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!*****
+++++++++++++++
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.
+++++++++++++++
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
Showing posts with label vulvodynia. Show all posts
Showing posts with label vulvodynia. Show all posts
8/11/2008
7/22/2008
Endometriosis Patient Survives Yet Another Annual Exam Without Perishing On The Table :) :)
This morning's post at 11:01 AM read as follows ---
Hope to post more later. On way to GYN...
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
-------------------------------------------------------------------------------------
EVENING UPDATE:
This morning's post had this depressing title --- "Endo blog: VERY ILL!! Hope to post later today. Check GREAT new widgets in sidebar, please!! :) :)"
What a difference a few hours can make! I am still in incredible pain but I'm feeling much better emotionally than I was earlier today! (See my comment to Alicia on this post for some insights as to factors that turned a horrible day into a great one in many ways). Alicia could cheer ANYONE up!
This morning was one of those days with a very rough start. First, I woke up feeling like I had been hit by a truck. Then, I ran around trying to get ready for my gynecologist's appointment but was spinning my wheels because I was just too stressed out to get very far. So I stole a few minutes to go online and post the sadly titled: "Endo blog: VERY ILL!! Hope to post later today. Check GREAT new widgets in sidebar, please!! :) :)" I figured the widgets might have to keep you busy since I didn't know when I'd be able to post again. (Besides, they are really good widgets. Check them out)!
Within a short span of time after I posted this pathetic sounding post (except the positive part about the widgets), supportive comments flooded in from Mckay k and from yaya (Alicia). This positive enerygy was the boost I needed to simply get out of the house for my dreaded pelvic exam and pap smear!!
At this juncture I should explain that I have two doctors who treat my endometriosis symptoms: my gynecologist who I see annually and who does my regular pap smears... and my pelvic pain specialist who does pelvic exams too but does not do my pap smears.
Anyway, today was my visit with my gynecolgist. I just love this man! He is so compassionate and kind!!! He is passionate about helping women with a whole host of issues. He listens and cares!!! I was looking forward to seeing him as a person!!!
The part I was dreading this morning when I had such trouble functioning well enough to get out of the house & was in such physical pain... was the always-scary-to-me pap smear that always hurts like "h-e-double hockey sticks"... if you know what I mean! NO doctor has ever performed a pap smear on me without me experiencing indescribable, intense, excruciating pain.
Years ago when I lived in two other cities and I had pap smears by other doctors. No one has ever done it without me wincing, jumping off the table, accidentally holding my breath (which is not good because holding your breath just tenses up muscles & things), and simply not knowing how I'll get through it!
PLEASE NOTE:
If you aren't aware of it already... speculums come in different sizes. If you, like me, have very severe pain with pap smears, I highly (!) recommend asking your doctor if he or she has a smaller-sized speculum. It matters!
So, YES, all of this pain I had during today's pap smear was with a SMALL speculum. (Can you imagine how I would manage the regular sized one)? Anyway, I knew how much it would hurt. We're talking pain beyond that with non-pap smear pelvic exams... which also are excruciating and also cause me to reflexively jump off of the exam table.
The jumping, of course, only worsens the pain but I cannot help it. It is a reflex. If anyone out there reading this has had this happen (and I know some of you "get it" because I've talked w/women in my local group who are also like this), you are not alone! I looked like a Mexican jumping bean jumping up and down off of that exam table. My poor doctor... I wouldn't want to be my doctor! I've never had a pelvic exam that was not this painful. (I've certainly had worse, with docs in my former city).
I should stop here to mention that part of why my pelvic exams with either my GYN or my pelvic pain specialist are so VERY painful is that I have numerous illnesses that affect pelvic pain/vulvar pain/abdominal pain:
+++ vulvodynia or vulvar vestibulitis I'll have to do another completely seperate post someday on the difference between the two conditions --- but one pelvic pain specialist thinks I have vestibulitis and the other one (a 3rd opinion doc) thinks I have vulvodynia... In the meantime, consult the National Vulvodynia Association for info on these --- http://www.nva.org/. Also, please note that vulvodynia is being rsearched by an organization called CureTogether. See my July 15th post on their new medical research organization for more info on them. Also refer to their website: www.curetogether.com.
+++ interstitial cystitis
+++ pelvic congestion syndrome
+++ irritable bowel syndrome
+++ ... and, of course, endo!
Since any one of the above can cause painful gynecological exams, it's no wonder that I fly off the table when the doctor does any part of the exam.
Anyway, it ALWAYS is the case for me when I have to see either of these docs for an exam (but especially if it's a pap smear day)...
