ago, in late April of 2023, a recommended video popped up on my YouTube homepage that changed my life. The video was from a smart lad named Elliot Overton talking about thiamine deficiency.

You probably know how the story goes.

I started with benfotiamine, because I could get it at the store, while I waited for my TTFD to arrive in the mail. I kept trying to press how much I could tolerate without too much headache/fatigue/brain fog, and I honestly can’t remember if I noticed an improvement in those first few days. Once my TTFD arrived though, within two days of supplementing I felt a rushing wave of beautiful relief come over me.

Finally. Finally! My answer had come. I wasn’t immediately better, but I knew improvement was on its way. It wasn’t long before I came across Hormones Matter, which brought me so much useful information! I began sleeping better. My dreams were more vivid. I was able to sweat more easily, something I didn’t know I had lost until it returned. The volume was turned down on my anxiety and breathing deeply was easier.

It took some adjusting and playing around with dosing to find out what would help me. At first, I could only consistently tolerate one 50 mg TTFD pill every-other day, or I would get a racing heart and worsened fatigue. I also noticed that after about a week of taking TTFD, I would start to feel drained, as if it wasn’t giving me that feeling of relief anymore. So what worked for me was to cycle TTFD, thiamine HCL, and sulbutiamine for one week each. That kept my feelings of “relief” heightened. I pretty much abandoned benfotiamine because, well, I had other stuff that was working and I didn’t want to change my routine.

Within about a month, I was able to take one TTFD per day. As time went on, I kept bumping up all of my doses for each type of thiamine. I would basically take a day to test how much I could handle, then try to sustain that higher new dose. By the end of July, I was taking 5-6 TTFD and 10-ish thiamine HCL (100mg each). I am not exactly sure with the doses. I believe I only made it up to 400 mg of sulbutiamine. At a certain point mid-summer, I dropped the sulbutiamine because it seemed to be making me feel depressed, even though it helped when I first began taking it. I also dropped the thiamine HCL. I felt that TTFD was more powerful and so I stuck with it. I no longer experienced a drop in “relief” symptoms and was able to take TTFD only without any adverse effects.

Somewhere between then and now I have worked myself up to 12-14 TTFD per day (600-700 mg). I have very little brain fog or fatigue and can work out without being drained the next several days. I feel pretty darn good most of the time. Of course, there are ebbs and flows, but overall, I am doing well.

In addition to the thiamine, I have been taking lots of support nutrients too, such as magnesium, multivitamin/B complex, selenium, molybdenum. Another major helper for energy has been 10-15 grams of creatine monohydrate per day. I eat a whole-foods diet with no added sugars.

My Fourth (Aha!) Megadose

Recently, I came across information by Linus Pauling, a Nobel Prize and Peace-Prize winner who championed high-dose vitamin C therapy for minor and major illnesses. I caught a cold around this same time, started high-dose vitamin C therapy, and was absolutely sold with the idea, as none of my symptoms really developed into much at all. While I’m not convinced of taking megadoses of vitamin C every single day, I am certain it is helpful during times of sickness.

Then I read about Orthomolecular Medicine, which uses high-dose vitamins for treating diseases (chronic, communicable, genetic), and it all made sense! I felt as though I had uncovered a secret to the world! I wouldn’t have believed it had I not experienced the “miracles” of megadosing first-hand, but now I realize that most, if not all, diseases can be treated with the right dose of specific nutrients for the right amount of time. I also realize that those doses are higher doses than what we think! And higher still! Yeah– even higher. And longer– yes, keep taking them. I don’t mean to oversimplify people’s illnesses, but rather to illustrate the power of high-dose vitamin therapy.

Then Versus Now

My healing journey is not quite over. I have tested positive for antinuclear antibodies since 2020, and my latest test (October 24, 2023) still tested positive (qualitative only). Finding out these results was a little disheartening, as I really thought my results would be negative. I have had less energy and some mild dysautonomic symptoms since receiving those results, which either means a) the power of suggestion has really gotten to me or b) I switched to thiamine HCL around the same time and it is not as effective as TTFD. I am leaning towards the latter, but I wanted to give HCL more of a shot because the amount of TTFD I’m taking per day is getting expensive! And as a more recent update, the last two days I’ve tried Benfotiamine, which I have been very pleased with— my energy seems to be much better than with thiamine HCL.

