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: 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.

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.

Fibromyalgia Awareness Day And M.E./C.F.S. Awareness Day

I had grand plans for how to do justice to the topic of fibromyalgia for Fibromyalgia Awareness Day. Unfortunately, I’m having a severe fibromyalgia flare and I don’t have the energy to write it. Ironic, I know. The last couple of days have been challenging fibromyalgia-wise due to sudden changes in temperature. Last week it reached 86 degrees Fahrenheit one day. This morning it was 40 degrees Fahrenheit when I got up. That kind of temperature shifting causes my fibromyalgia to flare badly. I have talked with other bloggers in the last few days who have fibro and are experiencing flares like this too.

I recommend following @fightingfatigue on twitter. Her blog is excellent. Check it out: Fighting Fatigue. Sandy has been supportive of the endometriosis cause and has been retweeting our messages on twitter. Let's support her likewise. I wish I could write more but I am totally exhausted today. Every muscle hurts. It feels like every molecule and cell in my body are talking to me... and I don't like what they have to say. So I am not going to be able to write an elaborate blog post today. It is a major effort to be at the computer at all right now.



Today is also M.E./C.F.S. Awareness Day. I wanted to mention it too. I have recently met some wonderful people on twitter who are working for the M.E./C.F.S. cause. They have also been supportive of the endometriosis cause. We have been retweeting each other's messages regarding M.E./C.F.S. and endometriosis.

Please follow @Killandra @perpetualspiral @redtoffee @runefox on twitter regarding M.E./C.F.S. (Myalgic Encephalomyelitis and Chronic Fatigue Syndrome are two names for the same condition. There is not strictly one term used worldwide).

@Killandra has a contest going on. Check it out!

Blue Ribbon Campaign for M.E./C.F.S.

I will post something at a later date when my symptoms aren't so active but I wanted to be sure to get this posted today for awareness day. Feel free too to browse through prior posts (more so on fibromyalgia than on M.E./C.F.S. but you should be able to find posts on both).

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.

"Jeanne's Endo Blog": How Acupuncture Has Profoundly Changed My Life For The Better! It Is Awesome!

Recently, I have talked on my videos about acupuncture. While I have blogged about it as well, I wanted to write a more detailed post about my experiences with acupuncture. The videos where I discussed acupuncture are in Vlog #3 and Vlog #4. You can see them in this blog or on my YouTube Channel. (I would just love ratings/comments on YouTube)!

Anyway, today I'd like to write about something that has brought me more peace and pain relief than just about anything else out there:

ACUPUNCTURE

For about 8 years now, I have had the pleasure of receiving regular acupuncture. This post is long overdue. I have gone over and over (in my head) how to best do justice to the profound benefits I have obtained from acupuncture. Today, I finally decided to jump in and try my best to explain why I love acupuncture so very much!!



First, here's a bit of background. When I was first diagnosed with endometriosis in 1992 and joined a local (in-person) support group, there was a woman in the group who raved about how amazing acupuncture was and how much it helped her. She could not say enough about it. (Oh, how I look back now and wish I had really listened to her)! Anyway, the picture in my mind (then) of acupuncture was scary... having needles "injected" (my mental term for it at the time when I didn't understand it) when I was already in so very much pain sounded like the last thing I wanted to do! So I did not try it. (I now regret this deeply).

Fast forward a few years and several surgeries. I was very, very sick and in incredible pain. I was willing and open to trying just about anything (within reason) at that point to get any relief whatsoever. A friend suggested acupuncture and referred me to an acupuncturist she highly, highly recommended. She urged me to check it out and she was convinced it could/would give me some relief for symptoms of my, by then, numerous chronic illnesses.

So after initially (in 1992) being apprehensive about acupuncture (because I was afraid the needles would hurt), I was now more open to the idea (by the year 2000). I called with questions... still a bit unsure about the whole thing. He could not have been nicer or more patient with my questions. So I decided to give it a try.

Here are 3 sizes of Japanese-style acupuncture needles:



Do you notice how the silver part attached to the colored plastic ends is so thin you can barely make it out?

My acupuncturist uses Japanese style needles (flexible and very thin). They don’t hurt me and I have EXTREMELY sensitive skin (thanks to fibromyalgia, neuropathy, allodynia, etc.)

I recently asked him some questions about the type of therapy he uses. (I know there are varying types of acupuncture). He uses Japanese acupuncture: a combination of Manaka and Meridian therapy. He attaches these little alligator clip things that facilitate the flow of qi (meaning energy) through the body. He also, on occasion, uses a FAR-infrared light over certain areas (as needed). This special lamp is supposed to simulate moxibustion. I love this lamp! It is nice and warm and it really helps my fibromyalgia pain.

I see numerous specialists for a wide variety of chronic illnesses. With no disrespect to my other doctors, my acupuncturist has helped me more than all of my other doctors combined!

Rather than focusing on just one symptom or organ of the body, he treats the whole person. He has treated numerous symptoms and/or illnesses of mine. The number of symptoms (of many illnesses) that he has been able to help me with is nothing short of incredible.

He has helped me with SEVERE post-surgical complications that no one else could help me with.

