In a follow-up to the Friday, September 19, 2008 post "Endometriosis Blog: Spotlight On The Interstitial Cystitis Association!!", I'd like to include a link to an article about endometriosis and interstitial cystitis from the "IC Disease -- Life with Interstitial Cystitis, Vulvodynia, Incontinence, & Other Bladder Conditions" website.
Here is the main link for this site:
http://icdisease.today.com/
Please see their post using the link below. I think it underscores much of what we have been talking about regarding interstitial cystitis and endometriosis.
Link to "Illnesses Similar to IC Disease: Endometriosis"
http://icdisease.today.com/2008/05/29/illnesses-similar-to-ic-disease-endometriosis/
Many women, including myself, have endometriosis AND interstitial cystitis as co-existing conditions.
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
Showing posts with label Endometriosis Association. Show all posts
Showing posts with label Endometriosis Association. Show all posts
8/26/2008
Endometriosis Blog: Are There Environmental Factors That We Can Control??
Many women with endometriosis are aware that it can be a genetic disease. While some women are the only ones in their family who have endometriosis (that they are aware of, anyway!), many other women don’t understand why they have endometriosis.
Maybe you already have endometriosis and you don't want to do anything to make it worse. Maybe you have endometriosis and don't want the illness to be expressed in loved ones who may already have genetics working against them. (See previous post: "Endometriosis Blog: What Is Epigenetics?? Can "Environment Become Heredity??)
Having a genetic predisposition to endometriosis does NOT necessarily mean that endometriosis will express itself in vulnerable individuals.
I’m certainly no scientist or medical researcher. However, I have heard presentations and I have read about environmental links between endometriosis and various chemicals and pesticides. Such potentially harmful chemicals and pesticides can be found in personal care products, cosmetics, and even the food we eat!
Below are numerous sources of information regarding environmental factors that may impact endometriosis patients.
I believe it's good to have some basic understanding of products and chemicals that can be particularly harmful to endometriosis patients (or that may help endometriosis to express itself in genetically vulnerable individuals).
Here is some information that you may find of interest if you have endometriosis and/or if you have loved ones who don't have endometriosis but may be at increased risk genetically for it.
By getting informed about environmental risks associated with endometriosis, it's possible you may be able to prevent someone you love from experiencing this potentially devastating illness!
Here are some websites of interest to learn more about this...
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
First, the Endometriosis Association’s “Endo & the Environment” website section:
http://www.endometriosisassn.org/environment.html (general environmental information)
Here is some more information from The Endometriosis Association:
http://www.endometriosisassn.org/pvc.html (information on PVC)
The Endometriosis Association’s information on endocrine disruptors, PCBs (polychlorinated biphenyls), and dioxin (including downloadable PDFs):
http://www.endometriosisassn.org/pcb.html
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
All of this information can be overwhelming. While learning about the many risk factors associated with endometriosis can be daunting, the good news is that there are factors you can control like avoiding chemicals known to be potentially harmful, focusing on sound nutritional choices (i.e. eating as much organic food as possible to avoid pesticide exposure, for example), and using products that are less likely to aggravate symptoms or put loved ones at risk for developing or worsening endometriosis.
Look in the next post for some more information regarding risk factors for endometriosis patients and some possible ways to prevent or minimize suffering associated with endometriosis.
While the process of learning about potentially harmful products and chemicals for endometriosis patients can be overwhelming, I believe it's important to get a handle on the basic information. Having knowledge of what the risks are and how to minimize or avoid them is a way of taking control and managing (or maybe even preventing) endometriosis symptoms.
So stay tuned for more information that may help you to take some control when dealing with this challenging illness. Every little bit helps and making some small changes can make a difference.
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
Maybe you already have endometriosis and you don't want to do anything to make it worse. Maybe you have endometriosis and don't want the illness to be expressed in loved ones who may already have genetics working against them. (See previous post: "Endometriosis Blog: What Is Epigenetics?? Can "Environment Become Heredity??)
Having a genetic predisposition to endometriosis does NOT necessarily mean that endometriosis will express itself in vulnerable individuals.
I’m certainly no scientist or medical researcher. However, I have heard presentations and I have read about environmental links between endometriosis and various chemicals and pesticides. Such potentially harmful chemicals and pesticides can be found in personal care products, cosmetics, and even the food we eat!
Did you know that cooking/microwaving foods in plastic can cause chemicals from the plastic to leach into the food? Did you know that some of these leached chemicals can mimic estrogens in the body?!
Did you know that PVC (i.e. used to make shower curtains, IV fluid bags, and many other items) can also cause harm... particularly to women with endometriosis whose immune systems are likely to already be compromised (and who have more medical interventions than many other people do)?!
Are you aware that the bleaching process used to whiten sanitary pads and tampons (to apparently create the illusion that they are "sterile") can be harmful too and that there are organic alternatives available on the market?!
Below are numerous sources of information regarding environmental factors that may impact endometriosis patients.
I believe it's good to have some basic understanding of products and chemicals that can be particularly harmful to endometriosis patients (or that may help endometriosis to express itself in genetically vulnerable individuals).
Here is some information that you may find of interest if you have endometriosis and/or if you have loved ones who don't have endometriosis but may be at increased risk genetically for it.
By getting informed about environmental risks associated with endometriosis, it's possible you may be able to prevent someone you love from experiencing this potentially devastating illness!
Here are some websites of interest to learn more about this...
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
First, the Endometriosis Association’s “Endo & the Environment” website section:
http://www.endometriosisassn.org/environment.html (general environmental information)
Here is some more information from The Endometriosis Association:
http://www.endometriosisassn.org/pvc.html (information on PVC)
The Endometriosis Association’s information on endocrine disruptors, PCBs (polychlorinated biphenyls), and dioxin (including downloadable PDFs):
http://www.endometriosisassn.org/pcb.html
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
All of this information can be overwhelming. While learning about the many risk factors associated with endometriosis can be daunting, the good news is that there are factors you can control like avoiding chemicals known to be potentially harmful, focusing on sound nutritional choices (i.e. eating as much organic food as possible to avoid pesticide exposure, for example), and using products that are less likely to aggravate symptoms or put loved ones at risk for developing or worsening endometriosis.
Look in the next post for some more information regarding risk factors for endometriosis patients and some possible ways to prevent or minimize suffering associated with endometriosis.
While the process of learning about potentially harmful products and chemicals for endometriosis patients can be overwhelming, I believe it's important to get a handle on the basic information. Having knowledge of what the risks are and how to minimize or avoid them is a way of taking control and managing (or maybe even preventing) endometriosis symptoms.
So stay tuned for more information that may help you to take some control when dealing with this challenging illness. Every little bit helps and making some small changes can make a difference.