I of course have my period. There is no scheduling around this. First of all my periods aren't regular enough to schedule for them. Second, even if I'm nowhere near due for my period I almost always get it on or right before my pap smear appt. It never fails! There is no sense trying to reschedule when it happens a couple of days before a pap because the rescheduled appointment would fall into the same "Murphy's Law" category and I'd get my period on whatever day I rescheduled it for.
Anyway, I finally made it out of the house (quite an accomplishment with the fibromyalgia pain that greeted me first thing this morning)! Then I drove 45 minutes to where my doc is. Then the waiting game. At I sat in the waiting room, I distracted myself by filling out the HMO update/patient info form and scribbling additional notes for the doctor on my typed-up-at-home-in-advance medical history/update.
I learned long ago with a great doctor like this who is so thorough that his form for each annual exam is detailed (about 6 pages long!) that I need to write SEE ATTACHED on the whole doctor form and bring my updated version of events with me. (I need to actually do this for all doc appointments since my meds change frequently and I keep getting new diagnoses to pass along to all my other docs so they are all on the same page).
Sooooo, I turned my things in to the receptionist: the HMO/patient form, the doc form marked SEE ATTACHED, my newest HMO card, and the typed up stuff I brought with me.
Then I read things to get distracted until they called my name. The distraction is key for me when the anticipation of a painful exam creates overwhelming anxiety and fear in me.
They called my name and took me back. I did all the "nurse stuff". (Yay... my blood pressure medication is working as my BP was MUCH lower today than it has been)!
Then the doc comes in. Now this has to be one of the nicest people I have ever had the pleasure to meet. His bedside manner is impeccable. He REALLY cares about each and every patient. He knows me very well after many years on this journey together and tries extremely hard to be gentle with the exams. He listens! He is knowledgeable about alternative medicine. He is just awesome any way you slice it. All of this does not alleviate my fear of the imminent pelvic exam... especially the pap smear part!
I fill him in on some major changes in my health (for the worse) since I last saw him. Then it was exam time. I swear to you I tried with every fiber of my being not to jump off the table. However it is an unstoppable reflex. How else to explain that I'm telling my body "stay still and it will hurt less!!" but yet I jump?!
So the exam hurt like "h-e-double hockeysticks" as always with any gynecological appt. That was a given.
Then (!!) the huge relief that it was done hit me!!! I was so happy that my annual exam (pap smear and all) was done for another year.
Oh, sure, I may see my pelvic specialist 3 times a year on top of the GYN appt I had today (give or take)! Yes, that will hurt like "hockeysticks" too! However, for me, it's that pap smear that is the hardest part, pain-wise. So once I was done with today's exam, a HUGE weight was lifted off of me!
Anyway, my annual exam (including the necessary but very painful pap smear) is history for 2008. Yay!
In addition to having that doc appointment behind me, I had the extreme pleasure of visting with my friend and fellow (local) endometriosis support group member: Alicia. Yes, I mean THE Alicia... You may also know her as "yaya" and she frequently posts comments on my blog. She has endometriosis and infertility. (Her personal blog is: http://www.yayastuff.blogspot.com/ and she occasionally posts about those topics, among others).
Anyway, seeing Alicia in person was just what I needed today. After waking up to fibro pain, after realizing that the severe Charlie horses in my left foot from yesterday were planning to stick around (!!!) and hadn't left overnight, after trouble simply getting OUT OF THE HOUSE, after a problem with my van when it was time to leave that necessitated another stop en route to the doctor, after driving 45 minutes to the city, & after enduring the exam... her smiling face cheered me right up and distracted me from my troubles. Alicia is one special lady! Today I got to meet her husband for the first time. Someday, I'm hoping to have an "open" endo meeting where spouses and significant others can attend. My group is overdue for that. In the meantime, I only get to hear about local endo support group members' loved ones in meetings, online, & by phone. So it was a treat to meet her husband after hearing so much about him from Alicia and reading Alicia's blog!
Anyway, Alicia helped me out today and basically alleviated some worries I had about the appointment. It's hard to have a pity party when Alicia's around because she is so bubbly and fun and wonderful! So seeing her while in the city was great. (By the way, I live in the sticks so all of my specialists are 45 minutes each way. That's a lot of gas money but I have to "hunt down" the docs who can handle a "complicated" patient like me). COMPLICATED. That is what my primary wrote on my chart the other day... that my case is "complicated". She meant no offense by this, of course. I AM complicated)!
Anyway, THANK YOU to Alicia (A/K/A "yaya") for brightening my day!! :) Alicia defines TRUE FRIEND!
