Endometriosis UK's scientific research conference
Yesterday I attended Endometriosis UK’s first scientific research conference. It was amazing to have access to all of that insight and research - a pretty intense day and definitely felt like I was back at ‘varsity for a lot of it but so interesting.
Below are some of the main things I took from the conference. Please bear in mind that I am not a medical professional nor a researcher and the below is my understanding of what was presented.
The first session by Prof Stacey Missner (Professor of OBGYN and Reproductive Biology at Michigan State University) centered for me around 3 core areas:
Endometriosis is not one disease. It differs in appearance and it’s unclear whether that is due to a continuum of the disease of whether there are distinct sub categories of the disease.
Symptoms differ massively with 65% of women reporting pain and 33% reporting infertility. We need to identity the sub-categories of disease in order to more effectively treat it.
Timing: two thirds of women are diagnosed before they’re 30. There is some evidence to show a link between low birthweight and endo and the earlier a woman starts her period seems to be linked to increased chances of developing endo.
Numbers: we need more data. The World Endometriosis Research Foundation is standardising data and sample collection through its Endo Phenome and Biobanking Harmonsiation Project (WERF EPHect: https://endometriosisfoundation.org/ephect/).
This is a collaboration between 24 centres in 16 countries, with 12 new centres across 9 additional countries coming on board soon.
The second session by Matthew Rossner (a molecular biologist and science writer who has been researching endo since 2005) focused on Understanding and Critiquing Research.
This session was short as he also hosted a workshop (which I didn’t attend) but he highlighted that this year there have been 841 research articles on endo.
There have been 974 on Crohn’s disease and over 12,300 on diabetes so endo is still not getting the research publication is deserves.
In his blog (http://endo-update.blogspot.com/) he has much more info.
The latest research in pain mechanisms by Dr Katy Vincent DPhil MRCOG
Pain has no primary cortex in the brain. We have a primary visual cortex for vision and a primary auditory cortex for hearing but pain involves a network of brain regions.
Anxiety and depression amplify pain (slide below).
The neurology of the pelvis is so complex that the brain has an incredibly difficult time knowing where exactly the pain is coming from. The nerve supply to the pelvis is incredibly complex and this all sits in what is often an “inflammation soup” (slide below).
Dr. Vincent questioned the effectiveness of adding surgery to this mix.
Something like adenomysosis will cause further irritation across the nerves and both adenomyosis and endo can mean that a woman often has more nerve fibres, in the wall of the uterus for example.
Research shows that there is a clear neuropathic component to endo pain. This suggests it could be treated with neuropathic drugs such as pregabalin.
Chronic pain is associated with altered brain structure, brain chemistry and endocrine function as well as brain volume. Research shows women who have endo but no pelvic pain have increased brain volume compared to women with endo and chronic pelvic pain. This is directly linked to the neuro pathways that “damp” down the pain.
Chronic pain should be treated as a disease in its own right.
The reaction to noxious stimuli (pain) is increased in women with endo. Their brain scans showed that they feel more pain. Whether this is caused by years of pain or whether this pre-dated their pain is unknown. Brain scan research typically only happens after someone has been in pain for some time which makes it hard to know.
Excitatory neurotransmitter levels are altered in endo associated pain - meaning that the nervous system is altered.
Musculoskeltal factors are prevalent. Despite the pelvis containing many muscles physiotherapy is rarely recommended for chronic pelvic pain but can be beneficial.
Translational research into pelvic pain will look at the whole woman and not only at a specific organ.
Main takeaways from the day:
We need more research. Endometriosis research is under funded and more and greater campaigning is required to secure funding. Where you can, take part in research.
We can all play our part in raising awareness and sharing that pain is not normal.
Endometriosis is a chronic pain condition and should be treated as such, with pain management options and support for coping.