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
8/07/2008
Endometriosis Blog: How Finding The Endometriosis Association & Participating In Endometriosis Support Groups Helped Me & Made Me A Volunteer!!
We’ll call post this “Part Two”:
I will pick up where I left off with the TUESDAY, AUGUST 5, 2008 Endometriosis Blog: My Personal History As An Endometriosis Patient “cliffhanger” post.
Here is where I left off:
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
So please stay tuned to find out how The Endometriosis Association helped me to learn about the illness, get needed support, and feel less alone!!!
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
If you have not yet read the August 5th post, you may want to read in reverse chronological posting order so that things are in context!
So once I had found the contact information for The Endometriosis Association in the Barnes & Noble bookstore, I went home and called them immediately. At that time, there was a phone number specifically for people who were new to The Endometriosis Association that took messages for call back. (I believe that there is just the main number for The Endometriosis Association now)…
The Endometriosis Association can be reached at:
Phone:(414) 355-2200
Website: http://www.endometriosisassn.org/
Anyway, someone called me back shortly after I left my message in 1992. The woman was very helpful! Since this conversation took place back in 1992, I don’t remember the exact details but I know she was very nice. I do know that I ended up joining The Endometriosis Association as a member. My membership meant that I began to receive The Endometriosis Association’s newsletter.
The newsletters were the first time I heard stories from women like me who were also endometriosis patients! There were letters that endometriosis patients had written to The Endometriosis Association published in the newsletters and the stories sounded like I could have written them!!
Around this time, I became aware of a book which was published in 1987 called Overcoming Endometriosis by Mary Lou Ballweg. (Overcoming Endometriosis was followed by The Endometriosis Sourcebook by Mary Lou Ballweg and The Endometriosis Association in 1995 and Endometriosis: The Complete Reference for Taking Charge of Your Health by Mary Lou Ballweg and The Endometriosis Association in 2003).
Overcoming Endometriosis, which I read in 1992, helped me to realize that there were many fellow endometriosis patients in the world. Between the newsletters and the book, I was starting to feel less alone.
Somewhere along the line it came to my attention that there was an Endometriosis Association support group right in my city. I had never been to a support group before and didn’t know what to expect! I was quite nervous about calling the Group Co-Leader but I was very ill from endometriosis and so I got past my nerves and placed the call.
I sure am glad I made that phone call!!! The Group Co-Leader was very warm and welcoming. She told me about the support group: where & when meetings were held, some idea of what meetings were like, some of her own personal experience as an endometriosis patient, etc.
IT WAS SUCH A GREAT PHONE CALL! I KNEW THAT I HAD TO GO AND CHECK THE SUPPORT GROUP OUT!
At the time I was a shy, quiet 23 year old with zero knowledge of support groups... back in 1992. The idea of going to a meeting where I would talk with people I didn’t know about my endometriosis made me apprehensive. However, the phone call from the welcoming Group Co-Leader helped a great deal! Also, I was too sick NOT to try a meeting! What did I have to lose? I knew I might very well have a great deal to gain! If the other support group members were even half as nice as the woman I had spoken with on the phone, I’d be foolish not to go!
So the next meeting night arrived. I went to the meeting by myself. This particular support group used a conference room in a hospital for their monthly meetings. Still a bit nervous, I had no doubt that I was doing what I needed to do in order to find the support I so desperately needed!! I walked into a small room with about 3 women sitting at a table. It was still a few minutes before the meeting was scheduled to begin. I believe one more woman arrived after me and then we started the support group meeting.
What a breath of fresh air!!! To sit in a room of women who all automatically “got it”, who all had some idea of what I was experiencing, and some of whom shared many symptoms with me... it was so exciting! I learned a great deal in just that first meeting. This particular group had each woman take turns (only if they chose to speak) talking about any endometriosis-related topic she wanted.
The women typically began by introducing themselves, when it was their turn to speak, for the benefit of new meeting attendees like me. Some told their “endo stories”… brief summaries of their endometriosis journeys to that point. Some talked of having trouble deciding whether to have another laparoscopic surgery or not. Some talked about prescription treatments they were on or had tried in the past. Others talked about alternative medicine (a term that was new to me at the time). It was made clear that I could just listen if I wanted to and that I didn’t have to talk.
By the time it was my turn, I was ready to talk!! I was still shy and quiet but hearing the other endometriosis patients’ stories helped me to relax and open up. I explained how I found the group, that I had talked to the Group Co-Leader prior to the meeting, and that I was very much in need of support! I explained that I had been recently diagnosed with endometriosis and was just beginning to learn about it!
The welcoming response I got from my fellow endometriosis patients was touching and comforting! I felt like I really “belonged” there and this was only my first meeting!! I was very glad I “took a chance” and “dragged myself” to that first support group meeting.
From that point on, I went to every monthly meeting I possibly could! In fact, I scheduled around the meetings as best I could. I was working many hours at the time and it wasn’t always easy to fit the meetings into my schedule. I did my best, though.
I MADE TIME FOR THE SUPPORT GROUP MEETINGS!!!
The support group taught me so much and so quickly! It was a whole new world! I didn’t feel like it was “me against the world” anymore! I finally knew the name of my illness, I was learning more about it rapidly, I got tips on finding a better doctor than the one I had at the time (which was sorely needed!), etc. I was very pleased with the amount of information and support I received at these meetings.
Most months we had 2-6 women in attendance. That was plenty! In fact, we had to keep our turns brief enough to allow each person the opportunity to talk. The meetings were 2 hours long and we often occupied the room right until it was time for us to vacate it!
Now I will fast forward a few years. I accepted a job in a new city. While the city was fairly large, I didn’t know if there would be support group available there. I was pleased to discover that there was. Unfortunately, I didn’t make many of the meetings in that city because I was working a very unbalanced schedule of 80+ hours a week (on average). I did make a couple of meetings in that city, though.
Two years later, I returned to my hometown and resumed the meetings at the location I had originally attended. The group was as warm and welcoming as ever! My work hours were cut way back and I began attending almost-monthly again.
Now I will fast forward another 3 years. I got married & moved again to a third place. This time it was not a city. The rural area where I had moved to did not have an endometriosis support group very close to where I lived. There was a support group in the nearest city AND the one I had just left. The driving distance was a bit much for me to attend either one very regularly.
I did not even know about the endometriosis support group in the nearest city to where I had moved; I found out about it later on when I had decided to form a group closer to where I lived!
So, in the course of starting up my own group... I became aware that there was an endometriosis support group in the city closest to my new home (slightly closer than the group I had just left). I spoke to that Group Leader and I contacted The Endometriosis Association’s headquarters for information on how many women lived near my rural area and whether or not it made sense to form another support group. They sent me data on members in my area and women who had contacted EA for information. Many were "on my side of town", as it turned out.
