"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': Sandy From Fighting Fatigue Has The Endometriosis Awareness Month Spirit!!

Here is a huge THANK YOU to Sandy at Fighting Fatigue!!

Check out her post!

Sign Petition to Raise Awareness During National Endometriosis Awareness Month

It would warm my heart if we can get the petition posted like this on other blogs!! Please consider doing so to increase endometriosis awareness!

Now, if you're reading this post and you have not yet read my previous post,
Monday, March 9, 2009 (VIDEO) 'Jeanne's Endo Blog': Vlog #3 Endometriosis Awareness Month (Week One Recap) & Acupuncture Intro Video, please go check it out.

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

VIDEO: 'Jeanne's Endo Blog' -- Any Patient Or Caregiver Who Deals With Chronic Conditions Can Probably Appreciate This Fantastic Video!

As I am far too tired to write a post, I decided it was high time to post a video. Loyal readers of this blog may recognize it from when I posted it months ago (or may have seen it in the YouTube video "slideshow" located in my blog's right sidebar).

Just because a condition isn't visible doesn't mean it doesn't hurt!!

(Video posted on YouTube by "booknhorsefreak" on October 10, 2007)

When I first saw this video, it made me cry and gave me chills. When I just came across it again (months later), it did the same thing to me. Whatever condition(s) you may have, you will probably relate to this video on some level. Between the gorgeous pictures, the perfect words that accompany them, the way this whole video just resonates for patients and caregivers alike, and the hauntingly beautiful music on the clip (sung by Natasha Bedingfield)... I have a feeling it will move you as it did me!

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

Endometriosis Blog: VIDEO On Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME) And Post Viral Fatigue Syndrome

I came across a very interesting and moving video on this site: Sleepydust.

This online ME/CFS video was made for patients AND the friends and family of ME/CFS sufferers (i.e. sufferers of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome/Post Viral Fatigue Syndrome).

For more information about Sleepydust, please see: The Sleepydust Newspaper.

According to this organization's site, this video is for CFS, ME, and Post Viral Fatigue Syndrome patients and their families. It's just over 9 minutes long. (The Sleepydust organization also supports fibromyalgia patients).

VIDEO:



I found a Facebook group called "Chronic Fatigue/M.E - Increase awareness & understanding!" and that is how I found the Sleepydust video.

If you are interested in learning more about the group mentioned above, login to Facebook. (This requires registration if you do not have an account).

Then look for the "Chronic Fatigue/M.E - Increase awareness & understanding!" group.

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

Endometriosis Blog: Interstitial Cystitis Awareness Week October 20th-26th, 2008 (RE-POST)

RE-POST (with added link below):

IC Disease - It's IC Awareness Week: What's Happening

I apologize for posting the above link a little later than I had hoped. I am having a really rough week with pain.

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Original Post:

I wanted to give readers some notice that National Interstitial Cystitis Awareness Week is October 20th through 26th, 2008.

There are numerous ways interstitial cystitis (IC) patients and their loved ones can help raise awareness about interstitial cystitis.

Here are some ideas for how you can make your voices heard about this illness, which can often be debilitating...

++ You can write to your legislators and explain how interstitial cystitis affects you and your loved ones. Advocating for ourselves is so important. Contacting our representatives can have a positive impact! Awareness and research dollars are crucial to making headway and progressing in improving the quality of life for interstitial cystitis patients.

++ Another idea is to contact the media (print, radio, local TV news, etc.) and volunteer to share your story. You might be surprised that they might be responsive to your offer to be interviewed. I was interviewed about endometriosis a few years back on the health segment of the local TV news and it was an interesting experience that reached more people than we could have from other methods. If you contact media, you may want to do so as soon as possible. Newspapers have lots of deadlines... so the sooner you approach them, the better your odds for being featured. I would definitely suggest mentioning to them that Interstitial Cystitis Awareness Week is October 20th-26th, 2008! It could greatly increase your odds your being featured.

Thank you to Sandy of IC Disease: Life With Interstitial Cystitis, Vulvodynia, Incontinence, and & Other Bladder Conditions for bringing this awareness week to my attention.

See the "IC Disease" article about awareness week: October 20 - 26: National Interstitial Cystitis Awareness Week

For a resource on interstitial cystitis, see: The Interstitial Cystitis Association.

Related links that have mentioned interstitial cystitis previously:

Sunday, October 12, 2008 Endometriosis Blog: Vulvodynia And Vestibulitis, Launch Of Polish Website About Vulvodynia

Wednesday, October 8, 2008 Endometriosis Blog: Obituary Of An Endometriosis Support Group Or Beginning Of A Better System?

Monday, September 22, 2008 Endometriosis Blog: Interstitial Cystitis & Endometriosis

Friday, September 19, 2008 Endometriosis Blog: Spotlight On The Interstitial Cystitis Association!!

Sunday, September 7, 2008 Endometriosis Blog: NEW YouTube Video Clips! Endometriosis, Chronic Illness And Other Topics Of Interest!!

Monday, August 11, 2008 Endometriosis Blog: Check Out Newly-Added Co-Existing Illness/Chronic Illness Links in "Frequently Visited Sites" At Bottom Of Homepage!!!

Friday, August 8, 2008 Endometriosis Blog: SEVENTH Anniversary Of My Local Endometriosis Support Group!!!

Saturday, July 26, 2008 Endometriosis Blog: The Importance of Relaxation To Your Health...

Friday, July 25, 2008 Endometriosis Blog: Results Of YOUR FEEDBACK On Endo Blog TOPIC CHOICES POLL!

Tuesday, July 22, 2008 Endometriosis Patient Survives Yet Another Annual Exam Without Perishing On The Table :) :)

Wednesday, July 9, 2008 Endo Blog Spotlight: Interstitial Cystitis, Endometriosis, and Co-existing Conditions/Chronic Illnesses

Saturday, June 21, 2008 Endo Blog Spotlight: Interstitial Cystitis, Endometriosis, and Co-existing Conditions/Chronic Illnesses

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

Endometriosis Blog: VIDEOS Of Husband's Grief Over The Loss Of His Wife Who Had Fibromyalgia. These VIDEOS Could Help Many People!!!

I just came across this moving video. I will forewarn you before you watch it that it is very emotional. I am crying as I write this post. The video is a man talking about the loss of his wife. His wife had fibromyalgia. This man is trying to create awareness about fibromyalgia, chronic fatigue syndrome, and chronic pain.

This video is very powerful. Again, I will caution you that this video may stir up painful emotions for viewers. However, I feel compelled to feature it here because I believe this widower really captures the tragedy that an illness such as fibromyalgia can cause.

In the video, you will hear this man make reference to a New York Times article that questioned whether there is such a thing as fibromyalgia at all. This article was very upsetting to me and to many fibromyalgia patients (and the doctors who treat them and believe fibromyalgia is VERY REAL)!!

I believe this man's compelling video is a chilling but loving account of how fibromyalgia affected his wife. I see it as a tribute to his wife... by a man in severe emotional pain who is working hard to create awareness about the scope of illnesses like fibromyalgia and chronic fatigue syndrome!

I urge you to watch this video and listen to this man's story of what his wife went through. His wife's story is chilling, sad, and tragic... but he is working to share her story to help others.

After the video, I will include a link to the New York Times article he referenced that upset so many people. Then I will also post the letter I wrote to the New York Times when that heinous article came to my attention.

This man asks that viewers of this video write to Oprah in an attempt to get this story aired on her show.

Please take 9 minutes and 54 seconds out of your life to watch this compelling video. It may bring you to tears as it did me. However, I believe it is worth watching. I admire this husband's tenacity in working to create awareness about the profound impact illnesses such as fibromyalgia can have on patients. This video gave me chills.

I was unable to get the embedded code for this video to work but if you simply click on the hyperlink below, you will be routed to this powerful video:

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VIDEO --- "Fibromyalgia - Lisa's Story".

Here is the compelling video from Lisa's husband... "Fibromyalgia - Lisa's Story"

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Here is a link to the terribly inaccurate New York Times article questioning the existence of fibromyalgia:

New York Times article on fibromyalgia

Here is the letter to the editor of the New York Times that I sent in February 2008:

From: Jeanne
Sent: Friday, February 29, 2008 11:10 PM
To: 'public@nytimes.com'
Cc: 'nytnews@nytimes.com'; 'managing-editor@nytimes.com'
Subject: OUTRAGE over "Drug Approved, Is Disease Real?"

