August 2013

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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From Lupron to Fibromyalgia, Hashimoto’s, Pericardial Effusion and More

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Kerri Russo

My name is Kerri. I was diagnosed with Stage IV Endometriosis when I was 27 years old. I am here to share my story about Lupron so that hopefully someone else does not have to go through what I have gone through and what I am still going through.

I suffered through years of horrifically painful periods when I was in high school. My cramps were often so bad that I would be crawling around on the floor every month.  I would develop fevers from the inflammation and the pain. I started getting sick a lot.  I was dismissed by almost every doctor I went to. I just consistently heard, “You are young, don’t worry about it, “or “You are just stressed out.” But I know my body and I knew something was wrong. My hormonal fluctuations were also a nightmare. I suffered waves of depression and extreme irritability. It was not until I was rushed to the hospital for pancreatitis that my doctor noticed a deformity in my uterus through a CAT Scan. I decided to see a new gynecologist and he immediately sent me for a pelvic ultrasound. I had cysts everywhere. After my first laparoscopy, I was diagnosed with Stage IV Bilateral Endometriosis. All the visible endometriosis was removed along with the cysts.

I continued to be proactive and go for regular pelvic ultrasounds. Unfortunately, the cysts and endometriosis progressed rapidly. My doctor said I was the most progressive case he had ever seen. I then went on to see a Reproductive Endocrinologist. He did an in-office ultrasound on one of my visits and told me I needed immediate surgery. After surgery, I was told that the endometriosis had spread rapidly to my entire pelvic region as well as my kidney, my liver, my bladder, and my intestines. He said to me, “We are going to start you on Lupron. Your case is too progressive. This is your only hope.”  I was also told I would never be able to have a child of my own.

I went home and researched Lupron myself. There was nothing, but horror stories about it online. I was especially concerned with the alarming amount of fibromyalgia diagnoses’ after use of Lupron. I addressed my concerns to my doctor. He reassured me by saying, “You can’t believe everything you read on the Internet. This is a good drug.”  I decided to trust in my doctor, even though my gut instinct was telling me not to take this drug. However, I was living a life of pain and wanted desperately to get my life back.

I received my first dose of Lupron through injection August of 2007. I was told that my only side effect would be hot flashes.  I never got a hot flash from Lupron. Instead, I experienced crippling fatigue and involuntary muscle twitches and facial tics.  At the end of the month I still got my period. Lupron is supposed to suppress your period. I called my doctor and told him. He did not seem concerned. Therefore, in September I received my second Lupron injection. My fatigue and muscle twitches increased and I, again, got my period at the end of the month. My third and final shot of Lupron was administered in October. I remember being at work and saying to my co-workers, “I don’t feel right. Something is not right.” Every muscle in my body ached and my joints were hurting.  I could not bend my fingers. I put a call into my doctor.  I was not able to reach him, but spoke with the Nurse Practitioner. I told her what my symptoms were and she just told me, “That is not from Lupron.” She seemed annoyed that I kept asking questions. I had to call out sick to work the next day because my entire body hurt. It took me a week of calling everyday to even get the doctor on the phone and the only answer I did get from him was, “You must have a virus. Go see your regular doctor.”

I went to see my regular doctor. I told him my situation. He went home and researched Lupron on a website that he used for his own practice. He called me personally and said, “I don’t know why your doctor told you that this drug doesn’t cause fibromyalgia because it does.”  I will forever regret deleting that voicemail message by accident. Needless to say, my reproductive endocrinologist never saw me again. I, also, have not been able to work full time since October of 2007. My life was forever changed.

I was sent to a rheumatologist and was diagnosed with fibromyalgia. I was bed ridden for six months. I went from walking 2 miles a day to not being able to go up and down the stairs without pain.  All of my muscles felt like I had spent the day lifting weights when I had actually been in bed all day. I ached from my head to my toes. I had to resign from my job teaching children with Autism. It was too physical and I could no longer handle it. My entire world had been turned upside down. I was offered Lyrica for my fibromyalgia, but after my experience with Lupron I was terrified to try it. My immune system crashed and in the following months I was diagnosed with thyroid disease, fluid around my heart, Epstein Barr virus, vitamin deficiencies, and food allergies. In addition, the Lupron did nothing for my endometriosis. It was still growing and spreading.

