The Endo Center of San Francisco support group for Endometirosis aims to offer support to Endometriosis sufferers and their friends/family. The group is not primarily a place to get information, but a place for support!
OBS! People who are actively participating in live support groups have been shown to have increased T-cells, ie stronger immune systems than people who are not active in live groups.
The meetings are sometimes held at the Noe Valley Public Library on 451 Jersey Street, San Francisco, CA 94114 (Nearest MUNI stop at 24th street). And sometimes at Maxfields coffee. Meetings are about 2 hours long.
UPCOMING MEETINGS:
Sunday April 26th, 2009, 11-1pm
Maxfield's House of Caffeine
398 Dolores Street (by 17th St, MUNI stop Church Street)
Open meeting, ie, No Topic, just come for some tea and chatting.
The group is non-religious, non political, non profit, free of charge and sponsored by the ERC.
To read my personal Endo story got to:
-healingendo.blogspot.com
Wednesday, April 9, 2008
What is Endometriosis?
"Endometriosis is a reproductive and immunological illness affecting millions of women and girls around the world. Mistakenly stigmatized as merely painful periods, Endometriosis is far more than just "killer cramps".
-www.endocenter.org/
"Endometriosis is a painful, chronic disease that affects 5 1/2 million women and girls in the USA and Canada, and millions more worldwide. It occurs when tissue like that which lines the uterus (tissue called the endometrium) is found outside the uterus...This results in internal bleeding, breakdown of the blood and tissue from the lesions, and inflammation -- and can cause pain, infertility, scar tissue formation, adhesions, and bowel problems."
-www.endometriosisassn.org
Worth noting:
"...in rare cases, men have developed endometriosis when they've been treated with estrogen after prostate surgery."
-womenshealth.about.com
"..It is estimated that endometriosis is active in 10% of women..., making it more common than diabetes."
-monashivf.com
-www.endocenter.org/
"Endometriosis is a painful, chronic disease that affects 5 1/2 million women and girls in the USA and Canada, and millions more worldwide. It occurs when tissue like that which lines the uterus (tissue called the endometrium) is found outside the uterus...This results in internal bleeding, breakdown of the blood and tissue from the lesions, and inflammation -- and can cause pain, infertility, scar tissue formation, adhesions, and bowel problems."
-www.endometriosisassn.org
Worth noting:
"...in rare cases, men have developed endometriosis when they've been treated with estrogen after prostate surgery."
-womenshealth.about.com
"..It is estimated that endometriosis is active in 10% of women..., making it more common than diabetes."
-monashivf.com
Discussion Topics
1. What do we do to prevent pain (nutrition exercise etc)?
What do we do to control pain when it's there (different painkillers, warm water bottles)? For this meeting those who like could bring in their medications or other pain relief help (TENS etc).
2. Relationships? How do we deal with them and what are our fears? (work relationships, spouses, friends, family)?
Mood swings, emotional support? Does the Endo diagnosis effect your relationships with people? What can we do to prevent conflicts/misunderstandings? Do we educate everyone or not? How do you interact when you are in pain? (angry, sad, isolation, being part despite pain?)
3. Traditional treatments?
What are our experiences/feelings? How do we cope with surgery? Hormonal treatments etc?
4. Alternative treatments?
Are there any? Has anyone tried them? Heard about them? Did they work? (physical therapy, acupuncture, massage, chiropractic, stress reduction, herbs, qi-gong, exercise, yoga, meditation, nutrition).
5. Professional carriers?
What is our experience in the professional world? What can we do to make our bosses/companies understand? How can we work better? What rights do we have if any? Can we adjust our carriers to function better with our lives?
6. Stress?
Does it factor in? What is your experience? How much stress did Endo itself add? How do we address it?
7. Solutions?
What solutions do we see? What have we tried? What worked/didn't work?
8. Infertility?
Adoption, IVF? What are our feelings/experiences?
9. Related health problems
What have we experienced? Migraine, allergies, fibromyolga, candida.
