Endometriosis: #MyEndometriosisQuestion – a special series

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

Endometriosis (pronounced en-doh–mee–tree–oh–sis) is often described as an ‘invisible disease’ which affects approximately one in ten women and those assigned female at birth worldwide. It can affect any person assigned female at birth of a childbearing age, regardless of race or ethnicity. Endometriosis is a condition where cells similar to the ones in the lining of the womb (uterus) are found elsewhere in the body. Each month these cells react in the same way to those in the womb, building up and then breaking down and bleeding. This can cause inflammation, pain, and the formation of scar tissue. Endometriosis can have a huge impact on people's lives including causing a range of problems including chronic pain, infertility, and challenges fulfilling work and social commitments.

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.

References

James Duffy, Martin Hirsch, Claire Barker, Selena Ryan-Vig and Sarah Chapman have nothing to disclose.

James’ Duffy’s biography appears below.

Read Martin Hirsch’s biography.

Read Claire Barker’s biography.

Join in the conversation on Twitter with @CochraneUK and @CochraneCGF or leave a comment on the blog.

Please note, we cannot give medical advice and do not publish comments that link to individual pages requesting donations or to commercial sites, or appear to endorse commercial products. We welcome diverse views and encourage discussion but we ask that comments are respectful and reserve the right to not publish any we consider offensive. Cochrane UK does not fact check – or endorse – readers’ comments, including any treatments mentioned.



Endometriosis: #MyEndometriosisQuestion – a special series by James Duffy

is licensed under a Creative Commons Attribution-NoDerivatives 4.0 International

15 Comments on this post

  1. Hi,

    I have an unusual question in regards to pain…

    My wife has stage IV deep infiltrating endometriosis but she also has fibromyalgia. She struggles at times to distinguish where her pain is coming from. This makes her worried because she doesn’t know if her endo is coming back or it is fibromyalgia.

    She had a discharge similar to ovulation, which usually last one day. This time it was 7 days straight. Stabbing pain and squeezing of ovaries feeling came back, but the pain goes is also fibromyalgia-like all overher body.

    Not to complicated it any further… is there any research done about the connection between both disorders?

    Thank you so much!

    Lucjan / Reply
  2. Hi. Recently diagnosed at age of 41, stage 4 deep infiltrating endo and adenomyosis. Typically what would be the pros and cons of the treatment options? 1. Conservative surgery to remove endo 2. Total hysterectomy 3. total hysterectomy with bilateral salpingo-oophorectomy #MyEndometriosisQuestion

    Alison Anon / Reply
    • Hello Alison, thanks so much for posting. We’ll share your question with our experts and you’ll receive a reply on here shortly. Kind regards, Selena [Editor]

      Selena Ryan-Vig / (in reply to Alison Anon) Reply
    • Hello Alison,

      Lara Cowpe has replied to your question.

      Lara is an occupational therapy lecturer who is affected by endometriosis.

      She said:

      “I recently had excision surgery for severe endometriosis and am 6 weeks post op. I have noticed a decrease in symptoms – no abdominal cramps during my period and less bowel symptoms e.g. pain, frequency and urgency. It is recommended that the surgeon performing endometriosis excision is trained in this as endometriosis can ‘look’ different – mine had three different appearances. I can’t comment personally on hysterectomy surgery but I would be cautious of advice that says this is ‘a cure’. My understanding is that it is not and some people still experience symptoms. I hope other panel members can help with this question. Treatment options are very individual to each person with #endometriosis. Endometriosis UK have information here on Endometriosis treatment: https://www.endometriosis-uk.org/endometriosis-treatment.

      Kind regards, Selena (on behalf on Lara)

      Selena Ryan-Vig / (in reply to Alison Anon) Reply
    • Dr Martin Hirsch has replied:

      “This is a really difficult question without knowing your priorities or goals of treatment. I commonly suggest patients split goals by symptoms and these are normally either 1. Pain relief, or 2. Achieving a pregnancy.

      If pain is the priority the treatment recommendations will vary depending on whether a women’s family is complete. If fertility and achieving a pregnancy is the primary goal and a women has been trying to conceive for some time I routinely recommend discussing matter with a fertility expert to discuss the merits of fertility treatments.

      There is limited evidence to support the role of surgery before fertility treatment with exceptions being blocked and swollen fallopian tubes, large endometrioma cysts, and inaccessible ovaries. With regard to treating pain associated with deep / stage 4 endometriosis, conservative surgery for has been shown to improve pain (https://bit.ly/3lJ5M8Q) however there are risks of disease recurrence / persistence requiring repeat surgery and more risks. This allows for future pregnancy and for some women is essential.

