Endometriosis- A Silent Illness
It is a silent disease that affects one in ten Australian women. You might even know a sufferer. Yet there is no cure. And for the sufferers, it is part of their life.
Endometriosis is a serious medical condition which sees over 176 million sufferers worldwide. Endometriosis Australia describes the disease as being ‘present when the tissue that is similar to the lining of the uterus occurs outside this layer’ causing pain and in a lot of cases, infertility.
Doctor Monique San Lorenzo, a Senior Resident at Blue Mountains District Hospital, explains the physiology of endometriosis to her patients in a way that is easy to understand.
“I explain to them that the layer of lining is called the endometrium which sheds each time a woman menstruates. If they reach a point where the layer is no longer stable, and the endometrial cells are released in the form of blood or other products, they have the potential to grow in other places outside the uterus, causing pain and internal bleeding”.
Unfortunately for doctors and patients, the symptoms of endometriosis can vary widely and are often associated with other problems women might have. Symptoms can include: fatigue; pain with or around the time of the period; pain with ovulation, sex or bowel movements; and heavy or irregular bleeding.
Angie had always suffered from bad cramping and bleeding but wasn’t officially diagnosed until the age of 33 when things became unbearable.
Erin was diagnosed at the age of 28 during a time when she was struggling to conceive, after having severe period pain a majority of her life. She says:
“Aside from conception issues, my main symptoms were pain when I pooped, anxiety/depression and tender breasts. My doctor wasn’t expecting it to be as severe as it is because most of my symptoms were on the mild side".
Doctor San Lorenzo explains that the process of diagnosing endometriosis can be long and difficult, often taking anywhere from a few months up to several years. She explains:
“We begin the consultation by gathering a history of their symptoms and how they have impacted their life. Can they still study or work during their period? Does it give them anxiety?”
Once the effects have been established, the medical team move onto an ultrasound which may or may not show endometriosis depending on the severity and location.
“If nothing is found or we need further investigation, we progress to laparoscopic surgery to see what is present in the abdominal cavity”.
After being misdiagnosed with Polycystic Ovaries (PCOS), Holly finally received her diagnosis two years ago. Her mother had a history of endometriosis, with research showing it can be genetic.Holly says:
“I had exploratory laparoscopic surgery in November and was officially diagnosed with stage 2 endometriosis".
Katie’s diagnosis journey spanned across 5 years, beginning when she was a young teenager. It started with pelvic pain at 14, then extended to abnormal hair growth and extremely painful periods. Katie says:
“The doctors believed for a good few years that it was PCOS but when I wasn’t getting better and a scan showed some unusual things, they gave me a laparoscopy and officially diagnosed it at 20, just over a year ago".
Like any test or procedure, the effects can be different for everyone. Lauren, who was diagnosed as a teenager, suffered greatly during the diagnostic process. Lauren explains:
“I got blood tests, ultrasounds and internal examinations. I remember screaming and crying in pain from the tests. When I was doing my HSC, my doctor sent me for a laparoscopy which determined that I had stage 4 endometriosis".
There are four stages in total. Stage one is considered minimal, stage two mild, stage three moderate and stage four severe. Both Lauren and Erin suffer from stage four; Holly, Katie and Angie have stage two. Although the stages may be categorised differently, all sufferers will experience some degree of pain and damage to their reproductive organs which affects their day-to-day life.
According to Doctor San Lorenzo, endometriosis effects many domains of a patient’s life and will affect each individual differently:
“It might affect their personal life at home, their relationships, their ability to work or study and has a huge impact on mental health”.
For Angie, the physical pain has been bad enough, but it has also caused her to dramatically gain weight and impact upon her mental health:
“I can’t exercise much as it either engages the muscles that trigger cramps or I have massive bleeds. It wasn’t great for my marriage and it greatly reduced my confidence with intimacy and has caused anxiety”.
For Erin, the impact on her life has been far more mental than physical. Endometriosis has been the main cause for Erin’s struggle with anxiety and depression. Erin explains:
“The doctor believed that both heredity and endo played a part in my issues. I’ve been medicated for several years and for the most part it has helped"
Holly has also seen the affects mentally and physically. She also suffers from diabetes which has made her battle with endometriosis even harder. It has affected her ability to work and socialise and often leaves her feeling defeated:
“My job as a nurse has been affected the most. I can’t increase my hours because my job says I’m not reliable enough to do so because of the sick leave endometriosis has forced me to take".
Like many sufferers, Lauren has been the victim of people assuming that it is all in her head or that she is overreacting. She has suffered from chronic anxiety including panic attacks and agoraphobia as a result of the illness and her treatment by others.
“I definitely feel a lot more triggered though when my hormones are imbalanced and, on those days, I just can’t get out of bed. I feel like I am letting my children and my fiancé down".
Katie has found that since she has received a diagnosis, she is actually in a much better place mentally because she no longer has the anxiety or worry that comes with not knowing what is wrong.
One of the hardest aspects of the disease that is the hardest to grip for many sufferers is how much it impacts fertility. While it doesn’t guarantee infertility, it is estimated that approximately 50% of women will have difficulties falling pregnant.
The reason why fertility is affected is largely due to the scarring left behind by the disease. Often the fallopian tubes become blocked and many women have irregular cycles. New evidence suggests that endometriosis affects the quality and quantity of eggs.
Angie may just be one of the lucky few who had no issues with falling pregnant. She conceived all three of her children naturally.
