Endometriosis: the burden down below

On any given day, Honre Young can tell when she will have an endometriosis flare-up and that when it does, “all hell will break loose.”

“I don’t know what will trigger it… you know it’s kind of like when you feel your period is coming. You can’t explain to anyone why you know, but it’s still that same ‘oh f*** there you are’.”

Honre is a commerce and psychology student at Macquarie University and interns part-time at a social media agency. She has stage four endometriosis, colloquially known as “endo”, which mainly affects her bowels. Some days she will need to go to the bathroom up to eight times a day, on others she will experience general bowel discomfort, and there are days when she will be physically immobilised due to pain.

Endometriosis is classified as mild, moderate or severe, and comes in four stages. Mild endometriosis, stage one, appears as small lesions throughout the pelvic cavity whereas severe endometriosis, stage four, affects most of the pelvic organs, often with distortion of the anatomy.

“I am stage four so not every organ is affected but a significant amount was found that was impacting other organs,” she explained. “To be 20 and have stage four is pretty intense.” 

Honre goes through a packet of Buscopan a week to relieve abdominal pain and will opt for Voltaren then Tramadol if she needs something stronger. She takes an oral contraceptive pill and hasn’t had a period since March 2017.

“People are like ‘oh you’re so lucky’ but I think they forget it’s a double-edged sword. There is a high chance when I come off it [the pill], because I’ve suppressed my period for so long, I might not ovulate.”

Honre isn’t shy of trying any treatment that may relieve her endo pain.

“Acupuncture very much helped, again, not sure if [it was a ] placebo or she [the acupuncturist] was amazing.”

“If we were doing my bowels, a lot of them [the needles] were directly in my stomach and often I’d get one done on my ninth meridian. I’d usually get one in my head and also on my ankles and shins.”

“I went to therapy for pain management, that also helped me mentally I think.”

[Endo] impacts all facets of your life but you must take control of it and own it, instead of the disease owning you.

That [therapy] took me 9 months: it wasn’t a quick fix.”

Honre has discovered WiSE Specialist Emergency Clinic in Macquarie Park – a stand-alone, walk-in facility offering specialised emergency care without having to wait hours in a hospital emergency department.

“I’ve gone there a few times and they intravenously will give me drugs straight away… that’s just a quick hit if I’m in that much pain.” 

Aside from medication, she credits exercise and pelvic floor physiotherapy as the most successful types of pain relief.

“Exercise for me is the one thing where I’ve never, ever experienced pain. I don’t know how that works. That is really important to me and I know I am lucky because a lot of women complain that they can’t exercise.”

“Pelvic floor dysfunction is a result of endo and also my multiple surgeries… they [the physiotherapists] just help relax it [the pelvis] and teach you a lot of techniques like how to go to the toilet properly to relieve symptoms, how to sit on a chair and how to position your pelvis and your body for optimal comfort.”

Because her flare-ups may strike at any time, Honre is always prepared.

“I think the shocking thing with endometriosis is that one minute you are fine and the next you are passing out on the ground dying, literally, and then 10 minutes later you’re fine.

“To prove to people that the pain is real, it’s happening, it’s inside of you, is really hard.

“I already know where hospitals are if I go away, I already know what drugs are in all my bags, my best friends carry my drugs in their car, stuff like that – [it] is almost like an emergency plan.”

As her studies are drawing to an end, the thought of entering the workforce has Honre anxious.

“I am stoked to say that at the moment, I have managed almost full-time work hours and uni studies without having to drop any of that time yet. However, there have been many sick days and hours spent in work or uni bathrooms feeling like I am going to die and not knowing what to do or who to tell whilst also popping sneaky Buscopans and codeine on the side.

“Going into a new workplace – that is terrifying.”

“I think the reality is that I just have to be grateful for the days that I don’t have pain or experience small amounts. These are the days that I hold onto and think about when I feel like I can’t go on; that it will all be okay in the end.”

Dr Vijay Roach is a gynaecologist from North Shore Private Hospital and President of the Royal Australian and New Zealand College of Obstetricians and Gynaecologists.

He explains that a definitive diagnosis of endometriosis can only be done through laparoscopy surgery – also known as keyhole surgery.

“We look inside the pelvis and we can make a visual diagnosis of endometriosis or we take a biopsy and a biopsy will confirm the presence of that endometrial tissue outside the uterus,” he said.

Women affected by endometriosis can receive surgical treatment such as ablative therapy or excisional treatment to relieve pain.

“Ablative therapy or burning will be successful when the disease is fairly limited.

“To achieve definitive treatment, you should do excisional treatment which cuts out the endometriosis so that you remove it.”

Dr Roach said although there is a renewed interest in and awareness of endometriosis, doctors and patients should be careful not to race down the surgical route by having unnecessary procedures.

Women will turn up with pelvic pain to their doctor and the next minute they are having a laparoscopy.

“Hopefully that isn’t the way we approach it…that we take a history, do an examination, try and manage things with simple measures or we might organise a high-level ultrasound to look at the pelvis to see whether deposits of endometriosis are visible.”

“Why operate on someone if you don’t need too?”