Sooooooo, for anyone who read my depressing post headline this morning (see earlier in this post), I have updated my post's title (see above) to reflect my improved mood, relief at having exam over, and gratitude at having such a lifelong friend as Alicia who is only 45 minutes away (45 minutes which really isn't all that bad, all things considered, since I do live in the sticks).
I'm glad the appt is over!
P.S. My Tori Amos CD for 90 minutes round trip helped my mood too! Never underestimate the power of music!!
Hope to post more later. On way to GYN...
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
-------------------------------------------------------------------------------------
EVENING UPDATE:
This morning's post had this depressing title --- "Endo blog: VERY ILL!! Hope to post later today. Check GREAT new widgets in sidebar, please!! :) :)"
What a difference a few hours can make! I am still in incredible pain but I'm feeling much better emotionally than I was earlier today! (See my comment to Alicia on this post for some insights as to factors that turned a horrible day into a great one in many ways). Alicia could cheer ANYONE up!
This morning was one of those days with a very rough start. First, I woke up feeling like I had been hit by a truck. Then, I ran around trying to get ready for my gynecologist's appointment but was spinning my wheels because I was just too stressed out to get very far. So I stole a few minutes to go online and post the sadly titled: "Endo blog: VERY ILL!! Hope to post later today. Check GREAT new widgets in sidebar, please!! :) :)" I figured the widgets might have to keep you busy since I didn't know when I'd be able to post again. (Besides, they are really good widgets. Check them out)!
Within a short span of time after I posted this pathetic sounding post (except the positive part about the widgets), supportive comments flooded in from Mckay k and from yaya (Alicia). This positive enerygy was the boost I needed to simply get out of the house for my dreaded pelvic exam and pap smear!!
At this juncture I should explain that I have two doctors who treat my endometriosis symptoms: my gynecologist who I see annually and who does my regular pap smears... and my pelvic pain specialist who does pelvic exams too but does not do my pap smears.
Anyway, today was my visit with my gynecolgist. I just love this man! He is so compassionate and kind!!! He is passionate about helping women with a whole host of issues. He listens and cares!!! I was looking forward to seeing him as a person!!!
The part I was dreading this morning when I had such trouble functioning well enough to get out of the house & was in such physical pain... was the always-scary-to-me pap smear that always hurts like "h-e-double hockey sticks"... if you know what I mean! NO doctor has ever performed a pap smear on me without me experiencing indescribable, intense, excruciating pain.
Years ago when I lived in two other cities and I had pap smears by other doctors. No one has ever done it without me wincing, jumping off the table, accidentally holding my breath (which is not good because holding your breath just tenses up muscles & things), and simply not knowing how I'll get through it!
PLEASE NOTE:
If you aren't aware of it already... speculums come in different sizes. If you, like me, have very severe pain with pap smears, I highly (!) recommend asking your doctor if he or she has a smaller-sized speculum. It matters!
So, YES, all of this pain I had during today's pap smear was with a SMALL speculum. (Can you imagine how I would manage the regular sized one)? Anyway, I knew how much it would hurt. We're talking pain beyond that with non-pap smear pelvic exams... which also are excruciating and also cause me to reflexively jump off of the exam table.
The jumping, of course, only worsens the pain but I cannot help it. It is a reflex. If anyone out there reading this has had this happen (and I know some of you "get it" because I've talked w/women in my local group who are also like this), you are not alone! I looked like a Mexican jumping bean jumping up and down off of that exam table. My poor doctor... I wouldn't want to be my doctor! I've never had a pelvic exam that was not this painful. (I've certainly had worse, with docs in my former city).
I should stop here to mention that part of why my pelvic exams with either my GYN or my pelvic pain specialist are so VERY painful is that I have numerous illnesses that affect pelvic pain/vulvar pain/abdominal pain:
+++ vulvodynia or vulvar vestibulitis I'll have to do another completely seperate post someday on the difference between the two conditions --- but one pelvic pain specialist thinks I have vestibulitis and the other one (a 3rd opinion doc) thinks I have vulvodynia... In the meantime, consult the National Vulvodynia Association for info on these --- http://www.nva.org/. Also, please note that vulvodynia is being rsearched by an organization called CureTogether. See my July 15th post on their new medical research organization for more info on them. Also refer to their website: www.curetogether.com.
+++ interstitial cystitis
+++ pelvic congestion syndrome
+++ irritable bowel syndrome
+++ ... and, of course, endo!
Since any one of the above can cause painful gynecological exams, it's no wonder that I fly off the table when the doctor does any part of the exam.
