The article discusses endometriosis, a condition affecting one in ten women of reproductive age, causing painful periods and other symptoms. It focuses on Louise Spice's 13-year journey to diagnosis and eventual hysterectomy. The article highlights the delayed diagnosis frequently experienced by women with endometriosis.
The National Institute for Health and Care Excellence (NICE) recently recommended Ryeqo, a three-in-one pill (relugolix-estradiol-norethisterone), as a long-term treatment for severe endometriosis. This pill blocks hormones contributing to the condition and provides hormone replacement therapy. It's a late-stage option for those who haven't responded to other treatments. While offering home administration convenience, potential side effects include bloating, breast tenderness, migraines, and weight gain.
The article emphasizes the significant delay in endometriosis diagnosis, often taking nine years from symptom onset. Many women report having their concerns dismissed by doctors. Early diagnosis and treatment are crucial to prevent irreversible damage and infertility. The article also notes that adenomyosis often coexists with endometriosis, and the symptoms can be similar.
Louise Spice's experience illustrates the challenges. Initially diagnosed with endometriosis, a hysterectomy revealed adenomyosis instead. While she hopes the hysterectomy resolves her pain, her case underscores the need for timely and accurate diagnosis.
Endometriosis UK is campaigning for a shorter diagnosis timeframe (one year or less within five years) and improved GP and hospital doctor training to better recognize symptoms. Experts stress the importance of early intervention to prevent severe disease progression and preserve fertility.
From the time her periods began at the age of 11, Louise Spice knew that ‘time of the month’ spelled agonisingly painful and heavy periods, accompanied by fainting fits and mood swings, which left her bedbound for days.
Yet despite endless visits to her GP, it would take 13 years for the source of her problem to be diagnosed. Then 24, she was told she had endometriosis, a condition where the tissue that normally lines the uterus (endometrial tissue) grows elsewhere in the body.
Now 29, she has recently had an elective hysterectomy – to remove her womb – which she hopes will finally end her misery.
‘I know having a hysterectomy might seem extreme but I am so glad to finally have a solution that will hopefully ease my pain,’ says Louise, a nail technician from Merseyside.
Around one in ten women of reproductive age suffers from endometriosis – but in good news for women who, like Louise, suffer from extreme symptoms, the National Institute for Health and Care Excellence (NICE) recently recommended the first long-term daily pill to treat the condition.
Relugolix-estradiol-norethisterone (brand name Ryeqo) is a three-in-one pill that works by blocking specific hormones that contribute to endometriosis, as well as providing hormone replacement therapy for patients who’ve been put into early menopause to tackle their condition.
Developed for women who’ve already tried and failed with other options, the new pill is a ‘late-stage treatment option,’ explains Dr Jan Toledano, a menopause specialist at the London Hormone Clinic.
Endometriosis typically affects the ovaries, fallopian tubes and inside the pelvic area, where the tissue, called endometrium, behaves just like tissue in the womb; during the menstrual cycle, the rise in oestrogen causes the tissue to thicken and spread.
Louise Spice, 29, recently had an elective hysterectomy – to remove her womb – which she hopes will finally end her misery
Menopause specialist Dr Jan Toledano says: 'We repeatedly see women being told their pain is something to put up with'
As with the womb lining, these patches of endometrial tissue break down and bleed during a period, but cannot leave the body. The build-up of abnormal tissue can lead to inflammation, cysts and scar tissue.
Bands of fibrous tissue called adhesions may also form, causing pelvic tissues and organs to stick to each other.
As well as leading to debilitating pain and extreme tiredness, endometriosis is one of the most common causes of female infertility.
There is no cure: current treatment involves pain relief or hormonal treatments such as the contraceptive pill or Mirena coil, which help to thin the endometrial lining, suppressing growth and reducing pain.
When medication doesn’t work, a laparoscopy, where a small camera is inserted into the pelvis and the endometrium is scaped off – or laser surgery, where it is burned off – may be offered.
‘The patient can feel better for a while but these are short-term solutions unless the underlying hormone causes are corrected and the tissue can grow back,’ says Dr Toledano.
In severe cases and if all options have failed to help, doctors may suggest a woman is put into early menopause – either ‘chemically’, using drugs called gonadotropin-releasing hormone (GnRH) antagonists to stop the ovaries from working in an injection, or surgically via a hysterectomy.
Putting a woman into an early menopause stops the production of key hormones such as oestrogen. These women then must also take hormone replacement therapy (HRT) to relieve menopausal symptoms including hot flushes, night sweats and vaginal dryness. HRT also offers protection against osteoporosis and heart disease by replacing some of the lost hormones.
