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.
Showing posts with label homeopathy. Show all posts
Showing posts with label homeopathy. Show all posts
3/23/2009
2/21/2009
"Jeanne's Endo Blog" Featured On Google Alerts... Plus A Nature Break And Intro to HolisticTwitter!
I thought I'd start out with these beautiful pictures. They are courtesy of Debby Bruck... a member of the HolisticTwitter group I just joined!
Andrea Tannouri will give you a warm welcome there! It's a cool group. Check it out!
Enjoy...
Find more photos like this on HolisticTwitter.com
I was pleased to receive the second Google alert in two weeks featuring my blog!
On 2/6, the Google alert email featured this link (which was a bit outdated when the alert went out):
Wednesday, November 26, 2008 'Jeanne's Endo Blog' Is Featured In Interstitial Cystitis Association's Newest Cafe ICA Newsletter!!
On 2/21, the Google alert email featured this link (which is a brand new post):
Friday, February 20, 2009 "Jeanne's Endo Blog": What Can I Expect From Having A Laparoscopy???
I am honored that Google alerts for two of my blog posts have been sent out since February 6th!
Have a great weekend!
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
Andrea Tannouri will give you a warm welcome there! It's a cool group. Check it out!
Enjoy...
Find more photos like this on HolisticTwitter.com
I was pleased to receive the second Google alert in two weeks featuring my blog!
On 2/6, the Google alert email featured this link (which was a bit outdated when the alert went out):
Wednesday, November 26, 2008 'Jeanne's Endo Blog' Is Featured In Interstitial Cystitis Association's Newest Cafe ICA Newsletter!!
On 2/21, the Google alert email featured this link (which is a brand new post):
Friday, February 20, 2009 "Jeanne's Endo Blog": What Can I Expect From Having A Laparoscopy???
I am honored that Google alerts for two of my blog posts have been sent out since February 6th!
Have a great weekend!
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
6/04/2008
Alternative Medicine Is Amazing!
As per my disclaimer above, I do not prescribe treatment options. You need to consult with your health care provider(s) for that. I am excited to share some info regarding alternative medicine because many endo patients are not aware of all of the options available for managing endo symptoms.
For the purposes of this blog, I am going to use the phrase “alternative medicine” to refer to treatment options other than the typical “drugs and surgery” that are offered by Traditional Western Medical doctors for treating endometriosis.
In my personal experience and that of many women I know through my endo support group, many alternative medicine options have come to my attention. We will be talking a great deal about alternative medicine options on this blog. This post is just a jump off point for starting a dialogue on options that are available other than standard hormonal treatments and surgeries.
Since surgery can cause adhesions and scar tissue and since these can cause more pain, the benefits and risks of surgeries should be weighed carefully by talking with your doctor. Many women have numerous laparoscopies to remove endo. Also, medications can have side effects.
If alternative therapies and Traditional Western Medicine can be used together as integrative medicine, patients can get the best of both worlds: endo patients can choose the options that are best for them based on their age, fertility desires, number and severity of symptoms (including pain), etc.
Here are just a few alternative medicine options I am aware of through either personal experience or what my support group members have shared with me:
Acupuncture – I have been getting regular acupuncture for over 7 years now. I love it! For many years, I had heard women rave about acupuncture and I was afraid to do it. I thought it would hurt. I was in enough pain already and didn’t want to add to it by getting stuck with needles! However, I now wish I have tried it sooner!!!! My acupuncturist is awesome. He uses Japanese style needles. They are so thin and flexible… nothing like hypodermic needles! He describes them as “about the width of a cat’s whisker”. They are so skinny it’s unbelievable. They do NOT hurt! The cool thing about acupuncture for me is that it helps me in a holistic way…. It helps my whole body. He doesn’t just treat my endo symptoms. He treats all symptoms that acupuncture can appropriately address. It helps me enormously! My acupuncturist is a licensed acupuncturist. Here are a couple of websites you may find helpful:
http://www.acupuncturetoday.com/
http://www.acupuncturefinder.com/
Chi Nei Tsang – A couple of my fellow endo support group members have tried this modality and found it to be very helpful! I’m including a website with info about Chi Nei Tsang: http://www.chineitsang.com/. According to this website, “Chi Nei Tsang is a holistic approach to the healing touch modality of old Taoist Chinese origin. It integrates the physical, mental, emotional and spiritual aspects of our being.” If you haven’t tried this modality, it’s something you may want to investigate!
Diet and Nutrition – Many endo patients find that dietary changes help them feel better. Some endo patients feel better when they follow a wheat free and/or dairy free diet. There are books about endo and nutrition out there. One I’ve heard good things about (but haven’t read) is Endometriosis: A Key to Healing Through Nutrition by Dian Shepperson Mills and Michael Vernon.
