“THE LETTER FROM SURVIVORS” LIVING WITH ENDOMETRIOSIS

*original letter by Heather Guidone*

THIS LETTER IS FOR ALL OF US

Dear Parents, Partners, Friends, Families, Co-Workers, Employers & Doctors:

We have spent the last years of our lives apologizing for being stricken with a disease we did nothing to contract, and we can do it no longer. We are not responsible for not living up to your expectations the way you think we should. What you seem to fail to realize, is that you are just as much a part of the cycle of the disease as we are, because you are not getting the whole of our person and capabilities.

We are not anti-social, dramatic, pessimistic, lazy, too tired, too crazy and we do not make the pain up in our heads.

WE HAVE ENDOMETRIOSIS.

We know that we look healthy on the outside, and that is sometimes harder to accept than if we exhibit the disease in our every day appearances. What you don’t see is what our organs look like on the inside, and you don’t see what living with it has done to our mental state.

When we call in sick, it’s not because we need a mental health day or to “go shopping”. It’s because we can’t get out of bed from the excrutiating pelvic pain, extreme fatigue, nausea, low grade fever, sharp intestinal pains and splitting headaches. Do you think we like letting our careers pass us by? Would it be easier for you to understand if we said we had cancer and looked the part?

Most, if not all women with Endometriosis (accompanied with the debilitating pain) also suffer from Chronic Fatigue Syndrome, severe digestive problems, infertility, allergies, a hormone imbalance, anxiety and depression. Did you know Endo is also believed to be an Autoimmune Deficiency Disease? Makes since now since we are easily susceptible to colds, flu’s, viruses. Some of these symptoms can be cyclical, meaning we can feel great for a few weeks out of the month but then are in agony the rest of the month. Some of these symptoms can be continuous

And to top all that off we have a special dairy-free, sugar-free, gluten-free, soy-free, caffeine-free, alcohol-free, red meat-free, pork-free diet we must adhere to. This surely makes us the life of the party! Imagine such a strict diet...we can never just grab something quick to eat, eat at the latest restaurants, or even take road trips and eat along the way…

When we get emotional and cry at the seemingly silliest things, or get angry for even less reason, it’s not because we are “flaky females”. It is because Endo is a hormone imbalance. It’s because we are taking drug/hormone therapies to combat the disease, or perhaps because we have come close to the breaking point after dealing day in and day out with the pain for which there is no defined cause or absolute cure.

When we can’t have intimate relations with our partners, it is not because we don’t love you or not want to. It’s because we can’t. It hurts too much. And we aren’t feeling very attractive right now.

When you as our parents can’t understand that since you are healthy, we should be but aren’t – try harder. We don’t understand it either. We need your support more than anyone’s.

When we can’t go to family gatherings or accept social invitations, it’s not because we don’t wish to share in your fun. It’s because we feel like pariahs. You are all having such a nice time with your children and loved ones – we can’t remember the last time we did that, or at least the last time pain-free. We can’t have a nice time with our children because most of us can’t have them. Maybe we were robbed of that chance before we were old enough to even care about having them in the first place. Do you think we need to be reminded of our battle with infertility by watching you and your babies? Or for those of us who were blessed enough to be able to conceive, do you think we want a constant reminder that we never feel well enough to spend enough quality time with our children, or worse – that we might of passed this disease down through our blood into our daughters?

When you married us you didn’t know that we meant the “in sickness and in health” part literally, did you? We bet you were counting on at least a 50/50 split of that combination, rather than the 90/10 ratio you got. You are our caretakers, the ones who drive us to and from our doctors, countless surgeries, and emergency room visits. You are the ones who hear us crying in the night and see us break down during the day. You are the ones who wait on us hand and foot after surgery. You are the ones that go for months on end without sharing our beds with us. You are the ones that deal with our infertility right along with us. We strike out at you when we are hurting and angry, and you take it in stride. You are perhaps bigger victims of endometriosis than we ever are. You are appreciated more than words can ever say.

DON’T GIVE UP ON US NOW.

To medical professionals, we are coming to you for help. We are asking you to do the job you were trained to do and ease our suffering. We do not need you to tell us that we are imagining the excruciating pain we live in or worse yet, that it’s “normal for women to hurt”. Keep up with your research, find the cause of this disease and better yet, find a cure! Stop taking the easy way out and drugging us to oblivion so that we will quiet down. We are not going to quiet down. We want answers and it is your job to provide them. You were the ones that took the oath to heal, why do we have to try to do your job? Do you understand what it means when we tell you that we literally can no longer live a normal life and care for ourselves and our families? Are you not up to the challenge to find the answers?