I also just started alpha-GPC as a new supplement.

Here is some physical evidence that I am healing:

In one of my textbooks, I found that a B-vitamin deficiency (doesn’t say which B vitamin) causes a smooth tongue.

tongue vitamin B deficiency — Figure 1. Textbook images of vitamin B deficiency affecting the tongue.

I took a picture of my tongue in October 2020, and the second picture in October 2023. Notice the more prominent fuzzy (white/gray) projections in the second picture. These projections are quite blunted in the first picture.

Vitamin deficiencies and the tongue — Figure 2. Photographs of my tongue. Left: October 2020. Right: October 2023. The most prominent changes are on the sides and at the back of the tongue (more “fuzzy”). I believe these changes are in large part due to thiamine.

Hope for The Future

My husband and I are excited about the possibility of getting pregnant, especially now that I am feeling so much better. Having a child has been a long-time dream of mine, and while I was struggling with my health, I wasn’t sure if that dream could come to fruition. So now being in the place I’m in, I’m thrilled that we can think about having a child. I’ve had to tap the brakes on my excitement, because I don’t want to potentially cause any harm to a growing baby due to my megadosing of thiamine. So, I have a couple of questions.

Asking Advice:

Does anyone have any research, personal, or hearsay information regarding the safety of megadose thiamine during pregnancy? If so, did the type matter (TTFD, thiamine HCL, Benfotiamine)?
What is the maximum dose you reached for TTFD/thiamine HCL/Benfotiamine?
Have any of you had any experience with weaning off of thiamine or stopping cold-turkey? I have gone a few days here and there without supplementing with no issue, but not longer than that. If so, was your health maintained, or was there a maintenance dose that sustained you?
How did you know it was time to stop/decrease thiamine (if at all)?

Closing Thoughts

I just want to extend my heartfelt empathy for all of you who may be experiencing health struggles. Before these past few years, I sometimes had the arrogant thought that people could just be healthy if they avoided sugar and exercised. I thought their health struggles were their “fault”, to an extent, but I now recognize the complexity of health and the desperation in trying to find it once it is lost. I understand what suffering is and the feeling that there is no escape. I understand the feeling that no one truly knows what you are going through, even though they extend love and patience with you. I get it, and it sucks so much that this has to be a part of the human experience—but I have also experienced hope. A real hope. A hope that delivers what it promised. I could not have known even a day before taking thiamine that my time of deliverance had come. So please do not give up hope. Your day is coming.

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Photo by Tim Mossholder on Unsplash.

The Instant Menstrual Cycle

by Lisbeth Prifogle, MFA

Published on November 7, 2014

2742 views

My uterus decided to end her 6-month vacation yesterday. This is nothing new; I’ve never had regular periods and have tried nearly everything to make my body function on a regular schedule, but it just doesn’t cooperate. Synthetic hormones prescribed by numerous doctors have always made things worse. Acupuncture, when I am working and can afford it, is the only thing that makes them more regular and manageable.

Take a moment to empathize with me – 6 months worth of bloating, fatigue, cramps, blood, etc. in one lousy week. Oh and this would be the second week of a new job – I’m onto you uterus, I’M ONTO YOU!

I’ve tried diet changes, more exercise, less exercise, meditation, medications, channeling my inner moon goddess – everything. I’m finally learning to accept that this is the way my body functions. I don’t like it, but I accept it. What I can’t accept is that we put a man on the moon 45 years ago, but we can’t figure out how to give women some relief. Women have been in science for some time now. Marie Curie won the Nobel prize for Chemistry in 1911. You’d think we could help ourselves, but the most we have advanced in menstrual related relief and technology is OTC pain relievers marketed in pink boxes with a different name and wads of cotton so toxic to our bodies that they can kill us! Don’t you think we need entire labs dedicated solely to easing the pain of menstruation and child bearing. The women scientists can wear brightly colored lab coats and eat an endless supply of chocolate while figuring out new ways to deal with age old biological functions.