To make a long story short, I decided after speaking to the Group Leaders from the two nearest cities that it would be worth forming a new (additional) group. The Group Leader from my “new city” was very helpful!!! She gave me lots of tips for how to start a new group! She recommended an EXCELLENT class given by the local Mental Health Association called “Facilitating Self-Help Groups”.
Please see my previous posts:
Monday, August 4, 2008 Endometriosis Blog: Self-Help Groups, Support Groups, and Volunteering Follow-up
Monday, July 28, 2008 Endo Blog: What Is “Self-Help”?? What Are The Health Benefits Of Volunteering? Why Join/Start A Support Group??
So I attended the class, talked with the Group Leaders from the endometriosis support groups on either side of me, and formed a new group.
This Friday will mark my support group’s SEVENTH anniversary! Unfortunately, the other two support groups no longer meet. Like so many groups around the country, these groups decided to discontinue their meetings.
For awhile, we had all three groups active and running. It was great because I had 2 experienced Group Leaders to bounce things off of and they bounced their ideas off of me too.
The group in my “new city” closed first. I was sad to see it close. The very experienced Group Leader had stepped down to take a job out of the area. I asked one of my most enthusiastic support group members if she’d consider stepping in so that we could keep both groups active. This would give women in the area two locations to choose from. We ran in tandem for a little while but her group closed and I absorbed any interested members from her group into mine.
Awhile later, the group from my “old city” closed down as well. This was very sad for me because that group meant so much to me! There were still members in it from when I joined in 1992! Unfortunately, the remaining group members weren’t attending often enough & regularly enough for the group to stay active.
This left me with the only active group in an area covering two moderate sized cities and their surrounding areas. I was more determined than ever to attract new members and keep my group from closing down as the other two had.
I am still in touch with the former support Group-Leaders from both cities!
It has been a couple of years since then. Our smallest meetings consist of two people. Our biggest meeting ever had 15.
EVERY SINGLE MEETING IS WORTHWHILE, REGARDLESS OF HOW MANY WOMEN ATTEND!
I had a couple of “no show" meetings about two years ago. That was when I implemented a new policy that if I didn’t get at least ONE person to RSVP that she was definitely planning to attend, I would simply cancel the meeting. I learned that sitting in an empty room waiting to see if anyone will show up is no fun. I haven’t had a “no show” meeting since!! Either we get 2-5 women (at an average meeting,including me) or I cancel 24 hours in advance with the building/meeting room where we meet. Problem solved!
I encourage you to read the related posts I mentioned above. Who knows?? Someone reading this may get inspired to find a local endometriosis support group, attend meetings, OR start a group if there isn’t one that is nearby!!
I have also created a poll regarding self-help groups and support groups! Please see it in the right sidebar of this blog and exercise your right to vote for the option that applies to you!!
I hope that SOMETHING in this post, in the other two recent posts about self-help groups/support groups/volunteering, and/or in the “PART ONE” post to this one: TUESDAY, AUGUST 5, 2008 Endometriosis Blog: My Personal History As An Endometriosis Patient will be helpful to ENDOMETRIOSIS PATIENTS AND OTHER CHRONICALLY ILL PATIENTS IN NEED OF SUPPORT!!!
You may have an appropriate support group in your backyard and not even know it!!!
I will close this post with a quote that was recently brought to my attention. I believe it’s perfect for this post:
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
I will pick up where I left off with the TUESDAY, AUGUST 5, 2008 Endometriosis Blog: My Personal History As An Endometriosis Patient “cliffhanger” post.
Here is where I left off:
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
So please stay tuned to find out how The Endometriosis Association helped me to learn about the illness, get needed support, and feel less alone!!!
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
If you have not yet read the August 5th post, you may want to read in reverse chronological posting order so that things are in context!
So once I had found the contact information for The Endometriosis Association in the Barnes & Noble bookstore, I went home and called them immediately. At that time, there was a phone number specifically for people who were new to The Endometriosis Association that took messages for call back. (I believe that there is just the main number for The Endometriosis Association now)…
The Endometriosis Association can be reached at:
Phone:(414) 355-2200
Website: http://www.endometriosisassn.org/
I PERSONALLY HAVE FOUND A WOMAN NAMED SHELLEY HOUCHIN TO BE EXTRAORDINARILY HELPFUL AND SUPPORTIVE! SHE IS THE SUPPORT PROGRAM COORDINATOR AT THE ENDOMETRIOSIS ASSOCIATION HEADQUARTERS. I WOULD HIGHLY RECOMMEND CONTACTING SHELLEY IF YOU HAVE ANY QUESTIONS ABOUT ENDOMETRIOSIS SUPPORT GROUPS OR THE ENDOMETRIOSIS ASSOCIATION IN GENERAL. THIS WOMAN IS VERY PASSIONATE ABOUT HELPING ENDOMETRIOSIS PATIENTS AND IS A FANTASTIC RESOURCE! SO IF YOU CALL OR EMAIL THE ENDOMETRIOSIS ASSOCIATION, JUST ASK FOR SHELLEY HOUCHIN AND SHE WILL BE VERY HELPFUL!!!
Anyway, someone called me back shortly after I left my message in 1992. The woman was very helpful! Since this conversation took place back in 1992, I don’t remember the exact details but I know she was very nice. I do know that I ended up joining The Endometriosis Association as a member. My membership meant that I began to receive The Endometriosis Association’s newsletter.
The newsletters were the first time I heard stories from women like me who were also endometriosis patients! There were letters that endometriosis patients had written to The Endometriosis Association published in the newsletters and the stories sounded like I could have written them!!
Around this time, I became aware of a book which was published in 1987 called Overcoming Endometriosis by Mary Lou Ballweg. (Overcoming Endometriosis was followed by The Endometriosis Sourcebook by Mary Lou Ballweg and The Endometriosis Association in 1995 and Endometriosis: The Complete Reference for Taking Charge of Your Health by Mary Lou Ballweg and The Endometriosis Association in 2003).
Overcoming Endometriosis, which I read in 1992, helped me to realize that there were many fellow endometriosis patients in the world. Between the newsletters and the book, I was starting to feel less alone.
Somewhere along the line it came to my attention that there was an Endometriosis Association support group right in my city. I had never been to a support group before and didn’t know what to expect! I was quite nervous about calling the Group Co-Leader but I was very ill from endometriosis and so I got past my nerves and placed the call.
I sure am glad I made that phone call!!! The Group Co-Leader was very warm and welcoming. She told me about the support group: where & when meetings were held, some idea of what meetings were like, some of her own personal experience as an endometriosis patient, etc.
IT WAS SUCH A GREAT PHONE CALL! I KNEW THAT I HAD TO GO AND CHECK THE SUPPORT GROUP OUT!