To those we have called friends all our lives, why have you deserted us when we needed your compassion and understanding the most? Do you see the selfishness of your actions? When we can’t “hang out” and get together with you, it’s not because we don’t like you or we don’t care – it’s because we are no longer capable of enjoying healthy leisure time. Our minds are consumed with our next doctor’s appointment, what surgery we are going to have next, and why we feel so sick all the time. This is not about us. Please try to remember what the term “friend” means. Please remember that friendship is a two-way street. If we don’t keep calling or reaching out to you ,we probably wouldn’t be friends anymore. Why don’t you reach out to us?

Try to walk one minute in our shoes. We have fought a war for the better part of our years. We are faced daily with physical pain we can’t understand and mental anguish we can barely cope with. We have to face a society which doesn’t even know the word Endometriosis, much less the ramifications of living with the disease. We have to face uneducated and unsympathetic doctors who tell us things like, “it’s all in your head”, and “have a hysterectomy, it will cure you”, and “get pregnant, it will also cure you”, (when we know that it won’t and we have been dealing with infertility for the last however many years). We in our 20s and 30s do not wish to give up our organs just yet. That would be like giving in to the Endo.

CAN’T YOU SEE THAT?

We have to fight to get medical treatment the insurance companies don’t deem necessary, or worse, we deplete our savings because we aren’t able to obtain proper care unless we pay for it ourselves. We have to have surgery after surgery and subject ourselves to horrific medications just to be able to get out of bed in the morning. This is not a conscious choice we made, it was the hand we were dealt. It is enough of a war we wage just to try and live with some modicum of normalcy don’t make it harder on us by not seeing the reason why.

ENDOMETRIOSIS IS A SERIOUS CHRONIC DISEASE THAT AFFECTS ALL OF US.

Take the time to learn about it and understand why we are the way we are. If you can do that, and you can join us in the battle for a cure, then we can one day return to our old selves and live a normal, productive life. We can have a healthy relationship with our loved ones. We can contribute meaningfully to our work environments. We can stop taking the pain killers that numb our suffering to a degree and become part of the living again.

Help us get rid of the xenoestrogens in our make up, lotion and beauty products!! Xenoestrogen feeds our disease.

Please don’t judge us and declare that we are all the things we are not – until you have lived with this disease ravaging your mind and body, you cannot speak on it. We will not hide this any longer! This is nothing to be embarrassed about. We will shout this to all that will listen! This affects us all!

Whatever doesn’t kill us makes us stronger, someone once said. While Endometriosis may not kill our physical body, it kills our spirit. It kills every hope and dream we ever had of doing the things that make us happy. All of us are out here searching for a cure to put an end to the disease….we are asking you to take part in that battle and work with us on doing so. Wouldn’t it be nice to have back the daughter, wife, sister, friend, or family member you once knew?

THINK ABOUT IT.

______________

I added more of my own personal words so my family and friends could better relate but the original Letter was authored in 1997 by Heather Guidone<--- MY MENTOR This letter has been distributed around the world countless times and has reached nearly a million unique readers. It has been translated into other languages; shared extensively in patient communities; read to the crowd on the steps of the Lincoln Memorial in Washington, DC at the first annual EndoWalk for Awareness; been given to families, physicians, caregivers, spouses, friends and government officials; and it is currently used by advocacy organizations in the US, Europe and Australia to facilitate their efforts at raising awareness and validating those who live with the disease. The Letter is intended to give insight and understanding as to what it is like to live with a chronic, painful illness that is under-treated, under-diagnosed and widely misunderstood – and perhaps, even, ignored - by society at large. More importantly, this Letter is for all the Endosisters around the world who hold their heads high every day, *in spite of* Endometriosis.

Endometriosis Facts & Statistics

Most women with endometriosis suffer pain—and present symptoms—up to a full decade prior to diagnosis.

The average woman is 27 when she is first diagnosed with endometriosis.

Endometriosis is one of the top three causes of female infertility. While it is one of the most treatable it remains the least treated.

Abdominal and bowel symptoms linked to endometriosis are commonly misdiagnosed as Irritable Bowel Syndrome (IBS).

Endometriosis is often misdiagnosed as Pelvic Congestion or Pelvic Inflammatory Disease (PID).

Many infertile women with endometriosis experienced debilitating painful periods as teenagers and beyond but were misdiagnosed.

Many women suffer silently because they feel that their pain, especially pain associated with sexual intercourse, is just too personal to discuss with their gynecologist. This is more common in some cultures than others.

Most cases of endometriosis can be cured with Laparoscopic Excision Surgery. Hysterectomy should only ever be considered as a last resort. There is no oral medication to cure endometriosis.

