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Misunderstanding and Misdiagnosis: Journey Towards Endometriosis Diagnosis

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Rachel Cohen

Try this experiment: Google the words ‘endometriosis’ and ‘misunderstood’ and see how many results you get. Care to make an educated guess of how many you would find? 300? 3,000? Try 62,600! For those who don’t have any experience with endo this number might be shocking. But we who have suffered through the long and arduous journey of trying to find a diagnosis, 62,600 is not as staggering as it sounds.

For me, misunderstanding has been a huge part of my life with endo. Although my symptoms began at age fifteen, I was not diagnosed with endo until I was twenty six. Instead, I was misdiagnosed with chronic fatigue syndrome, migraines, bladder infections, urinary tract infections, epiploic appendigitis, kidney stones, pelvic separation syndrome, interstitial cystitis, polycistic ovaries, degenerative disks, a hernia, and the very worst, hypochondria.

Common Misdiagnoses

As I have come to understand over the years, my experience of misunderstanding and misdiagnosis is not one of a kind. In fact, according to the Endometriosis Foundation of America, most women with endometriosis have pain and present symptoms up to a full decade before being diagnosed.  While symptoms have been documented as beginning in girls as early as twelve years of age, the average age of diagnosis is twenty-seven. Additionally, the National Endometriosis Society claims around two million women worldwide have undiagnosed endometriosis.

Like myself, women with endometriosis have been misdiagnosed as having a host of different diseases including interstitial cystitis and polycistic ovaries. Abdominal and bowel endometriosis is often mislabeled as inflammatory bowel syndrome (IBS) while pelvic endometriosis is confused with pelvic inflammatory disease (PID) or pelvic congestion.

Misdiagnosing Endometriosis as a Psychological Disease

Every instance in which a woman is misdiagnosed as having a different medical illness is a potential tragedy, especially because pushing off a diagnosis can place a women in greater danger of losing her fertility.  Being misunderstood and called a hypochondriac, or being told that our symptoms are solely psychologically based is undeniably traumatic. Historically, the idea of blaming the patient for her symptoms has been described by Indian doctors as early as 800 BC. Doctors believed that endometriosis was a psychological issue that could be cured by a positive attitude. According to the Endometriosis Association, 70 percent of women diagnosed with endometriosis were initially told there was no physical cause for their pain, and in 1995 an average of 50 percent of women with pelvic pain were found to have no organic basis for it.

On a personal level, I was told that my physical pain was due to anxiety and depression caused by a past traumatic incident that I had yet to achieve closure on. I was placed on a low dose of tricyclics and instructed to “learn to relax”. The sad part is, both myself and my family accepted this diagnoses as truth and delayed focusing on receiving a genuine diagnosis for many months.

Why is Endometriosis Misdiagnosed?

In a qualitative interview-based study done by Karen Ballard et. al, five main reasons for misdiagnosis or delays in diagnosis were identified.

  1. Unlucky, not ill: Many girls and women who initially experience symptoms assume that they are just unlucky to have painful periods but have no real illness.This assumption leads them to hold back on asking for help or speaking to a doctor for fear that the will just be seen as weak. This incorrect belief is often confirmed by family members who also suffer.
  2. Symptoms normalized: When women finally do gather the strength to ask for help from their doctors, they are often told their symptoms are a normal part of being a women and do not need to be checked out.
  3. Hormones delay diagnosis: Aside from telling women that their symptoms are normal, some doctors prescribe hormones to their patients. This causes an unfortunate situation, as the hormones suppress the symptoms and cause women to believe their symptoms have improved. Women then neglect to get themselves checked out, which causes a delay in diagnosis.
  4. Inadequate diagnostic methods: Recently, it has come to light that the best way to diagnose endometriosis is through laparosopic surgery. Unfortunately, doctors who are uneducated about this are still using other diagnostic methods, such a trasvaginal sonograms. While sonograms can identify endometriomas, they cannot diagnose endometriosis. Utilizing inadequate diagnostic methods can cause a very large delay in diagnosis, or even worse, an incorrect one.
  5. Vague symptoms: Endometriosis manifests in a variety of symptoms. Those symptoms, such as pain, fatigue, bowel and bladder difficulties, and pain during sex are also symptoms of other diseases. Pelvic inflammatory disease, pelvic congestion, irritable bowel syndrome, and interstitial cystitis are a few of the many diseases that have some of the same symptoms as endometriosis. Due to this, endometriosis is often misdiagnosed as one of these other diseases.

