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Nelli lives with chronic pain. It took her 20 years to find the right help
Nelli lives with chronic pain. It took her 20 years to find the right help

SBS Australia

time3 days ago

  • Health
  • SBS Australia

Nelli lives with chronic pain. It took her 20 years to find the right help

Nelli Stevenson has been living with chronic pain since she was a teenager — but it has taken her many years, and a serious medical emergency, to find the help she needed. Stevenson, 37, started experiencing chronic pelvic pain, along with a nerve pain called sciatica, when she was around 14 years old. These conditions later worsened after the birth of her child, and became chronic around three years ago. "I live with chronic persistent pain. I've had several medical professionals tell me I'll likely be in pain for the rest of my life," she told SBS News. "There is only so much they can do for me surgically. So, I manage my pain on a day-to-day basis through a number of physical interventions, as well as medical interventions as well." Stevenson works for a community legal service with flexible arrangements, and says she is fortunate to have access to a specialist GP and team who support her physical therapy and pain management. "However, it took me about 20 years of pushing through the medical system, constantly advocating for myself and fighting to be taken seriously, to be able to find that group of people," she said. This started in her late teens. "I was told, like most people with pelvic pain, that it's just part of being a woman, it's part of your period. I was gaslit for several years," she said. This had serious consequences. At one point, Stevenson says she had normalised the chronic abdominal pain she was experiencing that she didn't notice her appendix had ruptured. "I didn't present to hospital until 12 days after it had happened," she said. Stevenson ended up in ICU and needed two major surgeries to save her life. She says these caused significant scar tissue, which added to her chronic pain. She said she has heard many stories of late diagnosis, misdiagnosis and gaslighting from the chronic pain community. "They [medical professionals] aren't taking seriously these people who are saying, 'I cannot live like this anymore. I need more help.'" Chronic pain is taking longer to diagnose in 2025, according to a new report from peak consumer body Chronic Pain Australia . The 11th edition of its National Pain Survey, released on Monday to kick off a week-long awareness campaign, has revealed what it calls a "devastating national crisis" marked by diagnosis delays and a severe mental health toll. Waiting for a diagnosis Chronic pain is a common and complex condition characterised by persistent pain experienced on most days of the week, according to the Australian Institute of Health and Welfare. Approximately one in five Australians, or 3.6 million, live with chronic pain. However, Chronic Pain Australia believes the figure is higher. "That figure came from a study that was done about 15 years ago," Chronic Pain Australia chair Nicolette Ellis said. "What we're predicting chronic pain is sitting at in [terms of] prevalence is about four million Australians in this day and age, and [this is] projected to go up to five million in 2050." Of the almost 5,000 survey respondents, many had multiple conditions, including pain, joint pain and nerve pain, often experienced at the same time. Over half (54 per cent) of respondents reported waiting more than two years for a diagnosis, and 44 per cent waited over three years. This has increased from 42 per cent waiting over three years in 2024, and 41 per cent in 2023. Mental health impacts — and a 'pervasive' stigma Ellis said delayed diagnoses can contribute to the "vicious cycle" of chronic pain, including mental ill health. "For a lot of people, it takes away their identity, increases their mental health issues … and that's because of [what] pain can take away," she said. "If you're waiting for a diagnosis, typically you lose function. That might be reduced hours at work, or it might be leaving the workforce altogether." The report revealed 74 per cent of respondents had experienced mental health impacts, with 87 per cent experiencing sleep disturbances. Among other impacts was 63 and 59 per cent of respondents who experienced strain on family relationships and friendships. Stigma around chronic pain is "pervasive", according to the report, which found 74 per cent reported feeling ignored or dismissed. Ellis said this can come from health professionals along with friends, family, and community members. However, reported stigma from health professionals was higher than overall levels. "Many people feel gaslit or stigmatised by health professionals — that this is all in their head and it's not a true condition," she said. Calls for more complex care Despite the complex nature of chronic pain, the report found access to appropriate multidisciplinary and specialist care is falling short. Only 18 per cent of respondents received a referral to multidisciplinary pain management, and 30 per cent of those referred never secured an appointment. Ellis said access to multidisciplinary care is limited and dependent on location. "If you're in a metropolitan area, usually you can get into a tertiary or hospital-based pain clinic. But they have massive wait lists," she said. "Access to that kind of care is very limited." Chronic Pain Australia has been advocating for integrating multidisciplinary care programs into primary care settings. Ultimately, it wants to see chronic pain recognised as a condition in its own right — and made a national health priority. "Currently, we don't recognise pain as a condition in its own right; we recognise it as a symptom. What that means is that not only is chronic pain invisible to society, it's invisible in our health system data and in our policies," Ellis said. Ellis said recognising chronic pain in its own right would increase awareness of the condition, to guide adequate funding and resources. SBS News has contacted the federal health department for comment. It's understood the latest report will be presented to parliament later this week. For Stevenson, having access to early diagnosis and complex care can make an "extraordinary difference". "It means that someone who may otherwise be bedridden for weeks and weeks on end can actually participate in society, can maintain a healthy work-life balance, and can go about their days as a person living as pain free as possible, which surely we all deserve."