Yesterday, I couldn’t leave the couch. I was supposed to go to a barbecue with friends, do all the chores I can’t do during the work-week, and hit up the grocery store, but I was couch-ridden with a heating pad, smelly Chinese herbs, red raspberry leaf tea, and a book. I’m afraid that my friends thought I was lying to get out of the social gathering (I tend to be reclusive), and more than one male employer has given me that “uh-huh, sure” tone when I’ve called in sick over womanly problems. Thankfully, I’m a generally healthy person so that’s the only time I call in sick (and I’m extremely thankful for my health). Take a minute to imagine being in the military and having to tell a male superior that you can’t go out to the field for an exercise because of earth-shattering cramps and excessive bleeding. Then going to a male doctor at sick bay to get a ‘chit’ as proof you weren’t lying.

And I’m supposed to channel my inner moon goddess and be thankful that I’m a woman and can bring life into this world? I’m going to channel my moon goddess alright, channel her and beat her. Don’t get me wrong, I love being a woman and everything that entails, but in the name of science and entrepreneurial spirit – don’t you think it’s about time we figured out a way to ease the pain and suffering that women have to endure monthly?

In an essay originally published in the Boston Phoenix in 1990 and republished posthumously in a collection of essays titled, The Merry Recluse in 2002, Caroline Knapp, wrote, “What Women Really Need from Science.” Here is an excerpt that I think of EVERY time I have an earth-shattering, couch-ridden period, like today:

“So now women can have babies at the age of 90. Big whoop. Roll out the Pampers and Geritol. Open a Cribs ‘n’ Canes shop. And thank you, thank you, thank you, modern medicine.

Something is very wrong here. While a teensy-weensy proportion of women over the age of 75 might welcome the opportunity to procreate in their golden years, and while this development might help ease the pressure some women feel as their biological clocks tick away, most of us shudder at the news. Babies when we’re 90? Postmenopausal midnight feedings?

This news also seems to indicate a slight problem modern science has with focus. What about the here and now? What about the daily realities women face in our younger years?
Any doctor or scientist who truly understood the lives of modern women would be looking in an entirely different direction for ways to ease our burdens and make our lives more manageable. Forget about extending our childbearing years. Forget about finding new and medically thrilling was to complicate our later lives. We need help now! Here, for ambitious doctors everywhere, are a few suggestions.

The Instant Menstrual Cycle

Consider how much simpler life would be if scientists could develop a way to enable women to menstruate in a mere five minutes. No more messy, five- to seven-day bouts of bleeding. No consecutive nights curled on the couch with heating pads to ease the lower back pain. And no more worrying: Will you run out of tampons? Leak? Bleed on his sheets? The five minute menstrual cycle would pack all that discomfort and inconvenience into much more manageable form. One huge cramp. One enormous mood swing. A single flood of tears, and then – whoosh – a single rush of blood into a single, extremely absorbent tampon. If science can come up with an instant coffee, instant breakfast, and instant cameras, instant menstruation couldn’t be that hard.”

Amen sister. She goes on to list other brilliant scientific ideas for some, young scientist to snatch up and make our lives easier including: egg-laying capabilities, clones for working mothers, anti-gravity skin enhancers, and more.

Someone, somewhere, PLEASE hear my plead: We can genetically modify animals to create spider goats and jellyfish pigs, we can travel to space, we can harness the power of nuclear fusion to create electricity and bombs – so why can’t we make advancements in women’s health that would bring relief to half of the world’s population? It’s past time for the Instant Menstrual Cycle – it’s time for a revolution, ladies!

Hysterectomy: Impact on Pelvic Floor and Organ Function

by WS

Published on February 13, 2014

60191 views

My life and health were turned upside down after my unwarranted hysterectomy. I touched on the internal and external anatomy changes in a previous article. I am going to go into more detail here on the effects of hysterectomy on the internal anatomy.

