*** Please read the disclaimer at the top of this blog. ***
As many of you know, interstitial cystitis is one of the illnesses often found in women who have endometriosis. Interstitial cystitis affects both men and women but there have been research studies showing a higher incidence of IC in endometriosis patients than in non-endometriosis patients.
Wow! I found a great interstitial cystitis video clip (on http://youtube.com/watch?v=myjd4UMtCfw) and I decided to include it here. It was posted on YouTube by “YourUpdate” on June 21, 2007.
Here is the description of the clip from www.YouTube.com: The Interstitial Cystitis Association (ICA) educates both patients and healthcare providers to better understand and treat people with IC. Contact The International Cystitis Association (ICA) at for info at: http://www.ichelp.org/
Another source of information on IC is the National Institute of Diabetes and Digestive Disorders and Kidney Diseases (NIDDK):
See their website at:
http://kidney.niddk.nih.gov/kudiseases/pubs/interstitialcystitis/
I had had interstitial cystitis for 12 years before finally finding a doctor who properly diagnosed me. My 4th cystoscopy (with hydrodistention) was performed while I was under anesthesia for one of my laparoscopies for endo.
The cystoscopy was done at that time because I still presented with classic IC symptoms despite 3 previous negative cystoscopies prior to my diagnosis by a different doctor. (Ironically my first 3 cystoscopies were done by 2 different urologists and my proper diagnosis was finally made by a pelvic pain specialist).
Anyway, I have a regimen that I follow and it does help. I believe I had IC for the 12 years leading up to my official diagnosis. Whether the appearance of the inside of my bladder lining changed much in those 12 years or whether my pelvic pain specialist was better at properly diagnosing IC than the urologists had been, I may never know. All I know is my IC has responded to IC treatment.
It is crucial to advocate for yourself. Like the interstitial cystitis patient in the video clip, I believe it is crucial for IC patients to “take an active role” AND to “get the correct diagnosis from your doctors”. IC is often misdiagnosed.
HINT: If you do get diagnosed with IC and your doctor prescribes medications to be instilled into the bladder, the pediatric size catheters are a 'must' in my opinion. So if you suspect you have IC and you DO end up getting diagnosed with it, just keep that in the back of your mind. My doctor automatically ordered the pediatric size for me but not all doctors may think to do this.
That reminds me… for anyone who is unaware of this, you can request a smaller sized speculum for Pap smears. Just ask your GYN and you may find pelvic exams are less painful!
Last but NOT LEAST: I found this amazing blog today on chronic illnesses. Actually I found this blog a couple of weeks ago & subscribed to it then --- BUT the IC stuff just jumped out at me today's mailing. There are just TONS of IC links near the bottom part of the (emailed via my subscription) link listed below.
http://chronichealthblog.com/category/interstitial-cystitis/
If you even think you might have IC, these links (the last link above) are worthwhile reading (I think) from what I saw when I skimmed through them. (I simply didn’t have time to read through them ALL but there are just LOADS of them)!
Follow your gut and find the medical care you deserve. After all, we ALL deserve a decent quality of life.
Let's skip past "striving to get well" and skip right to "thriving" if at all possible.
Be well!
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
Showing posts with label ICA. Show all posts
Showing posts with label ICA. Show all posts
7/09/2008
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.
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.
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