In February 2013 my bladder shut down and I was completely catheterized. The belief was that the adhesions, scar tissue and cysts were causing the bladder problems. Therefore, in April of 2103, I underwent a full hysterectomy. My bladder, unfortunately, is still not operating on its own and I have also been diagnosed with a neurogenic bladder. This is concerning because I was born with only one kidney and a neurogenic bladder is one of the main causes of kidney failure. My urologist believes I may be a candidate for a bladder pacemaker which may or may not even work.

It has now been six years since I took Lupron and I still experience all the side effects from it. It is my opinion that this drug shut my immune system down and led to all of my other health problems. I have done so much research and numerous women are experiencing the same side effect. This NEEDS to stop!  I struggle everyday with the memory of the life I used to lead. It is a sad realization when your life stops, but the rest of the world keeps living. It sounds silly, but I would love to go back to the days where endometriosis was my only health concern. I have tried my best to become my own health advocate and it pains me to say that I have lost faith in those doctors who treat on a universal level, rather than a case by case basis. It is my hope that my story can help spread awareness and maybe help someone else out in the end.

There is not a day that goes my where I wish that I didn’t listen to my gut instinct that day.  I have lost my career, my health, my finances, and most of my friends in the process. I have been humbled by this and never take good moments for granted. I would love a day of no pain. I have to believe that if I keep fighting, there will be some light at the end of this very long, grueling journey. I hope the universe will allow me the opportunity to pay it forward.

To learn more about Kerri’s health struggles, click here.

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.

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I’m a Lupron Teen

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My name is Sydney and I am 18 years old. I was diagnosed with Endometriosis in 2011 at the age of 16. After much trial and error with medications to treat my Endo I turned to the Lupron shot with Add-back therapy, which means every three months I go and get a shot into my back side and everyday I take a pill called Norethindrone.

My first Lupron shot was nerve racking. I left the hospital in a wheelchair because I was feeling faint after the huge needle was placed in my butt. I started feeling weird side effects, like hot flashes, dryness, night sweats; you know, normal things all teenage girls go through during menopause. The only woman I knew who had ever gone through menopause was my grandma, so I talked to her.  I bought an organic hot flash spray, and I opened the window at night.

I was really upset and depressed when all this was happening, but I was open about it. I talked about it with everyone; my mom, boyfriend, even my dad. I explained to everyone that I needed support and kindness during this time. I asked them to be patient with me as this was difficult for me to handle. They were so good about it, the most supportive they have ever been. Soon my side-effects subsided and it was time for my next shot, which went much smoother.  No wheelchair and fewer side-effects and still lots of support !

After my third shot I was given a bone density test to make sure I could still get the shot without it effecting my bones (another side effect) and I passed ! I have now been on the shot for over a year and I am so satisfied. My pain is so well controlled and I experience minimal side effects. Lupron is hard at first. It takes time for your body to adjust. It’s not right for everyone but it seems to be working for me.

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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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 After Hysterectomy

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My name is Rosemary and I have been dealing with endometriosis for the past 21 years.

I had my first laparoscopy in 1992 due to sudden onset of pain from a ruptured ovarian cyst. They found endometriois on the right side. Over the years, the endometriosis spread to the left side, bladder and intestines.

I had a total abdominal hysterectomy in 1995, when I was only 28 years old and only two months after having my youngest daughter. My daughters are miracles and I am extremely lucky to have them despite these issues. I was convinced to have the hysterectomy after the 6th laparoscopy for endometriosis. This was after the right ovary, tube and appendix were already removed and I had tried many techniques for pain management including acupuncture, acupressure, hormones, Lupron, Depo Provera, meditation and many strong medications. I would try anything, I told one doctor that I would sacrifice a chicken in the corner if that would help. Unfortunately the pain was relentless. It was and is a constant, stabbing, twisting pain.