Female Anatomy

The uterus sits in the center of the pelvis held in place by four sets of ligaments. The uterus separates the bladder and the bowel and holds those organs in their rightful positions. Once the ligaments are severed and the uterus removed, the bladder and bowel drop down and, without the uterus to separate them, are now adjacent to each other. The nerves and blood vessels that are severed during hysterectomy may also alter the functions of pelvic organs. This female anatomy video explains the anatomical (and other) effects of hysterectomy.

What Every Woman Wants to Know about Hysterectomy

Pelvic Floor Disorders after Hysterectomy

What do medical studies say about the effects of these anatomical changes on the pelvic floor and organ function?

This 2014 U.S. study concluded that hysterectomy is one risk factor for developing pelvic floor disorders. The others are higher Body Mass Index (BMI) and greater parity. There are a number of studies that came to this same conclusion.

This large 31 year Swedish study concluded that hysterectomy, particularly vaginal hysterectomy, even in women with no vaginal births is associated with pelvic organ prolapse surgery. The number of vaginal births further increases this risk.

According to this large Swedish study, vaginal hysterectomy had a higher risk of surgery for pelvic organ prolapse or stress urinary incontinence than other modes of hysterectomy.

Of course, women who undergo pelvic organ prolapse surgery represent only a subset of those who suffer symptoms of bladder and/or bowel dysfunction.

Bladder Function after Hysterectomy

A number of studies have shown no short-term urinary adverse effects of hysterectomy. However, longer-term follow-up shows an increased risk. This large Swedish study over a 31 year period (1973 to 2003) showed a 2.4-fold risk of urinary stress incontinence surgery in women who had hysterectomies for benign conditions. This Danish study of women aged 40 to 60 years also showed a 2.4-fold risk of stress incontinence in women who had a hysterectomy. A small China study showed a 7.6% rate of pelvic organ prolapse and 67.4% rate of urinary incontinence 6 years post total hysterectomy.

A systematic review of 12 MEDLINE articles that used original data published over a 32 year period (January 1966 to December 1997) “was consistent with increased odds for incontinence in women with hysterectomy….Among women who were 60 years or older, summary odds ratio for urinary incontinence was increased by 60% but odds were not increased for women younger than 60 years.” Another review of this same data consistently found an increased risk of incontinence many years after hysterectomy. However, this study also concluded that “Oral estrogen replacement therapy seems to have little short-term clinical benefit in regard to incontinence and is associated consistently with increased risk of incontinence in women aged 60 years and older in epidemiologic studies.”

The latter statement begs the question “Is the association of oral estrogen and incontinence solely from the oral estrogen or could it be that it’s caused by hysterectomy that prompted the use of estrogen?”

Hysterectomized women of ALL ages were at increased odds for urge (1.9) and bothersome urge (2.6) urinary incontinence (but not stress incontinence) according to this Netherlands study of 1,626 women. This French study of 1,700 women also concluded that hysterectomy increases risk of urge, as well as stress, incontinence regardless of age.

In contrast, this analysis of studies done on urodynamics before and after hysterectomy concluded that “Hysterectomy for benign gynecological conditions does not adversely impact urodynamic outcomes nor does it increase the risk of adverse urinary symptoms and may even improve some urinary function.”

This small study compared incontinence / continence at 1 to 3 years post-hysterectomy and again at 4 to 6 years post-op. Interestingly, some women went from being continent to incontinent while others went from being incontinent to continent.

Why the conflicting results? There are a few things that come into play, the more obvious ones being study design and size as well as the follow-up period. Mostly, the results depend on the reason for the hysterectomy and whether a bladder suspension was done at the same time. Two common reasons for hysterectomy are fibroids and uterine prolapse. Both conditions can cause urinary symptoms such as frequent urination and incontinence. So symptoms may improve after hysterectomy and if the bladder was suspended at the time of hysterectomy (in the case of prolapse), that would also explain improvement.

Bowel Function after Hysterectomy

Some studies show that hysterectomy negatively affects bowel function. While this small and short-term 2004 study (comparing pre-operative to 6 and 12 months post-operative) concluded that vaginal hysterectomy does not increase incontinence or constipation, abdominal hysterectomy may increase risk “for developing mild to moderate anal incontinence postoperatively and this risk is increased by simultaneous bilateral salpingo-oopherectomy.” In contrast, this small 2007 study found that vaginal hysterectomy significantly increased anal incontinence at the three-year point and at one and three years for abdominal hysterectomy. However, there was “no significant rise in constipation symptoms or rectal emptying difficulties in either cohort through the follow-up.”

