One of the most frustrating things about endometriosis is that you never appear sick; people were always telling me how great I looked – I couldn't possibly be feeling bad. No one could understand that my insides were ravaged by this disease and that I was only a shadow of a person; life continued like that until my excision surgery in July of 2007.
Surgery is obviously the most aggressive fix for your pain but also your only hope for a pain free existence. Without my last surgery I would not be where I am today, as that was the only one done correctly. Unfortunately, to get it done right you need to see an Endometriosis specialist. Although you will find a ton of gynecological surgeons that will perform a laproscopy on you to remove endometriosis, few have the skill, technique and knowledge to do it correctly. They just don't want to admit it and they will tell you it is your lot in life, part of being a woman – blah, blah, blah. I have seen so many doctors that are unqualified idiots. Even the ones I liked were not equipped to handle a disease as complicated as endometriosis. They just don’t understand the nuances behind it. Many don't even recognize endo in all its forms in the body.
The only way to be diagnosed with endometriosis is through laproscopy and most doctors perform this surgery incorrectly. They’ll grab a laser and cauterize, ablate, fulgurate, burn or somehow try to destroy the endo lesions. They certainly destroy the surface of the lesions but they don’t get to the root of the endo implants and the endo just grows back, but as an added bonus after this surgery you will get tons of scar tissue on top of the lesions, which creates even more pain. Thanks laproscopy. You suck.
An endo specialist will excise the lesions cutting out the root of the disease. Most perform LAPEX which is laser excision and they will excise ALL unhealthy and abnormal tissue. Although the laser is just one type of energy that can be used, this surgery will take 3-4x as long as any previous surgeries you've had because they are so thorough and knowledgeable in the disease – this is what they do – excise endo. Most importantly endometriosis will only recur in 10-15% of patients that receive this type of surgery - almost 90% of women will have no recurrence.
Unfortunately, there are only about half a dozen endo specialists in the U.S. and women come from all over the world to see these guys. They are the most kind, caring, understanding, communicative doctors you will ever meet. The first time I talked to the guys in Atlanta I cried because a medical professional finally got it, a man no less.
So, here is a list of docs and their websites, check out the websites. They are obviously more informative than me.
Dr. Redwine – he is in Oregon and was the pioneer of this treatment: http://www.endometriosistreatment.org/
Dr. Cook- he is in Northern California: http://www.pelvicpain.com/
Drs. Albee & Sinervo- they are in Atlanta: http://www.centerforendo.com/
Dr. Robbins- he is in Maine and was my surgeon: http://www.advancedwomenshealthcare.us/
There may be more doctors doing this surgery now, but I would try to stick with one of these guys that I mentioned because they are the most experienced. It may be difficult to come up with the time and money to see these guys but it is well worth the effort. Many do not take insurance although Dr. Robbins did take mine. You may have to fight with your insurance company to cover the claim - but you will now feel well enough to handle this chore and this one surgery is much cheaper for them in the long run.
When I went to Maine to see Dr. Robbins, the day of the surgery I started my period was in excruciatingly mind-boggling pain - I was popping pain killers like candy. I woke up from the 4+ hr surgery with no pain. None! Certainly, I was sore after the surgery, and I took pain killers for about a week as prescribed but I have not taken any since. This is from a girl who got 30 pills of vicodin every month like clockwork for years on end, it was nothing short of amazing. Now I am totally drug free – if you told me that 3 years ago, I would never have believed it.
Although excision surgery will relieve your pain from endo you may still have pain. This is a result from the endo, because we cannot be in chronic pain for years on end without it affecting our bodies in other ways. But after dealing with endo this will be a walk in the park and I overcame it easily within 6 months of the surgery.
Keep in mind that the nutritional and diet advice listed are the methods I followed after surgery. I firmly believe this helped immeasurably. For instance, if I eat wheat (before the Celiac diagnosis) I do have endo-like pains: cramping, back pain, the feeling like your uterus is going to fall out of your vagina, and a crushing fatigue.
Surgery is obviously a huge decision and one that shouldn’t be undertaken lightly. Unfortunately (or fortunately?) for me the decision was one of the easiest I can remember. I would do it again 100 times out of a 100, my only regret is not doing it sooner.
Wednesday, November 25, 2009
Immediate Improvements for Endo
I’ve been informally helping a handful of women navigating their way through endo. Below is the basic initial e-mail I send them with helpful hints. Enjoy! (I mean enjoy in a mildly sarcastic way of course. Endo is really annoying.)
I have suffered from endometrosis for over 16 years but have been pain free for about 2.5 years now. You will never be cured from endo but you can recover from it and be free from the pain.
First some history about me: I have had a total of 4 surgeries for endo, with only the last one being successful. My doctors swore the pain was all in my head because they absolutely removed all the endo during surgery. Yet my symptoms continued, usually about 3 months after a surgery: intense widespread pelvic pain, lower back pain (this is from endo on the uterosacaral ligaments, which is very common), bladder pain (intersistial cystitis or IC is known as endo's evil twin), ovarian pain (ovaries tacked to the sidewall), nausea, headaches, depression, constant fatigue. I was on every drug imaginable: continuous birth control pills for years on end, Depo-Lupron, depo-sub Q, danocrine, more pain killers than I can count, anti-depressants because chronic pain causes depression. I am sure this sounds familiar?