I have found his gentle approach to be highly relaxing. I have even fallen asleep during acupuncture sessions! Due to my fibromyalgia and sleep apnea, I don't get restful sleep (as in ever). In fact, the sleep disorder clinic that diagnosed my sleep apnea said that I never entered the restorative sleep phase at all! (No wonder I'm so sick). I am still struggling to be able to use my CPAP machine for the sleep apnea (see post from earlier this week for more about the apnea but I had another reaction to the headgear this week). Anyway, my point here is that acupuncture relaxes me better than ANYTHING!!! The rest I get at acupuncture is better than a full night's sleep for sure!!

Here's what I often picture when an acupuncture session starts and I'm still fully conscious:



I have been a patient of his for about 8 years now. I look back and can't believe how much it helps. Does it cure my illnesses? No. Does it help more than any other one thing out there? You bet!

In summary, I discovered that taking a chance to try something I was initially nervous about really paid off! Once I tried acupuncture and saw how beneficial it is, I became a regular patient. Since it has been so helpful for me, I have referred many others to him. I facilitate an endo support group and have told my fellow support group members about his gentleness and effectiveness for a wide variety of symptoms. I haven’t had a single person try it and come away dissatisfied. In fact, I have had several group members try it and tell me how helpful they found it as well. I am very grateful to have such a highly trained and skilled acupuncturist in my area. I cannot say enough about acupuncture.

When I had a surgery that did NOT go well last January, it was my acupuncturist that took me from the worst pain of my life and inability to walk on my own to walking out independently an hour later. My husband had to help me in to the first post-surgical appointment after a nerve-cutting surgery gone wrong that I had put off for 4 years. (I'll have to write about that surgery another day).

Anyway, I had phantom pain post-surgery from the nerve-cutting. (This is the type of pain that affects amputees but can also occur following nerve-cutting surgery). In the past year, I have lived with post-surgical pain I could not have imagined before my January 2008 surgery. The neurologists (plural) seem to think that this pain will be a life-long problem for me. A year later, it is extremely difficult for me to exert enough pressure to shave my leg because the area affected by the nerve-cutting makes even light pressure almost unbearable. If it were not for my acupuncturist, I don't know how I would have dealt with the type of pain I had last January. Back then, taking a bath was impossible because the water against my leg hurt too much. It was just terrible.
After 7 surgeries, 11 kidney stones, cancer removal/appendectomy, bowel resection, 4 cystoscopies, 3 colonoscopies, etc... none of these matched the pain following last January's surgery. I still struggle every day. Every blog post I write requires breaks to get up and stretch because sitting aggravates the pain. Driving is still a challenge. Sitting normally is tough. When at the computer, I sit in a leather office chair with BLANKETS on top of it for cushioning and I still get very sore from sitting.

He hasn't cured the surgical complications. (Nor would it be fair or realistic to have expected this!)

However, he greatly reduced the worst pain of my entire life over the past year (bit by bit). I owe him a debt of gratitude I will never be able to repay.

Here are some books and websites that my acupuncturist recommends...

"The Web That Has No Weaver: Understanding Chinese Medicine" by Ted J. Kaptchuk O.M.D.

"Japanese Classical Acupuncture: Introduction to Meridian Therapy" by Shudo Denmei, translated by Stephen Brown, C.A.

Acupuncture Today

Acupuncturist Locator

This is a helpful resource for acupuncture:

National Certification Commission For Acupuncture And Oriental Medicine (NCCAOM)

(NCCAOM’s online directory is designed for individuals seeking practitioners who meet national requirements for board certification in Oriental medicine, acupuncture, and Chinese herbology. These practitioners have met all requirements for NCCAOM certification in the specific program area).

If you have any apprehension or reservations about trying acupuncture at all, please let me know. I'll be happy to help you in any way I can.

Are you concerned about cost? Please see below!

For those of you who do not have acupuncture coverage through health insurance, I strongly encourage you to read the comments exchanged between "Liberty" and me (see the exchange in the blog comments in the link below). It explains how my (uncovered) acupuncture easily pays for itself... literally!

What about the cost of acupuncture?

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

Endometriosis Blog: SEVENTH Anniversary Of My Local Endometriosis Support Group!!!

On August 8, 2001 we held our first local endometriosis support group meeting.

Prior to the meeting, I had done various things to create awareness about our new group.

I hung fliers in various places (the library distributed it to every library in the county and even hung them up for me!), notified the nearest city's major newspaper to have my group added (for free since we are a nonprofit group) to their health calendar, distributed brochures to my doctors' offices, & called women whose contact information I had gotten from The Endometriosis Association (which I was able to obtain by applying to be an Endometriosis Association support group leader, getting approved as one, and agreeing to keep women's contact information completely confidential.

When I called the women on the Endometriosis Association list, I received a warm welcome. I told them about the new group and asked them if they'd like to be added to my email mailing list. Most said yes.

I used email (with a distribution list to save time and send one email to the entire email mailing list). I used email to send meeting times, location, and directions to our meeting place.