Similarly, Lauren had no issues conceiving her ‘miracle’ daughter, Harlow:
“Six months after my second surgery, I fell pregnant without even really trying. We would love another child, but my condition gets worse and after many months of trying, we’ve had no success".
Erin conceived two boys through invitro-fertilisation (IVF):
“We spent four years trying to conceive. After three surgeries I thought that our chances would be better, but they weren’t, so we went though the tough process of IVF. It was extremely tough on my husband as well as myself".
One of the major issues with endometriosis, and how it differs from many other diseases, is that treatment is limited and not guaranteed. There is no cure, so doctors can only do their best to manage the patient’s symptoms
There are a variety of treatments available, and often it is a matter of trial and error to determine which will work for the patient. For some patients, the combined oral contraceptive pill will be acceptable. The Pill contains a combination of oestrogen and progesterone and is designed to alleviate the pain of endometriosis by supressing menstruation. It can also inhibit the growth of endometrial implants.
The Pill had no impact whatsoever on the treatment of Lauren, Holly and Katie’s conditions. Katie says:
“I don’t believe that helped at all because the pain was still there and it really messed with my mental health as well as my weight".
It was a similar experience for Lauren:
“I tried many different pills over the years to see if they would help manage it. But they didn’t. All they did was affect my mental health and make me very sick".
Another option that many women try is the Mirena, another form of contraception. This method is a bit more invasive than the Pill, but it can reduce the symptoms. It often stops periods from happening altogether and because many sufferers have painful periods, it eliminates that element.
The Mirena is a plastic T-shaped intrauterine device, containing progesterone. It can last up to 5 years. As the method of using the Mirena to treat endometriosis is relatively new compared to other methods, there is little research on the effectiveness of it and whether it should be used as long-term treatment.
Lauren tried the Mirena but, like the pill, it made her sick and caused her body to ache all over.
Holly has had far more success with the Mirena, however. A majority of her pain was occurring during her menstruation cycle, so because she no longer has this, a vast majority of the pain has subsided.
Perhaps the most successful treatment of endometriosis is that of an ablation, usually performed through laparoscopic surgery. Doctor San Lorenzo explains:
“Once we’ve entered the abdomen, we use a heated instrument that kills the endometrial cells wherever they may be in in the abdomen. There’s still a chance that they will come back later down the track so many women need multiple surgeries over the years".
All five women have undergone an endometrial ablation. For Holly, Erin, Katie and Lauren, this was successful in removing the endometriosis temporarily. Lauren and Erin have had four; whilst Holly and Katie have had one.
Sadly Angie wasn't so lucky:
“The ablation did nothing to help me. I still have constant pain and I bled for nine months straight afterwards. Now my doctor is considering a hysterectomy".
A hysterectomy is a complete removal of the woman’s reproductive organs and is only used by doctors as a last resort when all other treatments have failed or if other organs have become affected by the disease.
Endometriosis can begin to affect the bowel and urinary systems if cells migrate to these areas. It is also possible for the uterus to fuse with the bowels if the cells have formed that way. Women with endometriosis can also be more susceptible to urinary tract infections.
It can take many years for a woman to find the treatment that is right for her and, in this time, the condition may worsen. The Australian government recognises this and has invested over $12 million dollars. $9 million of this is for research into non-invasive diagnostic testing which they hope will provide a better understanding of why the disease develops and progresses. A further $1 million is for the development of a digital health platform for endometriosis research and support. The rest of the funds have been allocated for other forms of research, social media awareness, education, and online resources for medical practitioners.
The government is also assisting sufferers through the Medicare system where they have heavily subsidised endometriosis-related treatment. The Pharmaceutical Benefits Scheme helps to pay for medicine and the National Health and Medical Research Council funds endometriosis research.
The Australian Government are so far demonstrating that they understand the condition needs more research and therefore more funding. It is a step in the right direction towards finding a cure for the disease.While many other diseases have support from the World Health Organisation, which also assists governments at a federal level, sadly they do not recognise endometriosis as a global disease.
Lauren is a huge advocate for the disease, regularly sharing on Facebook her experience and helping to spread the word about other sufferers. Lauren says:
“It needs to be seen and heard of, especially because it is an invisible disease. A lot of people don’t understand that it’s not just about periods and pain. It affects the whole body. It’s incurable and we have to live with it every day".
As someone who works in healthcare, Holly believes that many healthcare workers need to be better educated on the disease and hopes that government funding will see a shift in this over the coming years. Holly says:
“It is such a common illness so I think that GP’s need to be better educated so that they can provide women with the care they need without putting them on a waiting list to see a specialist".
Doctor San Lorenzo says that a lot of issues with treatment does not come down to education; it is merely a case of not having the ability to apply the education correctly:
“To be able to manage the disease well, it helps to have a lot of exposure to the issue to help you realise how different each woman’s experience may be".
Doctor San Lorenzo further adds that from her experience and what she has witnessed in the hospital environment, there are too many doctors who don’t realise just how challenging life can be for a sufferer:
“For doctors, aside from learning about the causes and physiology of the disease, I think it’s important that all GP’s learn the ability to manage it holistically while knowing how important the treatment is for the patient”.
Endometriosis isn’t something that just goes away, at least not until a woman has gone through menopause. There is no cure and a diagnosis can take months or even years and is often invasive. There is no guarantee that treatment will be successful. All sufferers can hold onto, is hope that one day there might be a cure; one day treatment may be more specialised and one day things may be a little easier for them. Until that day comes, millions of women around the world will continue their day in writhing pain.