A Resource List for Endometriosis
Updated: May 6, 2020
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 thought 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, pelvic walls, the bladder, and bowel.
"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)
Getting a diagnosis
Getting a diagnosis can often take years. The average wait for a diagnosis in the UK is 7.5 years and in Ireland, it's 9 years. The only way to officially diagnose endometriosis is through a laparoscopy surgery, where a skilled endometriosis specialist will excise any endometriosis discovered and send the tissue samples to pathology for a histology report to confirm the disease. This report can take six weeks for the results.
Important questions to ask before your laparoscopy:
Excision or ablation? Have they confirmed with you what removal method they will use? Have they outlined the differences? Excision surgery is the gold standard removal method as tissue is cut out, ablation is when a laser is used to remove the tissue with heat.
What areas will you be checking and will you be checking for extra pelvic endometriosis? Remember Endo is a whole-body disease, will they check your bladder and bowel, will this require bowel prep? You don't want to go through surgery and have areas where endometriosis is missed.
Will you be sending a sample of my excised tissue to pathology for a histology report? The only way to officially diagnose Endo is with a histology report from pathology. Your surgeon should send all excised tissue for a histology report. Results can take up to six weeks.
Will you photograph or video my procedure, will I get copies of this? Having photographic proof can be helpful, in case you ever want to get a second opinion & even for your own validation to finally see what has been causing your pain.
What services will you refer me to after my diagnosis? Endometriosis is a whole-body disease and many people need support after surgery. Confirm whether they will be referring you to see an Endo nurse, a pelvic floor physiotherapist, or a pelvic pain specialist.
It's important to note:
Endometriosis cannot be ruled out through an MRI or Ultrasound. You can have clear tests and still have endometriosis (me!). The current NICE guidelines state:
Do not exclude the possibility of endometriosis if the abdominal or pelvic examination, ultrasound or MRI are normal. If clinical suspicion remains or symptoms persist, consider referral for further assessment and investigation. (NICE, 2017)
Endometriosis cannot be treated by hormonal contraception or chemical menopause. They can offer symptomatic relief but cannot treat the underlying cause of your pain or remove the disease. The only tool we have to remove endometriosis is excision surgery.
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.
Center for Endometriosis Care 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.
Vital Health Endometriosis Center 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!
Endopaedia Endopaedia is an incredibly comprehensive website offering you resources on Endometriosis from the American excision specialist and endometriosis researcher David Redwine. It offers a lot of information on Endo and Dr. Redwine's research, so is good for anyone looking to delve deep and learn thoroughly about it.
Nancy's Nook 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
For information, education & knowledge:
People sharing their stories:
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 which has no BSGE clinic. 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. There are currently clinics offering excision only (that is full excision, not excision and part ablation) in England and Wales. It's important to confirm the removal method prior to signing off on your lap.
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 but you are in Scotland or NI, you will either have to try & get an NHS trust transfer (which involves proving to a healthcare trust or tribunal why they should fund your care out of area) or pay for the care privately.
Are you from Ireland?
In Ireland, there currently are no Endometriosis clinics or excision specialists. The Endometriosis Association of Ireland is campaigning hard for there to be a centre established. To access excision surgery many people from Ireland (myself included), have had to travel to England or further afield.
There are options for Irish citizens traveling for care to have the costs reimbursed from the HSE through the EU directive. If you have any queries or want to learn more contact EAI.
Instagram accounts for people in Ireland who have traveled for care:
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.