"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': Hysterectomies Are Over-Performed In The U.S. ---- My Comment Posted On The February 26th Newsweek Article "Female Trouble"...

This post is in regard to a Newsweek article about hysterectomies.

Today I received a Google alert for an article related to the search term "endometriosis".

The article is called "Female Trouble".

To be honest, I've never been a big fan of the phrase "female trouble". After all, when men have prostate problems or testicular cancer, no one goes around labeling it "male trouble", right??

So this Google alert got my attention with the title of the Newsweek article alone.



While I wasn't so crazy about the title, I was pleasantly surprised by this article:

"Female Trouble"

Here is the comment I posted on the Newsweek site in response to this 2/26 article about hysterectomies:

Newsweek is to be congratulated (!) for educating the public that hysterectomy decisions are serious and permanent!

This article wisely takes note of the fact that too many hysterectomies are performed in the U.S.

I have met women who have had hysterectomies in the hope that it would help them feel better (with their endometriosis symptoms), only to proceed to have further, serious problems AFTER a hysterectomy! Their doctors led them to think they’d get relief that did not happen. The grief this caused them emotionally on top of the persisting physical problems is significant! Once your uterus is gone, it’s gone. There’s no going back.

Deciding to have a hysterectomy is a very serious decision to make.

Patients, don't be afraid to seek out a 2nd or 3rd opinion if a doctor suggests you get a hyst.

My local support group members have found this organization (see below) helpful for researching alternatives to hysterectomy. This site is a resource for any woman considering having a hysterectomy (not just endometriosis patients).

HYSTERECTOMY ALTERNATIVES AND AFTEREFFECTS
HERS FOUNDATION: Hysterectomy Educational Resources and Services

I have had doctors talk about hysterectomy as an option for me over the years, due to my endometriosis and other GYN conditions. (I am 40 years old and my endometriosis started at age 13). I have elected not to have a hysterectomy for a variety of reasons. (There is no cure for endometriosis, by the way).

Many people believe hysterectomies cure endometriosis. That is a MYTH.

I would urge women thinking of having a hysterectomy to research your options and seek out multiple opinions BEFORE jumping into a hysterectomy.

As this article concluded:

Hysterectomy IS a serious and permanent decision.

Thank you, Newsweek, for letting people know MORE about hysterectomies than they might have before they read this article!

Jeanne
Blog address: Jeanne's Endo Blog
* March is ENDOMETRIOSIS AWARENESS MONTH!!! *

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

Endometriosis and Endo-related Links You May Want to Check Out

Hi! I thought I'd post some links that may be of interest to endo patients. Some of them are endo websites. Others are sites for illnesses that often co-exist in endo patients. Still others are websites you may find uplifting/supportive.

There is no cure for endometriosis. There's a myth that hysterectomy is a cure for endo. Only you and your doctor can make treatment decisions as a team but I've included a couple of websites on the topic of hysterectomy. I thought this might be helpful since there is much confusion about this topic. One site is devoted to alternatives to hysterectomy. The other site says it provides "woman to woman hysterectomy support".

http://www.endometriosis.org/
http://www.endocenter.org/
http://www.endometriosisassn.org/
http://www.butyoudontlooksick.com/the_spoon_theory/
http://www.resolve.org/site/PageServer
http://www.pelvicpain.org/
http://www.noharm.org/us
http://www.womenandenvironment.org/
http://www.forgrace.org/women/in/pain_home/
http://www.ichelp.org/
http://www.fmnetnews.com/
http://www.hersfoundation.org/
http://www.hystersisters.com/

I hope you find these helpful!