How do we prevent misdiagnosis and delayed diagnosis in the future?

  1. Self-education: It is our jobs as strong, independent women to fortify ourselves with knowledge and information about our bodies, minds, and health. The more we know about ourselves, the less likely it is for us to be convinced that we are something that we’re not.
  2. Spread the word: Do you suffer from endometriosis? Have you stocked your brain with all there is to know about it? Let the world know! Share your experiences, knowledge and information with other women who don’t know much about the subject. The more girls and women know about endometriosis, the better their chances of receiving a correct diagnosis.
  3. Inform the medical community: It may come as a surprise to know that not all doctors and nurses are experts at every medical malady. Too often, when it comes to endometriosis, they have a superficial grasp of what it entails. This is due to misinformation coming from the internet, media, and even medical books. We need to take it upon ourselves to inform the medical community what we are really dealing with when we say we have endometriosis.

It’s Up to Us

While endometriosis misdiagnosis and delayed diagnosis are problems that are much more common than they should be, there are ways that we can help ourselves, and others, prevent them from happening. As long as we continue to stand up for ourselves and advocate for the rights of all women and girls with endometriosis, we are on the right track. United together, there is nothing that we endo-sisters cannot overcome in the future.

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

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The Endo Diet – Part 1

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Kelsey Chin

Earlier this year, Stage IV Endometriosis clenched its grip on my body. Desperate for help, I began researching the Endo Diet, and everything I could about my disease. I had heard from an emergency room doctor and several other endometriosis patients that an anti-inflammatory diet, like the one designed by Dr. Weil, could help with the pain. I completely wrote this off as a placebo effect, and couldn’t understand how food could touch my pelvic pain.

One late evening, I curled up with my trusty heating pad and a copy of Dr. Andrew Cook’s book Stop Endometriosis and Pelvic Pain. The information I found in this great resource (which I read, cover to cover, before shoving it into my husband’s hands as homework) completely changed my outlook on food and its role in managing my chronic disease.

The basic idea is that endometriosis is fueled by estrogen. In our modern world, where genetically modified organisms (GMOs) and uber-processed foods abound, external sources of estrogens can be found almost everywhere you look. We have all heard about the risks associated with BPA-containing plastics and GMOs, but what about the foods we already consider healthy? Many different chemicals and even natural foods contain properties that create excess estrogens, or compounds that mimic estrogen. Not only are you fueling your body while eating a seemingly healthy snack of soy beans, you might unwittingly be fueling your worst enemy: endometriosis.

I was already scheduled to undergo excision surgery when I made the switch to the “Endo Diet,” which is basically an anti-inflammatory/anti-estrogen-increasing diet. I began with a daunting step: one month complete detox. I went on a strict gluten, soy, dairy, sugar, chocolate, caffeine, and alcohol-free regimen. On top of that, I began eating only organic foods. It sounds far worse than it really is. The best way to approach this change is to think of these foods as allergies. I have a peanut allergy, which I developed in my early twenties, and I became conditioned to think of peanuts as a dangerous food. As much as I once loved peanut butter, I have developed an aversion (as anyone would after experiencing anaphylaxis!). I tried to approach this in the same way: if I eat these foods, I will feel sick.

Surprisingly, I stayed satisfied despite dropping my favorite foods: pastas, Greek yogurt, cheese, and desserts. I tried to stay away from substitutes for a while, which makes it easier to envision this as a new lifestyle. By the time I had my surgery, my bowel symptoms that I had just accepted as my “normal” became a thing of the past. No longer was my belly bloated, painfully bound, or leaving me rushing to the restroom. This, of course, is hard to attribute entirely to the diet, since I have bowel endometriosis, but it certainly points to some definite benefits when added to proper treatment.

