The SINTEF researchers writing this article point out that even if endometriosis is not fatal, it has many similarities to cancer. But even if patients aren’t dying, the condition can still result in severe and disabling pain. Photo: Albina Gavrilovic/Shutterstock

Rampant uterine cells can cause disabling pain. Now it’s time to find a cure

Endometriosis: If we utilise all the knowledge we have about cancer, there is reason to hope that effective diagnosis and treatments can be developed to combat the female condition ‘everybody’ is talking about.

This condition isn’t going to kill me, but it’s stealing my life from me”. So wrote 33-year old Kathrine Grooss Tendal in a feature article in the daily Dagsavisen earlier this winter.

More recently, other young women have come out in the papers VG and Aftenposten, and have appeared on the TV channel NRK, telling similar stories about suffering years of disabling pain. All of them are suffering from endometriosis. This is a female condition that many women simply have to learn to live with. But it probably didn’t have to be this way.  

Dual benefit may be possible

Their stories are not unique. They are not even rare. Estimates indicate that about ten per cent of all women of fertile age suffer from endometriosis. This is a condition in which cells from the uterus become attached to other sites in the body where they cause pain and other ailments.

Currently it may take as long as eleven years to get a diagnosis. It is then common to prescribe hormone treatment, often involving a trial and error process using many different medications in an attempt to find a treatment that works.

In the best of cases, such treatments help to relieve symptoms and prevent further spread of the condition. However, for many women, their terrible suffering continues.

We believe, however, that if we utilise all our expertise in the field of cancer treatment, it may be possible to develop methods that will offer a dual benefit to endometriosis sufferers – an early and certain diagnosis followed by individually tailored treatment packages without prolonged trial and error.

Research is behind the curve

Although the condition isn’t fatal, it has many similarities with cancer. But even if patients aren’t dying, it can still lead to severe and disabling pain. And because it requires hormone treatment, women cannot become pregnant while they are being treated. If they want to be free of pain, they have to give up on having children.

Even so, current research is way behind the curve when it comes to finding out about what the condition really is. Funding for research into endometriosis has been very limited.

According to a recent Norwegian public report addressing women’s health, an assessment of why there is a major difference in the ways that men and women are affected by illness has been overlooked. However, in the very spirit of such a report, endometriosis should be getting more research funding.

Underfunded and underprioritised

As researchers in the field of medical biotechnology, we have ourselves experienced that research into women’s health has been underfunded for many years.

There are many factors as to why women’s health has been assigned lower priority in the field of medicine. For many years, women were in fact excluded from clinical studies. An outcome of this was that eight out of ten medications removed from the market  in the USA in the 1990s, were withdrawn because their side effects were shown to be more harmful to women than to men.

So, it is perhaps not so surprising that so little research has been carried out into endometriosis.

Constant suffering

Endometriosis is a chronic condition. It is characterised by the growth of tissue similar to the lining of the uterus in other sites in the body. Such sites include the abdominal cavity, in and around the ovaries and fallopian tubes, as well as on the exterior of the uterus, the intestines and bladder, and even in the vicinity of the lungs. This rampant growth can result in pain, infection and scar formation.

Many women suffer constant pain that significantly affects their health and quality of life, right up until the menopause.

Currently, it is only possible to give a certain diagnosis following surgery. Pain related to the condition is treated using hormones or by surgically removing the endometriosis tissue. One problem with hormone treatment is that there is a great deal of individual variation in the pain relief offered by the various medications available.

Learning from cancer research

What we need now are new tools to help us understand, diagnose and treat the condition. We should be focusing on learning from the results of cancer research, since cancer is also a condition that involves uncontrolled cell growth in the wrong places.

Many advances have been made in cancer treatment in recent years. This is partly because very detailed analyses have been made of cells all the way down to genetic level, and partly because effective methods have been developed that enable us to study the growth of cancer cells under controlled conditions in the laboratory.

We believe that this expertise should now be put to use in studies of endometriosis, and there are many reasons why. Firstly, to see if we can make our current treatment approaches more effective. Secondly, to develop new methods and technologies that can facilitate earlier diagnosis and thirdly, to develop medications that work better than our current hormone treatments.

Four challenges

We face four challenges when it comes to endometriosis research,  all requiring the involvement of multiple disciplines in the fields of medicine and biotechnology:

  • Patients should not have to have surgery in order to get a diagnosis. Disease markers in menstruation blood may offer a possible solution. 
  • More basic knowledge is needed about this condition. Our hope is that more knowledge will open the door to treatments that can be tailored to individual patients. At SINTEF, we are already working to apply individually tailored treatments in connection with intestinal cancer, according to the same principle. 
  • How do we cultivate endometriosis tissue in the laboratory in such a way that enables the course of the condition and its treatment to be studied in detail? 
  • We recommend an approach that considers endometriosis as a ‘local condition’. In other words, to develop a treatment that focuses preferentially on the rogue cells. This is the opposite to hormone treatment, which impacts on the entire body.

In order to achieve this, researchers must be given the opportunity to close our current knowledge gap.

We’re ready

When the Norwegian health minister received the recent public report on women’s health, she referred to the Women’s Health Programme currently being administered by the Research Council of Norway, which this year is awarding NOK 60 million in funding.

She remarked that issues that are popular among researchers commonly attract higher status and, in doing so, offered the research community a challenge. However, the Women’s Health Programme receives applications for thirty times more money than current funding budgets can accommodate.

This shows that Norwegian researchers are more than ready to do what they can once the resources are in place.

This feature article was first published in the newspaper Dagsavisen on 25 March 2023 and is reproduced here with the permission of the paper.