ATTN Mr. Clark Hoyt, Public Editor

Cc: News Department; Managing Editor

I just learned of a January 14, 2008 (front page) New York Times article called “Drug Approved, Is Disease Real? I am astonished to have read this troubling, hurtful, inaccurate article. I was shocked that the New York Times article questions whether fibromyalgia is real!

The article’s portrayal of fibromyalgia as a fictional illness is appalling!

Can you imagine if the NYT wrote an article about cancer being imaginary? I have fibromyalgia and I have had cancer; trust me that fibromyalgia is as real as cancer. How many letters and calls would you be flooded with if cancer were painted as a fictional illness? Can you imagine the uproar?

This article drags millions of fibro patients through the mud with its inaccuracies. Fibro patients have enough trouble without people believing them to be fakers. Articles like this get read by many people. They read the “big bad pharmaceutical company” slant of this article and are left to believe that any fibro patient they meet is faking, lying, imagining, etc. This is very damaging to people already suffering so much. Fibro patients need MORE support from family, friends, and co-workers… not LESS!

Let me be quite clear. I have nothing to gain by “saying” I have fibro. I don’t receive any money from pharmaceutical companies (though they get plenty of mine)! I have been known to complain about the corruption of pharmaceutical companies, the expense of their drugs, and their ridiculous profit margins. I am not a lobbyist, pharmaceutical sales representative, or a person who stands to gain financially in any way by speaking out against this heinous article.

By the way, the reason I have identified myself as a fibromyalgia patient is that my doctor diagnosed me with it. He then referred me to a specialist (rheumatologist) to confirm OR rule out fibromyalgia. The specialist confirmed that I have it.

It is excrutiatingly painful! Cold weather, in particular, aggravates my fibromyalgia symptoms. Where I live, we had the pleasure of sub-zero (Fahrenheit) weather in the last few days (I am not referring to wind chill either). Temps like these cause unspeakable pain for me. There are times it hurts to give my husband or child a hug. Sitting in a chair for too long can result in increased pain. The list goes on and on...

An article that sets out to discredit a valid illness (recognized by many physicians, despite what was implied by the small number of apparently cherry-picked doctors that were quoted in this article) is reprehensible. This article is medically inaccurate and, quite frankly, just plain irresponsible journalism.

The article was offensive and potentially has hurt/will hurt many lives.

No one is more game to read an article proving the greed and corruption of pharmaceutical companies than I am. However, slamming an entire illness that’s well-recognized by most health care professionals hurts the millions of patients with this very real illness. Slam pharmaceuticals all you want! Please just make sure when you do so that the article is properly fact-checked. The doctors you quoted as insisting this illness is not real are in such a minority. Why spin a story to fit a category (i.e. “beat up the pharmaceutical companies”)? Why not just present the facts? The doctors’ opinions you quoted are not the norm.

I strongly believe the New York Times should print an apology and a retraction. Also, it should run articles with accurate information from doctors whose views aren’t so obviously out-of-step with the vast majority of doctors.

When someone is chronically ill, every day is full of challenges. The fibromyalgia patients I’ve had the privilege of meeting are better than most at “adapting” to adversity, illness, and pain… despite what the doctor you quoted said.

Please consider using more care before printing articles that will be read by many in your widely-circulated newspaper.

Thank you,

Jeanne

My thoughts are with this man who is grieving the loss of his wife but also rising up to create awareness and foster understanding of fibromyalgia, chronic fatigue syndrome, and chronic pain!!

His video will help others. Perhaps he'll even get to discuss what happened in his wife's situation with a much wider audience such as Oprah's.

This man's courage in the face of such tragedy is helping other people to comprehend how profoundly fibromyalgia and related illnesses can affect patients and their loved ones. I believe he is doing a great service by posting this video.

Related articles/previous posts from my blog referencing fibromyalgia and illnesses correlated to it/co-existing conditions:

Sunday, October 12, 2008 Endometriosis Blog: Vulvodynia And Vestibulitis, Launch Of Polish Website About Vulvodynia

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


Sunday, September 7, 2008 Endometriosis Blog: NEW YouTube Video Clips! Endometriosis, Chronic Illness And Other Topics Of Interest!!

Monday, September 1, 2008 Endometriosis Blog: Fibromyalgia Awareness

Monday, August 11, 2008 Endometriosis Blog: Check Out Newly-Added Co-Existing Illness/Chronic Illness Links in "Frequently Visited Sites" At Bottom Of Homepage!!!

Saturday, June 21, 2008 Endo Blog Spotlight: Interstitial Cystitis, Endometriosis, and Co-existing Conditions/Chronic Illnesses

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Second video from Lisa's husband:
Husband's Quest/Lisa's Story

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

Endometriosis Blog: Vulvodynia And Vestibulitis, Launch Of Polish Website About Vulvodynia

Today's post is about vulvodynia.

For those who are unfamiliar with vulvodynia, I thought I'd start with a definition of it from the National Vulvodynia Association:

About Vulvodynia: What is Vulvodynia?

The International Society for the Study of Vulvovaginal Disease (ISSVD) defines Vulvodynia as chronic vulvar discomfort or pain, characterized by burning, stinging, irritation or rawness of the female genitalia in cases in which there is no infection or skin disease of the vulva or vagina causing these symptoms. Burning sensations are the most common, but the type and severity of symptoms are highly individualized. Pain may be constant or intermittent, localized or diffuse.

Vulvodynia has been classified into the following subtypes:

Generalized (or dysesthetic) Vulvodynia--

Generalized Vulvodynia symptoms may be diffuse or in different areas at different times. Pain may be present in the labia majora, labia minora, and/or the vestibule. (see vulvar anatomy). Some women experience pain in the clitoris, mons pubis, perineum and/or the inner thighs. The pain may be constant or intermittent. Symptoms are not necessarily caused by touch or pressure to the vulva, i.e., with intercourse or bicycle riding, but these activities often exacerbate the symptoms.

Vulvar Vestibulitis Syndrome (also known as vestibulodynia)--

Women with VVS have pain only in the vestibule, and only during or after touch or pressure is applied. Burning sensations are the most common symptom and may be experienced with some or all of the following: sexual intercourse, tampon insertion, gynecologic examination, bicycle riding, and wearing tight pants.

There are several other conditions that cause chronic vulvar pain and may coexist with Vulvodynia. The most common of these are listed below:

Cyclic Vulvovaginitis--

Women with cyclic vulvovaginitis have recurrent burning and itching symptoms at the same stage of the menstrual cycle. Many have cyclical bouts of yeast infections and some have other causes for their symptoms.

Vulvar Dermatoses--

There are many dermatologic conditions that may cause pain in the vulva. The most common include: allergic or contact dermatitis, lichen sclerosus, lichen simplex chronicus and lichen planus. These conditions may cause symptoms of itching and burning. Scratching the vulva and overusing topical medications may inflame the tissue, causing swelling and additional pain.

Vulvodynia, as with most chronic pain conditions, can have a profound impact on a woman’s quality of life. It typically affects her ability to engage in sexual activity and may interfere with daily functioning, e.g., sitting at a desk, engaging in physical exercise, and participating in social activities. These limitations can negatively affect self-image and lead to depression.

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National Vulvodynia Association (NVA) is an educational, nonprofit organization founded to disseminate information on vulvodynia. The NVA recommends that you consult your own health care practitioner to determine which course of treatment or medication is appropriate for you.

Last updated September 26, 2008

Many of my local endometriosis support group members have been diagnosed with either vulvodynia or vestibulitis. I myself was initially diagnosed with vestibulitis by a pelvic pain specialist who treats many women with this condition. I was then referred to a second pelvic pain specialist who also specializes in pelvic pain and vulvar pain. He said that I actually have vulvodynia. (So it all boils down to which specialist I want to believe... but I have one or the other).

I recently contacted Alexandra Carmichael of CureTogether, a medical research organization studying vulvodynia. I asked her if she had any research regarding any connections between vulvodynia and other conditions such as endometriosis, fibromyalgia, interstitial cystitis, etc.