Organon Abandons Endometriosis Pain Drug Development After Trial Failure
Organon Abandons Endometriosis Pain Drug Development After Trial Failure

Medscape

time02-07-2025

  • Health
  • Medscape

Organon Abandons Endometriosis Pain Drug Development After Trial Failure

(Reuters) -Organon said on Wednesday it will the stop development of an experimental treatment it acquired through its purchase of Forendo Pharma, after the drug failed to reduce pelvic pain in women with endometriosis. The drug's failure in a proof-of-concept mid-stage study deals a blow to the company's attempt to launch a future driver of revenue, four years after it was spun off from Merck. Another drug acquired by Organon through the up to $954 million Forendo acquisition is still in lab studies. Organon was testing the drug, OG-6219, in 354 patients aged 18 to 49 who had moderate-to-severe endometriosis-related pain, but results showed no significant improvement compared to a placebo. Improvement in pelvic pain was measured using an 11-point rating scale during the third month of treatment. Endometriosis is a condition that affects about 190 million women of reproductive age globally, according to the World Health Organization. It occurs when tissue similar to the uterine lining grows outside the uterus, often causing chronic pelvic pain and infertility. Organon's study was designed to assess whether the drug could meaningfully reduce pelvic pain and patients were randomly chosen to receive one of three pre-decided doses of the drug or a placebo, given orally twice a day. Current treatments options for endometriosis include hormonal therapies such as birth control pills, progestins, and GnRH modulators such as Myfembree, co-owned by Sumitovant Biopharma and Pfizer, and AbbVie's Orilissa. Pain is often managed with non-steroidal and anti-inflammatory medicines such as ibuprofen and surgery remains an option for severe cases. OG-6219 is designed to block an enzyme involved in estrogen production, aiming to reduce pain by lowering levels of estradiol at endometriosis sites without affecting hormone levels throughout the body. (Reporting by Kamal Choudhury in Bengaluru; Editing by Tasim Zahid and Shailesh Kuber)

Groundbreaking Research For Endometriosis Explained
Groundbreaking Research For Endometriosis Explained

ABC News

time25-06-2025

  • Health
  • ABC News

Groundbreaking Research For Endometriosis Explained

Around one in ten women have endometriosis. And even though it can be one of the most debilitating and painful conditions - there's still no cure. But now a huge study has found a really interesting link between endo and childhood. We'll unpack it in this episode with Associate Professor Dr Theresa Larkin. Plus she'll explain what the symptoms of endo are, the process to diagnosis, treatment and pain management. SHOW NOTES: Endometriosis research Theresa's research on pelvic pain Theresa's article about hysterectomy DM us your thoughts, questions, topics, or to just vent at @triplejthehookup on IG or email us: thehookup@ The Hook Up is an ABC podcast, produced by triple j. It is recorded on the lands of the Wurundjeri people of the Kulin nation. We pay our respects to elders past and present. We acknowledge Aboriginal and Torres Strait Islander peoples as the First Australians and Traditional Custodians of the land where we live, work, and learn.

Can You Use Pelvic Floor Therapy for Endometriosis?
Can You Use Pelvic Floor Therapy for Endometriosis?

Health Line

time10-06-2025

  • Health
  • Health Line

Can You Use Pelvic Floor Therapy for Endometriosis?

Many people with endometriosis have symptoms like pelvic pain, painful penetration, and bowel or bladder discomfort. In some cases, pelvic floor therapy can improve these symptoms. Pelvic floor therapy is a specialized form of physical therapy that focuses on the muscles, ligaments, and connective tissues in the pelvic region. It can help relieve symptoms associated with endometriosis. While some exercises can be done at home, it's recommended to consult a trained pelvic floor specialist — typically, a physiotherapist specializing in pelvic health. How does pelvic floor therapy work? Pelvic floor therapy involves a combination of techniques aimed at improving the function of the pelvic floor muscles. It's not just a matter of doing Kegel exercises. These may include: Manual therapy: Hands-on techniques (e.g., massage) to release muscle tension and improve tissue mobility. Stretching and strengthening exercises: Targeted movements to enhance muscle flexibility and strength. Education: Guidance on posture, breathing, and daily habits that may impact pelvic floor health. Depending on your individual needs, your physiotherapist may use: Biofeedback: Sensors provide real-time feedback on muscle activity, which can help you learn to control these muscles more effectively. Transcutaneous electrical nerve stimulation (TENS): This involves sending small electrical currents to certain body parts. Your physiotherapist will likely also suggest pelvic floor exercises for you to do at home. These interventions aim to address muscle imbalances and reduce pain associated with endometriosis. What are the potential benefits? Research indicates that pelvic floor therapy can offer several benefits for people with endometriosis. These benefits include: Pain reduction: A study found that 63% of people with endometriosis experienced an improvement in pain after six sessions of pelvic floor therapy. Improved sexual function: By addressing muscle tension and discomfort, therapy can alleviate pain during penetration. Enhanced bowel and bladder control: Strengthening pelvic muscles can help manage symptoms like constipation or urinary urgency. A study looked at the effects of physical therapy in teenagers and young adults with endometriosis and chronic pelvic pain. It found that a course of pelvic physiotherapy significantly improved their daily functioning. What are the potential side effects or risks? Pelvic floor therapy is generally considered safe. However, potential considerations include: Initial discomfort: Some people may experience temporary soreness after sessions. Emotional response: Addressing pelvic health can sometimes evoke emotional reactions, especially if past trauma is involved. Cost and accessibility: Not all insurance plans cover pelvic floor therapy, and finding a specialized therapist may be challenging in some areas. It's essential to discuss any concerns with a healthcare professional before starting therapy. Who is pelvic floor therapy for, and how can you get started? Pelvic floor therapy may be beneficial for people with endometriosis who experience: Chronic pelvic pain Painful penetration Bowel or bladder dysfunction Muscle tightness or spasms in the pelvic region To get started, find a qualified therapist. Look for physiotherapists with experience in treating endometriosis-related pelvic floor issues. Some pelvic floor physiotherapists require a referral from another healthcare professional. Consider asking your usual GP or gynecologist, if you have one, for a referral. The first session usually consists of an initial assessment. The doctor will ask about your symptoms and medical history and evaluate your condition. From there, the doctor can develop a personalized treatment plan.

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