"Jeanne's Endo Blog": Guest Blog - Roberta's Twenty Plus Year Rollercoaster... Roberta's Experiences Following Hysterectomy...

The following Guest Blog post was written by my close friend Roberta. (She's camera shy so there won't be a picture for this Guest Blog). I met her through my local endometriosis support group. (For that group - which I started in 2001 - Roberta was Co-Leader with me for part of the time). I have learned an enormous amount from Roberta. Her generosity with sharing her wisdom and introducing me to new modalities is unmatched. I treasure her friendship and I am honored that she agreed to write a Guest Blog post. The story below is an excellent summary of her difficult journey. There is so much more that has gone on behind-the-scenes. Roberta is one of the strongest, most thoughtful, resilient, caring people I know. I know her story will help many. Roberta has training in everything from Reiki to colon hydrotherapy to homeopathy. She works harder than anyone I know to be well. She follows rigid diets (not weight-loss diets... I mean diets for health reasons) that I do not envy. She does physical therapy exercises and Chi Nei Tsang at home. She puts into practice what she learns. She doesn't just talk the talk. She walks the walk. Roberta is truly one of the most thoughtful people I have ever met. She uses every ounce of adversity she has been through to help others by sharing her experiences. She is one very special woman!

My 20+ year ride on a Roller Coaster - by Roberta

At the age of 30 I was a healthy, vibrant, energetic and happy young woman. I had just gotten married for the second time and looking forward to adding to “our” family. I thank God that I was blessed with a daughter from my previous marriage.

I had never experienced many problems with my period. I had at times had some discomfort but it never lasted long nor did it incapacitate me in anyway. That was soon to change. All at once my pains were so intense that I was vomiting and having diarrhea every month. The pains would last from ovulation until several days into my period. Finally after many months and doctors and multiple tests my gynecologist suggested that I have a laparoscopy. I was undiagnosed for 1 more year. The doctor who did the procedure didn’t bother to tell me that I had endometriosis.

I quickly fired that doctor and found a doctor in my area that “specialized” in endometriosis. Confirming the diagnosis he prescribed Danocrine. Unfortunately, Danocrine can only be used for short periods of time before women develop masculine side-effects. I took Danocrine for 1 year had another laparoscopy and nothing had changed. Upon stopping the Danocrine, the pains came back with a vengeance. Two weeks out of every month I was very ill. At 34 I felt I couldn’t take the pain and sickness any longer. I decided to get the complete hysterectomy-after all isn’t that the answer to endometriosis?

I felt fine, I thought. I was put on synthetic hormones immediately and just wanted to go on with my life. Within a year I was having significant muscle pains throughout my body. Additional testing diagnosed me with fibromyalgia at 36. I continued to work part time and take care of my family and home the best I could. Then at 39 my doctor decided that my blood level estrogens were too low so he prescribed a higher dose. Within 2 weeks the estrogen killed my gall bladder so I had my gall bladder removed. I didn’t realize that gall-bladder removal would be so problematic for my digestive system.

At 44 - I have now been diagnosed with leaky gut syndrome. Anything I ate caused me great distress. It took one year to get a food allergy test that concluded I was reactive to almost every type of food. I had lost 30 lbs. in 4 months and looked very ill. After a year of struggling with the leaky gut syndrome I developed chronic fatigue syndrome. The chronic fatigue produced severe, constant flu like symptoms lasting for months.

At 46 - I started the journey of severe hormone imbalance. I developed chronic pelvic pain and for three months I felt like I was delivering a baby. My doctor prescribed a very special type of physical therapy-called a pelvic pain specialist, which provided some relief. My doctor then suggested bio-identical hormones -I got much worse. Finally my husband suggested that I stop the hormones completely-I did. While I felt better initially I still was in need of something else. At just barely 48, I went to my naturopath and was prescribed a homeopathic that helped immensely. It took only 2 months time to get my chronic pelvic pain under control. Believe me when I tell you that YOUR hormones are unique to you and cannot be duplicated in a test tube.

At 52, while having my routine mammogram (something I have done for 20 yrs. after being diagnosed with fibrocystic breast disease) the doctor found a suspicious lump. I returned in a few weeks for a biopsy - I was diagnosed with breast cancer. My lumpectomy and radiation were completed by July 2008.