She sent me a very interesting article:

This fascinating article "Assessment of vulvodynia symptoms in a sample of U.S. women: a prevalence survey with a nested case control study" by Lauren D. Arnold, PhD, MPH*; Gloria A. Bachmann, MD; Raymond Rosen, PhD; George G. Rhoads, MD, MPH from the American Journal of Obstetrics and Gynecology said, in part:

RESULTS: Current vulvar pain of at least 6 months duration was reported by 3.8% of respondents, with a 9.9% lifetime prevalence. Forty five percent of women with pain reported an adverse effect on their sexual life and 27% an adverse effect on their lifestyle. Cases more frequently reported repeated urinary tract infections (OR, 6.15; 95% CI, 3.51-10.77) and yeast infections (OR, 4.24; 95% CI, 2.47-7.28). Associations existed with chronic fatigue syndrome (OR, 2.78; 95% CI, 1.33-6.19), fibromyalgia (OR, 2.15; 95% CI, 1.06-4.36), depression (OR, 2.99; 95% CI, 1.87-4.80), and irritable bowel syndrome (OR, 1.86; 95% CI, 1.07-3.23).

The article also said:

Current literature supports associations between vulvodynia and fibromyalgia, chronic fatigue syndrome, pain with first tampon use, yeast infections, recurrent vulvovaginal infections, irritable bowel syndrome, interstitial cystitis, and oral contraceptive use.

The article referenced above is in a .PDF file. If you would like a copy of the entire article (which is very interesting!) please email your request to endendo@frontiernet.net and I'll be glad to send you the .PDF attachment that contains the whole article.

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Launch of Polish website on vulvodynia:

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Recently, I was contacted by Mikolaj Czyz, a co-author of the very first website about vulvodynia in Polish. This new website is promoting awareness about vulvodynia... a "completely unknown and/or neglected issue" in Poland.

I'll include two links (below) to their site about vulvodynia. The first is written in Polish. The second link is the same website translated into English. (The English translation isn't word for word and some words didn't translate through but the main idea is apparent).

This site has some very interesting information including an interview with Dr. Ines Ehmer of Germany and an interview with Mr. Marek Jantos, a psychologist dealing with chronic pain, including vulvodynia, and the author of several studies on it.

Vulvodynia in Poland: Polish version of vulvodynia awareness site

Vulvodynia in Poland: English version of vulvodynia awareness site listed above

According to Mikolaj Czyz the vulvodynia treatment options are limited in Europe and the U.S. has more treatments available to vulvodynia patients. Mikolaj Czyz is working to create awareness of vulvodynia in Poland. (See right sidebar for icon that links to the Polish version of the site).

Related links (previous posts that have mentioned vulvodynia):

Monday, September 22, 2008 Endometriosis Blog: Interstitial Cystitis & Endometriosis

Monday, August 11, 2008 Endometriosis Blog: Check Out Newly-Added Co-Existing Illness/Chronic Illness Links in "Frequently Visited Sites" At Bottom Of Homepage!!!

Friday, August 8, 2008 Endometriosis Blog: SEVENTH Anniversary Of My Local Endometriosis Support Group!!!

Tuesday, July 22, 2008 Endometriosis Patient Survives Yet Another Annual Exam Without Perishing On The Table :) :)

Tuesday, July 15, 2008 Endo News Flash!! An ENDOMETRIOSIS RESEARCH ORGANIZATION called CureTogether Launches On JULY 15, 2008!!!

Saturday, June 21, 2008 Endo Blog Spotlight: Interstitial Cystitis, Endometriosis, and Co-existing Conditions/Chronic Illnesses

Another resource readers may find helpful is the International Pelvic Pain Society.

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

Endometriosis Blog: Fibromyalgia Awareness And Resources For Endometriosis Patients Affected By This Commonly Co-Existing Condition

Since fibromyalgia affects so many endometriosis patients, I thought today I'd post a video about fibromyalgia and some resources people may find helpful.

Fibromyalgia is a very common co-existing condition with endometriosis and I know many women who have both conditions (myself included).



Awhile back, I had added a graphic to this blog's sidebar regarding the National Fibromyalgia Association's "Pledge To Care".

Here's the link to the NFA's Pledge To Care: National Fibromyalgia Association's Pledge To Care

For more information on fibromyalgia, I follow this blog:

Fighting Fatigue: Top Resource Site For Chronic Fatigue Syndrome, Fibromyalgia, and IC Disease

I've also found this site helpful:

Fibromyalgia Network

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Editor's Note:

Today's article on Fighting Fatigue: Top Resource Site For Chronic Fatigue Syndrome, Fibromyalgia, and IC Disease cites a study by the National Fibromyalgia Association that found that the physical function of a woman with fibromyalgia is less than that of an 80 year old.
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This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

Endometriosis Blog: National Invisible Chronic Illness Awareness Week - "Medications, Illness, Fertility and the Desire for Motherhood"

As mentioned in previous posts, this week's events for National Invisible Chronic Illness Awareness Week include online seminars. Callers can dial in and talk about various chronic illness-related topics.

Yesterday there was a seminar on "Medications, Illness, Fertility and the Desire for Motherhood" with Jenni Saake. (I was unavailable to participate at the time of Jenni's seminar but thankfully all of this week's seminars are available in the blogtalkradio archives)!!!

I had posted a general comment on the II forum yesterday (II is commonly used this week as an abbreviation for "Invisible Illness").

Then, last night, Jenni posted a comment on this blog (see Jenni Saake's comment in the comments section of Tuesday, September 9, 2008 Endometriosis Blog: National Invisible Chronic Illness Awareness Week - Shameless Plugs For Their Merchandise). She had seen my comment and had tracked down this blog since the "endometriosis" topic got her attention.

I have since listened to Jenni Saake's seminar and I'm sure many of our readers will find it helpful!!! If you are interested in listening to it, you'll simply need to register for a blogtalkradio login (a quick process)... and then login to blogtalkradio when you're ready to listen to archived seminars like this one.


The name of Jenni Saake's seminar is: "Medications, Illness, Fertility and the Desire for Motherhood".

Here's a description of the show (as listed on blogtalkradio):

Wondering if you should consider parenthood with your illness? Concerned about your fertility as well as the impact of medications? Jennifer Saake has lived 18 years of illness, with infertility for 10 of those years. Balancing both conditions includes: medication side effects (illness meds on fertility and fertility meds on illness), questioning sanity of wanting desperately to have children yet fearing how she would care for them when she can hardly care for herself, facing the frustration of attempted adoption when her health makes her less "marketable." She has written a book on infertility and loss and is praying about someday writing a book on living with chronic illness.

I encourage you to check out Jenni Saake's talk on blogtalkradio by logging in as described above. With Jenni Saake's personal experience with endometriosis, fibromyalgia, chronic fatigue syndrome (CFIDS), hormonally-induced panic attacks, infertility issues, investigating adoption, miscarriages, PCO (polycystic ovarian syndrome), surgery, pre-diabetic condition, artificial insemination, etc... I'm sure many readers here will have a great appreciation for Jenni Saake's compelling story!

Jenni's story is engrossing, informative, and very worthwhile listening! Please consider listening to this fantastic program!!

Here are two of her sites that she mentioned during the program:

http://www.hannahshopebook.com/
http://www.harvestinghope.blogspot.com/

This is a wonderful seminar that will appeal to many readers of this blog!!

See related posts regarding National Invisible Chronic Illness Awareness Week:

Sunday, September 7, 2008 Endometriosis Blog: Tomorrow is DAY ONE of National Invisible Chronic Illness Awareness Week 2008!!

Monday, September 8, 2008 Endometriosis Blog: ***TODAY*** Kicks Off National Invisible Chronic Illness Awareness Week 2008!!

Tuesday, September 9, 2008 Endometriosis Blog: National Invisible Chronic Illness Awareness Week - Shameless Plugs For Their Merchandise

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

Endometriosis Blog: NEW YouTube Video Clips! Endometriosis, Chronic Illness And Other Topics Of Interest!!

I just wanted to let readers know that the previous YouTube section of this blog has been deleted. It has been replaced with a new YouTube video clip section.

See the new YouTube video clips in the right sidebar under:

YouTube Video Clips: Endometriosis AND Other Chronic Illnesses

The previous YouTube clips were randomly pulled from YouTube using keywords like "endometriosis", "pelvic pain", and "fibromyalgia". There were also some ads that were interspersed between the clips on the previous YouTube clip section and everything then appeared in a rotating slideshow.

The new YouTube section currently contains video clips that I handpicked. While some ads may get added in later, right now the video clips showing are just ones that I selected.