10. Self-image.
Do we feel handicapped? How do we deal with this? What do you do, seven things, to help yourself feel more whole/when in pain or not, in relation to your body and people around you. Five things to not do.
11. Bringing partners/family members or a close friend to a meeting.
On this popular special occasion meeting we open up the meeting to our loved once. We each bring one friend/partner or family member who is a close part of our life and we let these members discuss how endo has effected them.
In advance, let your partner prepare 3 things he or she has experienced as the most difficult for them related to endo. Also, write down 3 possible solutions/coping strategies that they felt have worked to solve specific endo related problems. This kind of meeting can feel very uplifting to all partners of endo sufferers as they learn new coping tools and see that they are not alone.
12. Bring your journal
We can bring a short part of our journal (for us who use one) and read it loud to the group. If you don't have a journal, you can just tell a short story of a particular day in your endo-life.
14. The emotional aspect of endo.
Hormonal mood swings. Feelings of despair. The loss of health. Loss of dream jobs/carrieers. Loss of fertility. Loss of partners. Loss of internal organs. Loss of perceived femininity? Loss of life as we knew it. Loss of control. How do we cope with this loss and are there any gains?
15. Depression
What do you do to keep going? What is fun? Motivation?
16. Coping with chronic pain.
Write down 5 things you have tried that didn't work. Write down 5 things that you do or have done that worked for you.
17. Story Telling
Telling our Endo stories is the fundamental backbone of the support group meeting. Many of us have experienced prolonged trauma caused by our endo. For us to be able to put words on what we've been through is very healing indeed.
This is also a way for everyone to introduce themselves to each other. Usually the first two meetings are dedicated to story tellings and whenever someone new comes to a meeting they get to tell their endo story to the group regardless of the day's topic.
Please feel free to email me ideas and suggestions for additional topics!
info@ravepolice.com
What do we do to control pain when it's there (different painkillers, warm water bottles)? For this meeting those who like could bring in their medications or other pain relief help (TENS etc).
2. Relationships? How do we deal with them and what are our fears? (work relationships, spouses, friends, family)?
Mood swings, emotional support? Does the Endo diagnosis effect your relationships with people? What can we do to prevent conflicts/misunderstandings? Do we educate everyone or not? How do you interact when you are in pain? (angry, sad, isolation, being part despite pain?)
3. Traditional treatments?
What are our experiences/feelings? How do we cope with surgery? Hormonal treatments etc?
4. Alternative treatments?
Are there any? Has anyone tried them? Heard about them? Did they work? (physical therapy, acupuncture, massage, chiropractic, stress reduction, herbs, qi-gong, exercise, yoga, meditation, nutrition).
5. Professional carriers?
What is our experience in the professional world? What can we do to make our bosses/companies understand? How can we work better? What rights do we have if any? Can we adjust our carriers to function better with our lives?
6. Stress?
Does it factor in? What is your experience? How much stress did Endo itself add? How do we address it?
7. Solutions?
What solutions do we see? What have we tried? What worked/didn't work?
8. Infertility?
Adoption, IVF? What are our feelings/experiences?
9. Related health problems
What have we experienced? Migraine, allergies, fibromyolga, candida.
10. Self-image.
Do we feel handicapped? How do we deal with this? What do you do, seven things, to help yourself feel more whole/when in pain or not, in relation to your body and people around you. Five things to not do.
11. Bringing partners/family members or a close friend to a meeting.
On this popular special occasion meeting we open up the meeting to our loved once. We each bring one friend/partner or family member who is a close part of our life and we let these members discuss how endo has effected them.
In advance, let your partner prepare 3 things he or she has experienced as the most difficult for them related to endo. Also, write down 3 possible solutions/coping strategies that they felt have worked to solve specific endo related problems. This kind of meeting can feel very uplifting to all partners of endo sufferers as they learn new coping tools and see that they are not alone.
12. Bring your journal
We can bring a short part of our journal (for us who use one) and read it loud to the group. If you don't have a journal, you can just tell a short story of a particular day in your endo-life.