I feel compelled to write about endometriosis and the over use of hysterectomies in our culture. I certainly cannot say that it could be scientifically proven that my breast cancer, fibromyalgia, chronic fatigue, and leaky gut were a direct cause from the endometriosis and my choice of a complete hysterectomy. However, in my heart of hearts I know that it is so. When we introduce artificial hormones at such an early age we create a huge imbalance of our entire body since hormones reside in every cell not just our reproductive system. I feel that it is absolutely imperative for women under 45 to keep their uterus and ovaries unless it is a matter of life or death. I truly believe that the over use of synthetic hormones is a very dangerous thing.

I have tried to condense my story. As I looked back there were many steps and processes that I didn’t include. The last 20 years of my life has been a very complicated journey. One thing that I try to emphasize to women who are considering hysterectomies is to understand that after a hysterectomy your libido is almost completely gone. There are many women in my family that have had endometriosis and have chosen hysterectomies for their “cures”. All have agreed that if they had known how negatively they would feel about intimacy and love with their husbands, boyfriends or partners that they wouldn’t have undergone such an invasive surgery. You can’t get it back-it’s permanent!!

Now I am 53, and I have fully embraced integrative medicine-(i.e.- acupuncture, homeopathics, supplements, organic foods, massage therapy, herbs, Chi Nei Tsang-chinese abdominal massage). They have been part of my life for the past 10 yrs. These modalities make my syndromes bearable. Yes, it is financially a bit more expensive but emotionally, physically and spiritually it is a bargain. While the initial choice of having a complete hysterectomy appeared to have many benefits- I have learned the hard way that for me it was the most physically debilitating life alteration experience. Personally, I believe that my choice of a complete hysterectomy significantly precipitated the downward spiral of my health.

Hopefully, I have planted a seed of doubt about hysterectomies being a cure all for endometriosis. Indeed they are not. There are many avenues available at this time to assist you in making a more informed decision regarding the short and long-term outcomes of a complete hysterectomy. Use all the complementary medicines that you can find and afford to help alleviate or decrease your undesirable symptoms. It will be worth it in the end. As well, talk with many women who have had the surgery. Believe what they say-they are living the truth.

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

Jeanne's Endo Blog: Endometriosis Patients Are At Increased Risk For Breast Cancer... Have You Had Your Mammogram?? (UPDATED With Resources)

Due to family history (benign lumpectomy in first degree relative) and my personal, long-standing history of fibrocystic breasts, I received my first mammogram at age 37. It was normal. I was advised to return in 3 years. I just turned 40. So it was time for my next mammogram. A few days ago, I had one. It was normal. I thought I'd write a blog post about breast cancer here because research shows that women with endometriosis are at increased risk for certain types of cancer, including breast cancer.

Update added here:

UPDATE:

Addititonal resources...

Department of Health and Human Services, Centers for Disease Control and Prevention (National Breast and Cervical Cancer Early Detection Program)

Susan G. Komen for the Cure “Early Detection and Screening”

See below for more details...

Excerpt below is taken from this link from the Endometriosis Association (EA's Research Page - "Environmental Health Watch" Section):

"This landmark study has been followed by other research which supports these findings, including recent studies which reveal that women with endometriosis and their families have a greater risk of developing breast cancer, ovarian cancer, non-Hodgkin's lymphoma, and melanoma".

This public service announcement was posted on YouTube on June 19, 2008. Here is its description: "Powerful new breast cancer psa using showing the devastating effects of breast cancer from a male point of view from Serve Marketing"

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January 12, 2009

NEW NEWS STORY: MEDICAL BREAKTHROUGH IN ENGLAND:
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CBS News Story dated January 12, 2009: "A medical breakthrough in England could help keep the breast cancer gene from being passed on to future generations. Teri Okita reports".

This is info about the genes discussed in the video clip above:

BRCA 1 and 2: a pair of genes involved in breast cancer

Have you had your mammogram?

Related links:

TUESDAY, DECEMBER 16, 2008 Endosulfan Pesticide Banned in New Zealand: Endometriosis, Infertility, Breast Cancer & Pesticides...

THURSDAY, DECEMBER 4, 2008 Phthalates And Other Toxic Chemicals... What Are They And Why Should We Care??