Okay. So I am going to start with the easiest changes that you can make today.
DIET
Quit Wheat. Do not eat anything with wheat in it and you may notice a lot less pain. 80% of women with endo are allergic to wheat. There are a lot of studies being done on this but the prevailing thought is that it is because of two different types of hormones that were introduced into wheat back in the 70's in order to make the heads more prolific and the stalks stronger- wheat was actually the very first genetically engineered food. When endo-plagued women consume these hormones, they mimic estrogen in our bodies. Endo is often characterized as a disease of excess estrogen so we want to reduce it as much as possible. Along these lines you should also not eat soy as it is overloaded with pythoestrogens and neurotoxins (the only soy products anyone should consume is fermented soy but that thread is for another time). Unfortunately, a lot of chemicals and pesticides mimic estrogen in the human body too so you will also want to eat organic as much as possible.
Quit Milk, Dairy and Beef. Cow products have something called type 2 prostaglandins, which is bad for your body because it causes inflammation. When those endometriosis lesions are inflamed (like when you get your period) it causes a lot of pain. So if you eat less of these products, you should have less pain and inflammation in your body.
Boost your Immune System. Historically I would catch every little bug that went around and was always sick. I definitely spent more time being sick than healthy- this is very common in women with endo. Although no one knows what causes endo (and there is a lot of controversy surrounding what exactly it is), many think that it is some type of auto-immune disease. So if you boost up your immune system you will start to feel better. Also, much of this will improve the pain pathways in your body
Start Taking Supplements and Vitamins:
I have suffered from endometrosis for over 16 years but have been pain free for about 2.5 years now. You will never be cured from endo but you can recover from it and be free from the pain.
First some history about me: I have had a total of 4 surgeries for endo, with only the last one being successful. My doctors swore the pain was all in my head because they absolutely removed all the endo during surgery. Yet my symptoms continued, usually about 3 months after a surgery: intense widespread pelvic pain, lower back pain (this is from endo on the uterosacaral ligaments, which is very common), bladder pain (intersistial cystitis or IC is known as endo's evil twin), ovarian pain (ovaries tacked to the sidewall), nausea, headaches, depression, constant fatigue. I was on every drug imaginable: continuous birth control pills for years on end, Depo-Lupron, depo-sub Q, danocrine, more pain killers than I can count, anti-depressants because chronic pain causes depression. I am sure this sounds familiar?
Okay. So I am going to start with the easiest changes that you can make today.
DIET
Quit Wheat. Do not eat anything with wheat in it and you may notice a lot less pain. 80% of women with endo are allergic to wheat. There are a lot of studies being done on this but the prevailing thought is that it is because of two different types of hormones that were introduced into wheat back in the 70's in order to make the heads more prolific and the stalks stronger- wheat was actually the very first genetically engineered food. When endo-plagued women consume these hormones, they mimic estrogen in our bodies. Endo is often characterized as a disease of excess estrogen so we want to reduce it as much as possible. Along these lines you should also not eat soy as it is overloaded with pythoestrogens and neurotoxins (the only soy products anyone should consume is fermented soy but that thread is for another time). Unfortunately, a lot of chemicals and pesticides mimic estrogen in the human body too so you will also want to eat organic as much as possible.
Quit Milk, Dairy and Beef. Cow products have something called type 2 prostaglandins, which is bad for your body because it causes inflammation. When those endometriosis lesions are inflamed (like when you get your period) it causes a lot of pain. So if you eat less of these products, you should have less pain and inflammation in your body.
Boost your Immune System. Historically I would catch every little bug that went around and was always sick. I definitely spent more time being sick than healthy- this is very common in women with endo. Although no one knows what causes endo (and there is a lot of controversy surrounding what exactly it is), many think that it is some type of auto-immune disease. So if you boost up your immune system you will start to feel better. Also, much of this will improve the pain pathways in your body
Start Taking Supplements and Vitamins:
- Ester C (or vitamin C- I personally couldn't take vitamin C when I had endo bc it aggravated my bladder due to the endo lesions present there)
- Vitamin B Complex
- Fish Oil and/or evening primrose (cold pressed cis-fatty acids reduce inflammation and have been documented to reduce the size of endometriotic implants)
- Bee Pollen (for energy, if necessary)
- Calcium/Magnesium
- Chelated Zinc
- Selenium
- Vitamins A & D
- Vitamin E
- Vitamin K
I know it's a lot but you will only do this for a brief time until you can get your nutrition on track then you will want to try and get these vitamins and minerals from food sources only and not pills. But its important to jump start this process bc many of us with endo are basically malnourished- you will notice a big difference once you start.
Eat Healthy!! Sugary foods and processed foods (stripped of their nutrients) will make you feel like shit, you want to try and eat natural whole foods as much as possible. (Much, much more on this in a later post.)