Once I had made calls to everyone on the list, I had about 23 women signed up for the notification emails. Today my email mailing list has grown to 42 women. Many support group members don't generally make it to meetings but like to get the emails to stay in the loop about endo. Occasionally I send out info on endometriosis research and links to endometriosis sites.

In the last 7 years our group has been busy:

+ Our support group was featured on the local news

+ We (some group members) emailed a major newspaper that had written false and misleading comments about fibromyalgia

+ We shared information regarding hormone replacement therapy

+ We shared information about local physicians

+ We learned of a national news story regarding disability claims

+ We shared information about other local support groups that serve the needs of our endometriosis support group members (an infertility group, an interstitial cystitis group, and a fibromyalgia group are all available in our area)

+ I emailed a link of a radio program regarding interstitial cystitis for those group members who were interested (an excellent radio program!)

+ I passed along online newsletter from the Interstitial Cystitis Association

+ We shared information about making medical exams easier (especially pelvic exams)

+ We shared information about physical therapy for pelvic pain... (Contact The National Vulvodynia Association (http://www.nva.org/) to see if your area has this type of specially trained physical therapist

+ We learned of a website about adhesions

+ We shared information about medical research studies being conducted in our community (for endometriosis and fibromyalgia)

+ We shared information about the dangers of some health & beauty products (for everyone!) - but especially women with endo (see the following website for more information: http://www.cosmeticsdatabase.com/splash.php?URI=%2Findex.php)

+ We learned about a "last resort" surgery called presacral neurectomy from a group member who had the surgery

+ We merged 2 support groups

+ We got local TV stations to agree to air endo public service announcements

+ We generated awareness about endometriosis in our community

+ Occasionally group members even brought snacks to meetings!

+ We held a fundraiser and gave 100% of the proceeds to The Endometriosis Association (with the money we raised earmarked specifically for endo research)

+ We learned that many group members have vulvar vestibulitis or vulvodynia and that many group members get terrible migraines

+ We shared information about breast cancer (melanoma, ovarian cancer, and breast cancer are more common in endometriosis patients than in women who do not have endo)

+ Some group members signed a petition objecting to "drive through mastectomies"

+ We learned of 2 websites... one about alternatives to hysterectomy and the other to support women who had gotten a hysterectomy

+ We had guest speakers speak on nutrition, relaxation techniques, Chi Nei Tsang, acupuncture, endometriosis (a gynecologist gave a fantastic presentation!), environmental concerns specific to endometriosis patients, etc.

+ A group member shared a recipe book that might be helpful for endometriosis patients

+ We organized an email campaign to FDA - to request labeling and eventual phase out of PVC and DEHP from medical devices

+ Group members supported each other during difficult times (such as surgeries)

+ We shared info with each other regarding infertility HMO coverage

+ We donated a copy of The Endometriosis Sourcebook to a public library

+ We connected group members who had similar symptoms to one another so that they could support each other and exchange information

+ We learned of a study showing that chronic pain can alter the brain

+ We discussed co-existing illnesses extensively since many support group members have other illnesses besides endometriosis (ones related to endo)!

+ We shared information regarding a drug recall that impacted some of our group members

+ We shared information on books that group members found helpful

+ We supported patients who experienced miscarriage and infertility

+ We discussed prescription treatments, surgical options, and alternative medicine modalities

+ We created a website with information pertaining to the local support group (directions to the meeting location, a meeting calendar, links to relevant websites, etc.)

+ We shared links to news stories we'd seen on TV or in print

+ Patients have gotten connected with each other between meetings to discuss one patient's vestibulectomy (while another patient was trying to decide whether to have this surgery)

+ We LISTENED to each other!

***UPDATE***

RELATED (PREVIOUS) POSTS LINKS TO THIS ARTICLE INCLUDE:

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

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

Tuesday, August 5, 2008 Endometriosis Blog: My Personal History As An Endometriosis Patient

Thursday, August 7, 2008 Endometriosis Blog: How Finding The Endometriosis Association & Participating In Endometriosis Support Groups Helped Me & Made Me A Volunteer!!

I'll end this post with a quote regarding support & self-help groups:

"Mutual support groups, involving little or no cost to participants, have a powerful effect on mental and physical health... The psychological and physical health importance of this diffuse community is striking... The self-help movement, both in face-to-face and virtual arenas, has tremendous therapeutic potential."

From American Psychologist feature article "Who Talks?: The Social Psychology of Illness Support Groups" by K. P. Davison, J. W. Pennebaker, & S.S. Dickerson, (55) 2, pp. 205-217, 2000.

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.

--------------------------------------------------------------------------------

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.

+++++

Launch of Polish website on vulvodynia:

+++++

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 Guest Blogger: One Brave Woman's Struggle Coping With Endometriosis... Melissa Ralston's Letter Of Intent To Do Battle! (UPDATED)

Please meet today's endometriosis Guest Blogger...

Melissa Ralston!

Melissa Ralston is a registered social worker with a degree in social work, psychology and several counselling certificates; a mom; and a fellow endo survivor of 18 years. She has led a Yahoo Support Group called "Goddesses of Endometriosis" for the past 7 years, providing emotional support and educational services on the topic of endo and available treatments.