TUESDAY, OCTOBER 14, 2008 Endometriosis Blog: The Increased Risk Of Breast Cancer For Endometriosis Patients

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

Endometriosis Blog: The Increased Risk Of Breast Cancer For Endometriosis Patients

October is National Breast Cancer Awareness Month.

Endometriosis patients are at increased risk for breast cancer (see below).

Here is a site you may wish to check out:

SUSAN G. KOMEN FOR THE CURE

According to the Endometriosis Association's website under the Endometriosis Association: "Toxic Link to Endo" section, "the incidence of allergies, asthma, and chemical sensitivities in women with endometriosis is higher than in the general population. Women with endometriosis are also at higher risk for autoimmune diseases and certain types of cancers".

One of the types of cancer women with endometriosis are at greater risk for is breast cancer.

Below is a link to 3 breast cancer videos (from HealthiNation and US News & World Report).

The videos include the following:

(1) What is breast cancer?
(2) True life story
(3) Breast cancer screening

Just click the link below to view the 3 breast cancer videos.

US News and World Report/HealthiNation Breast Cancer Videos

I know a couple of women from my local endometriosis support group (out of approximately 40 women) who are breast cancer survivors.

It is important for endometriosis patients to be aware that they are at increased risk for breast cancer. This information is not intended to be alarming. I believe it's important for women to be informed of their risk factors.

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

Endo Blog: New Environmental Article -- 'Body Toxic' and 'Poisoned Profits' -- Evidence That Endometriosis/Other Conditions Are Linked To Toxins

Regular readers may have noticed my intense interest in environmental factors for endometriosis and other chronic illnesses. If you scroll down my right sidebar (that's if it's working now... it's "on the fritz" again tonight), you'll see much information about the environment, "going green", etc.

I have deliberately included links to Environmental Health News, Green Living Tips, "we", Neutral Existence, etc.

Since environmental factors are so important for endometriosis and other chronic illnesses, I believe it's imperative to become informed about the links between environment and illness.

See this link: Endometriosis Association: "Toxic link to endo"

I'm no scientist but I have had endometriosis for 26 years now and I've done lots of reading on the environmental links between toxins, pesticides, chemicals, etc. on endometriosis patients, infertility patients, multiple chemical sensitivity syndrome patients, etc.

Anyway, here is what got me stirred up about environmental factors and illness today... Google occasionally sends me email alerts related to endometriosis. This October 10, 2008 article link got my attention: 'Body Toxic' and 'Poisoned Profits'.

If only this article were the first time I've read such alarming information. Unfortunately, it's far from it!

Please see here for full article: 'Body Toxic' and 'Poisoned Profits'. Here is a quick snippet from that article:

Then I'll provide some links afterwards that you may find helpful or interesting plus a list of some previous posts I've written about environmental issues.

In "Body Toxic," Baker begins with a visit to Commonweal, a Marin County environmental health institute, to explore some "biomonitoring" studies, which ascertain the numbers and types of foreign chemicals in humans. She then explores the implications of humans harboring so many substances, including increased risk of "cancers of the breast, testicles, and brain; lowered sperm count; early puberty; endometriosis and other defects of the female reproductive system; diabetes; obesity; attention deficit disorder; asthma; and autism."

Here are some links you may find helpful and some previous posts on environmental issues and their impact on endometriosis and many other chronic illnesses:

Our Stolen Future: A Book by Theo Colburn, Dianne Dumanoski, & John Peterson Myers

Our Stolen Future (Books On Endocrine Disruption)

Silent Spring by Rachel Carson - wikipedia entry

Women's Voices For The Earth

Health Care Without Harm

Environmental Working Group’s Report on Pesticide in Soap, Toothpaste and Breast Milk

The Campaign For Safe Cosmetics

Skin Deep: Cosmetic Safety Database

Related previous articles:

Monday, August 25, 2008 Endometriosis Blog: What Is Epigenetics?? Can "Environment Become Heredity"??

Tuesday, August 26, 2008 Endometriosis Blog: Are There Environmental Factors That We Can Control??

Friday, August 29, 2008 Endometriosis Blog: Environment And Endometriosis... What Can We Do To Minimize Symptoms And/Or Possibly Prevent Endometriosis In Our Loved Ones??

Monday, October 6, 2008 Endometriosis Blog: Fibromyalgia Awareness And Resources For Endometriosis Patients Affected By This Commonly Co-Existing Condition

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.