Missed and Dismissed: How Endometriosis Patients are Losing in Healthcare.
It’s been a pervasive issue for too long. Patients presenting with a large variety of symptoms related to pain and/or cyclical problems, struggle to receive a diagnosis or effective treatment. Further to that, women presenting with abdominal pain – one of the key features of endometriosis for many – are often dismissed in emergency or sent home without a diagnosis or even guidance towards a cause.
The long wait
When it comes to endometriosis as a disease, in the UK it takes an average of 7.5 years to diagnose. A recent study from the USA showed a 8.6 year wait, and in Australia the count is 7 years. This is the time lost between a patient first asking their doctor for help with disruptive symptoms to eventually achieving a diagnosis and true explanation of their pain and chronic symptoms.
Sadly, for many, it has taken even longer.
It's a very strange conundrum...
The reality is, 1 in 10 women in the world have endometriosis. That’s diagnostic rates similar to diabetes, making it a prolific and common, chronic illness. Yet, pinpointing the illness seems to still be shrouded in mystery, with countless women struggling to manage chronic pain, heavy periods, infertility and crippling fatigue while visiting countless doctors who seem to diagnose everything BUT endometriosis.
Many describe receiving the eventual diagnosis as a sheer relief - finally stripping from them the internal monologue of ‘is this just in my head’?
So……. Why is modern medicine failing these women so drastically?
This is the critical question, especially as the disease is so much more common than many of its misdiagnoses counterparts.
To examine the issue in detail, we first need to establish some keyfacts.
1. It should go without saying, but for those still in doubt - endometriosis is very, very real. Further to that, just because many of its symptoms are ‘common’, it does not mean it is ‘nothing to worry about’.
2. Endometriosis is disease not only of menstruation and the pelvis. It’s caused by tissue that is similar to the endometrium - the lining of the uterus that is shed with a period - growing outside of the uterus. This tissue living outside the uterus is responsive to normal hormonal fluctuations and so it sheds and bleeds during a period, causing adhesions and lesions inside the body.
While often concentrated in the pelvic area, it is not exclusively a pelvic disease. It has been found in the nose, the brain, the lungs and in wounds on the skin - just to name a few locations.
The long-term impacts on the immune system and its role in inflammation and pain related to these lesions is now a major topic of research. Hopefully, deeper insight into the disease will be forthcoming.
3. There is no cure for endometriosis - and this includes ovulation suppression. In some - and we stress SOME - patients, commonly-used oral contraceptives can reduce the impact of the disease. This is a very common ‘first-line-of-defense’ treatment, and is not without side effects.
4. Pregnancy does not cure endometriosis. This dangerous and pervasive myth is commonly touted, yet many women who are still able to conceive with the condition struggle throughout conception, pregnancy, labour and postnatally with the condition. Some women report an improvement of symptoms during and after pregnancy, but many also report the same or worse experiences of the condition.
The real problem is that the research isn’t comprehensive and where it is, it’s often ignored clinically.
Doctors are people, too...
...and where they don’t have answers, they can try to fill the blanks.
The topic of ‘women’s health’ seems to provide many first-line healthcare providers (GPs, sexual health nurses etc) with vague concepts of treatment, often backed-up by mythology rather than medical science. Too often, in a clinical setting, women are offered comments like ‘I’ve heard once you have a baby that goes away’, or ‘have you tried meditation/apple cider vinegar/yoga etc?’.
It’s essential women experiencing these symptoms can trust the advice given has a medical backing, and they should be able to ask ‘why does that work’ and receive a science-backed answer. Of course a healthy lifestyle has better health outcomes, but it doesn’t not equate to a cure or scientific treatment for present and existing endometriosis.
So once you find a doctor who gets it… it gets better, right?
Maybe... but it's still not an easy path to treatment.
To make matters even more difficult for patients, if and when endometriosis is suspected in a patient, the treatment options are pretty limited and the diagnostic process expensive for either the individual or public healthcare systems.
The only currently-accepted medical diagnostic tool is laparoscopic surgery to remove and test suspect tissue. Because the lesions can appear body-wide, patients require highly skilled surgeons who are able to properly investigate for the condition. Even when no endometriosis is found during a laparoscopic examination, the condition cannot be fully ‘ruled-out’ by the doctor, as it may be lurking somewhere the surgeon has not examined or excised.
Not everything is created equal
And not every doctor can help with this condition. It’s important to know when to move on
Some doctors are just not adequately educated to support women with this condition and yet, some may still try by prescribing the pill, IUD or implant. The hope being the symptoms will be alleviated or supressed. However this only applies to the doctors who suspect some sort of cyclical involvement. Others might suspect a pain-related issue, a psychological illness, IBS - the list of misdiagnose is essentially endless -and prescribe accordingly.
When this fails to work - and without a definitive or correct diagnosis, it will often fail to work - these doctors tend to wring their hands. Many patients feel from that point on they are dismissed, ignored or thought of as hypochondriacal. Many struggle to even get an initial referral to a gynaecological specialist. Often, from then on, they are told their pain and suffering is ‘normal’ or ‘normal for them’.
Women with these symptoms need to know they are not alone. It’s important to know when a healthcare provider has reached the limits of their knowledge and it may be time to move on.
So… if 1 in 10 women are going through this, how do we fix it?
Bottom line - when something this prolific is so poorly managed, as a community we cannot accept the status quo. Patients with endometriosis suffer horrifically at times, often struggling to maintain day-to-day life tasks. Their education suffers, their careers suffer, their sex lives suffer and as a result of being regularly dismissed by the healthcare providers they turn to for answers, their mental health eventually suffers, too.
We need to listen to these women as they come into medical care. This is the first step. But we also need to find better quality diagnostic tools that help patients jump the hurdle of the dismissive, under-educated or even well-intentioned GP, who cannot pinpoint the problem.
Our research is designed to help
We have dedicated our research and development to this topic. We believe that by combining the knowledge gathered from what good quality research does exist, and providing new research based on population statistics of the right digital and biomarkers, we can assist patients to better outline their endometriosis risk profile and, with the help of good doctors, get on the right path - sooner.
But it’s a work in progress and we need your help.
If this is a cause that you care about, especially if you have been diagnosed with the condition, we are calling on you to donate your story.
Please fill in and share our survey with your friends and family.
Our brilliant partner, Dr Morton’s is offering a very generous, refunded consultation to all those who successfully complete the questionnair.
*Please see disclaimer on our survey page for full details of the offer.
Don’t miss out! Donate your story and make a real difference for women. It’s time this problem went away.
Disclaimer: Marilyn is a research and development project of Goltsov Ltd. We are not medical practitioners and are not able to provide any medical advice or diagnosis. If you are experiencing any symptoms, you should contact an appropriate health care provider as soon as possible.
Because the diagnostic process of endometriosis has been so traumatic for some, if this article or topic has made you feel concerned or upset about your mental wellbeing, you should contact your nearest mental health service for further support.