A few weeks ago, I came across an endometriosis blog. Immediately, I was thrilled as here not only reports an endometriosis expert with 15 years of experience in research. Furthermore, his
motivation is to spread high-quality and differentiated information, counteracting the often simplified presentation of the disease in most media. And even though I am not a medical doctor
myself, after all I have seen over the years my impression is that he is very successful in doing so. His name: Matthew Rosser. His blog: Endometriosis Update.
I am very grateful to Dr Rosser, because when I wrote to him, he immediately agreed to an interview :-)
You can find the German translation here.
Dr Rosser, what do you say to the following description of Endometriosis: It is Mini Uteri bleeding during menstruation?
I wouldn’t necessarily say that it is the same as bleeding during menstruation. The thought that endometriosis lesions bleed seems to be rooted in hypothesis rather than observation, that is, there is little observed evidence of lesions bleeding in the same way as the normal endometrium. Endometriotic ovarian cysts hemorrhage, but this again couldn’t be thought of in the same way as menstruation. Of course, it is impossible to physically view endo lesions in the pelvic cavity throughout the menstrual cycle so its hard to say for sure. A lot of people believe that it is the bleeding of lesions that is responsible for the painful symptoms of endo, but I don’t think there is enough evidence to support this. The exact cause of pain in endo still remains somewhat of a mystery, although it would seem there is a complex interaction between localized chronic inflammation, immune system response and the growth and behavior of nerves at the site of endo lesions.
What would you say is the biggest obstacle in finding a cure for Endometriosis?
I would say the biggest obstacle is not knowing how many types of endometriosis there truly are and how they function. The notion that there are only three types of endo (superficial peritoneal, ovarian cystic endo and deep infiltrating endo) is, in my view, overly simplistic. These current classifications are based mostly on crude observations of the lesion structure and location. However, by analyzing endometriosis at the genetic and molecular level I believe we will find there are many different types that respond to different forms of treatment. We have seen this same approach work for other diseases, like breast cancer, where understanding the inherent molecular differences between each person’s tumour has led to more personalized and effective treatment.
Do you have an idea, how it is possible that some Doctors talk about all the differences between cells of the uterus lining and Endometriosis cells under a microscope, and at the same time, there are experts, telling you that there is no difference at all and this would be the problem in finding a cure as everything that destroys Endometriosis would destroy the uterus. What could be the scientific reason, that opinions are so far apart?
Endometriosis and the normal endometrium are definitely similar, but at the same type very distinct. Looking down a microscope at cells from either endometriosis or the endometrium it would be hard to tell the difference. However, saying they are the same just because they look the same is incorrect. Afterall you may be walking down the street and see two houses that look the same from the outside, but does that mean they have the same furniture, the same decorations, the same family inside? No, of course not. We are only beginning to understand just how different endometriosis and the normal endometrium are and it is revealing many similarities and differences. The trouble is finding something that is specifically different about endometriosis that could also be used as a target for a drug or other treatment. Many of the hormonal drugs we use today target both endometriosis and the normal endometrium because they are both responsive to hormones, so a hormonal cure wouldn’t be possible. However, as more and more research is being conducted I believe we will find an endometriosis specific drug target sometime in the future.
Why should women with Endometriosis take hormones or GnRH Analoga?
This is a tricky question because there is not a yes or no answer. The problem with hormonal treatments is that you can give the same medication to different people and get different experiences. Some women find hormonal therapy reduces their pain with few side effects, some women have little pain relief with lots of side effects. It’s a trial and error process that women with endo need to discuss with their doctors. There needs to be a clear dialogue between patients and doctors as well - with patients asking about why the doctor has decided to prescribe a specific treatment, the length of treatment, side effects and the possibility of stopping any treatment they are given. Similarly, doctors need to listen to patients’ feedback on any treatment they prescribe and adjust or change medication to best suit the patient’s needs.
Have you ever seen a patient who got rid of her Endometriosis/symptoms?
I have known women with endo who no longer have symptoms, but this is all too often after many years of medical or surgical therapy. The issue of recurrence of endometriosis is also a tricky one, if endometriosis symptoms do disappear, do they disappear forever? Many studies report women to be pain free after a certain treatment, but only follow up with those patients for months or a few years. Other studies have shown endometriosis can recur many, many years after successful treatment. The idea of a certain treatment being a ‘cure’ is also potentially dangerous as it creates an opportunity for less experienced doctors to be dismissive of recurrent symptoms if they believe the patient has already been ‘cured’.