Not only were some of my symptoms relieved, but over the course of 6 weeks, I lost close to 15 pounds! After my excision surgery, when my detox period was finished, I began reintroducing foods (one at a time) to see if I could pinpoint which foods were really a problem. I found that gluten, soy, and dairy all had correlations with different bowel symptoms, so those have become big no-no’s for me. Sugar and chocolate have not caused any symptoms, but I still try to keep them as “limited” foods, meaning I will allow small amounts, unless I can use a healthier option. One reason to limit chocolate is that most packaged chocolates include soy lecithin. While not enough to make me queasy, I still want to make sure I am not getting much soy. I also do not use white, processed sugar in my own cooking (I use honey, maple syrup, or agave nectar), and I try to make my own chocolate treats with baking cocoa instead of buying processed foods. I still allow myself a treat here and there, but I do my best to make my own foods at home, where I can control the ingredients. Finally, because I am trying to get pregnant, I do not drink alcohol or coffee, but drink decaffeinated teas once or twice a week.

I see many women considering or trying to adhere to the Endo Diet with questions about what is OK to eat, or hoping for new ideas. It sounds like you subsist solely on fruits and veggies! Well…I kind of do! The bulk of my food is fresh, organic, or locally grown fruits and veggies. I like to talk to the local farms about their use of pesticides, and make my decisions to buy non-organic based on their farming techniques. To be honest, it is HARD to find quality, fresh, and affordable organic food, so I have a few local places I feel comfortable buying from, even though they aren’t certified organic farmers. I wash those fruits and veggies thoroughly. Any meat that I buy, however, I make sure is organic, and if possible, grass-fed. Chicken is especially important, because of added growth hormones.

To stay full, and keep long-lasting energy, I snack on nuts (no peanuts, of course!) and make sure I have enough fiber and protein with beans and meat. Gluten-free oatmeal has become my new best friend, and I love my Smitten Kitchen cookbook, which includes an amazing recipe for homemade granola. It’s quick, delicious, and a great on-the-go breakfast. I use coconut oil in almost everything I make, and eggs are another great source of protein in the morning.

So what are some foods I eat on the Endo Diet? Take a look!

Here, you see fresh vegetables I bought at local farms, which I ate raw, chopped up in stews and served over rice, sliced and sprinkled in a salad, or simply steamed.
A good friend came over the other day, and I made a delicious snack of fresh fruit, homemade granola, and tea.
I prefer to use organic honey, but this honey is from a local farm on protected land, staffed by volunteers. I couldn’t resist!
When I’m feeling a bit run-down, a smoothie is a delicious way to get fresh fruit, a little rice milk, and good-ol’ H2O into the system. Below, you’ll find my recipe.

I’ll continue to share my favorite foods and recipes, but today, I made this delicious smoothie. Even my husband liked it, which is fairly pretty uncommon when it comes to my Endo Diet.

Farm Fresh Peach and Blueberry Smoothie

2 peaches
1 cup of blueberries
1/4 cup vanilla rice milk
2 Tbs raw honey
handful of ice cubes

Wash, pit, and chop the peaches. Wash the blueberries, letting impurities and stems float to the top of the water for removal. Add all ingredients in a blender or food processor. Blend roughly 1-2 minutes, or until smooth. Serve as a drink, or freeze into popsicles, and enjoy this delicious evening treat!

Kelsey is an Early Childhood Educator and blogger from the Boston area. She chronicles her journey using sewing as a positive outlet while living with chronic pain and Stage IV Endometriosis. Diagnosed at 22, Kelsey has spent six years learning about her disease, and has recently become active in Endometriosis research and advocacy. She is a published poet who dreams of writing children’s books, and opening her own preschool that supports reading development. To read more about Kelsey’s daily dabblings in sewing, as well as recipes, preschool curriculum ideas, and information about endometriosis, visit her blog at www.silverrosewing.blogspot.com

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You Cannot Do This to Us Anymore! Lupron Does Not Work

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My Lupron Endometriosis Nightmare

It was my 26th birthday. My boyfriend and I were entangled in an intimate moment, when I felt my body seize in an all too familiar pain. My body tensed up, forcing me to launch into fetal position and kick my boyfriend halfway across the room.  As he looked at me in complete and total shock, I realized, ‘It’s back’, and curled up in a ball crying.

I had my first excision surgery for endometriosis when I was 24, and hadn’t given much thought to my endometriosis growing back before that episode. Due to a change in insurance, I was forced to see a new gynecologist. Scared and in pain, I did what I thought was right, what any inexperienced patient would do, and put my body, future, and pain management all in her hands.

The Lupron Journey Begins – How Bad Can it Be?