The Promise of Problems

Today's Truth:
"You intended to harm me, but God intended it for good." Genesis 50:20

Friend To Friend
If you are like me, you prefer days when the sun is shining, the sky is blue, and not a cloud in sight. Problems tend to irritate me because they make me realize just how frail I am as a human. But I have come to realize that every problem points to a promise.

Promise of direction
God uses problems to show us the way. We would walk through the wrong door if He didn't close it. "Sometimes it takes a painful situation to make us change our ways." Proverbs 20:30

Promise of correction
God uses problems to correct us. I have come to realize that some lessons can only be learned in the darkness, through pain and failure. "It was the best thing that could have happened to me, for it taught me to pay attention to your laws." Psalm 119:71-72

Promise of protection
A problem can be a blessing in disguise if it keeps you from being hurt by something more serious."You intended to harm me, but God intended it for good." Genesis 50:20

Promise of perfection
Problems, when responded to correctly, are character builders. A female motivation speaker recently spoke for a women's conference that used the theme of "Problems into Pearls." Strands of pearls were everywhere - the center of each table, on the podium from which She spoke, draped across tables - and many of the ladies wore pearls that day. When the worship leader welcomed her, she said, "We have to get you some pearls!" Digging in her purse, she produced the most beautiful pearl necklace and placed it around her neck. As the day went on, She spoke several times, counseled and prayed with numerous women and tried to meet as many women as possible. When everyone had left, the woman came to retrieve her pearl necklace. The speaker was embarrassed. She had worked up quite a sweat with all of that hugging, laughing, talking. She brushed her apology aside and said, "Sweat is good for pearls. It helps them keep their luster."

"We can rejoice when we run into problems ... they help us learn to be patient. And patience develops strength of character in us and helps us trust God more each time we use it until finally our hope and faith are strong and steady." Romans 5:3-4

God is at work in and around you. You may not see His hand, hear His voice or even understand His process, but you can rest assured that you can trust His heart. Remember, every problem points to a promise.


• What problem are you facing right now? Put it into words and record it in your journal.
• Pray, surrendering that problem to God and ask Him for the promise it holds.
• What good can come out of the problem you are facing?
• What scripture promise do you claim because of this problem?
• Write that promise on a 3 x 5 card and tuck it in your purse. When the going gets tough, pull out that card and read the verse aloud as a statement of your faith in your Problem-Solving God!

Women, Food and God author Geneen Roth on Oprah

I’m so glad I had this episode of Oprah on my DVR! What really touched me is the part where Oprah and Geneen Roth, author of “Women Food and God,” talked about looking into the mirror, deep into your eyes, down into your soul and asking yourself, “What do you see?” Looking past your fat, all of your imperfections, all your blemishes and really asking yourself that question.
Have you done that before? What was the answer?

The philosophy the book seems to be promoting is that when we have no inner connection with our creator (or maker, or God, or whatever you want to call it), we tend to suffocate our feelings with food or some other addiction.

When we eat when we are NOT hungry, we are suffocating something deep inside of ourselves. It could be past pain or emotions, it could be insecurities, it could be anything.

We have to stop hating and beating ourselves up. We HAVE to be KIND to OURSELVES and others.

Here’s one of the quotes Oprah read from the book:
“Can you remember a time perhaps when you were very young, when life as it was – just the fact that it was early morning or any old day in summer – was enough?
When you were enough not because of what you looked like or what you did, but just because everything was the way it was. What if you could live that way now, and what if your relationship to food was that doorway?”

I can remember a time such as this. A time when I felt safe, loved and food didn’t matter, my appearance didn't matter, my messy hair didn't matter, my blemishes didn't matter. A time when I was unconditionally happy because that’s what I was and that was simply the way things were. My heart wells when I think of that time in my life as a young child.

I usedto have so much fun doing the simpler things. Like running around bare foot, letting rain land in my mouth, the softness of my moms arms while she hugged me, washing dishes... instead of worrying about what food I’d be eating or how I looked to others.

Padma Lakshmi bring light to Endometriosis on the Today Show

Padma Lakshmi bring light to Endometriosis on the Today Show

Visit msnbc.com for breaking news, world news, and news about the economy

Endometriosis Diet

Endometriosis Diet
While there are various medical treatments for endometriosis available, as well as surgical ones, many women have found that changing their diet can help to effectively manage their symptoms. In some cases, dietary changes may be enough to help you live your life symptom free.

Why Change the Diet?