What are the most common myths about Endometriosis that are important to you to clarify?
There are a lot of answers to this question! I’ll put forward some of the most common though:
- The belief that pregnancy is a cure for endometriosis is false – some women with endo find reduction of their symptoms during pregnancy, but these symptoms often recur postnatally. Also, as over half of women with endo struggle with conception in some way, the suggestion of pregnancy as a cure is just callous and cruel.
- The idea that only women between the ages of 20-35 get endo is false. The vast majority of women with endo start experiencing their symptoms during adolescence, but they may only be diagnosed in adulthood. Endo can affect anyone of any age, race, or social status.
- The idea that hysterectomy is a cure for endometriosis is false. For some reason the idea that endo can be cured by a hysterectomy has become stuck in some people’s heads. Whatever the reason this is definitively false, the best option someone with endo has is complete surgical removal of the endo lesions themselves.
A gynecologist in Germany once told me: “In women with Endometriosis you always have to take care of mental health as well.” What are your observations on Endometriosis and Mental Health?
This is very true. Living with a chronic pain condition is bound to have negative effects on the sufferer’s quality of life, which will impact mental health. Studies have shown that women with endo suffer more with anxiety and depression than women without. There are many reasons for this beyond the obvious painful symptoms. Living with endo often means not being able to work or socialize as much as you would like. This social isolation can be a significant contributor to mental illness in women with endo. Endometriosis is a much misunderstood condition as well, so supporting people with endo is a fundamental part of helping with their mental health. For example, if you are a friend/partner/family member of someone with endo, talk to them about their needs and do your best to understand the limitations that endometriosis can place on them. Educate yourself about endometriosis as well as there is a lot misinformation out there which you don’t want to fall prey to. Fundamentally endometriosis is a condition that affects the whole person, not just their reproductive organs.
What is your opinion on how society has been handling Endometriosis so far?
As time goes on awareness about endometriosis seems to be growing more and more. Even in the last five years I’ve seen an explosion in endo awareness advocated by charities and individual people. One problem that societies all over the world seem to have is an inexplicable aversion to discussing menstruation and menstrual issues. This has hindered the progression of women’s health for centuries and even though it is marginally better today, there is still much work to be done. If anything, I would like to see governments focus on education into menstrual health in schools and dismantle the taboos surrounding it, which will benefit so many people in so many ways. In the research community endometriosis gets more attention every year and, although it isn’t widely funded, there are hardcore groups of researchers out there dedicated to unlocking the secrets of this disease.
This the disease is not only hard for us patients. I can imagine that it is as frustrating (but not as painful;-) for a doctor. Is there an aspect in Endometriosis research that makes you look optimistically in the future?
I’d say the one thing that makes me most optimistic is the amount of research being conducted. Since the year 2000 endometriosis research has increased massively year on year. Each new research publication is a piece of a much larger puzzle that we are slowly putting together and I feel very optimistic about the way future generations of women will be diagnosed and treated.
What, apart from your Blog, are useful resources for Endo information?
Charities and advocacy groups like Endo UK, the World Endometriosis Research Foundation and endometriosis.org have always strived to help and inform women with endo. But with the advent of social media there are so many sources of information out there I think, rather than naming specific sources, it would be better to give some advice on what to look for in a reliable source of endometriosis information:
- Do they use sources for their information? If someone makes a statement on endo, make sure they are backing it up with accurate scientific evidence. If someone isn’t willing to provide a source for their statements, how do you know it is a scientific fact and not just an opinion. Also, check sources to make sure they are legitimate.
- Are they trying to sell you something or promote a certain product? If someone is receiving payment to promote something, they might be biased toward presenting information that shows that product or service in a positive light and ignore contradictory evidence.
- Does the wording sound like it is trying to be scary, or scaring you into reading it. For example, posts that have headlines like ‘This will increase your cancer risk’ or ‘this will destroy your fertility’ are using language to scare you into giving them attention, they don’t care about actually informing you.
- Does it sound too good to be true? If someone is making bold claims about a new cure or a new way to diagnose endometriosis you should always be cautious. Scientific research can often be misinterpreted by non-experts and the claims can either be blown out of proportion or taken out of context. Always check the source of information someone is making a claim about.
Dr Rosser online:
The new blog: https://www.endoupdate.co.uk/
The old blog: http://endo-update.blogspot.com/