The surgically induced menopause is permanent and means that women can no longer have children.
However, the chemically induced menopause with injections may be reversible.
This is where the new pill comes in. As well as HRT – containing estradiol, a form of oestrogen, and norethisterone, a synthetic form of progesterone – the new Ryeqo tablet contains relugolix. A GnRH antagonist, this is the same drug that is given as an injection, but the advantage of the three-in-one pill is that patients can administer their treatment at home rather than needing regular injections in hospital.
The nature of it being a pill also means that hormone levels return to normal faster than when stopping an injection or removing an implant. This makes it easier to come off if the woman experiences side-effects (these may include dizziness, weight gain bloating and mood swings) or plans to have a baby.
With an injection or implant, it can take four to 12 weeks for the body to adjust.
However, Dr Toledano says the new pill can still have side-effects such as bloating, breast tenderness, migraines, brain fog and weight gain.
The advantage of the three-in-one pill is that patients can administer their treatment at home
And it is not suitable for all. She says: ‘If this treatment helps, that’s great. But it’s certainly not suitable for everyone with endometriosis.
‘It would be far better to give younger women with signs of the condition preventative treatments such as high doses of progesterone alone, to prevent their disease getting to this stage where it is so severe that we need to target it in different ways.’
The main problem is late diagnosis in many cases of endometriosis. Diagnosis typically takes nine years from the time symptoms first appear. Years of endometriosis cause scarring and damage to the reproductive organs and bowel, causing pain but also possible irreversible infertility. Treating it early helps to prevent this.
A survey last year for the charity Endometriosis UK found that 78 per cent of women interviewed who later went on to be diagnosed had been told by at least one doctor that they were ‘making a fuss about nothing,’ says the charity’s chief executive Emma Cox.
Symptoms of endometriosis – which include pelvic pain, periods that interfere with daily life, heavy menstrual bleeding, pain during sex, painful bowel movements or when urinating and difficulties getting pregnant – are ‘all too often dismissed as “normal”,’ she says.
Louise pushed her GP to ensure she was referred for a scan. This revealed she had what doctors said was endometriosis
‘Many GPs and A&E doctors don’t recognise the symptoms, resulting in missed opportunities to stop suffering and the disease progressing as well as wasting NHS resources.’
The charity is campaigning for the Government to introduce a target for reducing diagnosis time for endometriosis to a year or less, within five years, a move that would also involve additional training for GPs and hospital doctors so that they can recognised symptoms.
Dr Toledano adds: ‘We repeatedly see women being told their pain is something to put up with. But by treating it sooner we can remove any need for surgery, prevent disease progression, avoid years of pain and preserve fertility.’
Indeed Louise, whose periods were ‘painful from day one’, was repeatedly told by her GP that it was just ‘heavy periods’.
Initially she was prescribed the Pill but it didn’t help. ‘My entire teenage memories are of pain, lying in bed and clutching a hot water bottle’, she recalls. She missed a lot of school as a result.
The pain abated when she was pregnant with her two children, now aged ten and eight.
‘Having no periods, I had no pain, it was like a miracle,’ she says. ‘For the first time in my life I wasn’t in agony every month.’
But the pain and heavy bleeding returned a year or two after each child was born. Then working as a carer, she’d often faint at work with the pain.
Finally, in 2020, she’d ‘had enough’ and pushed her GP to ensure she was referred for a scan. This revealed she had what doctors said was endometriosis.
‘I was relieved but so angry that it had taken so many years to get a simple scan and a diagnosis,’ she says.
Nothing worked and so doctors recommended she try a chemically induced menopause before resorting to a hysterectomy. As she was so young, the hysterectomy really was a last resort.
While waiting for her operation, she had the menopause-inducing injections, which didn’t help.
Finally, three weeks ago, Louise had her hysterectomy where afterwards her surgeon sat her down with shocking news.
‘He told me I do not have endometriosis at all – but adenomyosis where the uterine lining grows into the uterus wall muscle but not elsewhere in body.’
Dr Toledano says: ‘Adenomyosis is the same as endometriosis and they often coexist – in endometriosis, the womb lining cells grow outside the womb, and in adenomyosis they grow in the muscle wall of the womb.
‘The pain may be the same and usually if there is adenomyosis there is some endometriosis too.’
Louise says: ‘At my operation, they found no other trace of endometriosis. I am now waiting eight weeks for another scan but for now, they hope, they have got everything.
‘I have my children so I no longer need my womb. But I pray this helps end this.’
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