Having previously exhausted every birth control measure, I assumed a second surgery was in order. Instead, she suggested Lupron. Things were different then; the online health-space was mid-development and there were barely any resources dedicated to helping women like me. At the time I thought, “She’s the doctor, she knows better than I do, and even though it sounds awful; how bad could it be?”

The answer was bad, worse then I could have even imagined. Almost immediately, I had awful reactions at the injection sites. My skin became hot and sore, making it hard for me, a preschool teacher, to move around or even sit. I spent days sitting on ice packs, pillows, and heating pads.

Maybe Lupron Does Work

I’ll admit for the first few months I felt better, and I even thought “Wow! What a miracle drug!” I started running again, I was working more and going out with my friends more. I even participated in a 5K for charity. Even my libido was unaffected, actually it went through the roof. I was back on top, despite the school nurse having to see my rear end once a month.

Maybe Not – Lupron Hell

It wasn’t until about 3-5 months into the treatment that all hell broke loose. My Lupron side effects were off the charts and my pain had returned. I was experiencing hot flashes, night sweats, and a major increase in appetite. Within a few months I had gained 20 pounds.  For a slender 5’3″ woman, being over 140 lbs made me feel uncomfortable in my own body. I found myself having awful mood swings, and bouts of depression; my memory was incredibly foggy, prompting my boss to comment that I often seemed in a daze.  I was having migraines and insomnia. Even with Add-back therapy, I suffered immensely.

I wanted to scream at my doctor for ever putting me on this drug. Despite being miserable and wanting out, I was forced to stay on it for 12 months (twice the recommended time). This also wasn’t a doctor in the middle of nowhere, but rather one of Time Magazine’s best doctors, associated with one of New York’s best hospitals. I assumed I must be in good hands, and needed to follow her recommendation. However, my doctors felt a successful patient was one who got pregnant. Although I was a 26 year-old, broke preschool teacher with no immediate plans about having children, it seemed this fact had slipped their minds, along with any concern as to my quality of life; or rather lack there of. Thankfully a second opinion from another specialist gave me the courage to advocate for myself, and to demand to be taken off the drug and given other treatment options, of which I was originally told there were none.

Long Term Side Effects of Lupron

I still have lasting side effects from Lupron. My ovary is enlarged, and ovulation is excruciating. I continue to suffer from night sweats, memory loss, and weight gain. I feel as if l poisoned myself for 12 months.

Now, 4 years later, I have an excision specialist and a diagnosis of deep infiltrating endometriosis, which has required two additional surgeries. Even though I still have pain, I am confident that I have doctors who care about me and will listen when I say I’m in pain, or when I’m not interested in a treatment. If you feel like you know more than your doctor or they’re not listening; then its time to leave.

From Patient to Patient Advocate: The Birth of Endo Warriors

I have used my pain and frustration to co-found an endometriosis organization called Endo Warriors (links below) to help give support and resources to women with endometriosis.

I am writing this article because I want women to know that this drug is not helpful for women with Endo. Lupron was meant for men with prostate cancer and not for women suffering from endometriosis. It does nothing to shrink the disease or for pain management, and in turn makes us sicker. I had little to no issue with my ovaries before and now I have transient cysts, an enlarged right ovary, and excruciating pain with ovulation. This drug is dangerous and it’s not being used correctly. We need treatments that help; we need a cure, not this poison. We need doctors who care! It’s time for us to stand up and shout, “You can’t do this to us anymore!”

What makes me angry is that some doctors refer to this drug as a cure, others as “your only option” when clearly it isn’t. Many women can use it effectively if surgery was not effective, but at what cost? Is the risk of ovarian function worth it? Are the lasting side effects worth it? Doctors need to be honest with their patients and give them resources so we can make better informed decisions about our treatment. Since that doesn’t always happen, I hope everyone learned a thing or two from my cautionary tale. I’m not saying don’t take Lupron, because it might be the right treatment for you. I’m saying that I don’t trust the drug or the research behind it. I believe it was the wrong treatment for me and probably is for many, many other endometriosis patients.

Information about Endo Warriors

If you are battling endometriosis and would like support from other Endo Warriors please contact us:

Email- endowarriors@gmail.com

Facebook- https://www.facebook.com/pages/Endo-Warriors/496001373757588?ref=hl

Twitter- @endowarriors and @jillybean126

Participate in Research

Hormones MatterTM is conducting research on the side effects and adverse events associated with Lupron. If you have taken Lupron, please take this important survey. The Lupron Side Effects Survey.