I should pause at this point to apologize to anyone who had the misfortune of viewing my YouTube video clips last evening. YouTube does have a filter that is supposed to screen out objectionable material. It didn't work last night and I was a bit stunned at a couple of the video clips that were on my screen when I went on my blog last night!

Let's just say that the video clips that appeared last night were randomly selected by YouTube using keywords (not just ones like what I referenced above but also content words from within this blog). So (apparently) since this blog contains gynecological terms... when the filter isn't working (as I discovered last night), some inappropriate clips can appear! I'm sorry if anyone else had the misfortune of logging on last night and seeing them. I immediately deleted that slideshow last night.

Fortunately, I had already been working on putting together the new YouTube section for a few days before that. So I finished and installed the new YouTube section last night. The new YouTube video clips are ones I selected that I thought would be of interest to readers. (Hopefully if ads do get mixed in with the clips later I will be able to find a more effective way of screening out clips that are inappropriate for this blog).

There are 10 clips on the new YouTube area. Topics covered include some that will look familiar and others which are totally new.

One that may look familiar from the old slideshow (that I had found fascinating and didn't want to lose in the new YouTube area) is on a surgical treatment for endometriosis called "autofluorescence diagnosis of endo" or "spectral endoscopy".

In addition, topics covered in the video clips include the following: chronic pain/illness in general, fibromyalgia, chronic fatigue syndrome, the value of support networks/groups, interstitial cystitis, infertility, multiple chemical sensitivity syndrome, and mindfulness meditation with a clip of Dr. Jon Kabat-Zinn. Many of the illnesses I just mentioned are known to many readers of this blog as co-existing illnesses to endometriosis.

Another clip that will look familiar to those of you who saw the previous YouTube slideshow is the outstanding "Wild Horses" video clip about chronic illness and chronic pain. Accompanied by background music by Natasha Bedingfield, this clip is FANTASTIC and sure to be appreciated by anyone who is chronically ill (whether with endometriosis or otherwise). If you missed this clip the first time around, I highly recommend checking it out!

With these new YouTube video clips, you can toggle through to see the ones you want rather than waiting for them to automatically rotate as they did previously. To do so... simply click on the arrow symbol on either side of the video screen (about halfway down the screen). The left arrow will take you to the previous clip and the right arrow will take you forward to the next clip available for viewing.

If I'm not mistaken, you can also expand the size of the video clip by double clicking on the clip you want to see. (I was pretty tired last night when I completed this so maybe I dreamed it! I'm honestly too tired to check now so I'll let you explore the clips on your own). :)

I think these video clips are helpful for a couple of reasons. One is that they give a 'visual' that may be a bit more exciting to look at than than just reading text. Another reason is that they explain things in a way that I probably couldn't do justice to in print. Finally, I know when I'm tired and/or in pain that it's sometimes easier to watch a video clip than to read about the same topic. So the clips may be helpful in that way too!

I'll be anxious to hear your feedback on the new video clips. I hope you like them.

For previous posts on the topic of video clips --- on endometriosis and other chronic illness-related topics --- please see the following posts:

FRIDAY, JUNE 6, 2008 Video Clip: Lack of Endometriosis Surgery Reimbursement in the US (*** Please read the disclaimer at the top of this blog.***)

MONDAY, JUNE 9, 2008 YouTube Video Clips --- Endo, Infertility, Chronic Pain, Pelvic Pain...

MONDAY, JULY 14, 2008 Jeanne's Endo Blog: YouTube Video Clips --- Endo, Infertility, Chronic Pain, Pelvic Pain... ***PART TWO***

FRIDAY, JULY 18, 2008 Endometriosis & Chronic Illness/Pain: YouTube Video Has Touched Many!!!

Let me know what you think! :)

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

Endometriosis Blog: Fibromyalgia Awareness

Thanks to Sherril Johnson, I am now aware of the ILAP (International Leaders Against Pain) 2008 program she attended and the National Fibromyalgia Association's "Pledge To Care".

As many readers of my blog know, fibromyalgia is a co-existing illness for many endometriosis patients. I have fibromyalgia myself.

I encourage you to read Sherril's informative Sunday August 31, 2008 post: "ILAP 2008 - The Pledge to Care".

I have added a widget for this campaign in the sidebar of this blog. If you click on it, it will route you right to the National Fibromyalgia Association's website (or just click below):

http://www.fmaware.org/site/PageServer

Please see Sherril Johnson's invisible chronic illness blog for more information:

http://theiciexperience.blogspot.com/

Thank you to Sherril Johnson for bringing attention to this important information!!


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

Endometriosis Blog: Check Out Newly-Added Co-Existing Illness/Chronic Illness Links in "Frequently Visited Sites" At Bottom Of Homepage!!!

Awhile back, I published the results of our first POLL --- see July archives for that article: "Wednesday, July 16, 2008 UPDATE: What Endometriosis (Or Related) Topics Interest You Most? (You May Check More Than One Answer). A Follow-up!"

The most selected category in that poll was co-existing illnesses/conditions.

Therefore, I have added two new links on "co-existing illnesses to endometriosis" at the bottom of my homepage in my most frequently visited sites. (Just scroll down to the bottom of this page to view the links).

Please check out these two just-added links to chronic illness sites on co-existing illnesses to endometriosis:

IC Disease - Life with Interstitial Cystitis, Vulvodynia, Incontinence, & Other Bladder Conditions:

http://icdisease.today.com/category/endometriosis/

Fighting Fatigue.org - Top Resource Site For Chronic Fatigue Syndrome, Fibromyalgia & Interstitial Cystitis Disease:

http://www.fightingfatigue.org/


*****P.S. Speaking of POLLS, please don't forget about the support group/self-help group POLL located in the right sidebar of this blog!!! The more feedback I get from readers, the better I can tailor this blog to meet your needs!*****


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UPDATE-----Due to a programming problem I haven't yet been able to fix, the favorites at the bottom of my blog have a space above them. They are still there!! It just takes scrolling down all the way to the bottom to see them. I apologize for the inconvenience. To see the new links mentioned in this post (among others), please just scroll all the way to the bottom of this homepage and you will see them. Thank you for your patience while I figure out why this programming problem happened and what to do about it.
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This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

Endometriosis Blog: How Finding The Endometriosis Association & Participating In Endometriosis Support Groups Helped Me & Made Me A Volunteer!!

We’ll call post this “Part Two”:

I will pick up where I left off with the TUESDAY, AUGUST 5, 2008 Endometriosis Blog: My Personal History As An Endometriosis Patient “cliffhanger” post.

Here is where I left off:

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So please stay tuned to find out how The Endometriosis Association helped me to learn about the illness, get needed support, and feel less alone!!!
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If you have not yet read the August 5th post, you may want to read in reverse chronological posting order so that things are in context!

So once I had found the contact information for The Endometriosis Association in the Barnes & Noble bookstore, I went home and called them immediately. At that time, there was a phone number specifically for people who were new to The Endometriosis Association that took messages for call back. (I believe that there is just the main number for The Endometriosis Association now)…

The Endometriosis Association can be reached at:
Phone:(414) 355-2200
Website: http://www.endometriosisassn.org/

I PERSONALLY HAVE FOUND A WOMAN NAMED SHELLEY HOUCHIN TO BE EXTRAORDINARILY HELPFUL AND SUPPORTIVE! SHE IS THE SUPPORT PROGRAM COORDINATOR AT THE ENDOMETRIOSIS ASSOCIATION HEADQUARTERS. I WOULD HIGHLY RECOMMEND CONTACTING SHELLEY IF YOU HAVE ANY QUESTIONS ABOUT ENDOMETRIOSIS SUPPORT GROUPS OR THE ENDOMETRIOSIS ASSOCIATION IN GENERAL. THIS WOMAN IS VERY PASSIONATE ABOUT HELPING ENDOMETRIOSIS PATIENTS AND IS A FANTASTIC RESOURCE! SO IF YOU CALL OR EMAIL THE ENDOMETRIOSIS ASSOCIATION, JUST ASK FOR SHELLEY HOUCHIN AND SHE WILL BE VERY HELPFUL!!!

Anyway, someone called me back shortly after I left my message in 1992. The woman was very helpful! Since this conversation took place back in 1992, I don’t remember the exact details but I know she was very nice. I do know that I ended up joining The Endometriosis Association as a member. My membership meant that I began to receive The Endometriosis Association’s newsletter.