Anyway, it ALWAYS is the case for me when I have to see either of these docs for an exam (but especially if it's a pap smear day)...
I of course have my period. There is no scheduling around this. First of all my periods aren't regular enough to schedule for them. Second, even if I'm nowhere near due for my period I almost always get it on or right before my pap smear appt. It never fails! There is no sense trying to reschedule when it happens a couple of days before a pap because the rescheduled appointment would fall into the same "Murphy's Law" category and I'd get my period on whatever day I rescheduled it for.
Anyway, I finally made it out of the house (quite an accomplishment with the fibromyalgia pain that greeted me first thing this morning)! Then I drove 45 minutes to where my doc is. Then the waiting game. At I sat in the waiting room, I distracted myself by filling out the HMO update/patient info form and scribbling additional notes for the doctor on my typed-up-at-home-in-advance medical history/update.
I learned long ago with a great doctor like this who is so thorough that his form for each annual exam is detailed (about 6 pages long!) that I need to write SEE ATTACHED on the whole doctor form and bring my updated version of events with me. (I need to actually do this for all doc appointments since my meds change frequently and I keep getting new diagnoses to pass along to all my other docs so they are all on the same page).
Sooooo, I turned my things in to the receptionist: the HMO/patient form, the doc form marked SEE ATTACHED, my newest HMO card, and the typed up stuff I brought with me.
Then I read things to get distracted until they called my name. The distraction is key for me when the anticipation of a painful exam creates overwhelming anxiety and fear in me.
They called my name and took me back. I did all the "nurse stuff". (Yay... my blood pressure medication is working as my BP was MUCH lower today than it has been)!
Then the doc comes in. Now this has to be one of the nicest people I have ever had the pleasure to meet. His bedside manner is impeccable. He REALLY cares about each and every patient. He knows me very well after many years on this journey together and tries extremely hard to be gentle with the exams. He listens! He is knowledgeable about alternative medicine. He is just awesome any way you slice it. All of this does not alleviate my fear of the imminent pelvic exam... especially the pap smear part!
I fill him in on some major changes in my health (for the worse) since I last saw him. Then it was exam time. I swear to you I tried with every fiber of my being not to jump off the table. However it is an unstoppable reflex. How else to explain that I'm telling my body "stay still and it will hurt less!!" but yet I jump?!
So the exam hurt like "h-e-double hockeysticks" as always with any gynecological appt. That was a given.
Then (!!) the huge relief that it was done hit me!!! I was so happy that my annual exam (pap smear and all) was done for another year.
Oh, sure, I may see my pelvic specialist 3 times a year on top of the GYN appt I had today (give or take)! Yes, that will hurt like "hockeysticks" too! However, for me, it's that pap smear that is the hardest part, pain-wise. So once I was done with today's exam, a HUGE weight was lifted off of me!
Anyway, my annual exam (including the necessary but very painful pap smear) is history for 2008. Yay!
In addition to having that doc appointment behind me, I had the extreme pleasure of visting with my friend and fellow (local) endometriosis support group member: Alicia. Yes, I mean THE Alicia... You may also know her as "yaya" and she frequently posts comments on my blog. She has endometriosis and infertility. (Her personal blog is: http://www.yayastuff.blogspot.com/ and she occasionally posts about those topics, among others).
Anyway, seeing Alicia in person was just what I needed today. After waking up to fibro pain, after realizing that the severe Charlie horses in my left foot from yesterday were planning to stick around (!!!) and hadn't left overnight, after trouble simply getting OUT OF THE HOUSE, after a problem with my van when it was time to leave that necessitated another stop en route to the doctor, after driving 45 minutes to the city, & after enduring the exam... her smiling face cheered me right up and distracted me from my troubles. Alicia is one special lady! Today I got to meet her husband for the first time. Someday, I'm hoping to have an "open" endo meeting where spouses and significant others can attend. My group is overdue for that. In the meantime, I only get to hear about local endo support group members' loved ones in meetings, online, & by phone. So it was a treat to meet her husband after hearing so much about him from Alicia and reading Alicia's blog!
Anyway, Alicia helped me out today and basically alleviated some worries I had about the appointment. It's hard to have a pity party when Alicia's around because she is so bubbly and fun and wonderful! So seeing her while in the city was great. (By the way, I live in the sticks so all of my specialists are 45 minutes each way. That's a lot of gas money but I have to "hunt down" the docs who can handle a "complicated" patient like me). COMPLICATED. That is what my primary wrote on my chart the other day... that my case is "complicated". She meant no offense by this, of course. I AM complicated)!