To take one of our other Real Women. Real Data.TM surveys, click here.

To sign up for our newsletter and receive weekly updates on the latest research news, click here.

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Angela’s Lupron Story

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In June 2006 a 10cm endometrioma was found on my ultrasound. I researched as much as I could about endometriosis as I was told it was a possibility that I had it. I was sent to my local Gyno and she told me she wanted to put me on Lupron and that nothing could be done even if I had Endo. I refused. I didn’t want to be put on a medication if it wasn’t proven that I had endometriosis. To me, that was really stupid on the doctor’s part. I did my research. I knew it was used for endometriosis, but unless I was diagnosed, I was NOT going on Lupron.

I searched high and low and thanks to the worldwide web I found two specialists in Toronto for endometriosis, so I had my doctor send the referral over. He found the recto-vaginal cyst by rectal and vaginal exam that had been missed for 14 years. I was happy that finally they had found something. I knew it wasn’t all in my head for these many years. He sent me to his protégé.

Post Surgery Lupron

I was on the operating table three months later in June 2007. After my surgery I was out of it. The surgeon supposedly talked to me but I was not coherent at the time so his intern was told to come in. I was told that Lupron was the best medication for the severity of the disease I had and she gave me a prescription. I felt like I had to take it. I just had surgery and she was telling me it was the best option and at the time. The specialist, the Gyno and the GP all told me that “Lupron suppresses endometriosis.”

From June to September 2007, I took the monthly injections and I remember the first month feeling somewhat okay. I guess I put most of the blame for the side effects on my recent surgery. After two months, depression started to kick in and a major fibromyalgia flare as well. My bones and joints were so sore. My muscles ached like crazy and that was with the Add-back therapy. I would get sharp pains to the pelvis that would leave me breathless. On the plus side, no period. After three months I went back on my regular birth control pill, Marvelon. The transition went well.

Lupron Again and Again

In June 2008 I was told to go on Lupron again. I must have been a glutton for punishment because I did, for another three months of monthly injections without the Add-back therapy. My mood was extremely out of control. I was angry and agitated. The Lupron injection was causing insomnia. My moods were all over the place and the pain intense, however, there was no bleeding or Endo pain. After this, I went right back on Marvelon.

In 2011 I went back and forth from the Endo specialist who did my surgery and pain management clinic. I contracted PID. I felt that there was major damage from the PID plus Endo. The original surgeon said there was fluid in the cul-de-sac and told me I had to go on Lupron again. He said if the pain and fluid went away it was Endo and he would operate and if it didn’t, it wasn’t Endo.

So in October 2011, I had one injection that lasted for three months without the Add-back therapy, per his request. I didn’t want to, but the pain was too much to take, so I did it anyways. Well, this was the worst experience yet because even if I wanted off of Lupron after a month, I couldn’t because it was a 3 month injection. I was screwed. The first month was okay, but then I became extremely depressed, no sex drive, chronic headaches, nausea, no ambition, and insomnia.

I went back after three months. He didn’t do an ultrasound and because my pain wasn’t gone he said it wasn’t Endo; it was neuropathic pain syndrome. Oh Lord. He really pissed me off. So back to the pain management clinic to be a guinea pig for another year before she would agree to operate.

In February of 2013 I had surgery again and Endo WAS found.

What I Learned

Lupron did not suppress my endometriosis. The doctors either did not know this or prescribed it anyway. I realized after my first injection, that the medical staff at the clinics also did not know how to use Lupron. They had to read the instructions on the box, and even then, would prepare the injection wrong. The instructions clearly say “DON’T SHAKE.”  It is supposed to be mixed by rocking it back and forth slowly and gently. I noticed that when they mixed it improperly, the Lupron side-effects came on much more quickly and much stronger than when they mixed it properly. I don’t know if this is coincidence or not.

If I had known what I know now about Endo and Lupron after speaking to Dr. Redwine, I would never have taken this medication to begin with. Nothing suppresses Endo, no medication, no diets etc. If it is not all excised, it will continue to grow, period. I went through years of hell because the doctors did not know what they were doing. Please don’t make the same mistake I did.