Melissa started her endo symptoms when she was 12 years old, however despite persistent complaints to her doctor, was not treated adequately for this disease. Melissa did not receive a diagnosis of endo until her left kidney went into failure due to strangulation caused by the endo growths, and had to have surgery to remove the growth. Following the diagnosis, and while she was experiencing early miscarriage after miscarriage, Melissa had seen no less than 7 specialists, who offered no effective treatments other than "having a baby if she were married, but since she wasn't, a hysterectomy could be done". After a failed round of Danazol, followed by more birth control pills which never helped, Melissa found an endometriosis specialist on her own. Melissa was lucky enough to conceive and carry to term, and received her second lap within 3 months of her son's birth, during which she also received a diagnosis of stage 1A endometrial cancer. Melissa has survived the devastating effects of losing a job based upon her health status, having her relationships destroyed, as well as putting up with severe reactions to many of the medications that she has been on for treatment.

Aside from endo and cancer, Melissa lives with fibromyalgia, rheumatoid arthritis, inflammatory bowel disease, migraines, and asthma, many of which co-exist in many ladies living with endo.

EDITOR'S NOTE:

I have had the privilege and honor of getting to know Melissa over the past few months through extensive communications via email and Facebook. Like so many endometriosis patients, she has been through great adversity. Melissa has shown great leadership and has supported the endo cause a great deal. Her sense of humor and positive attitude often leave me chuckling. Her emotional journey is compelling. Even more compelling is her positive outlook and hopeful attitude that endo cannot and will not defeat her or take away her hope. Melissa inspires other chronically ill patients!

Melissa's online support has helped a great number of endometriosis patients.

Here is Melissa's letter to her endometriosis!

Dear Endo Cells,

This is your official notice that I have had it up to HERE with you. For far too long you have been causing me nothing but pain; physically, socially, and emotionally. Luckily you haven’t caused me financial ruin as I do have top of the line pharmaceutical coverage, although you have made it difficult for me to work at times. I am here to say that I am no longer going to let you get away with the path of destruction you have left in your wake.

From the time I was just a “baby” of 12 years, I have felt your unwavering disruption to all that is joyous in life. You destroyed my blood counts through the intense, prolonged bleeding “cycles”. The birth control pills that were prescribed to “regulate you” seemed to have no effect on you whatsoever. Week after week I would find myself at the ER, to the point where I believe I had frequent flier miles, if not at the very least having my file labelled as a drug seeker. However, even the best pain drugs out there that they would prescribe would still leave me in pain. At one point, you were still causing me pain despite taking Percocet every 4 hours, long-acting morphine every 12 hours and Demerol every 6 hours for the “breakthrough pain”. Is there even such a thing as “breakthrough” when the pain doesn’t go away to begin with?

I’ve done multiple pharmaceutical treatments to get rid of you. You tricked the birth control pills, every brand that I’ve tried that is, still continuing to cause me pain and heavy bleeding.

You didn’t like the injection of Depo-Provera, so much so that you decided to cause me to have convulsions, mood swings, severe depression, heavier than even heavy blood loss leading towards blood transfusions, all of which ended with me having my first of several "D&Cs", all in the name of trying to get rid of you. I did two rounds of Danazol, which helped to slow you down a bit, but in the end it appears to have led to the onset of fibromyalgia. Who knows maybe I was also destined to have fibromyalgia appear at some point in the future. I have tried the NuvaRing, which only lasted a few hours before you rejected that treatment completely. At least it was a quick decision. I had a Mirena inserted, you still decided to bleed every day for 6 months and then decided to have regular cycles anyway. I added the Arimidex and Micronor to the mix, you still decided to be hormonal pain in the butt by not responding to three medications all used at the same time. Because of these treatments, my risk of cancer has been raised, especially since I already do battle against endometrial cancer. You have also decided that you hated my left kidney and killed it by cutting off the blood supply. Thanks again. At least when you attacked my kidney you made the doctors sit up and listen and I finally had a name to call you other than hell.

[Editor's Note: Here is some information regarding how endometriosis can affect the kidneys in some patients]... See NDT: Nephrology Dialysis Transplantation.

You have devastated my dreams of a large family, leaving me with only the hope of the possibility, however slim, of having one more child. You have found me pregnant quite a few times, but with the exception of my beautiful Jacob, you have taken those away from me. It’s a pain that I will never get over, however it is easier to get through over time.

You have caused me great emotional pain. When you are a young teen, you want to fit in more than ever with your peers. However when you have to take days off school at a time, every month, this doesn’t bode well for friendships. You want to be able to go hang out with your friends, but when you’re exhausted and in pain, the only place you end up going is bed. You have seen many boyfriends come and go, unable to withstand the fear of someone they love never getting better, or the burden that our caregivers go through. You have met with several doctors, prior to finding the great knight who is determined to slay you. These doctors all suggested pregnancy, but with you endo, pregnancy appears to not want to stick with my body. Many times I’ve been tempted to have a hysterectomy just to cut you out of my life, however I know now that it’s not likely to help me out oh so much considering you’ve attacked my bowels and bladder. I’ve had you cut out of my bowel, but you make a sneaky return. I’ve had you cut out of my bladder, but the real issue might be your counter-part, interstitial cystitis. I used to have more bad days than good, and that made me one very sad lady.