For more information you should read Endometriosis: A Key to Healing and Fertility Through Nutrition by Dian Shepperson Mills and Micheal Vernon.
EXERCISE
The great paradox - the endorphins from exercise will help the most with your pain but a lot of women find it impossible to exercise because of the pain. In that case, try walking and/or yoga. Yoga had been the most helpful for me by far, although I was in such a crisis before my last surgery I couldn't do the standing poses.
(Kind Of) Brief History
In July, 2007 I successfully overcame endometriosis after a 10+ year battle. For the 10+ years (shoot, I just realized it’s actually 18 years) my life pretty much sucked. For those that don’t know, endometriosis is a painful gynecological condition that affects 1 out of every 10 women. It’s also an endocrine and auto-immune disorder causing systemic illness throughout the body. Basically it’s a fucking nightmare.
Nutrition is a key component in managing the disease; however, the gold standard is excision surgery from an endometriosis excision specialist. Unfortunately, there are only a handful of excision specialists in the country that perform this procedure correctly. (More on this in the endo surgery post). Back to nutrition: Nutritionally, there are two food groups that should be cut out immediately and permanently which will result in significant pain relief. Wheat should be eliminated from the diet as 80% of women with endo are allergic to wheat. Bovine dairy and meat products should also be eliminated due to the type 2 prostaglandins that cause inflammation throughout the body and exacerbate the pain of endometriosis. (Complete nutritional protocol post for endo will be coming soon)
But wait! There’s more!
Many women with endometriosis also suffer from Candida complex or candidiasis in which the naturally occurring yeast, Candida albicans, which resides in all humans has proliferated in the intestinal track and offset the balance of natural intestinal flora. Once Candida gets a foothold, it turns from yeast to a fungus to the mold form which sends out rhizomes that infiltrate the body’s organs causing systemic illness. (This just sounds gross.) Symptoms of candidiasis include headaches, myalgia, chronic fatigue; GI disturbances including Leaky Gut Syndrome (sounds even more gross), food allergies, skin disorders, immune disorders, depression and menstrual irregularities. In order to overcome Candida, the organism must be starved by removing its food source: sugar. It also needs to be attacked using anti-fungal therapies. This blog will focus on both modalities.
We’re not done yet!
I’ve also developed full blown Celiac disease in the past year most likely as a direct result of the Candida which causes food allergies and leaky gut syndrome. Celiac disease is an auto-immune disorder in which the body cannot process gluten a protein contained in wheat, rye, barley and sometimes oats. Celiac sufferers often have GI issues and signs of systemic illness if they ingest gluten so this blog will also focus on a gluten free lifestyle (also a necessary component in treating Candida).
So I’m going to cover some fairly common but hidden, and yes, disgusting issues. I work in clinical trials for a living, so my writing tends to be a little….dry. My brother is trying to get me to throw in some more personal items and a little color. He’s fairly annoying, but I’ll try to do that in future posts.
Nutrition is a key component in managing the disease; however, the gold standard is excision surgery from an endometriosis excision specialist. Unfortunately, there are only a handful of excision specialists in the country that perform this procedure correctly. (More on this in the endo surgery post). Back to nutrition: Nutritionally, there are two food groups that should be cut out immediately and permanently which will result in significant pain relief. Wheat should be eliminated from the diet as 80% of women with endo are allergic to wheat. Bovine dairy and meat products should also be eliminated due to the type 2 prostaglandins that cause inflammation throughout the body and exacerbate the pain of endometriosis. (Complete nutritional protocol post for endo will be coming soon)
But wait! There’s more!
Many women with endometriosis also suffer from Candida complex or candidiasis in which the naturally occurring yeast, Candida albicans, which resides in all humans has proliferated in the intestinal track and offset the balance of natural intestinal flora. Once Candida gets a foothold, it turns from yeast to a fungus to the mold form which sends out rhizomes that infiltrate the body’s organs causing systemic illness. (This just sounds gross.) Symptoms of candidiasis include headaches, myalgia, chronic fatigue; GI disturbances including Leaky Gut Syndrome (sounds even more gross), food allergies, skin disorders, immune disorders, depression and menstrual irregularities. In order to overcome Candida, the organism must be starved by removing its food source: sugar. It also needs to be attacked using anti-fungal therapies. This blog will focus on both modalities.
We’re not done yet!
I’ve also developed full blown Celiac disease in the past year most likely as a direct result of the Candida which causes food allergies and leaky gut syndrome. Celiac disease is an auto-immune disorder in which the body cannot process gluten a protein contained in wheat, rye, barley and sometimes oats. Celiac sufferers often have GI issues and signs of systemic illness if they ingest gluten so this blog will also focus on a gluten free lifestyle (also a necessary component in treating Candida).
So I’m going to cover some fairly common but hidden, and yes, disgusting issues. I work in clinical trials for a living, so my writing tends to be a little….dry. My brother is trying to get me to throw in some more personal items and a little color. He’s fairly annoying, but I’ll try to do that in future posts.
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