Massage Therapy – Many people think of massage therapy as simply a luxury or form of pampering. However, massage therapy certainly has medical benefits! If massage therapy interests you, try finding a licensed massage therapist by word of mouth. Some massage therapists are take-your-breath-away relaxing and others are just so-so. Some have special training in massage therapy that is more geared to medical benefits rather than just relaxation. Ask around and you may find that someone you know has a massage therapist they swear by!
Physical Therapy for Pelvic Pain – I never knew there was such a thing as this until a support group member told me about it. Then I tried it myself and saw what she was talking about. Then we told other support group members and several of them tried it too. I haven’t heard any negative feedback from the women who have tried this therapy. If you are experiencing pelvic pain, you may want to see if there is a physical therapist in your area that does this particular, specialized form of physical therapy. For information about this therapy, I would try searching on these two websites: http://www.pelvicpain.org/index.asp or http://www.nva.org/. This therapy is typically covered under insurance and often requires a doctor’s referral. The only reason I’m calling it “alternative” is that most endo patients aren’t aware this therapy exists and most doctors don’t mention it to their patients. Some geographical areas don’t have these specially trained practitioners. However, there could be one in your backyard and you won’t know it if you don’t check. This is a modality that can really help women with pelvic pain. Ask your doctor if it’s an option available near you and don’t be afraid to research on your own to see if it’s available in your area. It may be available and your doctor doesn’t know it yet! This is a relatively new field within physical therapy from what I understand.
HAVE A GREAT DAY!
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
For the purposes of this blog, I am going to use the phrase “alternative medicine” to refer to treatment options other than the typical “drugs and surgery” that are offered by Traditional Western Medical doctors for treating endometriosis.
In my personal experience and that of many women I know through my endo support group, many alternative medicine options have come to my attention. We will be talking a great deal about alternative medicine options on this blog. This post is just a jump off point for starting a dialogue on options that are available other than standard hormonal treatments and surgeries.
Since surgery can cause adhesions and scar tissue and since these can cause more pain, the benefits and risks of surgeries should be weighed carefully by talking with your doctor. Many women have numerous laparoscopies to remove endo. Also, medications can have side effects.
If alternative therapies and Traditional Western Medicine can be used together as integrative medicine, patients can get the best of both worlds: endo patients can choose the options that are best for them based on their age, fertility desires, number and severity of symptoms (including pain), etc.
Here are just a few alternative medicine options I am aware of through either personal experience or what my support group members have shared with me:
Acupuncture – I have been getting regular acupuncture for over 7 years now. I love it! For many years, I had heard women rave about acupuncture and I was afraid to do it. I thought it would hurt. I was in enough pain already and didn’t want to add to it by getting stuck with needles! However, I now wish I have tried it sooner!!!! My acupuncturist is awesome. He uses Japanese style needles. They are so thin and flexible… nothing like hypodermic needles! He describes them as “about the width of a cat’s whisker”. They are so skinny it’s unbelievable. They do NOT hurt! The cool thing about acupuncture for me is that it helps me in a holistic way…. It helps my whole body. He doesn’t just treat my endo symptoms. He treats all symptoms that acupuncture can appropriately address. It helps me enormously! My acupuncturist is a licensed acupuncturist. Here are a couple of websites you may find helpful:
http://www.acupuncturetoday.com/
http://www.acupuncturefinder.com/
Chi Nei Tsang – A couple of my fellow endo support group members have tried this modality and found it to be very helpful! I’m including a website with info about Chi Nei Tsang: http://www.chineitsang.com/. According to this website, “Chi Nei Tsang is a holistic approach to the healing touch modality of old Taoist Chinese origin. It integrates the physical, mental, emotional and spiritual aspects of our being.” If you haven’t tried this modality, it’s something you may want to investigate!
Diet and Nutrition – Many endo patients find that dietary changes help them feel better. Some endo patients feel better when they follow a wheat free and/or dairy free diet. There are books about endo and nutrition out there. One I’ve heard good things about (but haven’t read) is Endometriosis: A Key to Healing Through Nutrition by Dian Shepperson Mills and Michael Vernon.
Massage Therapy – Many people think of massage therapy as simply a luxury or form of pampering. However, massage therapy certainly has medical benefits! If massage therapy interests you, try finding a licensed massage therapist by word of mouth. Some massage therapists are take-your-breath-away relaxing and others are just so-so. Some have special training in massage therapy that is more geared to medical benefits rather than just relaxation. Ask around and you may find that someone you know has a massage therapist they swear by!
Physical Therapy for Pelvic Pain – I never knew there was such a thing as this until a support group member told me about it. Then I tried it myself and saw what she was talking about. Then we told other support group members and several of them tried it too. I haven’t heard any negative feedback from the women who have tried this therapy. If you are experiencing pelvic pain, you may want to see if there is a physical therapist in your area that does this particular, specialized form of physical therapy. For information about this therapy, I would try searching on these two websites: http://www.pelvicpain.org/index.asp or http://www.nva.org/. This therapy is typically covered under insurance and often requires a doctor’s referral. The only reason I’m calling it “alternative” is that most endo patients aren’t aware this therapy exists and most doctors don’t mention it to their patients. Some geographical areas don’t have these specially trained practitioners. However, there could be one in your backyard and you won’t know it if you don’t check. This is a modality that can really help women with pelvic pain. Ask your doctor if it’s an option available near you and don’t be afraid to research on your own to see if it’s available in your area. It may be available and your doctor doesn’t know it yet! This is a relatively new field within physical therapy from what I understand.