The newsletters were the first time I heard stories from women like me who were also endometriosis patients! There were letters that endometriosis patients had written to The Endometriosis Association published in the newsletters and the stories sounded like I could have written them!!

Around this time, I became aware of a book which was published in 1987 called Overcoming Endometriosis by Mary Lou Ballweg. (Overcoming Endometriosis was followed by The Endometriosis Sourcebook by Mary Lou Ballweg and The Endometriosis Association in 1995 and Endometriosis: The Complete Reference for Taking Charge of Your Health by Mary Lou Ballweg and The Endometriosis Association in 2003).

Overcoming Endometriosis, which I read in 1992, helped me to realize that there were many fellow endometriosis patients in the world. Between the newsletters and the book, I was starting to feel less alone.

Somewhere along the line it came to my attention that there was an Endometriosis Association support group right in my city. I had never been to a support group before and didn’t know what to expect! I was quite nervous about calling the Group Co-Leader but I was very ill from endometriosis and so I got past my nerves and placed the call.

I sure am glad I made that phone call!!! The Group Co-Leader was very warm and welcoming. She told me about the support group: where & when meetings were held, some idea of what meetings were like, some of her own personal experience as an endometriosis patient, etc.

IT WAS SUCH A GREAT PHONE CALL! I KNEW THAT I HAD TO GO AND CHECK THE SUPPORT GROUP OUT!

At the time I was a shy, quiet 23 year old with zero knowledge of support groups... back in 1992. The idea of going to a meeting where I would talk with people I didn’t know about my endometriosis made me apprehensive. However, the phone call from the welcoming Group Co-Leader helped a great deal! Also, I was too sick NOT to try a meeting! What did I have to lose? I knew I might very well have a great deal to gain! If the other support group members were even half as nice as the woman I had spoken with on the phone, I’d be foolish not to go!

So the next meeting night arrived. I went to the meeting by myself. This particular support group used a conference room in a hospital for their monthly meetings. Still a bit nervous, I had no doubt that I was doing what I needed to do in order to find the support I so desperately needed!! I walked into a small room with about 3 women sitting at a table. It was still a few minutes before the meeting was scheduled to begin. I believe one more woman arrived after me and then we started the support group meeting.

What a breath of fresh air!!! To sit in a room of women who all automatically “got it”, who all had some idea of what I was experiencing, and some of whom shared many symptoms with me... it was so exciting! I learned a great deal in just that first meeting. This particular group had each woman take turns (only if they chose to speak) talking about any endometriosis-related topic she wanted.

The women typically began by introducing themselves, when it was their turn to speak, for the benefit of new meeting attendees like me. Some told their “endo stories”… brief summaries of their endometriosis journeys to that point. Some talked of having trouble deciding whether to have another laparoscopic surgery or not. Some talked about prescription treatments they were on or had tried in the past. Others talked about alternative medicine (a term that was new to me at the time). It was made clear that I could just listen if I wanted to and that I didn’t have to talk.

By the time it was my turn, I was ready to talk!! I was still shy and quiet but hearing the other endometriosis patients’ stories helped me to relax and open up. I explained how I found the group, that I had talked to the Group Co-Leader prior to the meeting, and that I was very much in need of support! I explained that I had been recently diagnosed with endometriosis and was just beginning to learn about it!

The welcoming response I got from my fellow endometriosis patients was touching and comforting! I felt like I really “belonged” there and this was only my first meeting!! I was very glad I “took a chance” and “dragged myself” to that first support group meeting.

From that point on, I went to every monthly meeting I possibly could! In fact, I scheduled around the meetings as best I could. I was working many hours at the time and it wasn’t always easy to fit the meetings into my schedule. I did my best, though.

I MADE TIME FOR THE SUPPORT GROUP MEETINGS!!!

The support group taught me so much and so quickly! It was a whole new world! I didn’t feel like it was “me against the world” anymore! I finally knew the name of my illness, I was learning more about it rapidly, I got tips on finding a better doctor than the one I had at the time (which was sorely needed!), etc. I was very pleased with the amount of information and support I received at these meetings.

Most months we had 2-6 women in attendance. That was plenty! In fact, we had to keep our turns brief enough to allow each person the opportunity to talk. The meetings were 2 hours long and we often occupied the room right until it was time for us to vacate it!

Now I will fast forward a few years. I accepted a job in a new city. While the city was fairly large, I didn’t know if there would be support group available there. I was pleased to discover that there was. Unfortunately, I didn’t make many of the meetings in that city because I was working a very unbalanced schedule of 80+ hours a week (on average). I did make a couple of meetings in that city, though.

Two years later, I returned to my hometown and resumed the meetings at the location I had originally attended. The group was as warm and welcoming as ever! My work hours were cut way back and I began attending almost-monthly again.

Now I will fast forward another 3 years. I got married & moved again to a third place. This time it was not a city. The rural area where I had moved to did not have an endometriosis support group very close to where I lived. There was a support group in the nearest city AND the one I had just left. The driving distance was a bit much for me to attend either one very regularly.

I did not even know about the endometriosis support group in the nearest city to where I had moved; I found out about it later on when I had decided to form a group closer to where I lived!

So, in the course of starting up my own group... I became aware that there was an endometriosis support group in the city closest to my new home (slightly closer than the group I had just left). I spoke to that Group Leader and I contacted The Endometriosis Association’s headquarters for information on how many women lived near my rural area and whether or not it made sense to form another support group. They sent me data on members in my area and women who had contacted EA for information. Many were "on my side of town", as it turned out.

To make a long story short, I decided after speaking to the Group Leaders from the two nearest cities that it would be worth forming a new (additional) group. The Group Leader from my “new city” was very helpful!!! She gave me lots of tips for how to start a new group! She recommended an EXCELLENT class given by the local Mental Health Association called “Facilitating Self-Help Groups”.

Please see my previous posts:

Monday, August 4, 2008 Endometriosis Blog: Self-Help Groups, Support Groups, and Volunteering Follow-up

Monday, July 28, 2008 Endo Blog: What Is “Self-Help”?? What Are The Health Benefits Of Volunteering? Why Join/Start A Support Group??

So I attended the class, talked with the Group Leaders from the endometriosis support groups on either side of me, and formed a new group.

This Friday will mark my support group’s SEVENTH anniversary! Unfortunately, the other two support groups no longer meet. Like so many groups around the country, these groups decided to discontinue their meetings.

For awhile, we had all three groups active and running. It was great because I had 2 experienced Group Leaders to bounce things off of and they bounced their ideas off of me too.

The group in my “new city” closed first. I was sad to see it close. The very experienced Group Leader had stepped down to take a job out of the area. I asked one of my most enthusiastic support group members if she’d consider stepping in so that we could keep both groups active. This would give women in the area two locations to choose from. We ran in tandem for a little while but her group closed and I absorbed any interested members from her group into mine.

Awhile later, the group from my “old city” closed down as well. This was very sad for me because that group meant so much to me! There were still members in it from when I joined in 1992! Unfortunately, the remaining group members weren’t attending often enough & regularly enough for the group to stay active.

This left me with the only active group in an area covering two moderate sized cities and their surrounding areas. I was more determined than ever to attract new members and keep my group from closing down as the other two had.

I am still in touch with the former support Group-Leaders from both cities!

It has been a couple of years since then. Our smallest meetings consist of two people. Our biggest meeting ever had 15.

EVERY SINGLE MEETING IS WORTHWHILE, REGARDLESS OF HOW MANY WOMEN ATTEND!

I had a couple of “no show" meetings about two years ago. That was when I implemented a new policy that if I didn’t get at least ONE person to RSVP that she was definitely planning to attend, I would simply cancel the meeting. I learned that sitting in an empty room waiting to see if anyone will show up is no fun. I haven’t had a “no show” meeting since!! Either we get 2-5 women (at an average meeting,including me) or I cancel 24 hours in advance with the building/meeting room where we meet. Problem solved!

I encourage you to read the related posts I mentioned above. Who knows?? Someone reading this may get inspired to find a local endometriosis support group, attend meetings, OR start a group if there isn’t one that is nearby!!

I have also created a poll regarding self-help groups and support groups! Please see it in the right sidebar of this blog and exercise your right to vote for the option that applies to you!!