I’ve taken the few gifts that you’ve given me; experience, knowledge and a driven desire to kick your butt and used it to help others. For the past 7 years I have run a support group for women with endo called Goddesses Of Endometriosis. Close to 1000 members and still growing, I have been able to use your negativity towards doing good, helping others to battle this disease at where they are at on their journey. You have allowed me to meet, educate and receive wonderful thank you notes from women all over the world. For this I am grateful, as helping others helps me at least feel like I’m contributing something towards getting rid of your existence. The website is: Goddesses Of Endometriosis.

I am now embarking on my next journey with you, trying to conceive another child with my partner. Leaving the medications behind has reminded me of just how much I dislike you. But I am determined to continue on with my life, with or without you. I am not going to let you destroy my dreams of one day completing my Masters and going into private therapy practice. I am not going to let you destroy my desire to have a happy family life. You may still make your annoying self known to me, but the only way you might limit me is physically. I am not your emotional and social hostage.

Sincerely,
Melissa Ralston
Leader of Goddesses Of Endometriosis (Yahoo Support Group)
Site for this group: Goddesses Of Endometriosis

EDITOR'S NOTE:

I thought Melissa's story of courage and hope would be the perfect way to round out the year.

Happy New Year!

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UPDATE:

Melissa started a new endo blog tonight and I just had to update this post to reflect it!

Endometriosis: Facing the Battle Head-On


See my blog roll entry titled:

A New Blog -- "Endometriosis: Facing the Battle Head-On"... {{{{{ NEW BLOG AS OF 12/31/2008!! }}}}}

%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%
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: Spotlight On The Interstitial Cystitis Association!!

Since so many readers of this blog have interstitial cystitis as well as endometriosis and since the illnesses have been correlated in studies, I would like to spend some time today on interstitial cystitis.

Founded in 1984, the Interstitial Cystitis Association (ICA) is the authoritative source of interstitial cystitis (IC) information in the United States.

The ICA:

+ Provides the most comprehensive & up-to-date information on IC

+ Offers IC patients, their families, and friends support

+ Educates the medical community and the public about IC

+ Represents patients and advocates for research funding

+ Provides pilot research funding to find effective treatments and a cure for IC

Since I'm on the email list for The Interstitial Cystitis Association, I receive wonderful updates on interstitial cystitis on a regular basis. The one I just received, however, is special enough to warrant some extra attention. It is full of information on what's happening in the interstitial cystitis world.

I'll include the link to it in a moment but first I'd like to explain a bit about my personal experience as an interstitial cystitis patient. As an interstitial cystitis patient... I know firsthand the unbearable pain it can cause! I also know that it's often misdiagnosed or under-diagnosed. (It took 12 years and 3 urologists telling me I didn't have interstitial cystitis for me to finally find a pelvic pain specialist who said, "you definitely do have IC"!)

The interstitial cystitis treatment regimen he has me use isn't always super-convenient but it is well worth the effort because it really reduces the severity of my symptoms significantly!! (In addition to taking an oral prescription that reduces my symptoms, I self-catheterize at home to administer what's called a 'bladder instillation'. Essentially, the medications (there are two of them) that are instilled into my bladder (temporarily) are helpful for me for controlling my symptoms (in combination with the oral medication therapy).

Annual Report of The International Cystitis Association: A Year of Transformation

http://www.ichelp.org/Portals/0/AnnualReports/2007AnnualReport.pdf

In this report, you'll hear that there has been a "changing of the guard" at ICA:

Vicki Ratner stepped down and the ICA welcomed a new Executive Director. After almost 25 years as the ICA’s guiding force, Vicki Ratner, MD, stepped down from her positions as ICA President and Chief Medical Officer. The ICA is profoundly grateful to Dr. Ratner for her tireless efforts on behalf of IC patients worldwide. Her work has had direct impact on the quality of life for all people with interstitial cystitis.

Barbara Gordon, MBA, RD, is the new ICA Executive Director. Drawing upon a wide range of healthcare and managerial experience, as well as a deep understanding of the special challenges confronting people who suffer from chronic diseases, Gordon fully embraces the goal of the ICA to give hope to countless interstitial cystitis patients around the world.

Several themes emerged in the International Cystitis Association's report.

These are some of the words they used regarding the past year for ICA: transforming, embracing, advocating, increasing awareness, empowering, appreciating, ensuring...

Research programs---

Some key points made in the research report cited in the above link include:

+ Research confirmed that IC doesn't travel alone, and that patients often have other problems such as irritable bowel syndrome and fibromyalgia.

+ Researchers explored the cost of IC and found it to be much higher than that of many other chronic illnesses such as peripheral neuropathy, low back pain, fibromyalgia, or rheumatoid arthritis.

+ Many innovative treatments for IC were further developed this year. Oral medications, bladder instillations, external and internal stimulator devices, and hands-on interventions advanced along the pipeline, all with the potential to provide better IC symptom relief.