At the time I was a shy, quiet 23 year old with zero knowledge of support groups... back in 1992. The idea of going to a meeting where I would talk with people I didn’t know about my endometriosis made me apprehensive. However, the phone call from the welcoming Group Co-Leader helped a great deal! Also, I was too sick NOT to try a meeting! What did I have to lose? I knew I might very well have a great deal to gain! If the other support group members were even half as nice as the woman I had spoken with on the phone, I’d be foolish not to go!
So the next meeting night arrived. I went to the meeting by myself. This particular support group used a conference room in a hospital for their monthly meetings. Still a bit nervous, I had no doubt that I was doing what I needed to do in order to find the support I so desperately needed!! I walked into a small room with about 3 women sitting at a table. It was still a few minutes before the meeting was scheduled to begin. I believe one more woman arrived after me and then we started the support group meeting.
What a breath of fresh air!!! To sit in a room of women who all automatically “got it”, who all had some idea of what I was experiencing, and some of whom shared many symptoms with me... it was so exciting! I learned a great deal in just that first meeting. This particular group had each woman take turns (only if they chose to speak) talking about any endometriosis-related topic she wanted.
The women typically began by introducing themselves, when it was their turn to speak, for the benefit of new meeting attendees like me. Some told their “endo stories”… brief summaries of their endometriosis journeys to that point. Some talked of having trouble deciding whether to have another laparoscopic surgery or not. Some talked about prescription treatments they were on or had tried in the past. Others talked about alternative medicine (a term that was new to me at the time). It was made clear that I could just listen if I wanted to and that I didn’t have to talk.
By the time it was my turn, I was ready to talk!! I was still shy and quiet but hearing the other endometriosis patients’ stories helped me to relax and open up. I explained how I found the group, that I had talked to the Group Co-Leader prior to the meeting, and that I was very much in need of support! I explained that I had been recently diagnosed with endometriosis and was just beginning to learn about it!
The welcoming response I got from my fellow endometriosis patients was touching and comforting! I felt like I really “belonged” there and this was only my first meeting!! I was very glad I “took a chance” and “dragged myself” to that first support group meeting.
From that point on, I went to every monthly meeting I possibly could! In fact, I scheduled around the meetings as best I could. I was working many hours at the time and it wasn’t always easy to fit the meetings into my schedule. I did my best, though.
I MADE TIME FOR THE SUPPORT GROUP MEETINGS!!!
The support group taught me so much and so quickly! It was a whole new world! I didn’t feel like it was “me against the world” anymore! I finally knew the name of my illness, I was learning more about it rapidly, I got tips on finding a better doctor than the one I had at the time (which was sorely needed!), etc. I was very pleased with the amount of information and support I received at these meetings.
Most months we had 2-6 women in attendance. That was plenty! In fact, we had to keep our turns brief enough to allow each person the opportunity to talk. The meetings were 2 hours long and we often occupied the room right until it was time for us to vacate it!
Now I will fast forward a few years. I accepted a job in a new city. While the city was fairly large, I didn’t know if there would be support group available there. I was pleased to discover that there was. Unfortunately, I didn’t make many of the meetings in that city because I was working a very unbalanced schedule of 80+ hours a week (on average). I did make a couple of meetings in that city, though.
Two years later, I returned to my hometown and resumed the meetings at the location I had originally attended. The group was as warm and welcoming as ever! My work hours were cut way back and I began attending almost-monthly again.
Now I will fast forward another 3 years. I got married & moved again to a third place. This time it was not a city. The rural area where I had moved to did not have an endometriosis support group very close to where I lived. There was a support group in the nearest city AND the one I had just left. The driving distance was a bit much for me to attend either one very regularly.
I did not even know about the endometriosis support group in the nearest city to where I had moved; I found out about it later on when I had decided to form a group closer to where I lived!
So, in the course of starting up my own group... I became aware that there was an endometriosis support group in the city closest to my new home (slightly closer than the group I had just left). I spoke to that Group Leader and I contacted The Endometriosis Association’s headquarters for information on how many women lived near my rural area and whether or not it made sense to form another support group. They sent me data on members in my area and women who had contacted EA for information. Many were "on my side of town", as it turned out.
To make a long story short, I decided after speaking to the Group Leaders from the two nearest cities that it would be worth forming a new (additional) group. The Group Leader from my “new city” was very helpful!!! She gave me lots of tips for how to start a new group! She recommended an EXCELLENT class given by the local Mental Health Association called “Facilitating Self-Help Groups”.
Please see my previous posts:
Monday, August 4, 2008 Endometriosis Blog: Self-Help Groups, Support Groups, and Volunteering Follow-up
Monday, July 28, 2008 Endo Blog: What Is “Self-Help”?? What Are The Health Benefits Of Volunteering? Why Join/Start A Support Group??
So I attended the class, talked with the Group Leaders from the endometriosis support groups on either side of me, and formed a new group.
This Friday will mark my support group’s SEVENTH anniversary! Unfortunately, the other two support groups no longer meet. Like so many groups around the country, these groups decided to discontinue their meetings.
For awhile, we had all three groups active and running. It was great because I had 2 experienced Group Leaders to bounce things off of and they bounced their ideas off of me too.
The group in my “new city” closed first. I was sad to see it close. The very experienced Group Leader had stepped down to take a job out of the area. I asked one of my most enthusiastic support group members if she’d consider stepping in so that we could keep both groups active. This would give women in the area two locations to choose from. We ran in tandem for a little while but her group closed and I absorbed any interested members from her group into mine.
Awhile later, the group from my “old city” closed down as well. This was very sad for me because that group meant so much to me! There were still members in it from when I joined in 1992! Unfortunately, the remaining group members weren’t attending often enough & regularly enough for the group to stay active.
This left me with the only active group in an area covering two moderate sized cities and their surrounding areas. I was more determined than ever to attract new members and keep my group from closing down as the other two had.
I am still in touch with the former support Group-Leaders from both cities!
It has been a couple of years since then. Our smallest meetings consist of two people. Our biggest meeting ever had 15.
EVERY SINGLE MEETING IS WORTHWHILE, REGARDLESS OF HOW MANY WOMEN ATTEND!
I had a couple of “no show" meetings about two years ago. That was when I implemented a new policy that if I didn’t get at least ONE person to RSVP that she was definitely planning to attend, I would simply cancel the meeting. I learned that sitting in an empty room waiting to see if anyone will show up is no fun. I haven’t had a “no show” meeting since!! Either we get 2-5 women (at an average meeting,including me) or I cancel 24 hours in advance with the building/meeting room where we meet. Problem solved!
I encourage you to read the related posts I mentioned above. Who knows?? Someone reading this may get inspired to find a local endometriosis support group, attend meetings, OR start a group if there isn’t one that is nearby!!
I have also created a poll regarding self-help groups and support groups! Please see it in the right sidebar of this blog and exercise your right to vote for the option that applies to you!!
