Throughout March, which is Endometriosis Awareness Month, we are sharing blogs that include relevant Cochrane evidence and other information to help inform people’s decisions about endometriosis diagnosis and treatment. The series will also include live Question and Answer sessions on Twitter, and you are invited to submit questions on social media to a panel of experts, using #MyEndometriosisQuestion and tagging @CochraneUK and @CochraneCGF. More details about how to submit your question on each social media platform can be found below.
In this first blog, Dr James Duffy, Cochrane Gynaecology and Fertility editor, Martin Hirsch, a Consultant Gynaecologist at Oxford University Hospitals, and Claire Barker, who lives with endometriosis, introduce #MyEndometriosisQuestion. Evidently Cochrane’s Editors, Selena Ryan-Vig and Sarah Chapman, explain what you can expect from the series and how you can join in.
March is Endometriosis Awareness Month. There is a vibrant online community of people with endometriosis, commonly known as #endosisters, who share knowledge and offer support, along with charities such as Endometriosis UK and grassroots organisations such as Fair Treatment for the Women of Wales.
Endometriosis UK is leading the #EndoTheStigma campaign during Endometriosis Awareness Month. They are encouraging everyone to be more open about endometriosis and asking the public, healthcare practitioners, policymakers, politicians, and workplaces, to come together to raise public awareness of the condition, its symptoms, and the impact it has on people’s lives. This is our contribution to the #EndoTheStigma campaign.
Our #MyEndometriosisQuestion special series is being coordinated by Claire Barker (@EndoLadyUK), Dr James Duffy (King’s Fertility, London), and Dr Martin Hirsch (Oxford University Hospitals).
Claire regularly blogs about her experiences of endometriosis at theendotheworld.com. She has been involved in endometriosis research as both a participant and researcher.
James (@JamesMNDuffy) is a Clinical Fellow working at King’s Fertility, The Fetal Medicine Research Institute, London (kingsfertility.co.uk). His clinical interests include supporting people affected by infertility associated with endometriosis. He is an editor at the Cochrane Gynaecology and Fertility group and has prepared many Cochrane Reviews related to the diagnosis and management of endometriosis.
Martin (@martinhirsch100) is a consultant surgeon working at Oxford University Hospitals (ouh.nhs.uk) and treats people experiencing painful symptoms associated with endometriosis. His research focuses upon improving online information related to the condition, novel diagnostic tests for endometriosis, and redesigning diagnostic and treatment pathways.
What endometriosis is and why it matters
Evidence on endometriosis diagnosis and treatment
It can be difficult to diagnose endometriosis as the symptoms associated with it are very similar to other common conditions including adenomyosis. fibroids, and ovarian cysts. This can lead to long delays in diagnosis which have been highlighted as a significant problem which needs to be urgently addressed within an All-Party Parliamentary Group (APPG) on Endometriosis. The gold standard for diagnosis is key-hole surgery with a biopsy, however ultrasound and MRI (a type of scan that uses strong magnetic fields to produce detailed images of the inside of the body) are being increasingly used to diagnose severe endometriosis. A negative ultrasound scan does not exclude endometriosis.
Treatments should aim to improve the symptoms and quality of life of people with endometriosis. Treatments for pain and other symptoms associated with endometriosis include holistic, medical, and surgical treatments. Treatment for infertility associated with endometriosis often requires specialised treatment including key-hole surgery and IVF (in vitro fertilisation).
The Cochrane Gynaecology and Fertility Group have prepared over 20 reviews investigating the effectiveness and safety of treatments for the management of endometriosis. They have also published five reviews assessing the effectiveness of various diagnostic tests. You can read more about Cochrane Gynaecology and Fertility’s reviews here.
What’s in store?
Live Question and Answer (Q&A) sessions on Twitter
Throughout the month, you are welcome to submit your questions to a panel of experts. The panel includes professionals with expertise in endometriosis diagnosis and treatment, endometriosis researchers, and people with experience of endometriosis.
There will be three live Q&A sessions on Twitter during the month. The first, focusing on diagnosis, will take place on Sunday 7th March 20:00 to 21:00 GMT. The second session will focus on infertility and the third on pain and other symptoms including emotional wellbeing, relationships and work, and longer term impacts (dates/times to be confirmed).
You can follow the live Q&A sessions on Twitter using the hashtag #MyEndometriosisQuestion.
How to ask #MyEndometriosisQuestion
You are welcome to join the conversation by submitting your own questions, either during the live Q&A sessions or at any other time, using the hashtag #MyEndometriosisQuestion and, on Twitter, tagging @JamesMNDuffy, @martinhirsch100, @EndoLadyUK, @CochraneCGF and @CochraneUK.
Your questions will either be answered during the hour itself or during the following week.
On Facebook: Visit the CochraneUK Facebook page and post a comment on our wall, including the hashtag #MyEndometriosisQuestion. You can also send us a direct message.
On Instagram: Visit the Cochrane_UK Instagram page and post a comment on one of our endometriosis posts, including the hashtag #MyEndometriosisQuestion. You can also send us a direct message.
On Evidently Cochrane: post a comment below this blog or any of our blogs on the diagnosis and treatment of endometriosis.
While our experts cannot give specific medical advice, they can provide information about endometriosis, relevant evidence and guidelines, and tips for discussing endometriosis with your own health professional. Our expert panel will do their best to answer your questions individually.
Evidently Cochrane Blogs
Throughout March, we will be sharing a series of blogs on diagnosis and treatment. These blogs summarise Cochrane Reviews which have brought together the evidence from all published research studies.
- In week two (8th-14th), we publish two blogs on diagnosis; one looking at ultrasound and MRI and another at biomarkers.
- In week three (15th-21st), we publish two blogs on infertility associated with endometriosis, with one looking at laparoscopic surgery and the other looking at long‐term GnRH agonist therapy before in vitro fertilisation (IVF) for people with endometriosis.
- In week four (22nd-28th), we publish two blogs on pain associated with endometriosis, one looking at oral contraceptives and one looking at laparoscopic surgery.
- At the end of the month, we will publish a blog addressing some of the questions submitted throughout the month.
- All Party Parliamentary Group (AAP). Endometriosis in the UK: time for change – APPG on Endometriosis Inquiry Report 2020. October 2020. Web. 04 March 2021. Available from: https://endometriosis-uk.org/sites/endometriosis-uk.org/files/files/Endometriosis%20APPG%20Report%20Oct%202020.pdf
- Zondervan KT, Becker CM, Missmer SA. Endometriosis. New England Journal of Medicine, 2020 Mar 26;382(13):1244-1256. doi: 10.1056/NEJMra1810764. https://www.nejm.org/doi/10.1056/NEJMra1810764
James Duffy, Martin Hirsch, Claire Barker, Selena Ryan-Vig and Sarah Chapman have nothing to disclose.
James’ Duffy’s biography appears below.
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