I hope that SOMETHING in this post, in the other two recent posts about self-help groups/support groups/volunteering, and/or in the “PART ONE” post to this one: TUESDAY, AUGUST 5, 2008 Endometriosis Blog: My Personal History As An Endometriosis Patient will be helpful to ENDOMETRIOSIS PATIENTS AND OTHER CHRONICALLY ILL PATIENTS IN NEED OF SUPPORT!!!

You may have an appropriate support group in your backyard and not even know it!!!

I will close this post with a quote that was recently brought to my attention. I believe it’s perfect for this post:

“One of the most important capabilities of community self-help groups is that ordinary people can develop such groups in their local communities when none exist, and subsequently their group usually serves as an extraordinary resource to many in that area for several years. I still find it amazing that to start a group, a person doesn't need a grant, an agency, or even an office - just the inspiration and a few other people who share their experience and hope. What significantly helps in providing such inspiration is a person's knowledge of an existing national organization or a model group, which can provide them with basic information so they don't have to ‘re-invent the wheel.’ "

This quote is attributed to E. Madara, "Mutual Aid Self-Help Group Developments” Community Psychologist, 39 (3), Fall, 2006, p. 21.

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

Endo Blog: Importance Of Listening To Your Body!!

I would love nothing more than to write a detailed, inspiring, thought-provoking article today. My body says no. So this brief post will have to do for today but I hope it sparks a conversation with endo blog readers!

I have learned the importance of listening to my body. I think this is an important lesson for anyone who is chronically ill.

Years ago, I would feel guilty when I had to slow down and rest. I don't feel that so much anymore. I have accepted the fact that I have numerous chronic illnesses and I do the best I can to manage them and be productive... but there will be days when I just have trouble functioning at a basic level.

So this quick post is about the importance of listening to your body. I have learned some hard lessons about the consequences of not listening to my body. Now I know that when my body says, "slow down and rest"... I need to listen.

So I'm going to go do that but I would be thrilled if this post can spark a conversation with others out there who know what I'm talking about. I know there are others out there because about 90% of my local endo support group members have shared with me that they have these days too.

Please share your comments on the topics of listening to your body, physical exhaustion, emotional exhaustion, chronic pain/illness, co-existing conditions, and feeling drained. I know there are readers out there who know what I'm talking about and I'd love to hear from you!

That's going to have to do it for me for now. I'm just too tired to type!

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

Endometriosis Blog: Results Of YOUR FEEDBACK On Endo Blog TOPIC CHOICES POLL!

You may or may not have noticed the poll that has been in the right sidebar for awhile now entitled: "What Endometriosis (Or Related) Topics Interest You Most? (You May Check More Than One Answer)."

Well, obviously some of you have seen it because you took the opportunity to cast your votes! Thank you to those who did vote! The more feedback I get from endo blog readers, the better I can tailor the blog to meet your needs.

HERE ARE THE RESULTS OF THE POLL ---

"What Endometriosis (Or Related) Topics Interest You Most? (You May Check More Than One Answer).":

Chronic Pain and/or Illness:
41%

Infertility and/or Miscarriage:
16%

Co-Existing Illnesses/Conditions (i.e. fibromyalgia, interstitial cystitis, irritable bowel syndrome...):
50%

Endo's Impact on Relationships:
25%

Stress and/or Anxiety:
25%

How Support Groups/Networking with Fellow Patients Can Help:
16%

Integrative/Alternative/Complementary Medicine:
33%

All of the Above:
33%

Other:
0%

While this poll is obviously not a scientific one, I think the high percentage of readers interested in Integrative/Alternative/Complementary Medicine is significant!

So, I will continue to focus in this area especially in the future. I've also made note of the interest in the other topics mentioned in the poll!

There are many things I take into consideration when deciding what to post here on the endo blog...

For example, I pay close attention to which posts get the most feedback with posted comments. I will also take into account the results of this poll. Also, I review statistics on which parts of the blog get the most clicks. The traffic monitors sometimes give me clues on how to proceed as well. All of these bits and pieces of feedback really help me to customize the blog to meet your needs!!

I really want to emphasize that your feedback on polls like this truly helps me decide what to write in the future.

So will your posted comments on this blog!!!!!

Some days I may just post what I'm in the mood to post but I always try to keep in mind what information has been meaningful to me AND to my local endometriosis support group members. This really helps me to figure out which topics may also be of interest to you!!

While feedback on posts I've already made IS VERY HELPFUL, it doesn't tell me what I may be MISSING or SPENDING TOO LITTLE TIME ON. I'm afraid I don't read minds. :) :)

Soooooo, if there is an endometriosis-related topic you'd like to focus more attention on, please let me know. Perhaps there is something we've touched on that you'd like to discuss in more depth. Maybe there is an endometriosis-related topic that you would like to suggest that we haven't talked about? The more feedback I get from blog readers the better!

I am looking forward to continuing to receive more feedback like your comments and poll results in the future. It really WILL help to shape the direction of this blog if I know what your needs are and how this blog can best serve them.

We have already spent a good deal of time discussing the "Co-Existing Illnesses/Conditions (i.e. fibromyalgia, interstitial cystitis, irritable bowel syndrome...)" category on this blog.

I DEFINITELY plan to continue to focus quite a bit on these topics as they scored highest from the readers who took the poll on what topics are most interesting or informative.

So please keep that feedback coming! It really helps guide me as I'm deciding what topics to include and how much time to devote to each.

By the way, now that the results of the poll are posted here I plan to remove it from the sidebar shortly and replace it with something fresh.

Thank you! :)

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

Endometriosis Patient Survives Yet Another Annual Exam Without Perishing On The Table :) :)

This morning's post at 11:01 AM read as follows ---

Hope to post more later. On way to GYN...

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

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EVENING UPDATE:

This morning's post had this depressing title --- "Endo blog: VERY ILL!! Hope to post later today. Check GREAT new widgets in sidebar, please!! :) :)"

What a difference a few hours can make! I am still in incredible pain but I'm feeling much better emotionally than I was earlier today! (See my comment to Alicia on this post for some insights as to factors that turned a horrible day into a great one in many ways). Alicia could cheer ANYONE up!

This morning was one of those days with a very rough start. First, I woke up feeling like I had been hit by a truck. Then, I ran around trying to get ready for my gynecologist's appointment but was spinning my wheels because I was just too stressed out to get very far. So I stole a few minutes to go online and post the sadly titled: "Endo blog: VERY ILL!! Hope to post later today. Check GREAT new widgets in sidebar, please!! :) :)" I figured the widgets might have to keep you busy since I didn't know when I'd be able to post again. (Besides, they are really good widgets. Check them out)!

Within a short span of time after I posted this pathetic sounding post (except the positive part about the widgets), supportive comments flooded in from Mckay k and from yaya (Alicia). This positive enerygy was the boost I needed to simply get out of the house for my dreaded pelvic exam and pap smear!!

At this juncture I should explain that I have two doctors who treat my endometriosis symptoms: my gynecologist who I see annually and who does my regular pap smears... and my pelvic pain specialist who does pelvic exams too but does not do my pap smears.

Anyway, today was my visit with my gynecolgist. I just love this man! He is so compassionate and kind!!! He is passionate about helping women with a whole host of issues. He listens and cares!!! I was looking forward to seeing him as a person!!!

The part I was dreading this morning when I had such trouble functioning well enough to get out of the house & was in such physical pain... was the always-scary-to-me pap smear that always hurts like "h-e-double hockey sticks"... if you know what I mean! NO doctor has ever performed a pap smear on me without me experiencing indescribable, intense, excruciating pain.

Years ago when I lived in two other cities and I had pap smears by other doctors. No one has ever done it without me wincing, jumping off the table, accidentally holding my breath (which is not good because holding your breath just tenses up muscles & things), and simply not knowing how I'll get through it!

PLEASE NOTE:

If you aren't aware of it already... speculums come in different sizes. If you, like me, have very severe pain with pap smears, I highly (!) recommend asking your doctor if he or she has a smaller-sized speculum. It matters!

So, YES, all of this pain I had during today's pap smear was with a SMALL speculum. (Can you imagine how I would manage the regular sized one)? Anyway, I knew how much it would hurt. We're talking pain beyond that with non-pap smear pelvic exams... which also are excruciating and also cause me to reflexively jump off of the exam table.