I hope that SOMETHING in this post, in the other two recent posts about self-help groups/support groups/volunteering, and/or in the “PART ONE” post to this one: TUESDAY, AUGUST 5, 2008 Endometriosis Blog: My Personal History As An Endometriosis Patient will be helpful to ENDOMETRIOSIS PATIENTS AND OTHER CHRONICALLY ILL PATIENTS IN NEED OF SUPPORT!!!
You may have an appropriate support group in your backyard and not even know it!!!
I will close this post with a quote that was recently brought to my attention. I believe it’s perfect for this post:
“One of the most important capabilities of community self-help groups is that ordinary people can develop such groups in their local communities when none exist, and subsequently their group usually serves as an extraordinary resource to many in that area for several years. I still find it amazing that to start a group, a person doesn't need a grant, an agency, or even an office - just the inspiration and a few other people who share their experience and hope. What significantly helps in providing such inspiration is a person's knowledge of an existing national organization or a model group, which can provide them with basic information so they don't have to ‘re-invent the wheel.’ "
This quote is attributed to E. Madara, "Mutual Aid Self-Help Group Developments” Community Psychologist, 39 (3), Fall, 2006, p. 21.
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
8/05/2008
Endometriosis Blog: My Personal History As An Endometriosis Patient
I decided for today's post to go back to the "beginning" of my journey with endometriosis. I feel I should give some background on what led up to the diagnosis… to put things in context. After 10 years of suffering, I was finally diagnosed with endometriosis by a laparoscopy at the age of 23.
My middle school and high school years were marred by agonizing pain, massive bleeding problems, very irregular cycles (some cycles were just 16 days long and other times I would go a couple of months without a period at all). Most of the cycles were very short, though! It seemed I was always either about to get my period, that I actually had my period, or that I was recovering from the traumatic experience of having my period (which averaged 10-11 days back then)! Then it would start all over again way too soon. So I usually had about 5-6 days to “recover” and then my next period would begin! It took over my life in many ways…
The pain was so severe that I actually passed out one day when I was 14. I had a friend over for a sleepover. It was a hot day. I have always had heat intolerance so this didn't help matters. The pain was what knocked me out, though! It was excruciating! (Hot day or not, we were indoors eating breakfast so it wasn't like I was in the sun or anything). I just remember feeling very, very sick and then kind of flopping over sideways in my chair. My family and my friend later told me that my face turned greenish when I passed out. That is how sick I felt... sick enough to turn green! They thought it was some sort of heat exhaustion but I knew better. As I said, the heat certainly didn’t help BUT I passed out right in the middle of an episode of the most INTENSE abdominal pain ever!!!! This was no coincidence. (In years since I have passed out other times during my period, regardless of the weather).
Anyway, to fast forward a bit... high school was really tough! There were days when I was simply to sick to be at school. I never had the sense to not go to school in the first place on these particular days. Fortunately my best friend (the same one mentioned above with the sleepover fainting incident) had a father with a flexible work schedule that allowed him to pick us up from school early rather than take the bus home.
Since my friend and I got extremely good grades, missing an occasional class wasn't really that big of a deal and had no negative impact on our grades or our understanding of the subject matter. (I’m certainly not advocating skipping school; I always got a medical excuse or whatever the school required before leaving. I was a big rule-follower)! We had the option of scheduling our study hall when we wanted as seniors in high school and we scheduled ours for the end of the day so that we could get a pass from the office and leave early (with parental permission).
So we often would call her father for a ride before our school day was technically over (missing one class) or as soon as it was study hall time because I was just too sick to stay in school! Getting through a school day was, at times, all I could do… just to survive another school day. It took every fiber of my being to do it!
I distinctly remember sitting in the front entrance of the school one day with the most nauseating, horrendous menstrual cramps and abdominal pain imaginable. My friend and I were waiting out front for her dad to pick us up. I didn't care how I looked or who saw me sitting there sobbing. I was just too sick to care! The pain was far too intense to put on my happy face and “act normal”. I just kind of curled up in a ball with my back against the wall and cried. My friend did anything she possibly could to cheer me up. (She and I had been friends since 4th grade and she was good at cheering me up).
Anyway, I remember seeing her father's car pull up in front of the school and being SO relieved! We'd go to her house and I would just lie on the bed in her room and cry. This happened quite a bit. It was not a fun way to go through high school.
In my college years, I managed to graduate with a 3.65 GPA despite the fact that I often had to leave mid-class and duck into the rest room because I was so very sick. It was very challenging! I did whatever I had to in order to "catch up" on anything I missed for all of the inconveniently timed trips to the bathroom. It was exhausting and many tears were shed in those college bathrooms! Honestly, I look back and I don’t know how I did it!
Anyway at the age of 23 my gynecologist tried a couple of different birth control pills to try to tame my symptoms. The pills he gave me made me much, much sicker. He then told me he thought I might possibly have a disease called endometriosis. He explained that to see if I had endometriosis a surgical procedure called a laparoscopy would need to be done. While I wasn't wild about the idea of surgery, I certainly wanted to do anything I possibly could to find out what was wrong (because there was no doubt that something was very wrong)!!!
So in 1992 I had my first laparoscopy. My gynecologist diagnosed me with endometriosis. He said he had "cleaned me out" and implied that I was going to start feeling much, much better now. Well that relief he promised never came! (Just 10 months later, another surgeon who was MUCH more experienced with endometriosis did another laparoscopy and found lots more endometriosis)!
After the first surgery, my GYN put me on yet another different birth control pill. I was the sickest ever! I was having all of my usual symptoms (terrible hemorrhaging, agonizing menstrual cramps, nausea, diarrhea, etc). In addition, I was now experiencing extremely severe hot flashes and other new symptoms. Plus I was still recovering from the surgery itself. I was sicker than ever! (I now know from various conversations with pharmacists and other gynecologists that the class of birth control pills he had me using is not a good choice for endometriosis patients and it was why I had the TERRIBLE hot flashes)!
I was working lots of hours and being so sick was making it almost impossible to function at work or home. Between the pain, the bleeding, the exhaustion, and the hot flashes… I was very ill!!!
Once I had a diagnosis of endometriosis, I was hungry for any information I could get my hands on. So, sick as I was, I went on a “hunt” for anything I could possibly find about endometriosis. Let’s just say that the information I found initially was scant to say the least! My GYN gave me a very skimpy brochure on endometriosis that was published by a pharmaceutical company pushing their product. This was not exactly an informative brochure! That’s it. When I asked him about other resources available on endometriosis, he couldn’t come up with anything else!
I then went to my local library. This was a fantastic library that had always had what I needed when I needed it. I searched for any information I could find on endometriosis. I found NOTHING! I asked the librarian for help. She was also unable to find a single bit of information on endometriosis. Being 1992, I didn’t have the Internet to turn to as an endometriosis resource. I was not a happy camper!
