Looking for Jeanne’s Endo Blog?

It has moved and gotten a new name. You should be automatically redirected in 6 seconds. If not, please visit
http://chronichealing.com
and update your bookmarks.

6/21/2008

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.

2 comments:

Yaya said...

To add to your last two paragraphs; perhaps people might stumble upon this blog thinking they have something along the lines of chronic illness, and may be wondering if they could have endometriosis or not, since it's so hard to diagnose. Thank you for the continuous valuable information you provide for us with chronic illnesses. Your research does not go unnoticed!

Jeanne said...

Alicia,

You always have such nice things to say! Your positive spirit and resilience in the face of adversity are exactly the type of thing I've been talking about on this blog. Meeting people like you enlightens me and makes me feel connected. I only hope I can help you a fraction of how much you help me.

Whether it's a blog, a support group, a neighbor with the same illness (or a similar one), or maybe just an aquaintance who just happens to mention "I have endometriosis" or "I have fibromyalgia" or "I'm experiencing infertility"... It is SOOO amazing to make a connection with people who have a CLUE of what it is like so be so sick or tired or infertile... or all of the above!

I think it's important for this blog to be a welcome "safe spot" for MORE than just endometriosis patients.

So many endo patients have other chronic illnesses. Also, many readers may not have endo at all BUT may still gain insights here since we have been talking about other chronic illnesses and will continue to do so.

This may be an 'endo blog" but we will cover so much more than that!

So many people have lived through certain experiences and they therefore have so much to offer others. Some of the best information and leads I have gotten over the years came from fellow patients.

This DOESN'T mean I don't get info from my doctors. Certainly I do (or I'd be seeking care elsewhere)!

The thing is that fellow patients understand certain elements at a level just about no doctor really CAN understand --- unless she has endometriosis herself OR unless he is chronically ill himself.

Also, to be perfectly honest... a TYPICAL endometriosis patient wouldn't be able to handle the rigors of a profession like being a doctor. I do NOT mean to stereotype and there CERTAINLY may be exceptions to this.

My point is that the hours doctors keep and the nature of their work would be difficult for many healthy people to do. If you add a significant chronic illness such as endometriosis on top of that then things would really get tricky.

I know of many endometriosis patients who, like me, have endo plus numerous other illnesses... and have reached the point where even a typical part time job is totally unattainable.

I've met women through endo support groups who resigned full time jobs that they LOVED and replaced them with part time jobs that are so-so... simply because their bodies could no longer function in their previous jobs!

So what I'm saying is that I think that chronically ill patients networking with fellow patients (endometriosis or otherwise) are taking a HUGE step forward!!!

Meeting and getting to know others who "share the struggle" can make all the difference in the world!

Your input is always insightful and valuable. I cherish your posts more than you'll ever know, Alicia!

I agree with you that there are patients out there who do not yet have the proper diagnosis... especially for an illness like endo which currently requires surgery to diagnose it!!

There is no need to thank me! I thank YOU for your comments and for strengthening this new blog with your views, opinions, and information!

It is true that I have done my fair share of research over the years... but I believe my BIGGEST source of info (even more than books, doctors, the Internet, etc.)... is PEOPLE!

Connecting with people who "get it" is SOOOOOOOOO important!

Thank you for your comments! You made my day. :)

HAVE YOU SIGNED YET?? Please Sign Endometriosis Awareness Petition Below! Awareness YEAR-ROUND!