Personal Impact:

Researchers from the National Opinion Research Center (NORC) at the University of Chicago presented the first results from the NORC/ICA METRIC epidemiology survey at the American Public Health Association’s 135th Annual Meeting and Exposition in Washington, DC.

The study was based on nearly 3,000 responses to a 28-page survey that gathered information on IC patients’ life experience.

The study found that:

40 percent of respondents reported low self-esteem as a result of IC

42 percent believed that IC caused them to “miss out on life”

31 percent admitted that IC led them to have suicidal thoughts

22 percent noted that IC has caused them to lose close, meaningful relationships

66 percent said IC had negatively affected intimacy

71 percent noted pain during sexual activity

Patients Have Record Impact on Capitol Hill:

“Because of the efforts of IC patients, policymakers on Capitol Hill are recognizing and more aggressively addressing the challenges chronic pain patients face from a fractured healthcare system that limits access to the multimodal therapies patients need and from the Social Security Administration’s bureaucracy in granting disability benefits. Our advocates have also helped legislators recognize the need to influence the direction of federal research so that NIH is investing in future therapies and cures for these intractable conditions,” said Government Affairs Consultant Libby Mullin.

Here is the contact information for the ICA:

Interstitial Cystitis Association
110 North Washington Street
Rockville, MD 20850
800-HELP ICA (800-435-7422)
www.ichelp.org

Thank goodness for all of the great work this organization does. It helps so many people!

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.

No More Abscess. Tooth Extraction Itself Went Well. Going To Go Rest Now. (UPDATED: My Nitrous Nightmares)...

I am very grateful my abscessed tooth was successfully extracted this morning.

The nitrous oxide had no effect on me whatsoever. Zero. The first batch of Novocaine didn't quite do the trick. The 2nd round of Novocaine helped. It went quickly and I'm glad it's behind me.

I'm going to go and lie down to read a book! I hope everyone is getting some rest with the holidays!

Take care! :)

P.S. If you are looking for something more to read, check out my holiday posts preceding this (including comment sections). We had an interesting power outage on Christmas Eve! :)

UPDATED at 5:46 pm:

I just woke up from about a 2.5 hour nap. When I tried to read, I got sleepy and decided to put the book down for a minute to rest my eyes. That is the last thing I remember. I woke up having had numerous, vivid, frightening nightmares.

Just some background... I have sleep apnea and fibromyalgia. I never get good quality sleep. When I had my sleep study to diagnose the obstructive sleep apnea, they said I got ZERO of the "restorative sleep" phase!

I haven't used the CPAP machine lately (used to treat sleep apnea) because it's impossible to use my machine when I have a bad runny nose (which I have had).

By the way, the oral surgeon confirmed my suspicion that the abscessed tooth and sinus problems/other symptoms I have been having could definitely be related.

I'm grateful my "regular dentist" put me on antibiotics a few days back for the tooth infection.

Anyway, I haven't had a "good night's sleep" in... well, in my whole life actually. Even as a kid, I never got proper sleep. I've spent my life needing people to wake me up. Sometimes a ringing phone works. Alarm clocks barely ever work (even the loudest ones they make).

When I lived alone after college, I had FIVE alarm clocks and still had a hard time getting awake on time to get ready for work.

I hardly ever, ever dream or have nightmares. Today I had several scary nightmares.

With my fibromyalgia, I don't get high-quality sleep either.

The fibro and sleep apnea were only diagnosed in the last few years but my trouble getting good sleep goes way back.

Anyway, nitrous oxide (aka laughing gas) was no laughing matter for me!!

It gave me zero effects during the dental appointment (see above). There was nothing positive or negative. The air entering my nostrils just seemed like when regular air gets pumped into them during CPAP at night to treat my sleep apnea. I would have sworn they accidentally gave me plain oxygen... before waking up from that awful nap.

They gave me nitrous oxide alright! I just searched the Internet. While it appears to be a less common side effect of nitrous oxide, I am not the only dental patient to have had nightmares after nitrous oxide. (I would include links about nitrous oxide but I didn't even finish reading the links myself yet... I just did some speed-reading, saw that others have had nightmares from it and started this post).

Anyway, the way nitrous oxide was described to me by multiple sources beforehand (including the dental assistants today) was that "people love the feeling", "it's relaxing", "it takes the edge off", etc.

With nitrous oxide (at least in my case) you do stay awake during the procedure but it is supposed to make it easier for certain patients than just having Novocaine alone.

I am NOT one of those certain patients!! These nightmares were really bad. I am so glad to be awake. I'm so glad they were just nightmares and not really happening. (One example of a nightmare I had was a scene that was similar to but far, far scarier than a very, very graphic Grey's Anatomy episode where everyone is standing around in scrubs and then bad things happen).

Let's just say I am not one to be phased too much by the sight of blood but this nightmare was more than I could take without getting really upset before waking up suddenly.

I never want to go through that again!

As I said, most people who have nitrous oxide (apparently) find it helpful and pleasant. I had no reaction at all when I needed it and the nightmares afterwards (just now) were just plain awful.

While my reaction may not be super-common, it does happen or I wouldn't have gotten the Google hits I did from pharmocology articles.