I went to various places. Finally, one day I went to the local Barnes & Noble bookstore. I spent hours & hours combing through books in the women’s health and self-help book sections. I searched and searched. I found very little. A couple of books had the word endometriosis in the index but when I turned to the only page listed for it, there would simply not be any helpful information.
Then I made an important discovery! Tucked in the back of one of the books in the “resources” section was information on The Endometriosis Association. I scribbled down the contact information for The Endometriosis Association and was very pleased to have found an entire organization dedicated to endometriosis education, support, and research. (The rest of that book didn’t really interest me so I didn’t purchase it).
I had what I needed: contact information for an organization dedicated to endometriosis!
I went home and called The Endometriosis Association!
Since this post is already quite lengthy, I think I’ll stop at this juncture and save the next part for another post!
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
So please stay tuned to find out how The Endometriosis Association helped me to learn about the illness, get needed support, and feel less alone!!!
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
My middle school and high school years were marred by agonizing pain, massive bleeding problems, very irregular cycles (some cycles were just 16 days long and other times I would go a couple of months without a period at all). Most of the cycles were very short, though! It seemed I was always either about to get my period, that I actually had my period, or that I was recovering from the traumatic experience of having my period (which averaged 10-11 days back then)! Then it would start all over again way too soon. So I usually had about 5-6 days to “recover” and then my next period would begin! It took over my life in many ways…
The pain was so severe that I actually passed out one day when I was 14. I had a friend over for a sleepover. It was a hot day. I have always had heat intolerance so this didn't help matters. The pain was what knocked me out, though! It was excruciating! (Hot day or not, we were indoors eating breakfast so it wasn't like I was in the sun or anything). I just remember feeling very, very sick and then kind of flopping over sideways in my chair. My family and my friend later told me that my face turned greenish when I passed out. That is how sick I felt... sick enough to turn green! They thought it was some sort of heat exhaustion but I knew better. As I said, the heat certainly didn’t help BUT I passed out right in the middle of an episode of the most INTENSE abdominal pain ever!!!! This was no coincidence. (In years since I have passed out other times during my period, regardless of the weather).
Anyway, to fast forward a bit... high school was really tough! There were days when I was simply to sick to be at school. I never had the sense to not go to school in the first place on these particular days. Fortunately my best friend (the same one mentioned above with the sleepover fainting incident) had a father with a flexible work schedule that allowed him to pick us up from school early rather than take the bus home.
Since my friend and I got extremely good grades, missing an occasional class wasn't really that big of a deal and had no negative impact on our grades or our understanding of the subject matter. (I’m certainly not advocating skipping school; I always got a medical excuse or whatever the school required before leaving. I was a big rule-follower)! We had the option of scheduling our study hall when we wanted as seniors in high school and we scheduled ours for the end of the day so that we could get a pass from the office and leave early (with parental permission).
So we often would call her father for a ride before our school day was technically over (missing one class) or as soon as it was study hall time because I was just too sick to stay in school! Getting through a school day was, at times, all I could do… just to survive another school day. It took every fiber of my being to do it!
I distinctly remember sitting in the front entrance of the school one day with the most nauseating, horrendous menstrual cramps and abdominal pain imaginable. My friend and I were waiting out front for her dad to pick us up. I didn't care how I looked or who saw me sitting there sobbing. I was just too sick to care! The pain was far too intense to put on my happy face and “act normal”. I just kind of curled up in a ball with my back against the wall and cried. My friend did anything she possibly could to cheer me up. (She and I had been friends since 4th grade and she was good at cheering me up).
Anyway, I remember seeing her father's car pull up in front of the school and being SO relieved! We'd go to her house and I would just lie on the bed in her room and cry. This happened quite a bit. It was not a fun way to go through high school.
In my college years, I managed to graduate with a 3.65 GPA despite the fact that I often had to leave mid-class and duck into the rest room because I was so very sick. It was very challenging! I did whatever I had to in order to "catch up" on anything I missed for all of the inconveniently timed trips to the bathroom. It was exhausting and many tears were shed in those college bathrooms! Honestly, I look back and I don’t know how I did it!
Anyway at the age of 23 my gynecologist tried a couple of different birth control pills to try to tame my symptoms. The pills he gave me made me much, much sicker. He then told me he thought I might possibly have a disease called endometriosis. He explained that to see if I had endometriosis a surgical procedure called a laparoscopy would need to be done. While I wasn't wild about the idea of surgery, I certainly wanted to do anything I possibly could to find out what was wrong (because there was no doubt that something was very wrong)!!!
So in 1992 I had my first laparoscopy. My gynecologist diagnosed me with endometriosis. He said he had "cleaned me out" and implied that I was going to start feeling much, much better now. Well that relief he promised never came! (Just 10 months later, another surgeon who was MUCH more experienced with endometriosis did another laparoscopy and found lots more endometriosis)!
After the first surgery, my GYN put me on yet another different birth control pill. I was the sickest ever! I was having all of my usual symptoms (terrible hemorrhaging, agonizing menstrual cramps, nausea, diarrhea, etc). In addition, I was now experiencing extremely severe hot flashes and other new symptoms. Plus I was still recovering from the surgery itself. I was sicker than ever! (I now know from various conversations with pharmacists and other gynecologists that the class of birth control pills he had me using is not a good choice for endometriosis patients and it was why I had the TERRIBLE hot flashes)!
I was working lots of hours and being so sick was making it almost impossible to function at work or home. Between the pain, the bleeding, the exhaustion, and the hot flashes… I was very ill!!!
Once I had a diagnosis of endometriosis, I was hungry for any information I could get my hands on. So, sick as I was, I went on a “hunt” for anything I could possibly find about endometriosis. Let’s just say that the information I found initially was scant to say the least! My GYN gave me a very skimpy brochure on endometriosis that was published by a pharmaceutical company pushing their product. This was not exactly an informative brochure! That’s it. When I asked him about other resources available on endometriosis, he couldn’t come up with anything else!
I then went to my local library. This was a fantastic library that had always had what I needed when I needed it. I searched for any information I could find on endometriosis. I found NOTHING! I asked the librarian for help. She was also unable to find a single bit of information on endometriosis. Being 1992, I didn’t have the Internet to turn to as an endometriosis resource. I was not a happy camper!
I went to various places. Finally, one day I went to the local Barnes & Noble bookstore. I spent hours & hours combing through books in the women’s health and self-help book sections. I searched and searched. I found very little. A couple of books had the word endometriosis in the index but when I turned to the only page listed for it, there would simply not be any helpful information.
Then I made an important discovery! Tucked in the back of one of the books in the “resources” section was information on The Endometriosis Association. I scribbled down the contact information for The Endometriosis Association and was very pleased to have found an entire organization dedicated to endometriosis education, support, and research. (The rest of that book didn’t really interest me so I didn’t purchase it).
