Latest news with #endometriosis
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The Independent
21 hours ago
- Business
- The Independent
‘I'm in pain with endometrosis almost daily but have to justify how bad it is to get care I need'
Zainab Kaleemullah lives with debilitating pain almost daily, and despite a 14-year battle to finally get a diagnosis, she says she still has to justify her pain to get the treatment she needs. The 36-year-old has severe endometriosis and adenomyosis - painful conditions where tissue grows outside of the uterus or into the muscular wall of it - and spent more than a decade making repeated trips to doctors to get to the bottom of the cause. She says she was misdiagnosed with conditions such as irritable bowel syndrome and depression, and even after being diagnosed, she faced a further two-year wait for surgery to remove the harmful tissue. She told The Independent: 'I get pain almost every day now… Sometimes I've felt that my condition isn't taken seriously, or they [medics] think that I perhaps over exaggerated with my pain, or they think it's probably something else.' 'This condition was causing me such debilitating pain, and I almost feel like I have to justify it every single time I talk about it.' Ms Kaleemullah is one of the 25 million people in England struggling with a long-term health condition, such as endometriosis, cystic fibrosis, epilepsy and diabetes. Research shared exclusively with The Independent estimates that around 7.5 million of those are not getting the support they need from NHS services - a 10 per cent in the past five years, according to a study by charity National Voices and think tank Future Health. Patients with long-term conditions account for 70 per cent of GP appointments and 50 per cent of hospital appointments and treatment. Despite this, 11.5 million do not have an NHS plan to help them manage their illness, such as timely access to specialists or correct pain management. The report authors have called for the NHS to be measured on this performance and held to account on patients' experience, alongside its existing targets for A&E and hospital care. Richard Sloggett, programme director for Future Health and a report author, called for the government to prioritise the experiences of patients with long-term conditions. He said: 'This report highlights the challenges millions of patients with long-term conditions are facing in accessing high-quality NHS services and support. There is a danger in yet another NHS restructure that the experience of patients is marginalised. This would be completely counter-productive.' Sharon Brennan, director of policy and advocacy group External Affairs at National Voices, said: 'We know people with long-term conditions feel increasingly alone in managing their health needs, often acting as the single co-ordinator of their care while also trying to maintain a life that is more than just their health conditions 'The NHS must move from a bean-counting culture of data collection and seek to understand the experiences of real people using the NHS.' 'It's like my insides are set alight' Even after surgery, Ms Kaleemullah said she continues to struggle to get the support she needs from the NHS. She said GPs and other specialists fail to see endometriosis as a 'full body illness', presuming instead that it is only associated with periods. 'I can have very debilitating pelvic pain, and it feels almost like my insides have been set alight…I get pain almost every day now. I can't walk long distances because I get really bad, lower back pain, abdominal pain, pelvic pain, get really bad migraines, fatigue… so it's very frustrating when I present myself to the doctor that they don't take into full account that I'm dealing with this at every single day.' Endometriosis, which impacts more than 1.5 million women in the UK, is a condition in which body tissues that line the inside of the uterus can grow outside of the womb, often affecting other organs such as the ovaries and bladder. 'I have to prove I need medication' Mary Saunders from Southport lives with hypothyroidism, a condition where the thyroid gland produces too little thyroid hormone. Patients with the condition need lifelong medication. It took her 16 years to get a correct diagnosis; however, much like Ms Kaleemullah, she has she struggled to manage her condition and access the medication she needed. It took seven years of taking the standard medication, levothyroxine, with persistent new and worsening symptoms occurring, to discover, through her own research, that there was an alternative called liothyronine, which was more expensive for the NHS. This month, the pharmaceutical company Advanz lost a high court appeal against a £99 million fine by the Competition and Markets Authority in 2021, after it increased the cost of liothyronine from £20 a box to £248. NHS doctors eventually agreed she could trial liothyronine but said she would have to buy it privately, so she spent years trying to source the medication more cheaply in Europe. However, when Covid hit and this became impossible, Ms Saunders again sought to get an NHS prescription. To do this, doctors said she would have to 'prove' she needed the medication by coming off of it for six weeks. 'It's like saying to patients. You're gonna be ill for six weeks now, because you're not gonna have what you need, the life-giving medication that supports your body.' Although she is now under an endocrinologist she trusts, Ms Saunders says: 'If my doctor leaves the service, I could be thrown right back where I was, I couldn't count on the NHS, because I have had 16 years of this, I don't count on the NHS.' A Department of Health and Social Care spokesperson said: 'The government inherited a broken NHS, and it is unacceptable that too many people living with long term conditions have not been getting the care they need. 'The 10 Year Health Plan will set out a bold agenda to deliver on the three big shifts needed to move healthcare from hospital to the community, analogue to digital, sickness to prevention, while putting patients at the centre of their own care.'