Let's just say that I couldn't leave this post as initially written and felt compelled to write this update. Many endo patients I have met are more sensitive than most to various chemicals. Many other chronically ill patients are extra-sensitive too. Clearly I am one of those sensitive individuals.

I'll take low-quality sleep with no dreams and no nightmares over what I just experienced any day.

Please pray that when I go to sleep tonight this will not happen again.

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

"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.

I'm Still Offline To Rest But I Wanted To Send You A Great Link To A Fellow Blogger Who Wrote About The Exploitation Of Endometriosis Patients

As I mentioned in my previous blog post, Saturday, January 31, 2009 "Jeanne's Endo Blog" Is Offline Indefinitely (Starting Now)..., I need to slow down on blogging for awhile and get some rest!!

For now, I wanted to post a brief update about my health situation.

While I'm online, I also wanted to give readers a link to a great blog post written by Melissa Ralston regarding the topic of exploitation of patients. This is a hot topic because there are so very many scammers going after chronically ill patients and health bloggers. Melissa's post talks about this troubling situation regarding endometriosis scammers.

Sadly, while I have been trying to rest up, the scammers are as busy as ever. One of them posted anonymously to my blog with comments that I have no intention of publishing!! These comments mentioned fibromyalgia and endometriosis.

All chronically ill patients and all health bloggers are potentially vulnerable to scammers who exploit patients and bloggers.

The comments posted to my last blog post were regarding a "treatment center" that I will not name. I'll just call it "treatment center" in place of its name because I'm not going to promote it by even typing its name on my blog. In other words, I won't even type the name of it to complain about it.

This commenter started by telling me (the capital letters below were theirs):

"BE SURE TO RESEARCH AND GET THE FACTS STRAIGHT"

The tone of the comment posted to my blog was essentially that I need to do my research and not be one of the ones who is stealing people's hope from them by steering them away from this "treatment center" that they were raving about.

So the implication here is that if I don't publish their anonymous comment singing the praises of this "treatment center", then I'm going to join the rest of the people who they claim are stealing people's hope by discouraging them from seeking treatment at this "center" making such outrageous claims.

I would like to go on record as saying that I don't advise people on where to get treatment for any of their illnesses. I have never advised patients where they should or shouldn't go for treatment for any conditions.

This commenter's remarks were written as if I need to "do my research" and proceed to publish their comment raving about this "treatment center"... or risk being responsible for people losing hope and committing suicide! (Read on to see their troubling comment about suicide).

Again, these inflammatory comments were posted in reply to my previous blog post about being very sick!

Here is another snippet from the anonymous commenter to me:

"If you are too sick or too weak, (I hope and wish you well) Perhaps you can ask a close friend or family to help you with this."
-- Anonymous blog commenter

Did they read my last blog post that said my husband was helping me out by moderating comments while I was sick and think that maybe he'd just blindly post their comment? This commenter went on to advise me to follow his/her directions and check out this "center". Read what he/she said:

The doctor's at the ["center"] are saving lives. Don't let the others steal your hope. Many are truly well and this could be you too.

It saddens and angers me that there are companies and individuals out there exploiting patients and promising unrealistic treatment results for chronic illnesses such as fibromyalgia and endometriosis.

The person or center that posted to my blog on February 6th had the gall to try to turn people who have spoken out against these scammers into the "bad guys" by suggesting that these brave people (who have spoken out against those who exploit patients) are responsible for patients committing suicide!

Here are 2 more phrases from the anonymous comment I will not be posting:

The comment posted anonymously to my blog on February 6 that was in support of a "treatment center" went on to claim:

"people come in wheelchairs and leave walking and dancing"

This same anonymous comment stated:

"lies are being spread and people are committing suicide because of lost hope"

This last portion of the anonymous comment appalled me. This commenter basically insinuates that anyone who speaks out against this "center" is somehow responsible for people committing suicide! (To be clear... the "people are committing suicide" comment does not refer to any specfic people. This statement is just haphazardly thrown out there by this commenter to my blog).

I want to be clear that I know of no one committing suicide or thinking of committing suicide. This inflammatory remark by the commenter is part of the twisted effort to promote this "treatment center".

I've seen a lot of scams regarding chronic illnesses since I began blogging last June but this is especially upsetting. This anonymous commenter is using the word suicide in an effort to get people to seek treatment at this "center"??!!?? This is totally outrageous!

If you are confused, trust me, you would still be confused if you read the entire comment posted to my blog.

For those who did not have the benefit of reading the entire comment, let me just put things in context and say that I am aware that many patients have reported this "treatment center" to authorities and that the Attorney General of the state which hosts this "center" has apparently done some investigation into this place of business. I do not know the current status of the "center" legally. I just know that many patients have complained about it.

Having read the entire anonymous comment posted to my blog and having concluded that there is no way I will post it to my blog... even to rip it apart, let me just say that this commenter would have me and my readers believe that there are people who are keeping patients from obtaining treatment at this "center" and that these patients' lives are being put at risk (of suicide) by those who are speaking out against the center!!

I know this is confusing because I'm quoting snippets of the anonymous comment. I apologize for the confusion but there is no way I would feel comfortable publishing the comment. So bear with me.

