Better treatment at RDH for patients with Endometriosis, PCOS & associated conditions
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1 in 9 women suffer from Endometriosis. 1 in 10 women suffer from Poly Cystic Ovarian Syndrome. 1 in 10 women suffer from Adenomyosis. And yet there is not one single specialist, public or private, available for patients with these conditions in the Northern Territory. (These statistics include trans men and non binary people)
With these diseases come a multitude of debilitating symptoms, often leading to unavoidable flare ups of agonising pain leading sufferers to present at the Emergency Department at Royal Darwin Hospital. Some of the symptoms people with these diseases experience are chronic pelvic pain, pain during ovulation, pain during intercourse, pain during periods, infertility, back pain, nausea and vomiting, heavy bleeding, irregular bleeding, bleeding between periods, leg pain, shoulder tip pain, pain with bowel movements or urination, fatigue, bleeding from the bladder or bowel, constipation, diarrhoea, bloating, depression, anxiety, sharp stabbing pain in vagina and/or rectum, pelvic floor dysfunction, loss of menstrual cycle, excess hair, hair loss, acne and weight gain.
THERE IS NO CURE FOR ENDOMETRIOSIS, PCOS OR ADENOMYOSIS.
Unfortunately, for myself and other patients I have spoken to, the Royal Darwin Hospital (RDH) is not the place you want to go for adequate treatment of your disease. Personally, I have Endometriosis and possibly Adenomyosis and my experiences at RDH have been inadequate and traumatic.
The changes I would like to see are:
1. An advanced laparoscopy endometriosis/adenomyosis specialist - At this time, there are 2 consultant Obstetrics & Gynaecology doctors at RDH. It is no secret that these doctors are not endometriosis/adenomyosis specialists, and therefore they are unable to adequately treat these diseases nor provide the gold standard treatment for Endometriosis which is an advanced laparoscopic excision surgery. This means that patients experiencing these conditions must travel interstate to receive treatment for their disease (where they are also ineligible for PATS), or have a sub par surgery done by the current doctors available. The surgery offered in Darwin is ablation surgery. Ablation surgery vs excision surgery is akin to trimming the head off a weed in your garden rather than removing the root. Ablation surgery is a unsustainable treatment for the removal of endometriosis and often leads sufferers to more pain, more surgeries and more symptoms. It is crucial that a specialist be available at RDH and Darwin Private Hospital. Furthermore, non specialised gynaecologists are less likely to offer patients suitable treatment for their disease/s nor understand the nature of the disease and its symptoms. PATIENTS NEED AN EXCISION SPECILIAST AT ROYAL DARWIN HOSPITAL.
2. A gynaecology only ward - Currently, patients experiencing gynaecology related issues are being put into the maternity ward which is highly insensitive given that at least half of us are experiencing or will experience in our lifetime infertility, or have had to have hysterectomy's to treat our disease. If we are not admitted to the maternity ward then we are just placed in whatever ward has a free bed. A gynaecology specific ward would improve the wait times to get a bed from emergency, mean that nurses in that ward are able to provide the right type of care to gynae patients and lessen wait times to see a doctor due to them only having to come to one place to see patients.
3. Advocacy workers/Mental Health Support - I suggest an introduction to peer workers in a gynaecology setting. This would consist of a worker who has lived experience of a chronic gynaecological disease being a part of the O&G team and accompanying doctors to see patients, advocating for those patients, as well as providing holistic supports to de brief and escalate complaints. Currently, the unhelpful system at RDH is causing a lot of distress in patients from the way they are treatment, with limited understanding or support from the MHAT team. Providing someone to advocate for patients in RDH would lower the risk of depression and suicidal ideation from gynaecology patients.
4. Clear education for patients with the option to become a private patient if they are unhappy with the service provided by RDH. Unfortunately I tried to become a private patient and was given little information about how I could do that and the information I did receive was confusing and conflicting. An on call gynaecologist at Darwin Private Hospital would help to streamline this process, and RDH should be providing patients with a list of doctors they can choose from in the private system as well as their experience/specialties, and the process to which they need to take to move their care. There is currently very little choice or say from patients on who they are being treated by, but we should be given the right to choose and the right to change doctors if we are unhappy with who we are being treated by.
5. Consequences for doctors who spread misinformation about women's health to patients - "Pregnancy is a cure for endometriosis", "your pain is in your head" "the only way to diagnose adenomyosis is by hysterectomy", "endometriosis is the endometrium" - these are all false statements that have been made to me by gynaecologists at RDH. These statements can be detrimental to patient’s mental health and are creating a deep distrust for the medical professionals in charge of gynaecology in Darwin. I ask that a formal process to report these types of statements and bullying become available for patients, and that in the meantime current doctors at RDH undertake further education on these disease, their symptoms and treatments.
Please Minister Gunner & Minister Fyles, help us improve the quality of care for patients in the Territory by implementing these changes at Royal Darwin Hospital.
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