The jumping, of course, only worsens the pain but I cannot help it. It is a reflex. If anyone out there reading this has had this happen (and I know some of you "get it" because I've talked w/women in my local group who are also like this), you are not alone! I looked like a Mexican jumping bean jumping up and down off of that exam table. My poor doctor... I wouldn't want to be my doctor! I've never had a pelvic exam that was not this painful. (I've certainly had worse, with docs in my former city).

I should stop here to mention that part of why my pelvic exams with either my GYN or my pelvic pain specialist are so VERY painful is that I have numerous illnesses that affect pelvic pain/vulvar pain/abdominal pain:

+++ vulvodynia or vulvar vestibulitis I'll have to do another completely seperate post someday on the difference between the two conditions --- but one pelvic pain specialist thinks I have vestibulitis and the other one (a 3rd opinion doc) thinks I have vulvodynia... In the meantime, consult the National Vulvodynia Association for info on these --- http://www.nva.org/. Also, please note that vulvodynia is being rsearched by an organization called CureTogether. See my July 15th post on their new medical research organization for more info on them. Also refer to their website: www.curetogether.com.

+++ interstitial cystitis

+++ pelvic congestion syndrome

+++ irritable bowel syndrome

+++ ... and, of course, endo!

Since any one of the above can cause painful gynecological exams, it's no wonder that I fly off the table when the doctor does any part of the exam.

Anyway, it ALWAYS is the case for me when I have to see either of these docs for an exam (but especially if it's a pap smear day)...

I of course have my period. There is no scheduling around this. First of all my periods aren't regular enough to schedule for them. Second, even if I'm nowhere near due for my period I almost always get it on or right before my pap smear appt. It never fails! There is no sense trying to reschedule when it happens a couple of days before a pap because the rescheduled appointment would fall into the same "Murphy's Law" category and I'd get my period on whatever day I rescheduled it for.

Anyway, I finally made it out of the house (quite an accomplishment with the fibromyalgia pain that greeted me first thing this morning)! Then I drove 45 minutes to where my doc is. Then the waiting game. At I sat in the waiting room, I distracted myself by filling out the HMO update/patient info form and scribbling additional notes for the doctor on my typed-up-at-home-in-advance medical history/update.

I learned long ago with a great doctor like this who is so thorough that his form for each annual exam is detailed (about 6 pages long!) that I need to write SEE ATTACHED on the whole doctor form and bring my updated version of events with me. (I need to actually do this for all doc appointments since my meds change frequently and I keep getting new diagnoses to pass along to all my other docs so they are all on the same page).

Sooooo, I turned my things in to the receptionist: the HMO/patient form, the doc form marked SEE ATTACHED, my newest HMO card, and the typed up stuff I brought with me.

Then I read things to get distracted until they called my name. The distraction is key for me when the anticipation of a painful exam creates overwhelming anxiety and fear in me.

They called my name and took me back. I did all the "nurse stuff". (Yay... my blood pressure medication is working as my BP was MUCH lower today than it has been)!

Then the doc comes in. Now this has to be one of the nicest people I have ever had the pleasure to meet. His bedside manner is impeccable. He REALLY cares about each and every patient. He knows me very well after many years on this journey together and tries extremely hard to be gentle with the exams. He listens! He is knowledgeable about alternative medicine. He is just awesome any way you slice it. All of this does not alleviate my fear of the imminent pelvic exam... especially the pap smear part!

I fill him in on some major changes in my health (for the worse) since I last saw him. Then it was exam time. I swear to you I tried with every fiber of my being not to jump off the table. However it is an unstoppable reflex. How else to explain that I'm telling my body "stay still and it will hurt less!!" but yet I jump?!

So the exam hurt like "h-e-double hockeysticks" as always with any gynecological appt. That was a given.

Then (!!) the huge relief that it was done hit me!!! I was so happy that my annual exam (pap smear and all) was done for another year.

Oh, sure, I may see my pelvic specialist 3 times a year on top of the GYN appt I had today (give or take)! Yes, that will hurt like "hockeysticks" too! However, for me, it's that pap smear that is the hardest part, pain-wise. So once I was done with today's exam, a HUGE weight was lifted off of me!

Anyway, my annual exam (including the necessary but very painful pap smear) is history for 2008. Yay!

In addition to having that doc appointment behind me, I had the extreme pleasure of visting with my friend and fellow (local) endometriosis support group member: Alicia. Yes, I mean THE Alicia... You may also know her as "yaya" and she frequently posts comments on my blog. She has endometriosis and infertility. (Her personal blog is: http://www.yayastuff.blogspot.com/ and she occasionally posts about those topics, among others).

Anyway, seeing Alicia in person was just what I needed today. After waking up to fibro pain, after realizing that the severe Charlie horses in my left foot from yesterday were planning to stick around (!!!) and hadn't left overnight, after trouble simply getting OUT OF THE HOUSE, after a problem with my van when it was time to leave that necessitated another stop en route to the doctor, after driving 45 minutes to the city, & after enduring the exam... her smiling face cheered me right up and distracted me from my troubles. Alicia is one special lady! Today I got to meet her husband for the first time. Someday, I'm hoping to have an "open" endo meeting where spouses and significant others can attend. My group is overdue for that. In the meantime, I only get to hear about local endo support group members' loved ones in meetings, online, & by phone. So it was a treat to meet her husband after hearing so much about him from Alicia and reading Alicia's blog!

Anyway, Alicia helped me out today and basically alleviated some worries I had about the appointment. It's hard to have a pity party when Alicia's around because she is so bubbly and fun and wonderful! So seeing her while in the city was great. (By the way, I live in the sticks so all of my specialists are 45 minutes each way. That's a lot of gas money but I have to "hunt down" the docs who can handle a "complicated" patient like me). COMPLICATED. That is what my primary wrote on my chart the other day... that my case is "complicated". She meant no offense by this, of course. I AM complicated)!

Anyway, THANK YOU to Alicia (A/K/A "yaya") for brightening my day!! :) Alicia defines TRUE FRIEND!

Sooooooo, for anyone who read my depressing post headline this morning (see earlier in this post), I have updated my post's title (see above) to reflect my improved mood, relief at having exam over, and gratitude at having such a lifelong friend as Alicia who is only 45 minutes away (45 minutes which really isn't all that bad, all things considered, since I do live in the sticks).

I'm glad the appt is over!

P.S. My Tori Amos CD for 90 minutes round trip helped my mood too! Never underestimate the power of music!!

Endo Blog Spotlight: Interstitial Cystitis, Endometriosis, and Co-existing Conditions/Chronic Illnesses

*** Please read the disclaimer at the top of this blog. ***

As many of you know, interstitial cystitis is one of the illnesses often found in women who have endometriosis. Interstitial cystitis affects both men and women but there have been research studies showing a higher incidence of IC in endometriosis patients than in non-endometriosis patients.

Wow! I found a great interstitial cystitis video clip (on http://youtube.com/watch?v=myjd4UMtCfw) and I decided to include it here. It was posted on YouTube by “YourUpdate” on June 21, 2007.

Here is the description of the clip from www.YouTube.com: The Interstitial Cystitis Association (ICA) educates both patients and healthcare providers to better understand and treat people with IC. Contact The International Cystitis Association (ICA) at for info at: http://www.ichelp.org/



Another source of information on IC is the National Institute of Diabetes and Digestive Disorders and Kidney Diseases (NIDDK):

See their website at:

http://kidney.niddk.nih.gov/kudiseases/pubs/interstitialcystitis/

I had had interstitial cystitis for 12 years before finally finding a doctor who properly diagnosed me. My 4th cystoscopy (with hydrodistention) was performed while I was under anesthesia for one of my laparoscopies for endo.

The cystoscopy was done at that time because I still presented with classic IC symptoms despite 3 previous negative cystoscopies prior to my diagnosis by a different doctor. (Ironically my first 3 cystoscopies were done by 2 different urologists and my proper diagnosis was finally made by a pelvic pain specialist).

Anyway, I have a regimen that I follow and it does help. I believe I had IC for the 12 years leading up to my official diagnosis. Whether the appearance of the inside of my bladder lining changed much in those 12 years or whether my pelvic pain specialist was better at properly diagnosing IC than the urologists had been, I may never know. All I know is my IC has responded to IC treatment.

It is crucial to advocate for yourself. Like the interstitial cystitis patient in the video clip, I believe it is crucial for IC patients to “take an active role” AND to “get the correct diagnosis from your doctors”. IC is often misdiagnosed.