Dr Mike Armour is a Research Fellow at Western Sydney University’s NICM Health Research Institute. He believes period education in Australia needs to be improved.

(Source: AIHW)

Symptoms such as severe period pain, painful sexual intercourse and extreme fatigue are common in women with endometriosis. 

“Severe period pain that doesn’t respond to treatment is a warning sign. This would be period pain that doesn’t respond to taking non-steroidal anti-inflammatories, something like Ibuprofen, mefenamic acid or it doesn’t respond to the use of an oral contraceptive pill,” said Dr Armour.

“Probably the biggest [sign] is dyspareunia which is painful sexual intercourse. Around 75 per cent of women in Australia with endometriosis report what we call deep dyspareunia. This is pain deep in the abdomen either during or in the 24 hours after sexual intercourse.”

On average, the delay between onset and diagnosis of endometriosis is between seven and 12 years.

Dr Armour said there are a number of factors that contribute to the delay in diagnosing endometriosis or the potential misdiagnosis, including a lack of discussion in medical school, a lack of a clear treatment pathway and a tendency for women’s pain to be “dismissed or downgraded”.

“One of the delays in diagnosis of endometriosis is that women are not necessarily presenting to their doctor because they think their symptoms are normal, or they are delaying that presentation for several years because they don’t know that the symptoms they have are not something they should put up with.

“There is an idea that period pain is normal because it is very common, and I think that idea is present even amongst GP’s.

Young women, especially those who are presenting to their doctor may be told ‘oh it’s just normal, you’ll grow out of it’.”

“I think what’s been happening is that there perhaps hasn’t been follow up; so young women or women presenting to the doctor with severe period pain and other symptoms, they’re being put on the pill or given painkillers, but when those are not working or they are not responding to those, that doesn’t seem to be followed through.

“So there’s not a treatment pathway which is being followed by doctors and I think that’s one of the major issues.”

In 2012, Syl Freedman, co-founder of non-for-profit advocacy organisation EndoActive, was 21 when she was diagnosed with endometriosis. She had never heard of it before.

Syl’s mother Lesley trolled the web for any information on the disease and how to treat it.

Lesley discovered a medication called Visanne, which shrinks endometrial tissue and can reduce pain, however it wasn’t available in Australia. Both women launched a Change.org petition lobbying Bayer to release Visanne onto the Australian market. Their campaign succeeded in 2014.

Realising how common endometriosis is and how serious the consequences of living with it are with no support, Syl and Lesley started a Facebook page and kept the conversation going by promoting evidence-based information and lobbying the Federal Government.

Earlier this year, it announced $10million in funding to boost the treatment and awareness of endometriosis. This is in addition to $4.7million provided for National Action Plan activities.

EndoActive received $160,000 to disseminate their ‘Shared Perspectives’ endometriosis videos to medical professionals and women affected by the condition.

“They are for health care professionals and also for patients and there’s just nothing else like them,” Ms Freedman said.

There is hardly any evidence-based video education on endometriosis; I don’t think it exists in Australia.

Although Ms Freedman is grateful for the government funding, she said it’s “shameful” how little attention and funding endometriosis has received in the past from both government and society.

“There’s no more allocated for endo at this stage which I’m obviously not happy about.”

“$14.7million in research for any disease hardly goes anywhere… it’s a lovely start, but it’s not enough.”

A recent study done by researchers from Western Sydney University and the University of NSW, revealed the high cost of the disease. Over 80 per cent of those costs are due to lost productivity as women are using their sick leave or are unable to work to their maximum potential. The study concluded that the total economic burden of endometriosis in Australia may be as high as $9.7 billion a year.

“Sadly, for many women they have to stop work. Without endo and without pain, they would be incredibly capable members of society and the workforce,” Ms Freedman said.

“Any profession you think of is going to have women who have endo because of the prevalence… so many of them are forced to leave the workforce and they don’t want to [and] unfortunately a lot of them are forced to be on disability support pension which means they are not financially independent.”

There are individual patient costs as well: last year, $506.4 million was spent by Australian women on direct healthcare costs after diagnosis. Direct healthcare costs are costs associated with an endometriosis diagnosis and includes hospital admissions and visits to emergency rooms, physicians or gynaecologists and other health specialists and surgeries.

“I think it’s expensive to treat because nobody really knows how to treat it properly. There is no gold standard. Everybody who has endo experiences it rather differently and it affects so many different parts of the body that it’s not just allocated to one type of specialist.

“If you have cancer you see an oncologist. With endo you’ve got gynaecologists, physiotherapists, gastroenterologists and then you might go into complimentary medicines, acupuncture, naturopaths, dieticians…it just never ends.”

Ms Freedman said although ‘endo’ has the same prevalence as other chronic illnesses such as asthma and diabetes, women with it have to fight harder to have medical professionals listen.

“If someone has a huge cut on their arm, everyone is very aware that that person is in a lot of pain and there is worry, concern and panic.

For chronic or invisible illnesses, when you can’t tell from the outside, it’s very hard for people to wrap their head around and often women with endo are not believed.” 

*If you are struggling with endometriosis or believe you may be displaying symptoms, visit Endometriosis Australia.

— Alessia Jeffery