"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.

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: 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.

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 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.