Participate in Research

Hormones MatterTM is conducting research on the side effects and adverse events associated with Lupron. If you have taken Lupron, please take this important survey. The Lupron Side Effects Survey.

To take one of our other Real Women. Real Data.TM surveys, click here.

To sign up for our newsletter and receive weekly updates on the latest research news, click here.

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Endometriosis and Adhesions

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In 2007 when I was finally Diagnosed with Stage IV Endometriosis I wasn’t expecting anything but “a diagnosis”.

When I spoke to the attendee after my surgery she said that there was massive scar tissue from a previous bowel surgery I had when I was seven years old. It had worked its way all the way up to under my ribcage. It took an hour to just cut that all down and that was just part of my Endo surgery.

My entire pelvis was frozen solid with adhesions. Everything was wrapped around my uterus including both of my ovaries (kissing ovaries). To this day I always find it funny that through the 10 or so ultrasounds and transvaginal ultrasounds they kept saying they saw my ovaries with “certainty,” even though each time I watched them struggle to find them.

From 2010-2012, I spent the years protesting adhesions on my bowels and bladder causing painful sex, bowel movements and urination. I went back to my surgeon at least three times. My surgeon told me I was fine and there was no endometriosis. Then on the next visit he said there was fluid in the cul-de-sac and told me to take Lupron. He said, if it goes away its Endo, if not then it’s not Endo. I went back a month later with no change in the pain but he didn’t do another ultrasound to see if the fluid was still there. He just said “It’s not Endo, its Neuropathic Pain Syndrome.” Needless to say I told him off and got an appointment with the Wasser Pain Management Clinic in Toronto. The doctor wanted to try me on different meds. (I was on Visanne which made me suicidal, gave me chest, neck and back acne and severe abdominal pain and Amitriptyline which made me really groggy, crave carbs and gain weight). She wanted to switch me to Gabapentin to see if it would make a difference. None of the medications help. If anything, the meds they gave me made my symptoms worse.

By the time I made it to the pain clinic, I was doing three enemas a week just to have a bowel movement and to not be in pain. I had a another colonoscopy and as usual it showed no signs of anything. They told me my pain was IBS and Endo. I had all the signs of interstitial cysititis (IC) but the cystoscopy showed no signs of inflammation in the bladder. So again the wait continued. I was peeing in my pants because I had no sensation to pee at times, then other times the pain was so intense I would vomit and when I made it to the toilet I couldn’t pee. The pain was out of this world.  It was interfering with my life and job in a big way because I couldn’t go anywhere if I wasn’t near a toilet in seconds. I was peeing 60+ times a day at this point.

December 2012 the Gyne at the Wasser Clinic finally agreed to do the surgery. I was told she would remove my left ovary and both tubes. Since I was no longer looking to have children, if things went wrong she would open me up and remove it all.  I was OK with that. I signed off on that.

When I woke up I wasn’t in a lot of pain like my last surgery and I got very little details from my attendee. I had to wait six weeks to see my surgeon and to get my results.  I was told there was Endo in the cul-de sac, adhesions on my right side on the bowels causing a partial bowel obstruction and my right ovary was embedded in the pelvic wall and she left it there. On the other side the ovary was attached to the uterus by adhesions and the uterus stuck to the sigmoid colon by adhesions. Nothing was removed like I was told, so I was extremely confused.

At my six week appointment she said she ran into difficulties with the density of the adhesions covering the ureter and ovary that was embedded into the pelvic wall and said it was too dangerous to remove unless she opened me up…Umm did I not agree to that before I went in? rrrrr. She said my uterus was nicked with a tool and I was bleeding out but they managed to stop the bleed.

Later, after not being happy with what she told me, I took to Facebook and asked Dr. Redwine some things about my results. He mentioned that the giant cell found on my bladder flap that was biopsied was carbon residue from the laser used in 2007. He said it acts as a splinter so that might explain the painful peeing and all the other issues I had with my bladder.

Right now, after undergoing two endometriosis surgeries, I feel the major battle moving forward will always be the adhesions that seem to grow like wildfire in me. A hysterectomy would not stop the adhesions, so it is something that I still have in the back of my mind but don’t think I will pursue unless 100% necessary.

