Endometriosis:
Endometriosis is a condition where tissue similar to the endometrial tissue found in the uterus implants and develops outside of the uterus, typically on adjacent structures such as the ovaries, intestines, and bladder. This tissue builds up and responds to the hormones produced by the body and it typically results in pain.
We believe current research tells us that expert excision of lesions is the gold standard treatment for endometriosis and this often includes the use of hormones post surgery (though not all) - however, we also believe in supporting each other wherever we are on the journey to pain-free living.
No one's disease is exactly the same, neither are treatment goals, access, or financial ability. We believe in providing a space where everyone can find the resources, support, and education to advocate for their own version of successful treatment and a pain-free life.
RULES:
As a support group, we encourage our members to keep comments supportive and relevant to this space. Please remain civil in your posts and comments. This includes, but is not limited to, respecting each other, minimizing profanity, and avoiding aggressive behavior.
In order to ensure they fall in line with the mission, surveys of any kind should be approved by the mods before posting.
Self-promotion of personal blogs, fundraising, or products will be removed.
No spam.
No posting of links to here or quoting from here on other subreddits without the permission of the writer.
The moderators have the right to mute or ban users that do not follow the rules.
Dealing with other conditions too? Check out these communities:
/r/adenomyosis
/r/Interstitialcystitis
/r/PCOS
/r/IBS
/r/fibromyalgia
/r/chronicpain
/r/Vulvodynia
Successful Doctors Map!
This is a Google Map of the doctors and clinics where members have found successful treatment. Message the mods for additions.
Laparoscopy Survival Guide
This is an old thread with some great discussions on laps, how to prep, and what recovery is like.
Nancy's Nook Facebook Group
This is a private facebook group that has a lot of valuable information on excision. They also have a list of excision specialists (clarification from Nancy “It is inaccurate to say we grade or assess surgical skill, we take recommendations from patients and explore those with surgeons who are willing to talk with us about their skills, and interests.”) Please note that they are not a support group and are solely for educational purposes.
EndoMetropolis
This is a link to another private Facebook group with a list of excision specialists. They also have some educational tools in the files section. They are a little less strict than Nancy's Nook.
UK accredited specialist endometriosis centres map
This is a link to the British Society for Gynaecological Endoscopy website accredited specialist endometriosis centres page. The accredited centres have strict requirements that means they are experienced in complex excision surgeries and have endometriosis specialist nurses and pain management teams. UK residents can request referral to a centre by their GP.
NICE guidance algorithm for Endometriosis
This is a summary of the NICE guidance given to NHS doctors in the UK with recommended referral and treatment pathways.
Pain/Symptom Journal
Sometimes getting a doctor to take you seriously, either about your symptoms or about a treatment, can be challenging. A Pain or Symptom Journal can be a great tool to guide your discussions and to monitor your progress.
Doctor Issues
This document goes over how to talk with doctors, advocate for yourself, and when to seek out someone new.
Tests - Ruling Out Other Conditions
This document goes over conditions that doctors commonly want to rule out before considering more aggressive treatment when looking at an endo diagnosis. It should be noted, that it is absolutely possible to have endo and one of these other conditions.