During the hysterectomy they found Stage 4 endometriosis all throughout the abdominal cavity. Unfortunately the doctor didn’t remove the endo during the surgery. They just removed the left side ovary and tube, uterus and cervix. The day after the surgery I was given Premarin. The pain returned with a vengeance within 6 months. This is when the real “fun” started. I had to find a doctor that understood endo after hysterectomy. I have had 14 more surgeries since the hysterectomy. In each one and over ten years after the hysterectomy they found live endometriosis. The hysterectomy did not resolve my endometriosis. The endometriosis was deep in the peritoneum, along the bladder, on the intestines and it kept returning. After each surgery I would get about 12-18 months of relief.

I worked with many different doctors from OB/GYN’s to renowned reproductive endocrinologists and general surgeons who specialize in adhesions. During each surgery they found many thick adhesions gluing my insides together. I had my last surgery in Atlanta last year at the Center for Endometriosis Care and they were fantastic. I had relief for about 13 months. Unfortunately the pain has returned.

I have returned to pain management doctors. This is such a frustrating disease. I have had many doctors tell me I was “just stressed,”  or that because I am a single Mom with two daughters, I’m just depressed and the pain is in my head. I have also had amazing doctors who have listened and explained the disease and how they can help. I have had countless tests that show nothing and yet every laparoscopy has shown either severe adhesions or residual endometriosis or issues that need to be corrected.

The best advice I can give is trust yourself! You know your body better than anyone and if you aren’t getting a doctor to listen, find another one! Be your own advocate and educate yourself on this condition. There has been tremendous progress made in the last 10-15 years. I am sure they don’t give Premarin right after hysterectomy anymore and I would hope they are removing the endometriosis during the surgery and not leaving it to grow as they did with me.

There are a whole list of issues with not being able to take hormones. I have tried many substitutes including soy and phytoestrogens and some combinations work better than others. There are some very good holistic treatments and everyone has a different experience.

I hope this has provided some insight. I am not a medical person, I am actually a finance executive and through research and articles from great sources I have learned a lot about endometriosis. There needs to be more awareness and discussion on this, as there are way too many women suffering. Good luck and God Bless!!!

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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Please Folks – Migraine Is NOT A Headache

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We continually make strides in migraine disease and headache disorders education but we still have much work to do. As we succeed to reduce the stigma that surrounds migraine and headache, it’s time for a definitive name for migraine. Once migraine is qualified as a disease, its stigma will be reduced and patients will be taken more seriously and most likely receive an accurate diagnosis sooner. In order to do this we need to use the correct terminology when discussing migraine disease and headache disorders; call migraine a migraine and headache a headache. After all they are two very different things.

A Migraine is not a Headache

The majority of people including many in the medical community continue to use ‘migraine headache‘ when discussing migraine disease. This is problem because migraine is a genetic neurological disease that impacts the entire body; migraine is a primary disorder – a disorder by itself. Headache may be either a primary disorder or secondary disorder, and may be a symptom that is caused from another disorder. Migraine disease is not caused by any other disease or condition. It’s not a symptom of any other disease or condition. To that end, many advocates, myself included become extremely aggravated when we hear the term ‘migraine headache.’

Dr. Oz and the TV ‘Experts’

A recent Dr. Oz show entitled The New Science to Reverse Aging included a segment on how to treat ‘migraine headaches‘ holistically. One of the first problems I notice are they talking about migraines or headaches? Neurologist Dr. Majid Fotuhi (who isn’t a board certified doctor in headache medicine from the United Council of Neurological Subspecialties) was one of the featured guests and talked about the various foods can help reduce ‘migraine headache’ pain. To his credit, Dr. Fotuhi said the most important “weapon against frequent ‘headaches‘ is prevention, prevention, prevention.” I’m fairly certain at this point he means migraines – so why not use the correct term? Dr. Fotuhi goes on to say the best way to prevent ‘headaches‘ is exercise, avoid trigger foods that trigger ‘headaches’ and monitor the foods you eat because certain foods may be able to reduce the frequency of certain types of ‘headaches.‘ Trigger identification and management along with exercise are important pieces of any migraine management plan. For some exercise will trigger a nasty migraine attack.