There are many therapies for adhesions, infertility and endometriosis. One of them is Clear Passage Therapy, however, I don’t live in the US and I can’t afford the treatments but I understand that they have very high success rates.

My only other option right now is Yamuna body rolling. You roll on the ball slowly to break up adhesions. I know many women who have had surgeries and swear by this technique. This is why I have considered it. I am a work in progress and I don’t know what is next. It’s a watch and wait game for now.

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Progress in Endometriosis

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New ideas take hold slowly in medicine, unfortunately.  A former assistant professor of neurology at Stanford once told Dr. David Redwine, the father of Modern Concepts in Endometriosis Care, it will take 30 years for your ideas to take hold.  What I did not understand is, taking hold does not mean conversion.

So the ideas developed in Modern Concepts, are taking hold. There are somewhere less than 100 gynecological surgeons who have been identified as doing effective endometriosis surgery in the US.  A Texas surgeon, John Dulemba MD, thinks maybe that is true worldwide.

Is this means for despair?  Well, yes if you are a person needing skilled removal of your endo. On the other hand, 30 years ago there was one doctor identified as doing skilled excision. Shortly others began showing interest in finding better outcomes for their patients.

I once had a discussion with Spence Meighan MD, the Director of Medical Education at Good Samaritan Hospital and Medical Center in Portland Oregon, about why doctors embraced new ideas so slowly.  One observation he had was that, only half of what we teach medical students in medical schools was accurate. The biggest issue is that we do not know which half.  We should be teaching more art of medicine and science of inquiry.  Not assuming as they come out of medical school they are now prepared to practice medicine. What they are prepared for is to begin to listen, look, inquire and research what they are unsure about.

Other reasons endo excision has been slow to become main stream are many.  For one, if you have a busy Ob/Gyn practice, taking hours per case in the OR plays havoc with office and surgery and delivery schedules.  A surgeon simply does not have the time in a general Ob/Gyn practice to take the time for each endometriosis case that removal of disease requires.

Another reason could be if gynecologists are not keeping up with the literature, they still see excision of endo as “out there”.  My sister-in-law recently went to a doctor who mentioned endometriosis to her and that if so she would need a hysterectomy.  When she asked about excision, the response was that is fringe therapy.  “Fringe Therapy”?  Well, if you have multiple laparoscopies, multiple medical therapies, been told to get pregnant, then told you need a hysterectomy and none of that worked?  Tell me which is fringe therapy?

So this leads to another reason excision may be slow to be embraced.  If you take care of endo in one or two surgeries, (Meigs, Redwine, Albee, Sinervo, Robbins, all have positive outcomes in one or two surgeries), then the loss of income from repeated laparoscopies, office prescribed medical therapies, pregnancies, and hysterectomies trying to treat endo becomes significant.  On the other hand, if you move away from scarcity thinking, and realize we have over 8.5 million women in North America needing effective surgery and over 176 million worldwide, there is no scarcity of patients needing effective surgery.  It becomes a huge opportunity and it is quite gratifying as well, because patients do so well as surgeons ability to find, and remove disease results in very happy patients.

Endometriosis pain is on par with acute appendicitis.  Patients develop peritoneal signs and symptoms, (bloating, acute abdominal pain, nausea, quiet bowel, sweating, paleness, sometimes fever, anxiety etc etc) something every medical student and nursing student has been well educated to look for in patients.  But in endo patients we can somehow say, “oh it’s just her period”.  If you think about the degree of pain associated with peritoneal inflammation, the least we can do is be sure that the patient has adequate pain relief until disease can be resolved.

What we fail to recognize in untreated endometriosis, is that this disease restricts potential, sexuality, child bearing, ability to work in many cases, and general constricts life down.  I have seen many, many women permanently relieved of their pain through excision of painful implants.  Returning to life as a sexual being, working woman, new mother often, they soar as never previously thought to be possible.  They are very grateful people.

It is unconscionable that we turn patients with acute abdominal pain away to suffer without assistance.  We would not do that to someone suffering pain from organ perforation, blunt abdominal trauma, or appendicitis.  The mechanism (inflamed peritoneum) is the same, relief of pain should be comparable.  Chronic use of pain medicine does not lead to abuse, it leads to relief, perhaps enough relief that she can get off the couch and turn the heating pad off.

Endometriosis is not a fatal disease, however, despair can be.