14. The emotional aspect of endo.
Hormonal mood swings. Feelings of despair. The loss of health. Loss of dream jobs/carrieers. Loss of fertility. Loss of partners. Loss of internal organs. Loss of perceived femininity? Loss of life as we knew it. Loss of control. How do we cope with this loss and are there any gains?
15. Depression
What do you do to keep going? What is fun? Motivation?
16. Coping with chronic pain.
Write down 5 things you have tried that didn't work. Write down 5 things that you do or have done that worked for you.
17. Story Telling
Telling our Endo stories is the fundamental backbone of the support group meeting. Many of us have experienced prolonged trauma caused by our endo. For us to be able to put words on what we've been through is very healing indeed.
This is also a way for everyone to introduce themselves to each other. Usually the first two meetings are dedicated to story tellings and whenever someone new comes to a meeting they get to tell their endo story to the group regardless of the day's topic.
Please feel free to email me ideas and suggestions for additional topics!
info@ravepolice.com
Meeting Guidelines
General guidelines for the meetings
Everyone will get 10-15 minutes of talk time (depending on how many people are present) and straight after a person has finished talking, everyone can ask questions for about 5 minutes. Then we go to the next person. Write down your questions while someone is talking to minimize interruptions.
The meetings are usually about 2 hours long and include a short break for mingling.
Confidentiality agreement
At the support group meetings we request complete confidentiality. This is for the benefit of all. What is said within the group stays within the group. If something feels specifically important to share outside this room, do not mention any names. For everyone to feel safe in the group it is a necessary measure.
How we talk
It's easy to forget the guidelines for how we talk in the meeting so here's a reminder.
1. Don't give advice unless it is specifically asked for.
2. Instead share your experience, for example: "I had back pain and what I did was…"
3. Don't try to solve someone else's problem.
4. Listen.
5. Wait for your turn to share.
6. Stick to the topic of the meeting.
The meetings are about sharing and giving support only.
Attendance
We all know how difficult it is to get a chance in our busy lives to go to a support group meeting. Between our struggling with endometriosis, spending time with family and friends, and making a living, it can be a challenge to attend meetings regularly.
It is perfectly fine to attend meetings sporadically but the more you come the closer relationships you are able to create. Also remember that even if a specific subject does not interest you so much, your presence at a meeting may help others. You may have an experience or a specific knowledge that will really make someone else's life easier. Another time, you may be the one to benefit from what you hear someone else say. Know that it has been scientifically proven that people who are active in a support group have much better medical outcome than people who are not part of a support group. The more help you give and receive, the better your health will be!
Everyone will get 10-15 minutes of talk time (depending on how many people are present) and straight after a person has finished talking, everyone can ask questions for about 5 minutes. Then we go to the next person. Write down your questions while someone is talking to minimize interruptions.
The meetings are usually about 2 hours long and include a short break for mingling.
Confidentiality agreement
At the support group meetings we request complete confidentiality. This is for the benefit of all. What is said within the group stays within the group. If something feels specifically important to share outside this room, do not mention any names. For everyone to feel safe in the group it is a necessary measure.
How we talk
It's easy to forget the guidelines for how we talk in the meeting so here's a reminder.
1. Don't give advice unless it is specifically asked for.
2. Instead share your experience, for example: "I had back pain and what I did was…"
3. Don't try to solve someone else's problem.
4. Listen.
5. Wait for your turn to share.
6. Stick to the topic of the meeting.
The meetings are about sharing and giving support only.
Attendance
We all know how difficult it is to get a chance in our busy lives to go to a support group meeting. Between our struggling with endometriosis, spending time with family and friends, and making a living, it can be a challenge to attend meetings regularly.
It is perfectly fine to attend meetings sporadically but the more you come the closer relationships you are able to create. Also remember that even if a specific subject does not interest you so much, your presence at a meeting may help others. You may have an experience or a specific knowledge that will really make someone else's life easier. Another time, you may be the one to benefit from what you hear someone else say. Know that it has been scientifically proven that people who are active in a support group have much better medical outcome than people who are not part of a support group. The more help you give and receive, the better your health will be!
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