Anyway, THANK YOU to Alicia (A/K/A "yaya") for brightening my day!! :) Alicia defines TRUE FRIEND!
Sooooooo, for anyone who read my depressing post headline this morning (see earlier in this post), I have updated my post's title (see above) to reflect my improved mood, relief at having exam over, and gratitude at having such a lifelong friend as Alicia who is only 45 minutes away (45 minutes which really isn't all that bad, all things considered, since I do live in the sticks).
I'm glad the appt is over!
P.S. My Tori Amos CD for 90 minutes round trip helped my mood too! Never underestimate the power of music!!
7/15/2008
Endo News Flash!! An ENDOMETRIOSIS RESEARCH ORGANIZATION called CureTogether Launches On JULY 15, 2008!!!
Meet Alexandra Carmichael! She is the Co-Founder of CureTogether. It is a medical research organization you will learn about in this post! I met Alexandra myself (via an email initially and then by phone) just a few short days ago! I have some VERY EXCITING news to announce. It's about CureTogether's official launch today!! Today (July 15, 2008) marks the launch of a NEW medical research organization! -------------------------------------------------------------------------------------------------
This organization, CureTogether, has chosen 3 conditions on which to focus their research initially:
+++++++++++++++++++++
ENDOMETRIOSIS
VULVODYNIA
MIGRAINES
+++++++++++++++++++++
-------------------------------------------------------------------------------------------------
You heard me right! CureTogether has picked 3 illnesses to research initially and every single one of them affects multiple women in my local endometriosis support group!!!
Who knows how many endometriosis patients worldwide ALSO are affected by vulvodynia and/or migraines??? I know of one local support group member who has all three of the above!! This launch of a new medical research organization with such fantastic priorities is fabulous and exciting news!!!
Their website (also launching today!) is:
http://www.curetogether.com/
You could be one of the very first visitors to their website simply by clicking the link above. If you do visit their site, I'm sure you'll be as thrilled as I was when I first laid eyes on it!!!
These conditions directly affect so many women (and men too, of course, in the case of migraines). These conditions also affect the families, friends, and sometimes even employers of the patients who are directly impacted by ENDOMETRIOSIS, VULVODYNIA, and MIGRAINES. These are serious conditions for the patients who have them. This is a massive milestone: a medical research organization that is specifically targeting illnesses they view as underfunded and in need of research... like endometriosis!
Who knows how many endometriosis patients worldwide ALSO are affected by vulvodynia and/or migraines??? I know of one local support group member who has all three of the above!! This launch of a new medical research organization with such fantastic priorities is fabulous and exciting news!!!
Their website (also launching today!) is:
http://www.curetogether.com/
You could be one of the very first visitors to their website simply by clicking the link above. If you do visit their site, I'm sure you'll be as thrilled as I was when I first laid eyes on it!!!
These conditions directly affect so many women (and men too, of course, in the case of migraines). These conditions also affect the families, friends, and sometimes even employers of the patients who are directly impacted by ENDOMETRIOSIS, VULVODYNIA, and MIGRAINES. These are serious conditions for the patients who have them. This is a massive milestone: a medical research organization that is specifically targeting illnesses they view as underfunded and in need of research... like endometriosis!
This past weekend, I had the pleasure of talking with Alexandra Carmichael by phone (see her photo above this post). She and I talked about her organization, CureTogether. Alexandra Carmichael and her husband, Daniel Reda, have Co-Founded this medical research organization. If you view the "Our Team" section of their new www.CureTogether.com website, you can read their bio information. You will also be able to read about Clarence Chandran, Advisor and Chairman of Chandran Family Foundation Inc. AND about Dr. Ursula Wesselmann. She is Professor of Anesthesiology and Neurology in the Department of Anesthesiology/Division of Pain Management at the University of Alabama at Birmingham. She is also a Scientific Advisor for CureTogether (www.CureTogether.com).
This organization, CureTogether, is just launching today and it already boasts a talented group of individuals who care deeply about helping endometriosis, vulvodynia, and migraine patients!! It was all I could do to wait from this past weekend until today to post this article because I am so excited! I was thrilled after viewing the site. I was psyched after Alexandra Carmichael emailed me to announce her organization's launch on July 15, 2008. Finally, I am absolutely ecstatic after speaking with Alexandra by phone this past weekend. Her passion for this research is outstanding and I cannot wait to see what this organization accomplishes. It will surely be a great deal, based on what I have learned in just the past few days.
It is with great honor that I previewed the www.CureTogether.com website just a few days early. It was exciting to see what the site already had before the organization had even launched. I can't imagine the heights this organization will reach after speaking with Alexandra Carmichael, viewing the site, and exchanging numerous emails with her this past week.