      When considering a hysterectomy for pain, the pro / cons of a total hysterectomy vs a total hysterectomy with bilateral salpingo-oophorectomy need to be considered. The European Guidelines for Human reproduction and Embryology (https://bit.ly/2NDcNeJ) suggest pain relief is best achieved with removing the ovaries at the time of a hysterectomy. This will lead to surgical menopause.

      The risks / benefits of this need to be discussed in length with your endometriosis specialist. These can be partially offset by the use of hormone replacement therapy.

      The recurrence of pain symptoms following hysterectomy and removal of the ovaries with or without hormone replacement therapy (HRT) found that no women (0/57) had recurrence without HRT and four women (4/115) had recurrence with an HRT called tibolone. This would suggest that following hysterectomy (with removal of ovaries) pain symptoms are well controlled although further high-quality research evidence is required”.

      Claire Barker, who is affected by endometriosis, also said:

      “I’d recommend joining a #endometriosis support group if one is available to you.
      Endometriosis UK run several in the UK: http://endometriosis-uk.org/find-a-support-group

      Sometimes hearing other women’s experiences really help with decision making”.

      Selena Ryan-Vig / (in reply to Alison Anon) Reply
  3. Hello Bijoya, thanks very much for your question. Our panel will get back to you tomorrow. I will post the response and link here.

    Dr James M N Duffy / Reply
  4. Hi, I am a 41 year old who was put on depo- provera at the age of 17 and stayed on it until 31 by 33 was suffering huge problems, am now registered disabled with also lots of undiagnosed symptoms and now no treatment.Have tried, methotrexate, colchicine, Azathoprine and all pain meds. Couldn’t tolerate either of the immunosuppressive drugs kept getting infections. . Just recently I’ve had a area in my groin become swollen the lots of blood coming out of the skin while period not coming. All my legs are swollen and have the feeling lymph system blocked. Does this happen to other women? While searching help with symptoms also diagnosed with Sjögren’s syndrome and tissue disease. Oh and have a genetic deletion on 1 chromosome.
    Happy news about the new research wish I was young enough to have joined!

    Victoria / Reply
    • Hello Victoria, thanks very much for your question and sorry to hear about your recent troubles. Our panel are currently working their way through all of the questions submitted and will reply to yours shortly, on here. Though please do seek medical advice from a healthcare professional if you are concerned about current symptoms, our panel cannot give medical advice but can provide information about evidence, guidelines and tips for speaking with a health professional about your problem. Many thanks, Selena [Editor].

      Selena Ryan-Vig / (in reply to Victoria) Reply
    • Thank you so much for your question. You have been through an awful lot. In the UK you can ask your GP to request a referral to an NHS funded endometriosis clinic to discuss your concerns about endometriosis. The British Society for Gynaecological Endoscopy (@BSGE) maintains a list of accredited endometriosis centres: http://www.bsge.org.uk/centre

  5. How early should the MRI be done? In my case early internal examination and USG didn’t indicate anything. For eight years I had to bear the pain. It was my MRI in the 7th year helped to diagnose the endometriosis.

    Bijoya Roy / Reply
    • Hello Bijoya, thanks very much for your question. Our panel are currently working their way through all of the questions submitted and will reply to yours shortly, on here. Many thanks, Selena [Editor].

      Selena Ryan-Vig / (in reply to Bijoya Roy) Reply
    • Hi Bijoya, thank you so much for your question. The panel will respond to your question tomorrow, please check our Twitter account (@CochraneUK). I will post the response on the blog as well.

    • Hello Bijoya,

      Martin Hirsch responded, he 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. He said:

      “Thanks for your question. This is very common question and unfortunately a recurring theme that diagnosis is difficult and often delayed. This is certainly something to discuss with your gynaecologist.

      A Cochrane review summarising the research evidence concluded ultrasound and MRI were both good to diagnose endometriosis involving the ovary & behind the womb: https://bit.ly/3ckmeI3

      It is important to note that a normal scan does not exclude endometriosis and that the treatment of your pain symptoms is the principal goal. This does not always require an MRI and surgery to confirm endometriosis ahead of treatment.

      The NICE guidelines for the diagnosis and management of endometriosis recommend clinicians consider pelvic MRI to assess the extent of deep endometriosis involving the bowel, bladder or ureter: https://bit.ly/3v5qWCl

      Endometriosis may also be a progressive disease which is not present at time point A and then present some years later at time point B. The accuracy of ultrasound (US) is dependent on who performs the scan & there are limited number of expert US centres”

      Kind regards, Selena [Editor], on behalf of Martin Hirsch.

      Selena Ryan-Vig / (in reply to Bijoya Roy) Reply

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