This contradicts this small case control study that showed significant short-term decreased bowel frequency and increased urinary frequency after hysterectomy. It also contradicts this larger Netherlands retrospective study in which 31% of women reported severe bowel function deterioration and 11% reported moderate bowel changes after hysterectomy. In the control group which consisted of women who underwent laparoscopic cholecystectomy, 9% reported “disturbed bowel function.”

Constipation, straining, lumpier stools, bloating, and feelings of incomplete evacuation were reported by women who had undergone hysterectomy in this small study.

Abdominal hysterectomy is associated with a significant risk of fecal incontinence and rectoanal intussusception according to this small retrospective study.

Post Hysterectomy Fistula

Hysterectomy increases risk of fistula as documented in the below excerpt from this article:

The uterus precludes fistula formation from the sigmoid colon to the urinary bladder.

As well as this excerpt from this article:

The most common types of fistula are colovesical and colovaginal, against which the uterus can act as an important protective factor.

Diverticulitis is a known risk factor for fistula formation. This large study looked at the risk of fistula formation in hysterectomized women with and without diverticulitis using data from women hysterectomized between 1973 and 2003. Women who had a hysterectomy but no diverticulitis had a 4-fold risk of fistula surgery compared to women who did not have a hysterectomy or diverticulitis. Women who had a hysterectomy and diverticulitis had a 25-fold risk of fistula surgery whereas non-hysterectomized women with diverticulitis had a 7-fold risk.

Vaginal Vault Prolapse

The International Continence Society defines vaginal vault prolapse as “descent of the vaginal cuff below a point that is 2 cm less than the total vaginal length above the plane of the hymen.” This Obstetrics and Gynecology International article states that “it is a common complication of vaginal hysterectomy with negative impact on women’s quality of life due to associated urinary, anorectal and sexual dysfunction.” The article cited above explains the mechanism for this common complication in section 2 titled “Anatomic Background.”

Table 3 in section 12 compares vaginal and abdominal corrective surgery outcomes using a 5 year follow-up. Vaginal had significantly higher post-operative incontinence and recurrence rates. The re-operation rate due to recurrence was 33% in the vaginal group versus 16% in the abdominal group.

Surgical mesh is used for many pelvic organ prolapse surgeries. And as shown by the TV ads, surgical mesh has high complication rates. It can cause infection and the mesh can protrude into the vagina leaving sharp edges having obvious negative effects on male partners. And removal of all traces of mesh may be impossible because tissue grows around the mesh.

Women who have not had a hysterectomy and have pelvic organ prolapse may choose to use a pessary instead of undergoing surgery to suspend the uterus (and bladder) or undergo hysterectomy. But a pessary may be difficult to hold in place in women who have had a hysterectomy since the walls of the vagina are no longer supported by the uterus and cervix.

Hysterectomy Consequences

Hysterectomy can have serious consequences on bladder and bowel function and increase risk for future surgeries, but the research is mixed, primarily due to differences in methodology. Pelvic organ prolapse is also a possibility. Important variables that increase or decrease the risk for future problems include the reason for the hysterectomy and pre-operative bladder and bowel function. If endometriosis, fibroid or other conditions compromise or affect bladder and bowel function pre-surgery, then odds are they will be affected post-surgery and whether there is improvement or further damage depends upon a number of factors, including the surgeon’s skill. In contrast, and I think where most women are interested, is whether these problems can arise post-hysterectomy when no such problems existed pre-surgery. The answer is yes, there is an increased risk for both urinary and bowel incontinence post hysterectomy.

Additional Resources

This RadioGraphics article details the pelvic organ sequelae that can be caused by obstetric and gynecologic surgeries and the imaging techniques for diagnosing them.

This Medscape article details the Long-term Effects of Hysterectomy.