Making changes to your diet when you have endometriosis is not just about easing the signs of endometriosis. Following a healthier diet and eliminating those foods that aggravate your symptoms will not only help to reduce your estrogen levels, but it will also contribute to normalizing your hormone levels and it can even stabilize your emotions.
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Endometriosis 101
What is Endometriosis? Learn the Causes, Risks & Treatment Options. Lifescript.com/Endometriosis
Similar to the candida diet, which helps people dealing with recurrent vaginal thrush infections, an endometriosis diet aims to eliminate those foods that encourage your symptoms while increasing those foods that lower your prostaglandins. Prostaglandins, which are stimulated by estrogen, are the hormones responsible for those painful cramps you feel during menstruation as well as possibly menorrhagia, nausea, vomiting and diarrhoea that you may also experience.


Prostaglandins actually break down into three different forms: prostaglandin E1 (PGE1); prostaglandin E2 (PGE2); and prostaglandin F2a (PGF2a). While PGE1 can help alleviate endometriosis symptoms, PGE2 contributes to menorrhagia and PGF2a to vomiting, nausea and diarrhoea. Together, PGE2 and PGF2a produce the immense period pain women with endometriosis must deal with. However, by changing your diet, it is possible to block PGE2 and PGF2a while encouraging the production of PGE1 to help your symptoms.

Fibre

We all know that diets high in fibre are helpful to digestion and keeping the bowels working. However, fibre may also reduce the levels of estrogen circulating in your system. Some good sources of fibre include:
Whole grains
Fruits and vegetables
Beans
Brown Rice
Omega-3s

There are many benefits to consuming omega-3 fatty acids. In addition to helping your over physical and mental health, though, omega-3s have also been found to promote the production of PGE1. Some good sources of omega-3s include:
Flaxseeds and oil
Pumpkin seeds
Walnuts
Oily fish (i.e. salmon, sardines, herring, mackerel)
Tuna
Sunflower oil
Evening primrose oil
Fortified foods
Dairy

While dairy is an important part of a balanced diet, as dairy is an excellent source of calcium, women with endometriosis may benefit from minimizing their consumption of dairy products. Dairy can contribute to stimulating the production of prostaglandins, thereby worsening your symptoms. If you are planning to eliminate dairy from your diet, it is important to find other sources of calcium in order to meet your daily intake requirement of 1000mg/day. Alternative sources of calcium can include:
Dark green vegetables (i.e. spinach, broccoli, bok choy and kale)
Calcium fortified tofu
Sesame seeds
Almonds
Figs
Seaweed
Salmon and sardines
Tahini
Other food items fortified with calcium, like orange juice
Meat

Animal meat, though a good source of protein, is another food source that can aggravate your symptoms. In particular, meat, as well as lard which comes from animal fat, is known to promote PGF2a, so reducing your consumption may be helpful. To ensure you still have adequate protein intake, though, try incorporating some of these protein-rich foods into your diet:
Beans
Tofu
Tempeh
Nuts (i.e. pecans, walnuts, cashews, pistachios, chestnuts)
Seeds (i.e. sunflower, pumpkin, sesame, flaxseeds)
Peanuts
Other Foods to Avoid

In general, there are a number of foods that women with endometriosis are advised to avoid.
Caffeine (i.e. coffee, tea)
Alcohol
Chocolate
Saturated fats
Butter and margarine
Drinks and foods with a high sugar content
Refined carbohydrates (i.e. pasta, bread, cakes, pastries)
Fried foods
Furthermore, while soy products are often touted as a great alternative to meat, they may not be ideal for those with endometriosis, who are sensitive to estrogen. Some of the isoflavones found in non-fermented soy products have been known to disrupt and interfere with certain tissues, especially in women sensitive to estrogen. Limiting your consumption of soy products that are not fermented to two to three times a week or less is best.

Also, keep in mind that every woman is different. It is very likely that you may have specific foods, like tomatoes or hot drinks, that aggravate your symptoms. Paying attention to how your body reacts to certain foods will help you understand better which foods to eliminate during menstruation.

Finally, in order for women to have healthy diets, it may be necessary to use supplements to make sure you are getting all the necessary vitamins and minerals. If your periods are exceptionally long and/or heavy, you may want to discuss with your doctor using iron supplements to guard against iron deficiency or anemia.

The endometriosis diet should diminish your endometriosis symptoms; and for those looking to lose weight, changing your eating habits to minimize endometriosis symptoms should minimize your waistline as well, since maintaining a healthy balance and cutting out bad-for-you foods is central to both!