The bottom line is that I do not know how some people sleep at night!

It is bad enough when scammers try to fleece people out of their money by scamming them with "treatments" that are talked about as virtual cures. That is shameful enough! But to go around posting comments on people's blogs about suicides? It is beyond the pale. For someone to try to use my blog to get people to seek treatment at this "center" by implying that suicides are happening due to people being stopped from seeking treatment at this "center" is just mind-boggling to me.

The bottom line is that this very inappropriate comment was posted to my blog, I will not publish it, and I am sharing this story with all of you so that you can be on the lookout. If any person or "treatment center" approaches you or your blog with wild claims about leaving your wheelchair to go dancing, please be aware that some people will say anything to make money.

I can't tell you how upset I was about this comment to my blog. In my experience, anytime a scammer like this approaches me, he/she usually approaches my fellow bloggers as well. So please be aware that there are some very unscrupulous people out there!

MY UPDATE:

I am not sure when I'll be able to get back into the swing of things but I am still very exhausted and I still need more time. I'm still not going to be communicating via the many methods I usually do.

As some of you are already aware, last Friday night I had an adverse (allergic) reaction to a medication that I was taking and the on call doctor last weekend told me to go to the emergency room. The drug reaction was potentially fatal and last weekend was scary... but I made it until Monday morning when I talked to my regular doctor and we figured out what I should take in place of the drug I reacted to. Thank goodness for Benedryl! My doctor called in a prescription to replace the one I had discontinued and my body is getting acclimated to that.

I have been overdoing things, to say the least, for some time now and this wakeup call has forced me to step back, slow down, and recognize the importance of rest. Too many insomnia-induced all-nighters culminated in a very unpleasant weekend last weekend. While a drug allergy is what finally forced me to slow down, my body is unhappy with me for other reasons. I have not been getting enough rest and my body told me so this past few days in ways that could not be ignored.

For example, my body let me know it was ticked when I slept until 2:00 pm one day this week. (The only reason I even woke up then was that I had asked my husband to call at 2:00 to make sure I had woken up. As it turns out, I had not)!

In any event, it's going to be a bit before I'm back to blogging very much. I still have comments from a couple of weeks ago that are not yet moderated or replied to. The only comments that have been posted were to my last post before this one.

MELISSA'S ARTICLE:

I would like to ask readers to check out a very important article on Melissa Ralston's blog... Endometriosis: Facing the Battle Head-On. The article is called "The Exploitation of Illness". It's a topic near & dear to my heart because I have seen many heartbreaking examples of patients being exploited by fake doctors, people promising "false cures", and any number of other scammers who try to make money off of patients (in this case endometriosis patients but all chronically ill patients are vulnerable to these attacks).

In fact, I was troubled to find an upsetting blog comment dated 2/6 from one of these "exploiters" posted right to my previous blog post about me being sick! (There are times I just adore being able to click on the reject button). Apparently me being sick enough to drop blogging for a bit made me look vulnerable/an easier target for them. Incredible!

I had already planned on blogging this post directing readers to Melissa's article (above) before I received email today from an exploiter who posted comments to my blog that really disturbed me. While I was hoping for a bit more resting time before writing this post, I felt compelled to get this posted in light of the fact that a scammer had the gall to post a scam comment in response to my last post. Since I was planning to direct readers to Melissa's article anyway and since I do not have the energy to write my own detailed post about the many scammers I have encountered (be they endo scammers, fibromyalgia scammers, or scammers about some other chronic illness), I decided the best way to respond to the ludicrous comment that I rejected in response to my last post would be to direct readers here to Melissa's great post which references a great article by Hans Evers of the World Endometriosis Society.

Again, endometriosis is just one chronic illness that can make patients vulnerable to scam artists. Anyone with a chronic illness should stay skeptical, ask questions, and generally be on guard against scammers who prey on the sick.

Finally, here is a quote from within one of the sources for the article Melissa Ralston included in her blog post. I will close with this quote because it highlights the point I am trying to make... and to give credit where credit is due to Hans Evers, who took the time and energy to write about the topic of people who prey on endometriosis patients. Whether it's endo, fibro, or some other chronic illness... it is important for patients to be educated about the risks out there for people preying on them because they are chronically ill which can make them "easy prey".

"Women with endometriosis belong to a very vulnerable group, they should not be exploited".

Professor Hans Evers, World Endometriosis Society President

I would like to thank everyone who has left me words of encouragement and comfort this past week. I appreciate your support more than you know. Please keep being patient with me because I'm still on the road to recovery and need to take my time getting back into the swing of things.

Thank you to everyone for your patience! I am going to try to catch up the best I can but it's going to take some time. I have been pushing things too hard and I really need to pace myself better. My body has been screaming at me this week. I'm listening to its message. So I'll do my best to catch up without making myself sicker in the process.

P.S. I recently won several blog giveaway prizes and have not yet posted my thanks for them. I'm behind on everything. Stay tuned in a future post to hear about the great prizes that I won. I apologize for getting behind on posting these. Also, I'm sorry to Amanda for not yet posting the award she kindly gave me awhile back. I am really behind on everything but I haven't forgotten!

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