CBC
3 days ago
- Health
- CBC
This UBC-developed website educates youth on when period pain is too much
Social Sharing Researchers at the University of B.C. have created a new website and social media campaign they hope will empower young people to take the experience of period pain more seriously. The website Period Pain is Real Pain, which was created with the input of youth partners, includes resources about period pain, related conditions like endometriosis, and pain relief. It also features a free quiz that helps youth determine whether they should speak to a health-care provider about their pain. Period pain common: researcher UBC PhD student and campaign developer Zeba Khan, who studies period pain care in Canada, said period pain is a very common experience, one that affects more than 60 per cent of females of reproductive age. "Despite being so common, there is this narrative that period pain is normal and 'it's just part of being a woman,'" Khan said. "And that narrative is harmful because it makes it difficult to talk about period pain and get the right support." Khan said period pain can be most intense during adolescence. "We want young people to know that their pain is valid. So we hope that this tool, the website, the campaign will help young people recognize what the options are for them." She added that young people should speak with their health-care providers if their pain is so severe that it stops them from participating in day-to-day activities like going to school or playing sports. Dr. Paul Yong, associate professor of obstetrics and gynecology at UBC, said untreated recurring period pain in adolescence could be a risk factor for chronic pain in the future. "We really think that prevention is really key, in terms of chronic pain, so that's why we have such interest in the adolescence time … not only to help the lives right now of adolescents, but also to prevent that pain from worsening in the future." Accessible information supports patients Endometriosis, a condition in which tissue similar to the inner lining of the uterus grows outside the uterus, is one of the most common underlying causes of period pain, according to Yong. It affects about one in 10 females of reproductive age. Vancouver-based endometriosis advocate Lux Perry, CEO and founder of Somedays, a natural period-pain relief company, said a resource website like Period Pain is Real Pain can help people decipher their experiences in a tangible way. "I was unable to go to school; I was unable to participate in sports. It completely disrupted my ability to go about my normal life," Perry said. Cally Wesson, president and CEO of B.C. Women's Health Foundation, which provided funding for the research project, praised the website. She said women's pain experiences can often be dismissed by health-care professionals.
Daily Mail
4 days ago
- General
- Daily Mail
Sophie Kasaei shares positive fertility update and says 'we've finally got some answers' amid struggle to conceive a baby with boyfriend Jordan Brook
Sophie Kasaei shared a positive fertility update on Instagram on Monday after opening up about her struggle to conceive a baby with her boyfriend Jordan Brook. The Geordie Shore star, 35, who suffers from endometriosis and has spoken publicly about her fertility journey, was joined by her partner Jordan, 29, as the pair shared an update with their followers, revealing they have finally got some answers. In a lengthy new video update, Sophie said: 'So me and Jordan have been waiting to do this video because we were waiting to see where we're going to be at in our fertility journey, and waiting for some news to come through. She continued: 'So, now we're at a position where we can actually tell you exactly what's been going on. We feel like it's the best time to speak now about it. 'Not long ago, a couple of months ago, we got the first bit of news. Which was I had something called Ureaplasma.' From A-list scandals and red carpet mishaps to exclusive pictures and viral moments, subscribe to the Daily Mail's new Showbiz newsletter to stay in the loop. According to Medical News Today, Ureaplasma is a type of bacteria commonly found in the urinary or genital tract. It does not usually cause symptoms, but in some cases, it may contribute to infections, fertility problems, or pregnancy complications. Revealing she had no idea about the condition, Sophie continued: 'But Ureaplasma is like an embedded bacteria that can cause infertility, and I knew nothing about this, and in the UK they never tested for this. 'And this testing that we've been getting is more like immunology testing, and they test for like everything. 'And Ureaplasma would have caused a lot of infertility anyway. Now I was a little bit worried, I was like how do I get rid of that, and that was literally a course of antibiotics of two weeks. Jordan chimed in, saying: 'No sex for two weeks and antibiotics for two weeks.' Sophie explained further: 'Then we got further testing once we got rid of the Ureaplasma and were like "Right, let's go down the road of getting our bloods done." 