HINT: If you do get diagnosed with IC and your doctor prescribes medications to be instilled into the bladder, the pediatric size catheters are a 'must' in my opinion. So if you suspect you have IC and you DO end up getting diagnosed with it, just keep that in the back of your mind. My doctor automatically ordered the pediatric size for me but not all doctors may think to do this.

That reminds me… for anyone who is unaware of this, you can request a smaller sized speculum for Pap smears. Just ask your GYN and you may find pelvic exams are less painful!

Last but NOT LEAST: I found this amazing blog today on chronic illnesses. Actually I found this blog a couple of weeks ago & subscribed to it then --- BUT the IC stuff just jumped out at me today's mailing. There are just TONS of IC links near the bottom part of the (emailed via my subscription) link listed below.

http://chronichealthblog.com/category/interstitial-cystitis/

If you even think you might have IC, these links (the last link above) are worthwhile reading (I think) from what I saw when I skimmed through them. (I simply didn’t have time to read through them ALL but there are just LOADS of them)!

Follow your gut and find the medical care you deserve. After all, we ALL deserve a decent quality of life.

Let's skip past "striving to get well" and skip right to "thriving" if at all possible.

Be well!

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

Endo Blog: Holidays Can Be A Bit Challenging

As we head into a holiday weekend for those of us in the U.S., many are thinking of summer fun: barbeque cookouts, picnics, pool time, visiting with relatives, traveling, etc.

Holidays can also be an emotionally challenging, if not painful, time for chronically ill patients. Sometimes friends and relatives can have expectations of their chronically ill loved ones that are not realistic.

A chronically ill patient/chronic pain patient (endometriosis induced or otherwise) often cannot "keep up" with healthy peers on everything expected of them.

This can cause hard feelings, misunderstandings, tension, and isolation.

Some chronically ill patients push themselves HARD to "keep up" with "everyone else". Others lie low and avoid holiday visits because they find them too draining. Others are somewhere in the middle.

Self-care is very important! LISTEN to your body. If your body gives you signs and symptoms that it's hurting or tired, perhaps you may wish to modify your plans to fit your body's capabilities. Be flexible. The world will not come to an end if you don't "make everyone happy". In fact, making "everyone" happy is quite impossible. You can't please everyone.

Be true to yourself. Know your limits. Know when to quit. What fun is overdoing over the holidays and then paying for it for weeks (or more) afterwards?

Learning how to pace yourself can be a challenge. Gain support for yourself from other patients with the same or related illnesses. This can be from face-to-face support groups, emails exchanged, phone calls, instant messaging/chat rooms, message boards, blogs like this, etc. Suffering in silence isn't healthy. If you reach out to find even one person who "gets it", it will be well worth the time/energy invested.

For those of you who are about to celebrate the holiday weekend in the U.S., try to implement strategies that encourage self-care. For those elsewhere around the world (and I notice from my live traffic map that this number is growing!), it doesn't take a holiday to cause people to display unrealistic expectations of chronically ill patients. Assert yourself when needed. Being polite but firm & honest about your limitations can make things easier (or harder) in the short run, depending on with whom you are interacting. Doing this almost always works out better in the long run, though.

Don't be afraid to say "no thank you... I can't make it" if an activity is beyond your limits. You can't please everyone.

Please have a happy and safe holiday weekend and find something (just about anything) that brings you joy and do it/use it). Don't feel guilty if you worry people will "judge you".

For those who are traveling, try not to overdo things and travel safely this holiday weekend.

Self-care is so crucial to managing chronic illneses.

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

Endo Blog: This Post May Be It For Right Now, I'm Afraid... But I'll Post Again As Soon As I Possibly Can! :)

Hi all,

I have had a very busy morning posting replies to comments to previous posts. Yes, I am talking in circles! I think I am all "caught up now" on responding to Deirdre's GREAT comments. I'm pretty sure I'm also caught up with Alicia (aka Yaya). I had replied to others' comments as soon as I saw them in my inbox.

Soooo... I think I'm finally totally caught up with replying to all previously posted comments! So bring it on! :) The more comments the better!!

IF YOU HAVE POSTED A COMMENT THAT YOU DID NOT SEE A RESPONSE FOR, PLEASE LET ME KNOW!

While my illnesses do slow me down & may also keep me from replying individually to each comment, I believe I am now "caught up" on replies to reader comments. Please tell me if I am mistaken!

I need to at least take a break from posting and replying... if not call it a day for today. I'll post again when my energy allows me to. I need to pace myself. I am exhausted!!!

In the meantime, please check the archives for over a month of endo posts & comments back to them!

Have a fantastic day!!!

Jeanne

P.S. For those who have asked me for more details, I expect to hear more tomorrow afternoon about the lab results I am awaiting. (If I just post this here now, I can say it once rather than send numerous emails or have to create an email distribution list). Thank you for keeping me in your thoughts!

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

Endo Blog Spotlight: Interstitial Cystitis, Endometriosis, and Co-existing Conditions/Chronic Illnesses

Just a quick reminder to follow up on what was mentioned in the above disclaimer: The following is not intended to be construed as medical advice. Please consult your physician for treatment. The following is for informational purposes only.

Women and girls with endometriosis may also suffer from other chronic conditions. Several other illnesses have been correlated to endometriosis in various studies. I’ll mention just a couple of them here but there are others as well.

Many women with endometriosis also suffer from fibromyalgia and/or interstitial cystitis. These conditions can cause debilitating pain and can be detrimental to quality of life. Many women in my local support group have multiple co-existing conditions (that includes me)!

Here is a quick summary of two (IC and fibro) of the many co-existing illnesses that can affect some endo patients... ones that affect a surprising number of women I know personally.

Fibromyalgia patients may experience symptoms of widespread musculoskeletal pain (such as pain from head to toe). Also, disturbed sleep and severe fatigue are common for fibro patients. So is “brain fog”. Fibromyalgia means pain in the muscles, ligaments, and tendons – the soft fibrous tissues in the body. I have found numerous sources helpful for fibromyalgia information, including Fibromyalgia Network:

http://www.fmnetnews.com/.

Fibromyalgia too is often associated with other illnesses besides endometriosis and IC. One example of this is Chronic Fatigue Syndrome (CFS). CFS is another illness affecting multiple women in my endometriosis support group.

Interstitial cystitis (IC), also known as painful bladder syndrome, is a chronic, painful, inflammatory condition of the bladder wall that affects over one million people in the U.S. Although its cause is unknown and there is no cure, there are many available treatment options to help relieve symptoms. Although IC is considerably less well-known than them... it is as common as Parkinson's Disease or Type I diabetes. For further information regarding IC, I have found the ICA (Interstitial Cystitis Association) very helpful.

For IC info see:

http://www.ichelp.org/.

Research indicates that in some patients, IC itself may be associated with other diseases besides endo and fibro such as vulvodynia (vulvar/vaginal pain) --- (an excellent source of information on vulvodynia is the NVA (National Vulvodynia Association).

For vulvodynia info see:

http://www.nva.org/

IBS or irritable bowel syndrome is often common in endometriosis patients as well.

While endometriosis in and of itself can be debilitating for some patients, having endometriosis plus one or more of the illnesses mentioned above (or others I did not mention) is even more challenging still. It's a great deal to juggle!!

It is a testament to the chronically ill patients who deal with one or more of these illnesses that they are able to do the things they do! I have been truly inspired and uplifted by having the opportunity to meet and get to know other endometriosis patients who, like me, have co-existing illnesses with their endo. Networking with patients going through similar experiences can be SO supportive, powerful, and life-altering! It can lead to fantastic friendship because the illness(es) seem to generate some sort of instant bond between people who "get it" because they have lived through like experiences.

A final note... You may have stumbled upon this blog and NOT be an endometriosis patient. PLEASE feel welcome here and don't feel you need to have endometriosis to read or post comments on this blog.

Perhaps you have one of the illnesses discussed briefly in this post but DON'T have endometriosis itself. You may still learn something helpful or gain needed support from this blog! Or you may be able to share your insights with patients who share your diagnosis/diagnoses (and no, I'm not requesting marketing plugs from companies selling their wares... I'm inviting patients with illnesses like fibromyalgia or others mentioned above to join the conversation here). You may find needed support here.

So please feel welcome and at home! I intend to have plenty more posts about chronic illness and co-existing illnesses in the future!

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