Marsha Risely has lived with debilitating pain for decades as a result of both endometriosis and adenomyosis. While these reproductive diseases are scarily common, the awareness and understanding of them is anything but. She shares her experience of being dismissed and gaslit by doctors despite her agonising symptoms.
Marsha’s symptoms started in childhood, having significantly affected her education and quality of life. Despite her long history with debilitating symptoms, it would be years before the 46-year-old would get that much-needed diagnosis.
“I had heavy painful periods from the age of thirteen,” Marsha says. “Missed a lot of school and my mother decided to visit our GP at the time and she proceeded to put me on the contraception pill.”
But it was merely a Band-Aid, with Marsha continuing to experience pain throughout her life.
“After my second child, I put up with severe clotting and heavy periods,” she says. “The past three and a half years it has really intensified: extreme waves of nausea, terrible fatigue, anaemic (with iron infusions), back pain, constant type labour pain, enlarged abdomen, painful sex, fullness and heaviness, urinary urgency.”
These symptoms are a common sign of endometriosis, which affects nearly 10% of women and girls who are of menstrual age.
The disease involves the abnormal growth of cells similar to those found in the uterus’ lining in other areas of the pelvis like the bowel, bladder and ovaries, but it can also spread all throughout the body and has been found in almost every single organ. Though the cause of the condition hasn’t been pinned down yet, there are a number of contributing factors associated with endometriosis, including having a family history of the disease.
Debilitating period pain, heavy and irregular bleeding, iron deficiency and pain with intercourse are all common signs of endometriosis – but they’re also associated with the lesser-known disease of adenomyosis. Affecting 1 in 5 women, adenomyosis is dangerously lacking in awareness, despite its seriousness and prevalence. It’s a condition involving the growth of cells similar to those found in the uterine lining are found in the muscle wall of the uterus. But what sets it apart from endometriosis? The difference between the two diseases comes down to the place these cells are growing – in endometriosis, the tissue grows outside the uterus, but with adenomyosis the tissue grows within the muscle wall of the uterus itself.
Despite Marsha’s symptoms being hallmarks of endometriosis and adenomyosis, medical professionals had refused to investigate further. Marsha reveals her experience trying to diagnosed was “honestly awful”, from the poor guidance to the inappropriate prescriptions – not to mention the dismissal of her pain.
“GPs kept giving me Band-Aid advice! Medication to stop the heavy bleeding and different contraception but didn’t investigate the issue until three years when I had enough of the pain,” Marsha shares. “Eventually a GP listened and sent me to my first Gynaecologist. He suggested more types of medication & pelvic floor Botox but nothing worked.”
Marsha was the first to suggest her symptoms could be a result of endometriosis, but she says she was immediately shut down by this gynaecologist who refused to take her seriously.
“He mentioned I had a bulky uterus but I had nothing to worry about. I mentioned to him ‘do you think I have Endometriosis?’ (had never heard of Adenomyosis back then), he said no,” she says. “I proceeded to break down in tears desperate for answers I couldn’t continue with this pain anymore.”
What did her gynaecologist do next? He recommended Marsha see a psychologist instead of providing follow up tests, indicating little concern or understanding for the debilitating symptoms she had presented with, not to mention the “bulky uterus” that he didn’t think warranted further investigation. Despite having figured out one of her own diagnoses on her own, she was all but laughed out of the room by the gynocologist. Marsha decided to find a new specialist, and set out to get to the bottom of her symptoms – and that’s exactly what she did.
“I was in a very dark place after this appointment and returned to my GP, asking for another referral to a new gynaecologist,” she says. “She agreed that I did have a bulky uterus and mentioned Adenomyosis for the first time and I probably had endometriosis too and recommended a laparoscopic surgery where I was diagnosed with endometriosis and most likely Adenomyosis on the 18/6/2021.”
That’s less than two years ago that Marsha received her diagnosis – after well over 3 decades of suffering and medical gaslighting. But it didn’t end there, the 46-year-old went on to undergo another surgery for her adenomyosis.
“My pain didn’t really ease and my health declined,” Marsha says. “This gynaecologist wasn’t really interested in me after my first surgery so I went to another gynaecologist on the 17/3/23, I had a total hysterectomy for adenomyosis (leaving my ovaries) and more endometriosis removed.”
The mum-of-two shares how dangerous the lack of awareness of adenomyosis can be, despite how common and debilitating it is.
“I think endometriosis is spoken about a lot more than adenomyosis but they say approximately 70% of people who have endo & adenomyosis too,” she says. “I was in emergency from adeno/endo pain and the on call doctor had never heard of the disease. It’s crazy that medical practitioners have no idea!”
It’s not just the lack of awareness that’s so dangerous, but the medical gaslighting that Marsha and many other women face on a regular basis. Research shows that it can take anywhere between 4 and 11 years, and often far longer as was the case for Marsha, for people to receive their diagnosis. We’ve also got up to 6 in 10 cases left undiagnosed – that’s a lot of people suffering without a treatment plan or adequate pain medication.
“Some doctors would refuse pain relief and say have a Panadol and blame my symptoms on something else/mental illness or that I don’t tolerate pain well,” Marsha says. “My gynaecologist at a public hospital asked me ‘what do you like me to do about it?’ I walked out in tears, I had waited for this appointment for over a year.
“We are disregarded sometimes, made to feel we are wasting their time, minimising our symptoms or boxing us in the mental health area.”
As for previous misdiagnoses? Marsha has a whole list. Take a look at the number of incorrect diseases and conditions she was told she had before she finally got her decades-late diagnoses for endometriosis and adenomyosis.
“I was told I had a mental health issue and IBS, chronic fatigue syndrome, I was told by a pain specialist I was too sensitive to pain and needed to take epilepsy medication to help with my pain receptors.
“Doctors or GPs are very reluctant to say I’m unsure what’s wrong and send you to a specialist who prefer medication as a solution.”
Marsha says many doctors “still believe it’s just a bad period” and decide not to investigate further when a patient is dealing with period-related symptoms. The 46-year-old says our best way to move forward is to improve awareness, education and understanding around the disease and break down the taboo standing in the way of the much-needed support so many are lacking.
“I would really love more education for GPs on the awful condition because that’s our first point of contact. Education at high schools around periods & what’s normal and to seek help,” she says. “Adenomyosis isn’t just a bad period!"
Marsha reveals how severely the disease affected her, having gone from “training in the gym 5 days a week to struggling to do simple tasks” and being “bedridden the majority of the time.”
“I think endometriosis/adenomyosis should be recognised as a disability to be able to access a health care card/Centrelink benefits and timely medical treatments,” she says. “People can’t work and have crippling debt without Any government support!
“It’s a debilitating disease.”
Head on over to Endometriosis Australia for more information on the condition and how to support its research and treatment.