'Prior to all this, Jordan's had sperm done and I've had everything else done and we're both fine.' Jordan added: 'So, we was at a stage where egg count was good, sperm count was good, Ureaplasma's now gone. What is Ureaplasma? Ureaplasma is a type of bacteria commonly found in the urinary or genital tract. It does not usually cause symptoms, but in some cases, it may contribute to infections, fertility problems, or pregnancy complications. Source: Medical News Today 'So that's where we're at but there was still, obviously, it wasn't happening, so unanswered questions and we needed more detail.' Sophie explained: 'So then Jordan got his bloods done. I got my bloods done in the UK from Superdrug and it costs like 80 quid each to get these done privately.' Jordan added: 'But, if you go back to our previous video, there was a box we got from Fertilysis, we got another box which was to send our bloods off now for both of us. All labelled up, so my vials had Jordan, Sophie's vials had Sophie, 'With all instructions of what you needed to do in the box, we boxed that up and then it was off the next day.' Sophie continued: 'We got our results about seven to 10 days and it was just a phone call. I was away at the time, but me and Jordan had a good phone call, and Jordan knows a lot more about this because he was taking a lot of notes. 'So the bloods came back and we finally got more answers, and it makes sense.' Revealing the issue, Jordan said: 'Sophie has a very very overactive immune system. Which is great to stop her getting ill, but, what that means is Sophie's immune system is effectively killing my sperm. 'It's too strong, so it's killing my sperm before it can make an embryo. Because it's a foreign body, Sophie's body sees my sperm as a foreign body. He continued: 'So, we've been offered lit therapy.' Explaining what lit therapy is, Sophie added: 'Basically they take Jordan's blood cells and put it into a vaccine and inject into me, so it makes my body accept Jordan's cells.' Jordan explained further: 'So they make a vaccine out of my blood and my white blood cells at the clinic, and then that gets administered to Soph effectively, hopefully stopping Soph's immune system killing the sperm. 'Because it sees it as something of its own. There's another two or three things which we will later talk about with the doctor.' Sophie concluded: 'That is the update' as Jordan chimed in with: 'Things are looking up, things are looking positive for the first time in a long time. He added: 'This is the first time that we've both felt positive for a long time.' Alongside the new video update, Sophie captioned the post: '✨ FERTILITY UPDATE PART 1✨ 'It's been a long road and looking for answers comes with so many stresses and worries. We can now say finally after over 2 years we have got some answers on our fertility journey! 'I was recommended Fertilysis from a few girls who have had amazing success stories so I thought let's give it a try! 'We found out firstly that I had a bacteria called Ureaplasma that causes infertility - why no one ever tested me for this in Uk I do not no. 'But a course of antibiotics and it was gone. We then had our bloods sent off to see what's going on in our immunology and we got even more answers! Alongside the new video update, Sophie captioned the post: 'It's been a long road and looking for answers comes with so many stresses and worries. We can now say finally after over 2 years we have got some answers on our fertility journey!' 'We found out we are a partial DQ alpha match which also affects implantation. But there is even more hope as this can be treated too! 'I just wish we knew about @fertilysis sooner. I know now we are in the best hands and the outcome is going to be amazing. Finally feeling hopeful and can finally see some light after a challenging few years. She concluded the post 'Next it's off to Athens to get the next batch of treatments (prayer hands emoji) @fertilysis thank you x' According to Fertilysis's website, they specialize in the investigation and treatment of unexplained infertility and recurrent miscarriages, providing answers where standard practices fail. Last year, Sophie candidly spoke about her fertility struggles. The reality TV star admitted her fertility journey 'hasn't been the easiest' as she thought 'she would be able to fall pregnant straight away'. Speaking to Heat magazine at the time, she said: 'We've been trying for a few months now. I thought I'd get pregnant straight away, but it's a lot harder than people think.' Sophie, who started dating the TOWIE star in November 2022, added: 'It's not the easiest - there are definitely hard months but we'll get there one day. At the moment, though, Jordan is loving the trying. 'He's having a field day because I'm fulfilling all of his needs and wants!' Sophie has been incredibly open in the past about her battle with endometriosis which has led to her going through certain fertility tests. The star was diagnosed back in 2020 when she opened up with her followers about her 'excruciating' battle with the condition. Endometriosis is a condition resulting from endometrial tissue outside the uterus which causes pelvic pain and is often related to menstruation. She compared her horrendous ordeal to someone 'stabbing you in your ovaries' when she shared her experience with her followers. 'I want to say to anyone who suffers from endometriosis like it is so painful! I literally was just fine and I've started to cry again. 'I've just done a PT session and I had to leave because the pain that I just felt driving home, honestly I can't describe that pain. 'It's the most excruciating pain, it's like someone's got a knife and is just stabbing you in your ovaries.' What is endometriosis? Endometriosis is a condition where tissue similar to the lining of the uterus grows in other places, including the ovaries and fallopian tubes. The long-term condition affects women of any age, including teenagers. Common symptoms include: Pelvic pain Period pain Pain during or after sex Pain peeing or pooing Feeling sick Difficulty getting pregnant Treatments include:
News.com.au
4 days ago
- Health
- News.com.au