Underinsured, Underdiagnosed and Anonymous: My Hormonal Hardships, Part 2

by Hormone Stories

Published on March 8, 2012

2510 views

We left off from Part 1 of my story with a tentative diagnosis of endometriosis, a ruptured ovarian cyst, and ever-increasing doses of oral contraceptives. At that point in my life, I was scared, in pain and worried that I and the doctors should be doing more.

But, as it turned out, there was not much more that I could do. The doctors said that even if it wasn’t endometriosis, the pill would probably still be the least invasive and least risky treatment option available to me. They told me this without any intention of scheduling further abdominal inspections, pelvic imaging, endometrial biopsies, or blood draws for biochemical markers, despite my pleas for each. Then again, they had confirmed my endo’ diagnosis without a laparoscope, or CA-125 antigen test, as it was. So, what else should I really have expected from them now? Life on oral contraceptives continued because, apparently, my only other choice was living without a uterus (and risking paralysis due to prior cervical vertebrae injury) at only twenty-five years of age.

I had never had long, frequent, heavy, or uncomfortable periods, much less menstrual cramps, as a young teenager. But, as a woman on COCPs in her mid-twenties, I was experiencing altogether nonexistent cycles, regular breast discharge, ceaseless bloating, and unrelenting gastrointestinal pain and pressure (on top of chronic neck and back pain from the past car accident). One silver lining to my proverbial cloud was that I had finally regained most of the neck control and movement previously lost in the collision. Another consolation to this difficult situation was that I had also saved up enough money, working through physical therapy, to return to school. And, maybe best of all, I had found (without trying) a steady, supportive, and understanding boyfriend, who was not only my match in every way, but who always stayed by my side, through the ups and downs alike. Little did we know the coming financial and health woes to befall us, yet again, over the next few years.

Fast forward about three more years into the future—I had transferred to the university as a junior during the Fall term. My boyfriend and I had been together, going on strong, for four years. And, I had been working part-time at a job that I loved for nearly two years. The future again seemed bright. Healthcare access, however, remained bleak.

The COBRA benefits from my old employer had long expired, not that I could have afforded them at $600 per month anyways. I didn’t qualify for health insurance at my new workplace because I wasn’t full-time there, owing to a loaded class schedule on-campus. And, the only medical coverage that I had been able to afford since leaving the other company was a short-lived, hybrid POS-HMO plan, which I ended up having to cancel early as nobody in my area would accept it (there went another few hundred dollars, I couldn’t afford to lose, down the drain). We had been working around the system, paying out-of-pocket for generic prescriptions, and general lab procedures, at local understaffed health clinics, since no one else seemed willing to work with us. This got us by (it had to) until an unexpected slip-and-fall accident that December rendered a hidden colon tumor palpable in my lower body (something we wouldn’t learn for another four months or so).

The ER wouldn’t treat me, and only served in referring me to a GI/Endoscopy specialist, who in turn refused to see me because I didn’t have insurance. A major medical carrier subsequently denied me coverage as uninsurable due to pre-existing conditions (namely my C2 fracture from nine years earlier, and my endometriosis diagnosis from four years prior), essentially blacklisting me among all other healthcare providers. I couldn’t even qualify for government assistance of any kind. I had come close to dying in just a few short months without knowing what was wrong with me, and we were running out of time and options fast. That’s when my boyfriend popped the question, to get me on his insurance, and to save my life…

To continue reading, click here.

bloating

Downward Spiral, Upward Hope, Asking Advice

How It Started

How It Really Started

My First (Unknowing) Megadose

My Second (Reluctant) Megadose

My Third (Homecoming) Megadose

My Fourth (Aha!) Megadose

Then Versus Now

Hope for The Future

Closing Thoughts

We Need Your Help

Related posts:

You might be interested in

Related posts:

You might be interested in

Female Anatomy

What Every Woman Wants to Know about Hysterectomy

Pelvic Floor Disorders after Hysterectomy

Bladder Function after Hysterectomy

Bowel Function after Hysterectomy

Post Hysterectomy Fistula

Vaginal Vault Prolapse

Hysterectomy Consequences

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