It is an HONOR to announce CureTogether to the world from my humble little "endo blog".
PLEASE take a moment to look at CureTogether's great website and see what all the buzz is about! I sure am glad Alexandra Carmichael stumbled upon my "Jeanne's Endo Blog" a few days ago and emailed me about CureTogether's launch! I would like to thank her for informing me about CureTogether!
I welcome any comments from my readers here on my endo blog (just click comments at the end of this article to post your comments/feedback). Also, I think you can comment on CureTogether's website directly with feedback. (I believe it will also accept your comments online because their site took my comments the other day pre-launch). I'm hoping my local endometriosis support group members will give CureTogether a warm welcome too!
Please post your feedback both here AND at their site if you can.
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
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.
6/04/2008
Alternative Medicine Is Amazing!
As per my disclaimer above, I do not prescribe treatment options. You need to consult with your health care provider(s) for that. I am excited to share some info regarding alternative medicine because many endo patients are not aware of all of the options available for managing endo symptoms.
For the purposes of this blog, I am going to use the phrase “alternative medicine” to refer to treatment options other than the typical “drugs and surgery” that are offered by Traditional Western Medical doctors for treating endometriosis.
In my personal experience and that of many women I know through my endo support group, many alternative medicine options have come to my attention. We will be talking a great deal about alternative medicine options on this blog. This post is just a jump off point for starting a dialogue on options that are available other than standard hormonal treatments and surgeries.
Since surgery can cause adhesions and scar tissue and since these can cause more pain, the benefits and risks of surgeries should be weighed carefully by talking with your doctor. Many women have numerous laparoscopies to remove endo. Also, medications can have side effects.
If alternative therapies and Traditional Western Medicine can be used together as integrative medicine, patients can get the best of both worlds: endo patients can choose the options that are best for them based on their age, fertility desires, number and severity of symptoms (including pain), etc.
Here are just a few alternative medicine options I am aware of through either personal experience or what my support group members have shared with me:
Acupuncture – I have been getting regular acupuncture for over 7 years now. I love it! For many years, I had heard women rave about acupuncture and I was afraid to do it. I thought it would hurt. I was in enough pain already and didn’t want to add to it by getting stuck with needles! However, I now wish I have tried it sooner!!!! My acupuncturist is awesome. He uses Japanese style needles. They are so thin and flexible… nothing like hypodermic needles! He describes them as “about the width of a cat’s whisker”. They are so skinny it’s unbelievable. They do NOT hurt! The cool thing about acupuncture for me is that it helps me in a holistic way…. It helps my whole body. He doesn’t just treat my endo symptoms. He treats all symptoms that acupuncture can appropriately address. It helps me enormously! My acupuncturist is a licensed acupuncturist. Here are a couple of websites you may find helpful:
http://www.acupuncturetoday.com/
http://www.acupuncturefinder.com/
Chi Nei Tsang – A couple of my fellow endo support group members have tried this modality and found it to be very helpful! I’m including a website with info about Chi Nei Tsang: http://www.chineitsang.com/. According to this website, “Chi Nei Tsang is a holistic approach to the healing touch modality of old Taoist Chinese origin. It integrates the physical, mental, emotional and spiritual aspects of our being.” If you haven’t tried this modality, it’s something you may want to investigate!
Diet and Nutrition – Many endo patients find that dietary changes help them feel better. Some endo patients feel better when they follow a wheat free and/or dairy free diet. There are books about endo and nutrition out there. One I’ve heard good things about (but haven’t read) is Endometriosis: A Key to Healing Through Nutrition by Dian Shepperson Mills and Michael Vernon.
Massage Therapy – Many people think of massage therapy as simply a luxury or form of pampering. However, massage therapy certainly has medical benefits! If massage therapy interests you, try finding a licensed massage therapist by word of mouth. Some massage therapists are take-your-breath-away relaxing and others are just so-so. Some have special training in massage therapy that is more geared to medical benefits rather than just relaxation. Ask around and you may find that someone you know has a massage therapist they swear by!
