A Resource List for Endometriosis
I thought it would be helpful to create a list of resources, as often when I'm asked for them on Instagram, I sometimes forget to include everything. There are so many out there and I want to ensure I do them all justice, so though that I would create this one-stop-shop page where you can find all the relative links in one place.
Endometriosis is a chronic inflammatory condition where tissue similar but not the same as the endometrium is found in areas outside of the uterus. It can be found growing throughout the body but is most commonly discovered in the ovaries, the fallopian tubes and pelvic walls. It can also be found on the bladder and bowel and outside the pelvis.
"Endometriosis triggers a chronic inflammatory reaction resulting in pain and adhesions. Adhesions develop when scar tissue attaches separate structures or organs together. Pain and symptoms due to endometriosis may vary during the menstrual cycle as hormone levels fluctuate." (Endo Ireland)
Symptoms of Endometriosis vary from person to person, but they can include;
Pain in the pelvic and abdominal area
Dysmenorrhea (pain associated with periods)
Heavy menstrual bleeding
Dyspareunia (pain during or after sex or orgasm)
Dyschezia (pain during or after bowel movements)
Dysuria (pain during or after urination)
Rectal bleeding (bleeding from back passage)
The only way to diagnose Endometriosis is via a Laparoscopy with an Endometriosis specialist. Endometriosis cannot be ruled out through an MRI or Ultrasound. You can have clear tests and still have endometriosis (me!). Getting a diagnosis can be hard and many patients have to wait years, if not decades to have their pain recognized. The average wait for an Endometriosis diagnosis on the island of Ireland is 9 years.
Below are a few helpful links if you are looking for support for Endometriosis.
Endometriosis Association of Ireland EAI is the national charity of Endometriosis in Ireland. They are an entirely volunteer-led organization, that is dedicated to educating and empowering people with Endo. They provide factual information and support for anyone going through the condition and are currently campaigning for a multi-disciplinary Endometriosis excision clinic on the island of Ireland.
The Center for Endometriosis Care is one of the leading treatment centers for Endo in the world. Their website provides you with a lot of factual information and medical information, which for me is a little over my head, but has definitely helped when chatting with doctors. As someone whose background is in writing, it can be hard to be taken seriously by doctors or seen as an intellectual equal. Being able to speak their language, read into research and empower myself with the facts and knowledge that CEC discusses, has helped me feel more confident in voicing my opinion and concerns with traditional misconceptions around Endo care. My favourite part of their website is the Endo Library, where you can read from a selection of educational resources.
Another center which is based in America, but also has lots of information and support for Endo patients, no matter where you are based. Dr. Andrew Cook is passionate about ensuring all patients are made aware of Excision Surgery & have the option to access it for their care. He recently started a #BantheBurn campaign to raise awareness about the differences between ablation & excision. The center also produces educational books and newsletters about Endo, all ensuring that you, the patient has as much knowledge as possible!
Nancy's Nook is a private Facebook Group set up by Nancy Petersen. The group provides a plethora of educational information on Endometriosis. There is so much information, it took me a week to get through the basics! What many people find the best part of this group is the surgeon list, as they have a list of nook approved excision surgeons from around the world including the UK, Canada, USA & afar. Please remember that this is not a support group & is purely an educational resource.
Great people to follow on Instagram to learn more about Endometriosis
Are you from the UK?
In the UK under the NHS there are dedicated clinics that treat Endometriosis called BSGE clinics. These are available throughout the UK, except in Northern Ireland, where there is just a provisional clinic in Derry/Londonderry. If you suspect Endometriosis you are entitled to request a referral to these clinics from your GP. Please remember that not every BSGE clinic will be able to offer excision surgery.
Are you in England?
If you are based in England you have access to Excision Surgeons on the NHS. Did you know that no matter what region you are based in, you can request a referral to an NHS excision specialist even if they are out of your area using the choose and book option? This option gives patients a choice. If you want to access excision surgery on the NHS in England and don't have a surgeon in your area you can request a referral to any surgeon in England using the choose and book option. Find out more about your rights here.
Please bear in mind, that unfortunately, the choose and book system does not extend to the rest of the UK and that if you want to see an NHS excision specialist in England but you are in Wales, Scotland or NI, you will either have to try & get an NHS trust transfer or pay for the care privately.
I really hope that this information helps you!
Please let me know if there is anything I have left out, or if you would like any further things covered. Remember that you are not alone, your pain is real and you deserve care, compassion, and support.