Bindi Irwin seen in public for first time since undergoing harrowing emergency surgery
Bindi Irwin is on the road to recovery after a difficult few weeks. Spotted on her first public outing since she underwent emergency surgery in New York earlier this month, the 26-year-old was seen back on her feet and looking in good spirits on Monday as she arrived at Los Angeles International Airport from the Big Apple. With her mum Terri Irwin by her side, Bindi acknowledged photographers who appeared to wish her a speedy recovery as she made her way to a waiting car outside the terminal. Despite her recent hospitalisation, the Aussie conservationist was strong enough to tote her own carry-on bag while dressed in a relaxed maxidress for the cross-country journey. On Monday, Bindi also took to Instagram to tell her followers that she was on the mend following emergency surgery at Lenox Hill Hospital in New York after suffering from a ruptured appendix. During the operation, doctors also found 14 new endometriosis lesions that had to be removed, and they also repaired a large hernia Bindi had acquired when she gave birth to her daughter Grace four years ago. 'Healing. Thank you for your incredible words of support and kindness,' she wrote on Instagram yesterday alongside some photos of her on the mend. 'The reason I share my health journey is because more girls and women desperately need answers to their undiagnosed pain. I've battled with endometriosis for more than 12 years. 'This disease is crippling and can make you feel incredibly isolated,' she added of her condition in which the cells that line the uterus also grow in other parts of the body, which can cause painful scar tissue. 'We need to raise awareness and change the narrative for women's health. I see you, your pain is real, and you deserve answers and genuine health care.' Bindi had travelled to the US earlier this month with her mum and brother, Robert Irwin, to attend an annual gala for their late father Steve Irwin in Las Vegas. However, she didn't make the event after she was rushed to hospital on May 12. 'Hey guys, Bindi here. I just wanted to thank you so much for your incredible well wishes. I just got out of surgery about an hour ago,' she groggily said in an Instagram video shared at the time. 'I had my appendix removed. I also had 14 new endometriosis lesions that had to be removed and they kindly stitched up my hernia as well.' 'I'm sorry if I'm a little out of it in this video. But I just wanted you to know that I'm on the road to recovery one step at a time and I am so lucky to have so much love in my life from my beautiful family.' Robert, 21, held down the fort for Bindi at the gala in Las Vegas, but told reporters at the event that her hospitalisation had come as a shock to the family.
Fox News
4 days ago
- Health
- Fox News
Bindi Irwin fights to be healthy for her family following emergency surgery
Bindi Irwin is on the road to recovery and taking the time to heal after suffering a ruptured appendix earlier this month. Irwin, the daughter of late animal advocate Steve Irwin, was forced to miss an annual gala in honor of her father due to emergency surgery. While the surgery was initially intended to address her appendix, doctors discovered a myriad of issues Irwin, 26, needed medical attention for, including 14 additional lesions related to her endometriosis diagnosis. "Healing. Thank you for your incredible words of support and kindness," Bindi shared on social media. "The reason I share my health journey is because more girls and women desperately need answers to their undiagnosed pain. "I've battled with endometriosis for more than 12 years. This disease is crippling and can make you feel incredibly isolated. We need to raise awareness and change the narrative for women's health. I see you, your pain is real, and you deserve answers and genuine health care." Her husband, Chandler Powell, praised Bindi on social media, and wrote, "I've said it many times already, but as time goes on I'm even more convinced that you are the strongest person I know." He added, "Going through everything you have to get on top of your health as well as help others along the way is incredible. You are a warrior in every sense of the word. Grace and I are so grateful for you and everything you do." She responded, "My hope is to be healthy for our family. I love you so much." Irwin detailed some of her medical journey on social media shortly after she was hospitalized. "After having a grumbly appendix, I finally had to seek help the day of our Steve Irwin Gala in Las Vegas," she wrote earlier this month. "I consulted with Dr. Seckin, and we agreed that if I flew to New York, he could also check for endometriosis again. "Surgery was a success. My appendix was removed, along with another 14 lesions (after having 37 endometriosis lesions and a cyst removed two years ago). I also had a repair to a large hernia I acquired through childbirth four years ago. Thankfully, I am on the road to recovery." This is not the first health scare Bindi has encountered. In 2023, the mom of one revealed an endometriosis diagnosis that also required surgery. "My life now looks completely different than it did before I had my surgery," Irwin told Fox News Digital at the time. "Over the 10 years that I was really battling with endo[metriosis] without knowing it, I would get progressively worse every week and in the end, before my surgery, I was barely able to get out of bed." Irwin, who described the pain she experienced as a "stabbing feeling" and "really scary," revealed in March that she endured the painful condition for 10 years and struggled for a proper diagnosis.