 

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Postpartum, Parenting and Endometriosis

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I was not diagnosed with Endometriosis until four years after the birth of my daughter.  The pain of endo plus postpartum depression was hell mentally and physically. And did I mention, I was a single mother as well.

When my daughter was born I felt no attachment to her whatsoever, no love, nothing. I felt like she wasn’t even mine. I was depressed; I was in pain from the delivery and emotionally was not available to my daughter. I was also having trouble breastfeeding and after 2 weeks, I gave up. The first week after delivery was especially difficult. I was dealing with the pain of childbirth as well as trying to treat a yeast infection that I had during delivery. Every time I stood up I had severe vaginal pain and this lasted a year after the birth of my child.

My daughter cried from the day I took her home. She was a very fussy baby, only would sleep if I held her. I tried the ‘cry it out method’ and that didn’t work. She wouldn’t drink her formula and up until she was 9 months she drank only 4 ounces 3 times a day.

By the time she was 9 months she started walking. She would get frustrated and wanted to be held, then let down, wouldn’t go in a stroller, would throw herself back if you were holding her, she would cry and cry and cry. Nothing at all I could do could console her. I tried everything. By the time she was one she started to slam her head on the ground out of frustration and that just stressed me out more. She was never on the charts for weight or height but she was very intelligent and met all other milestones and still does.

I would get so frustrated I would put her on the bed and let her scream because I just wanted to throw her. I couldn’t understand why I had these feelings. They were so strong.  I thank God at that time I was living with a family and the husband would take her from 4-11pm when she would just scream bloody murder. I felt like such a bad mother and I really started to resent her being born. I felt angry at her father. I was so tired and my head just didn’t feel right mentally.

I remember having a dream that she was hanging outside the window and she was screaming for me to help, but I just looked at her and I let her fall. When I realized what I had done I ran downstairs to see if she was okay. She was, but she looked at me as if I had betrayed her. Even though it was a dream, in a way I had betrayed her. I wished that she wasn’t born. I felt she ruined my life and was bringing me down into a further depression I just couldn’t get out of.

I went to the doctors told him I must have postpartum depression (PPD) and he told me no that I didn’t. I talked to my mother and said the same thing and she said “I had three children and I didn’t have it and so you can’t have it.” You have to remember I was on my own at this time and everyone was telling me I was fine.

One day I was watching a TV program on PPD when my daughter was three years old. I knew I had PPD. So, I walked myself right into the Emergency room at the hospital and told them that I think I had it. I would never harm my child, I just had thoughts. The doctor gave me sleeping pills and sent me on my way.

I would become so frustrated at my daughter I would scream in her face and tell her to stop crying. Then I would cry because what type of mother does that? One night I felt like there were demons on my room and I was petrified.

Mentally, I was falling apart. I was nauseated, tired, irritated, angry, I had severe acne everywhere, my back, chest, face and neck and in pain in my pelvic area and bowels. To be honest I was just down right out of my mind when I finally went to the doctors again. I was sent to get an ultrasound done and that is when they found the cyst. I went to my gyno and she wanted to put me on Lupron.  I refused, as I did my research about the side-effects. However, I did go on the birth control continuously to see if that would shrink the cyst.

Within one week something happened. It was like a light went on. I never felt so great in my life. The acne started to clear up, I wasn’t angry and my mind was so clear that I couldn’t believe it. That is when I feel like my life changed.  I realized that my entire life I had had something wrong with me hormonally but that it was pushed aside by doctors.  They just kept telling me I was depressed.

I am so glad that I am not like that anymore, but I feel like I damaged my daughter mentally during that period of my life. She suffers from anxiety now.  I really feel it was because of what I was going through.

After having my end treated with multiple surgeries, I feel better, but not great (read my story here, here or here).  I suffer from debilitating fatigue and I think that is the worst when it comes to wanting to do things with my child. When I wake up I feel like a truck hit me and I get a little crusty with my daughter because of it.  I know she can’t understand what I am going through and even if I try to explain to her. I don’t think I will ever get back the first five years of my daughter’s life. I feel like it has been a blur. It is like I don’t remember even being there during that time.

My daughter is very compassionate and understands that I have Endometriosis but it still doesn’t help when I have symptoms that affect her.  And that makes me really sad.

Is there anyone else out there that had endo and then postpartum depression?

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