Physical Therapy for Pelvic Pain – I never knew there was such a thing as this until a support group member told me about it. Then I tried it myself and saw what she was talking about. Then we told other support group members and several of them tried it too. I haven’t heard any negative feedback from the women who have tried this therapy. If you are experiencing pelvic pain, you may want to see if there is a physical therapist in your area that does this particular, specialized form of physical therapy. For information about this therapy, I would try searching on these two websites: http://www.pelvicpain.org/index.asp or http://www.nva.org/. This therapy is typically covered under insurance and often requires a doctor’s referral. The only reason I’m calling it “alternative” is that most endo patients aren’t aware this therapy exists and most doctors don’t mention it to their patients. Some geographical areas don’t have these specially trained practitioners. However, there could be one in your backyard and you won’t know it if you don’t check. This is a modality that can really help women with pelvic pain. Ask your doctor if it’s an option available near you and don’t be afraid to research on your own to see if it’s available in your area. It may be available and your doctor doesn’t know it yet! This is a relatively new field within physical therapy from what I understand.
HAVE A GREAT DAY!
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
For the purposes of this blog, I am going to use the phrase “alternative medicine” to refer to treatment options other than the typical “drugs and surgery” that are offered by Traditional Western Medical doctors for treating endometriosis.
In my personal experience and that of many women I know through my endo support group, many alternative medicine options have come to my attention. We will be talking a great deal about alternative medicine options on this blog. This post is just a jump off point for starting a dialogue on options that are available other than standard hormonal treatments and surgeries.
Since surgery can cause adhesions and scar tissue and since these can cause more pain, the benefits and risks of surgeries should be weighed carefully by talking with your doctor. Many women have numerous laparoscopies to remove endo. Also, medications can have side effects.
If alternative therapies and Traditional Western Medicine can be used together as integrative medicine, patients can get the best of both worlds: endo patients can choose the options that are best for them based on their age, fertility desires, number and severity of symptoms (including pain), etc.
Here are just a few alternative medicine options I am aware of through either personal experience or what my support group members have shared with me:
Acupuncture – I have been getting regular acupuncture for over 7 years now. I love it! For many years, I had heard women rave about acupuncture and I was afraid to do it. I thought it would hurt. I was in enough pain already and didn’t want to add to it by getting stuck with needles! However, I now wish I have tried it sooner!!!! My acupuncturist is awesome. He uses Japanese style needles. They are so thin and flexible… nothing like hypodermic needles! He describes them as “about the width of a cat’s whisker”. They are so skinny it’s unbelievable. They do NOT hurt! The cool thing about acupuncture for me is that it helps me in a holistic way…. It helps my whole body. He doesn’t just treat my endo symptoms. He treats all symptoms that acupuncture can appropriately address. It helps me enormously! My acupuncturist is a licensed acupuncturist. Here are a couple of websites you may find helpful:
http://www.acupuncturetoday.com/
http://www.acupuncturefinder.com/
Chi Nei Tsang – A couple of my fellow endo support group members have tried this modality and found it to be very helpful! I’m including a website with info about Chi Nei Tsang: http://www.chineitsang.com/. According to this website, “Chi Nei Tsang is a holistic approach to the healing touch modality of old Taoist Chinese origin. It integrates the physical, mental, emotional and spiritual aspects of our being.” If you haven’t tried this modality, it’s something you may want to investigate!
Diet and Nutrition – Many endo patients find that dietary changes help them feel better. Some endo patients feel better when they follow a wheat free and/or dairy free diet. There are books about endo and nutrition out there. One I’ve heard good things about (but haven’t read) is Endometriosis: A Key to Healing Through Nutrition by Dian Shepperson Mills and Michael Vernon.
Massage Therapy – Many people think of massage therapy as simply a luxury or form of pampering. However, massage therapy certainly has medical benefits! If massage therapy interests you, try finding a licensed massage therapist by word of mouth. Some massage therapists are take-your-breath-away relaxing and others are just so-so. Some have special training in massage therapy that is more geared to medical benefits rather than just relaxation. Ask around and you may find that someone you know has a massage therapist they swear by!
Physical Therapy for Pelvic Pain – I never knew there was such a thing as this until a support group member told me about it. Then I tried it myself and saw what she was talking about. Then we told other support group members and several of them tried it too. I haven’t heard any negative feedback from the women who have tried this therapy. If you are experiencing pelvic pain, you may want to see if there is a physical therapist in your area that does this particular, specialized form of physical therapy. For information about this therapy, I would try searching on these two websites: http://www.pelvicpain.org/index.asp or http://www.nva.org/. This therapy is typically covered under insurance and often requires a doctor’s referral. The only reason I’m calling it “alternative” is that most endo patients aren’t aware this therapy exists and most doctors don’t mention it to their patients. Some geographical areas don’t have these specially trained practitioners. However, there could be one in your backyard and you won’t know it if you don’t check. This is a modality that can really help women with pelvic pain. Ask your doctor if it’s an option available near you and don’t be afraid to research on your own to see if it’s available in your area. It may be available and your doctor doesn’t know it yet! This is a relatively new field within physical therapy from what I understand.