Terminology Matters

At this point in the show, neither doctor has taken the time to distinguish the difference between migraine disease and headache disorders. Dr. Oz goes on to explain ‘migraine headache’ pain occurs on one side of the head, with nausea and light sensitivity. Many times this is true, but not always. Migraine pain can occur on both sides of the head, be mild to moderate and/or severe to debilitating. An attack can last from 4- 72 hours, sometimes longer, and not everyone will experience nausea.

Dr. Fotuhi reports that foods high in riboflavin which is vitamin B2 can “help reduce certain types of headaches and migraine headache.'” Mushrooms, asparagus, quinoa, milk are indeed high in B2 and it’s used for migraine prevention, but again, some of these foods may be strong migraine triggers for certain people. The doctors continue to interchange migraine and headache.

‘Hormonal headache’ and foods used to prevent them include those rich in magnesium like sweet potatoes, spinach, chard and bananas Dr. Fohuti  goes on to say. But eating these foods may be a strong migraine trigger for some. He continues to report that eating these foods can help reduce ‘menstrual headaches‘ and even suggests taking 450 mgs of magnesium will help prevent ‘hormonal headache. No mention here of checking with your doctor before you take the supplement. According to International Headache Society’s International Classification of Headache Disorders – III, 3rd edition, beta version or ICHD-III 3rd ed., beta version there is no diagnosis of ‘hormonal headache‘ or ‘menstrual headaches‘. However, pure menstrual migraine without aura, menstrually related migraine without aura and non-menstrual migraine without aura can all be found in it. Let me stress again how important correct terminology is.

Dr. Oz then describes tension type headache (a real diagnosis) as a “dull pain, band around the head, and the muscles behind your temples are contracting.” Eating foods with high levels of Coenzyme Q10 such as eggs, broccoli, cauliflower, tuna, organ meats and salmon may be beneficial for tension headache according to Dr. Fohuti – or they can be strong migraines triggers for some people. Dr. Fohuti says to avoid a tension type headache it’s imperative to get eight hours of sleep each night and practice daily relaxation. The truth of the matter is it’s more important to go to bed and wake up at the same time every day, seven days a week, then get various eight hour pockets of sleep.

The doctors went over “cold or flu headache” which doesn’t exist in the ICHD-III 3rd edition, beta version. Dr. Fotuhi said when we have a cold we can become dehydrated, so eating foods that have a high water content include strawberries, pineapples, watermelon and cantaloupe will help with that. Becoming dehydrated is not a good idea at any point for people with migraine and can certainly trigger a migraine attack.

Dr. Fotuhi goes on to say not to take aspirin, ibuprofen and/or acetaminophen more than once a week when you have a ‘headache‘ or you may get medication overuse headache or moh, formerly called rebound headache. In part he is correct, but the reality is if we use pain relievers, whether over-the-counter and/or prescription or migraine abortive medication, more than two to three times a week we may get moh. He never discusses how many ‘headaches‘ are too many or when to see a doctor, intimating that we should be able to handle our head pain with these vitamin rich foods and supplements. This is neither true nor accurate.

In my opinion, when discussing migraine disease prevention and treatment, it would be nice to hear from an expert, someone who is board certified in the related field and really knows what they are talking about.

Resources

“Dr. Oz offers holistic help for headaches and migraines.” Examiner.com, July 22, 2013.

“Foods Solutions to Ease Headache Pain, Part I.” The New Science to Reverse Aging. The Dr. Oz Show. August 15, 2013.

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Are You Vitamin B12 Deficient?