I had what I needed: contact information for an organization dedicated to endometriosis!
I went home and called The Endometriosis Association!
Since this post is already quite lengthy, I think I’ll stop at this juncture and save the next part for another post!
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
So please stay tuned to find out how The Endometriosis Association helped me to learn about the illness, get needed support, and feel less alone!!!
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
7/10/2008
ENDO SURVIVOR! Our Very First Guest Blogger With A Message Of Hope and Determination - Elaine's "Endo Story"!!!
Editor's Note: Elaine refers several times in her article to BCPs. This is short for the birth control pills that she took to treat her endometriosis. As always, PLEASE refer to the disclaimer at the top of this endo blog's homepage. This blog does NOT dispense medical advice. This is one woman's story of her endo journey. Elaine is a former (volunteer) endometriosis support group leader.
Today's First Ever "Jeanne's Endo Blog" Guest Blogger is Elaine:
"Endo Story": I Am An Endo Survivor by Elaine
I am writing this to those at various stages of diagnosis and/or treatment of endometriosis, not because I have any answers, but because my story shows that there is sometimes a rainbow following the rain.
I am an endo survivor.
I am 46-years-old as I write this. I am told by my gynecologist that I am officially in peri-menopause. My understanding is that this is the stage women practice to go through “real” menopause. After the suffering I have been through I am ready to embrace menopause with open arms.
Every 25 – 30 days, I begin to watch for my period. I have the same feelings as every “normal” woman out there doing the same, or at least I think I do. Finally do, as the case may be, as this wasn’t always the way it was. My anticipation of my period wasn’t always just dreading the inconvenience, the occasional cramps, and the tiredness that I get now. Also, unlike a woman who might take these feelings for granted, I rejoice now that I am able to feel “normal” dread and the not the previous dread that I used to feel.
I was late bloomer. I didn’t start getting my period until I was fourteen-years-old. I remember wishing it would start, feeling left out of conversations with peers who knew the experience first hand. Whoever said “be careful what you wish for” knew the truth. My first period came with cramps. By my third period, I had diarrhea, nausea, cramps, mood swings, and a heavy flow. Did I mention cramps? Later, I would add bloating; lower back aches, vomiting, and breast tenderness.
Unlike many women with endometriosis who have a hard time being diagnosed, I did not. I was self diagnosed immediately. I had text book symptoms and a sister who paved the way. My mom suggested a visit to the same MD that performed my sister’s laparoscopy, but as a young teen, I was terrified of the pelvic exam. I was also determined to avoid a two-day hospital stay and surgery! I preferred to suffer. Besides there were some months that weren’t actually that bad.
Once when I was in High School, I fainted during an attack of cramps. The nurse told me I had to see an MD or I wouldn’t be allowed back on her couch in following months. I stayed home from then on when I knew that cramps were going to interfere with learning.
When I entered college and got my first job, missing days became more of a challenge.
I saw the doctor who treated my sister. A diagnosis wasn’t difficult, as I mentioned I had text book symptoms. He prescribed Birth Control Pills (BCPs) and life became tolerable.
Unfortunately, BCP didn’t solve all of my symptoms and the doctor suggested a laparoscopy. The next few years began my doctor hopping years. I changed doctors each time they suggested surgery, which was usually after I got my first prescription for pills and returned due to symptoms. I took anti-nausea medications, and pain killers, and was eventually diagnosed with Irritable Bowel Syndrome (IBS).
I stayed on BCP, avoiding surgery until 1988. I was 27 years old and had suffered through over 150 periods. However, after all my doctor hopping, I chose to put my trust in the wrong doctor. I chose an MD with no training in laser surgery. She had a partner who was suppose to assist, but at the last moment, he left to deliver a baby. I ended up having a diagnostic laparoscopy only that confirmed what the MD had been telling me all along, but I now had a few grainy Polaroid ® photos to prove it.
During my post surgery visit with my MD, I questioned medications popular at that time for treating endo and the connection with suicidal thoughts. My questions appeared to influence her decision not to have me take medication other than to continue with BCP. Basically, I had the surgery for nothing.
Well, I guess two good things came from having the surgery:
One, I joined the Endometriosis Association and that lead to me meeting wonderful people who offered support and advice through a local support group.
And, future MDs that I met didn’t jump in right away wanting me to have surgeries. Although, at least one pressured me to let him do a surgery just to be sure the diagnosis was correct. I only went to him once, but soon after I found an MD willing to change my BCP prescription to help when the symptoms returned, grew worse, and or side effects were bothersome.
I changed BCP over 20 times during the 23 years I was on them. Some I took only 3 months, some I used for years. Some I revisited after being away for a while and found they worked better than before. A wonderful doctor even battled my insurance at one point to get them to pay for a brand that they had moved off the drug formulary to encourage the use of generics.
A woman attending the support group almost had me convinced that I needed to have routine laparoscopies to know what was going on. She supported the concept that the BCP masked symptoms while allowing the endo to continue to grow while I naively went about life. I had so many fears at that time about my future, and many unanswered questions. I worried about scarring from surgery as much as I worried about scarring from the endo growths. I worried about my future. I could only qualify for disability insurance with endometriosis as an exclusion, so I worried about becoming unable to work.
I never did have a second surgery. I began taking Phenobarbital for bowel cramps and IBS.
It was during this time that I discovered that hormones affect bowel cramping. I felt a new understanding of why the pain meds didn’t help my menstrual cramps – they were bowel cramps. It is easy to confuse the two.
Eventually I went off the Phenobarbital with the help of an MD who suggested over the counter GasX to control cramps, limiting fatty foods, and increasing fiber. It was also around this time that I started eating yogurt. These days ads on television tout yogurt with active cultures as a cure for bowel issues, but back then, I made the link when I began feeling better with yogurt.
I also added calcium pills, multivitamins, fish oil, and exercise to my life. I found yoga helped strengthen my back muscles and reduced the lower back pain. Earlier, I had been told by a physical therapist that there was nothing they could do to help the endo induced pain. So I credit the yoga and yogurt for that help.
In 2004, I was advised to stop taking BCP during a time when I was trying to have heart symptoms evaluated. I had planned (with my MDs encouragement) to take BCP right through to menopause.
This new development really caught me off guard. BCP were a necessity in my eyes. I couldn’t go without them.
Well, I now know that I can! I feel normal for the first time in my life. I dread the idea of hot flashes in my future, dry skin, mood changes, etc, but I love the idea that I can join in conversations with peers for the first time in my life and feel “normal”. (Although I may tire of that quickly once I have a hot flash).
I have to admit after so many years on BCP, I had stopped having periods and had gotten used to this. It was kind of tricky to get back into the habit of counting days and planning on a period each month. But, I am pleasantly surprised to find that although I have cramps, they are nothing like what I had before, and that my periods are more regular than before.