HAVE A GREAT DAY!
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
6/01/2008
Welcome to Jeanne's Endo Blog!
I would like to welcome everyone to this brand new endo blog. I am very excited about it! This is something I have thought of doing for awhile now.
I would like to start by thanking two people who have inspired me to pursue this idea of creating an endo blog. First, I'd like to thank Tracee for her generosity, moral support, and time! Tracee's blog was what first inspired me to even dream of creating a blog. I'd also like to thank my husband. He spent lots of time discussing this with me and was very encouraging. While I had privately pondered making a blog, both Tracee and Don came out and suggested it without me ever saying aloud that I was seriously considering doing it!
Also... one of my endo support group members, Alicia, emailed me to announce her new (non-endo) blog a couple of days ago. I had already made up my mind to create this by then and was very happy for her deciding to create a blog herself. Alicia has also been very enthusiastic in supporting my decision to create an endo blog. :)
So, here goes. My first real endo blog post. I guess it makes sense to start this blog by explaining my intent. My intent is to provide information that endo patients are likely to find interesting or helpful in managing their illness. As I mentioned in the disclaimer above, this blog is NOT intended to provide medical advice. I'm a layperson. I plan to share my personal experiences, any info my support group members would like me to share, info regarding alternative medicine options (of which many are unaware), any endo legislation I come across, lots of links to helpful websites, etc.
I'm am very excited about this venture. I hope we get lots of activity from people on comments to the posts. It should end up being a forum for vigorous exchange of ideas.
Finally, I should forewarn readers up front that I may not always post as regularly as I would like to be able to. So please be patient with me when these times occur. I will post as often as I'm able with the many illnesses I have. If you don't hear from me for awhile on this blog, it simply means I'm too sick to blog at that time BUT I'll be back at it as soon as I possibly can.
This should be an exciting opportunity to get endo patients connected, interacting, exchanging ideas, and empowering themselves. I believe it's SO important for endo patients to advocate for themselves. Navigating the health care system can be challenging. At some point, I hope to post tips like "suggested questions to ask your doctor in a pre-op appointment" and "what is available besides drugs and surgery?"
Please come back and visit regularly. I think you'll find this blog supportive and, hopefully, quite useful.
Thank you for checking the blog out. I hope you'll become a regular visitor!
:)
Take care,
Jeanne
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
I would like to start by thanking two people who have inspired me to pursue this idea of creating an endo blog. First, I'd like to thank Tracee for her generosity, moral support, and time! Tracee's blog was what first inspired me to even dream of creating a blog. I'd also like to thank my husband. He spent lots of time discussing this with me and was very encouraging. While I had privately pondered making a blog, both Tracee and Don came out and suggested it without me ever saying aloud that I was seriously considering doing it!
Also... one of my endo support group members, Alicia, emailed me to announce her new (non-endo) blog a couple of days ago. I had already made up my mind to create this by then and was very happy for her deciding to create a blog herself. Alicia has also been very enthusiastic in supporting my decision to create an endo blog. :)
So, here goes. My first real endo blog post. I guess it makes sense to start this blog by explaining my intent. My intent is to provide information that endo patients are likely to find interesting or helpful in managing their illness. As I mentioned in the disclaimer above, this blog is NOT intended to provide medical advice. I'm a layperson. I plan to share my personal experiences, any info my support group members would like me to share, info regarding alternative medicine options (of which many are unaware), any endo legislation I come across, lots of links to helpful websites, etc.
I'm am very excited about this venture. I hope we get lots of activity from people on comments to the posts. It should end up being a forum for vigorous exchange of ideas.
Finally, I should forewarn readers up front that I may not always post as regularly as I would like to be able to. So please be patient with me when these times occur. I will post as often as I'm able with the many illnesses I have. If you don't hear from me for awhile on this blog, it simply means I'm too sick to blog at that time BUT I'll be back at it as soon as I possibly can.
This should be an exciting opportunity to get endo patients connected, interacting, exchanging ideas, and empowering themselves. I believe it's SO important for endo patients to advocate for themselves. Navigating the health care system can be challenging. At some point, I hope to post tips like "suggested questions to ask your doctor in a pre-op appointment" and "what is available besides drugs and surgery?"
Please come back and visit regularly. I think you'll find this blog supportive and, hopefully, quite useful.
Thank you for checking the blog out. I hope you'll become a regular visitor!
:)
Take care,
Jeanne
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
Subscribe to:
Posts (Atom)