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Chandler Marrs

Most women have a basic understanding of the relationship between vitamin B9 – folate or folic acid and health. Any woman who has ever been pregnant knows that folate deficiencies can cause neural tube defects in the developing fetus. To prevent these complications, we are given prenatal vitamins that contain folic acid. Folic acid is also added to a myriad of food products. Unfortunately, folate or vitamin B9 is only part of the equation. Vitamin B12 (cobalamin) must also be sufficient and maternal vitamin B12 deficiencies also lead to neural tube defects in the developing fetus. Beyond pregnancy, however, vitamin B12 deficiencies in children and adults elicit a host of debilitating and even deadly central nervous system symptoms, sometimes mistaken for multiple sclerosis or other ill-defined and unexplained conditions. As is the case with many apparently complicated conditions, Vitamin B12 is not often tested. Even when tested, the reference ranges are out of date and ill-defined, and so, deficiencies are not recognized easily.

Why Do I Need Vitamin B12?

Vitamin B12 is involved with a staggering number of physiological functions. One of its most important roles is in the formation of red blood cells. Individuals lacking an intrinsic factor to absorb dietary B12 (as in pernicious anemia), have a lower than normal number of red blood cells. Without enough vitamin B12, the red blood cells don’t divide normally and are too large. Vitamin B12 is also involved in the synthesis of the myelin sheaths around nerve fibers. There is a growing relationship between multiple sclerosis, which involves the disintegration of myelin and brain white matter and vitamin B12 deficiency. Finally, B12 is involved in approximately 100 functions including DNA, RNA, hormone, lipid and protein synthesis. Many women have dysregulated hormones connected to vitamin B12 deficiency. With so many core but disparate functions, it is easy to see why vitamin B12 deficiencies can be difficult to diagnose and devastating if left untreated.

How Common is B12 Deficiency?

The data suggest B12 deficiencies in the general population range from 3-6%. However, and this is a big however, individuals over the 60, women, vegetarians and vegans have as high as a 20-25% vitamin B12 deficiency rate. Vitamin B12 is found in the diet in red meat, dairy, fatty fishes and some vegetables. As more people refrain from red meats and dairy, deficiencies in B12 are on the rise. More importantly, because of increased medication use, the physiological demands of pregnancy and hormones, women are particularly susceptible to lower vitamin B12 concentrations. These deficiencies can be compounded as we age and the ability to absorb the vitamin decreases. The most common causes of vitamin B12 deficiency are, diet, pernicious anemia, medication, Hashimoto’s thyroid disease, and genetics (the MTHFR mutation).

Common Medications that Deplete Vitamin B12

Are you Vitamin B12 Deficient?

You might be. Many women are deficient in vitamin B12 and don’t even know it. The symptoms develop gradually over years and are often attributed to other conditions, such as MS, Parkinson’s, and a variety of psychiatric conditions. Research suggests that fully 74% of patients with vitamin B12 deficiency present with neurological symptoms. Here are some of the symptoms of vitamin B12 deficiency.

  • Tremors
  • Numbness and parathesias – tingling and other odd sensations in the extremities (~33%)
  • Gait (walking) and balance disturbances (~12%)
  • Loss of position sense
  • Psychiatric symptoms and cognitive difficulties (~3%)
  • Weight loss (~50%)
  • Low grade fever (~33%)
  • Muscle pain and weakness
  • Fatigue and apathy

Vitamin B12 Testing

Vitamin B12 status is typically assessed via a blood test. Normal ranges can be found here. As noted above, there is evidence to suggest that blood levels may not accurately reflect tissue levels and so many women may show normal blood levels of vitamin B12 but are deficient nonetheless. Other tests that may be of value include, elevated homocysteine levels and/or elevated methylmalonic acide levels. Elevated homocysteine levels are present in a number of conditions, including cardiovascular disease, thyroid disease and chronic migraine. Homocysteine may not be a sensitive indicator of vitamin B12 deficiency. However, it is a good marker of general ill-health. So far, the most accurate test for vitamin B12 is urinary methylmalonic acid testing.

If you think you might be deficient, here is a simple checklist to take before seeing your doctor. It is provided by the Pernicious Anemia Society: Checklist for Vitamin B12 Deficiency.

To learn more about Vitamin B12 Deficiency, watch this video.

 

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