Welp I have Endometriosis, Stage IV

The diet DID help a little. I think the disease (weird typing that, I have a disease)had progrssed too much from 15+ years of other doctors NOT listening to me, that diet would ony help alleviate a little. I was still having incredibly debilitating pain. I finally had Surgery April 23, 2010 and yup, I have Stage IV Endometriosis....The Doctor proceeded to burn on the "bad" tissue away. He said I should be back to normal in a couple of days. Uhh it's been an entire week and i'm NOT back to normal.
_______________________




Natural Treatments for Endometriosis:
Severe Endo should def first be treated with surgery and then the following:

1) Reduce Chemical Intake
Although earlier studies in women were conflicting, there is increasing evidence that chronic exposure to the environmental chemicals dioxins and polychlorinated biphenyls (PCBs) is associated with an increased prevalence and severity of endometriosis.

One way to reduce intake of these chemicals is to cut back on animal fat, especially high-fat dairy, red meat, and fish. Dioxin and PCBs both accumulate in animal fat, and it is our main route of exposure.

Interestingly, studies on diet and endometriosis also support this link. For example, an Italian study examined data from 504 women with endometriosis and found an increased risk with a high intake of red meat and ham. Fresh fruit and vegetables were associated with a reduction in risk.

2) Vegetables and Flaxseeds
There is evidence that a group of plant chemicals called flavones can inhibit aromatase, the enzyme that converts androgens to estrogens. Good food sources of flavones are celery and parsley.

Broccoli, cauliflower, cabbage, kale, Brussels sprouts, and bok choy, contain compounds called indoles, which appear to improve estrogen metabolism.

Flaxseeds are high in lignans and fiber, which have been found to be beneficial for estrogen-related conditions.

3) Progesterone Cream
Alternative practitioners sometimes recommend progesterone cream. Progesterone is thought to slow the growth of abnormal endometrial tissue. Although it's not considered a cure, it may improve symptoms such as pain during menstrual periods and pelvic pain. There haven't been any studies on progesterone cream for endometriosis, so we don't know for certain about it's effectiveness or safety.

Progesterone cream is derived from either soy or Mexican wild yam. A molecule called diosgenin is extracted in a lab and converted to a molecule that's exactly like human progesterone and added to back to the cream. Some companies sell wild yam cream, but unless it has been converted in a lab it is useless, because the body can't convert wild yam to progesterone on its own.

Natural progesterone cream is applied to the wrists, inner arms, inner thighs, or upper chest at a dose and schedule that should be recommended by a professional. It's important to be supervised and to have progesterone levels monitored on lab tests, because too much progesterone can cause such side effects as mood changes, depression, water retention, weight gain, and absent or abnormal menstrual bleeding.

Natural progesterone cream is available from a compounding pharmacy (the website www.iacprx.org has listings) or at regular drug stores.

4) Omega-3 Fatty Acids
Omega-3 fatty acids are found in fish such as salmon, mackerel, sardines, and anchovies. They are also available in fish oil capsules, which may be the preferable form because good brands contain minimal amounts of PCBs and dioxins.

Several studies have found that omega-3 fatty acids may be beneficial for people with endometriosis. For example, an animal study by the University of Western Ontario found that fish oil containing two specific compounds, EPA and DHA, can relieve pain by decreasing levels of an inflammatory chemical called prostaglandin E2. Researchers also found that fish oil could slow the growth of endometrial tissue.

5) Stress Reduction
Cortisol is a hormone involved in the stress response but is also needed to make other hormones such as progesterone. Prolonged stress can lead to elevations in cortisol, which alternative practitioners say may decrease the available progesterone and result in a hormonal imbalance.

One study involving 49 women found that cortisol levels were significantly higher in women with advanced endometriosis compared to women who didn't have this condition.

Herbs and nutrients that alternative practitioners commonly recommend for stress reduction include:

* Ashwaghandha
* B vitamins
* Vitamin C
* Zinc
* Magnesium

Other stress reduction methods include:

* Relaxation Response
* Mindfulness Meditation
* Diaphragmatic Breathing

6) Hydrotherapy
A contrast sitz bath is often recommended by alternative practitioners for endometriosis. It is a home remedy and has not been studied.

A contrast sitz bath involves sitting in a small basin or tub filled with hot water for three minutes, then getting up and sitting in another basin filled with cool water for one minute. The hot water-cold water cycle is repeated another 3 times. It is not usually done during menstruation.

7) Ginger Tea
Ginger tea may relieve the nausea that can occur with endometriosis.

8) Bacterial or yeast overgrowth
William Crook, author of The Yeast Connection believed there was a strong connection between endometriosis and candida yeast overgrowth.

A study by the Woman's Hospital of Texas examined 50 women with endometriosis and found that 40 women showed bacterial overgrowth. After eight weeks of treatment, here was a significant reduction in symptoms.