I don’t know what truly helped my endo. The 23 years on BCP? Yogurt controlling my IBS symptoms? Exercise (relaxing with yoga)?
I just know that for the first time in my life I feel good.
My wish is for all women with endometriosis to reach this point.
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com. The "endo story" above was written in its entirety by Elaine (an endometriosis patient and former endometriosis support group leader).
Today's First Ever "Jeanne's Endo Blog" Guest Blogger is Elaine:
"Endo Story": I Am An Endo Survivor by Elaine
I am writing this to those at various stages of diagnosis and/or treatment of endometriosis, not because I have any answers, but because my story shows that there is sometimes a rainbow following the rain.
I am an endo survivor.
I am 46-years-old as I write this. I am told by my gynecologist that I am officially in peri-menopause. My understanding is that this is the stage women practice to go through “real” menopause. After the suffering I have been through I am ready to embrace menopause with open arms.
Every 25 – 30 days, I begin to watch for my period. I have the same feelings as every “normal” woman out there doing the same, or at least I think I do. Finally do, as the case may be, as this wasn’t always the way it was. My anticipation of my period wasn’t always just dreading the inconvenience, the occasional cramps, and the tiredness that I get now. Also, unlike a woman who might take these feelings for granted, I rejoice now that I am able to feel “normal” dread and the not the previous dread that I used to feel.
I was late bloomer. I didn’t start getting my period until I was fourteen-years-old. I remember wishing it would start, feeling left out of conversations with peers who knew the experience first hand. Whoever said “be careful what you wish for” knew the truth. My first period came with cramps. By my third period, I had diarrhea, nausea, cramps, mood swings, and a heavy flow. Did I mention cramps? Later, I would add bloating; lower back aches, vomiting, and breast tenderness.
Unlike many women with endometriosis who have a hard time being diagnosed, I did not. I was self diagnosed immediately. I had text book symptoms and a sister who paved the way. My mom suggested a visit to the same MD that performed my sister’s laparoscopy, but as a young teen, I was terrified of the pelvic exam. I was also determined to avoid a two-day hospital stay and surgery! I preferred to suffer. Besides there were some months that weren’t actually that bad.
Once when I was in High School, I fainted during an attack of cramps. The nurse told me I had to see an MD or I wouldn’t be allowed back on her couch in following months. I stayed home from then on when I knew that cramps were going to interfere with learning.
When I entered college and got my first job, missing days became more of a challenge.
I saw the doctor who treated my sister. A diagnosis wasn’t difficult, as I mentioned I had text book symptoms. He prescribed Birth Control Pills (BCPs) and life became tolerable.
Unfortunately, BCP didn’t solve all of my symptoms and the doctor suggested a laparoscopy. The next few years began my doctor hopping years. I changed doctors each time they suggested surgery, which was usually after I got my first prescription for pills and returned due to symptoms. I took anti-nausea medications, and pain killers, and was eventually diagnosed with Irritable Bowel Syndrome (IBS).
I stayed on BCP, avoiding surgery until 1988. I was 27 years old and had suffered through over 150 periods. However, after all my doctor hopping, I chose to put my trust in the wrong doctor. I chose an MD with no training in laser surgery. She had a partner who was suppose to assist, but at the last moment, he left to deliver a baby. I ended up having a diagnostic laparoscopy only that confirmed what the MD had been telling me all along, but I now had a few grainy Polaroid ® photos to prove it.
During my post surgery visit with my MD, I questioned medications popular at that time for treating endo and the connection with suicidal thoughts. My questions appeared to influence her decision not to have me take medication other than to continue with BCP. Basically, I had the surgery for nothing.
Well, I guess two good things came from having the surgery:
One, I joined the Endometriosis Association and that lead to me meeting wonderful people who offered support and advice through a local support group.
And, future MDs that I met didn’t jump in right away wanting me to have surgeries. Although, at least one pressured me to let him do a surgery just to be sure the diagnosis was correct. I only went to him once, but soon after I found an MD willing to change my BCP prescription to help when the symptoms returned, grew worse, and or side effects were bothersome.
I changed BCP over 20 times during the 23 years I was on them. Some I took only 3 months, some I used for years. Some I revisited after being away for a while and found they worked better than before. A wonderful doctor even battled my insurance at one point to get them to pay for a brand that they had moved off the drug formulary to encourage the use of generics.
A woman attending the support group almost had me convinced that I needed to have routine laparoscopies to know what was going on. She supported the concept that the BCP masked symptoms while allowing the endo to continue to grow while I naively went about life. I had so many fears at that time about my future, and many unanswered questions. I worried about scarring from surgery as much as I worried about scarring from the endo growths. I worried about my future. I could only qualify for disability insurance with endometriosis as an exclusion, so I worried about becoming unable to work.
I never did have a second surgery. I began taking Phenobarbital for bowel cramps and IBS.
It was during this time that I discovered that hormones affect bowel cramping. I felt a new understanding of why the pain meds didn’t help my menstrual cramps – they were bowel cramps. It is easy to confuse the two.
Eventually I went off the Phenobarbital with the help of an MD who suggested over the counter GasX to control cramps, limiting fatty foods, and increasing fiber. It was also around this time that I started eating yogurt. These days ads on television tout yogurt with active cultures as a cure for bowel issues, but back then, I made the link when I began feeling better with yogurt.
I also added calcium pills, multivitamins, fish oil, and exercise to my life. I found yoga helped strengthen my back muscles and reduced the lower back pain. Earlier, I had been told by a physical therapist that there was nothing they could do to help the endo induced pain. So I credit the yoga and yogurt for that help.
In 2004, I was advised to stop taking BCP during a time when I was trying to have heart symptoms evaluated. I had planned (with my MDs encouragement) to take BCP right through to menopause.
This new development really caught me off guard. BCP were a necessity in my eyes. I couldn’t go without them.
Well, I now know that I can! I feel normal for the first time in my life. I dread the idea of hot flashes in my future, dry skin, mood changes, etc, but I love the idea that I can join in conversations with peers for the first time in my life and feel “normal”. (Although I may tire of that quickly once I have a hot flash).
I have to admit after so many years on BCP, I had stopped having periods and had gotten used to this. It was kind of tricky to get back into the habit of counting days and planning on a period each month. But, I am pleasantly surprised to find that although I have cramps, they are nothing like what I had before, and that my periods are more regular than before.
I don’t know what truly helped my endo. The 23 years on BCP? Yogurt controlling my IBS symptoms? Exercise (relaxing with yoga)?
I just know that for the first time in my life I feel good.
My wish is for all women with endometriosis to reach this point.
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com. The "endo story" above was written in its entirety by Elaine (an endometriosis patient and former endometriosis support group leader).
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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