HAVE A GREAT DAY!
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
6/01/2008
Welcome to Jeanne's Endo Blog!
I would like to welcome everyone to this brand new endo blog. I am very excited about it! This is something I have thought of doing for awhile now.
I would like to start by thanking two people who have inspired me to pursue this idea of creating an endo blog. First, I'd like to thank Tracee for her generosity, moral support, and time! Tracee's blog was what first inspired me to even dream of creating a blog. I'd also like to thank my husband. He spent lots of time discussing this with me and was very encouraging. While I had privately pondered making a blog, both Tracee and Don came out and suggested it without me ever saying aloud that I was seriously considering doing it!
Also... one of my endo support group members, Alicia, emailed me to announce her new (non-endo) blog a couple of days ago. I had already made up my mind to create this by then and was very happy for her deciding to create a blog herself. Alicia has also been very enthusiastic in supporting my decision to create an endo blog. :)
So, here goes. My first real endo blog post. I guess it makes sense to start this blog by explaining my intent. My intent is to provide information that endo patients are likely to find interesting or helpful in managing their illness. As I mentioned in the disclaimer above, this blog is NOT intended to provide medical advice. I'm a layperson. I plan to share my personal experiences, any info my support group members would like me to share, info regarding alternative medicine options (of which many are unaware), any endo legislation I come across, lots of links to helpful websites, etc.
I'm am very excited about this venture. I hope we get lots of activity from people on comments to the posts. It should end up being a forum for vigorous exchange of ideas.
Finally, I should forewarn readers up front that I may not always post as regularly as I would like to be able to. So please be patient with me when these times occur. I will post as often as I'm able with the many illnesses I have. If you don't hear from me for awhile on this blog, it simply means I'm too sick to blog at that time BUT I'll be back at it as soon as I possibly can.
This should be an exciting opportunity to get endo patients connected, interacting, exchanging ideas, and empowering themselves. I believe it's SO important for endo patients to advocate for themselves. Navigating the health care system can be challenging. At some point, I hope to post tips like "suggested questions to ask your doctor in a pre-op appointment" and "what is available besides drugs and surgery?"
Please come back and visit regularly. I think you'll find this blog supportive and, hopefully, quite useful.
Thank you for checking the blog out. I hope you'll become a regular visitor!
:)
Take care,
Jeanne
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
I would like to start by thanking two people who have inspired me to pursue this idea of creating an endo blog. First, I'd like to thank Tracee for her generosity, moral support, and time! Tracee's blog was what first inspired me to even dream of creating a blog. I'd also like to thank my husband. He spent lots of time discussing this with me and was very encouraging. While I had privately pondered making a blog, both Tracee and Don came out and suggested it without me ever saying aloud that I was seriously considering doing it!
Also... one of my endo support group members, Alicia, emailed me to announce her new (non-endo) blog a couple of days ago. I had already made up my mind to create this by then and was very happy for her deciding to create a blog herself. Alicia has also been very enthusiastic in supporting my decision to create an endo blog. :)
So, here goes. My first real endo blog post. I guess it makes sense to start this blog by explaining my intent. My intent is to provide information that endo patients are likely to find interesting or helpful in managing their illness. As I mentioned in the disclaimer above, this blog is NOT intended to provide medical advice. I'm a layperson. I plan to share my personal experiences, any info my support group members would like me to share, info regarding alternative medicine options (of which many are unaware), any endo legislation I come across, lots of links to helpful websites, etc.
I'm am very excited about this venture. I hope we get lots of activity from people on comments to the posts. It should end up being a forum for vigorous exchange of ideas.
Finally, I should forewarn readers up front that I may not always post as regularly as I would like to be able to. So please be patient with me when these times occur. I will post as often as I'm able with the many illnesses I have. If you don't hear from me for awhile on this blog, it simply means I'm too sick to blog at that time BUT I'll be back at it as soon as I possibly can.
This should be an exciting opportunity to get endo patients connected, interacting, exchanging ideas, and empowering themselves. I believe it's SO important for endo patients to advocate for themselves. Navigating the health care system can be challenging. At some point, I hope to post tips like "suggested questions to ask your doctor in a pre-op appointment" and "what is available besides drugs and surgery?"
Please come back and visit regularly. I think you'll find this blog supportive and, hopefully, quite useful.
Thank you for checking the blog out. I hope you'll become a regular visitor!
:)
Take care,
Jeanne
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
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