‘For me contraception isn’t an option’, says Joanna Earle, who has endometriosis and is currently on a fertility journey with her husband.
Endometriosis is where tissue, similar to the lining of the womb, grows in other places, including the ovaries and fallopian tubes.
For many of the 1.5 million women in the UK who suffer with the chronic incurable condition, and the many more who go undiagnosed, contraception is the only pain management offered after surgery.
But, for those trying to have children, there is no alternative to managing the debilitating pain that women like Joanna describe suffering through every month.
But now, there could be light at the end of the tunnel as a ground-breaking clinical trial involving 100 women in Edinburgh and London is set to test a non-hormonal pain relief treatment.
The drug in question, dichloroacetate, was shown to reduce lactate production (produced in an abnormal amount by women with endometriosis) to normal levels, possibly preventing the growth of endometrial tissue and decreasing the size of lesions.
If it works, it will be the first new treatment for endometriosis in 40 years.
According to Endometriosis UK, the symptoms of the condition include chronic pelvic pain, painful periods, painful bladder and bowel movements, and infertility which can have a major, life-long impact both physically and mentally.
These symptoms have driven women to opiate dependency and self-harm.
The trial, conducted by the University of Edinburgh, will begin recruiting this autumn, with half the women set to receive the drug and half the women given a placebo, which they will take for 12 weeks.
The participants will then complete a series of questionnaires and give blood samples over two-and-a-half years to determine if it’s an effective treatment.
The drug is already licensed as a medicine to treat rare childhood metabolic disorders and various cancers.
In an initial study with 30 women, the main side effects were a slightly upset stomach upon starting the medication, and a tingling sensation in the fingers.
Joanna, 39, is hoping the trial will be a success.
The PR lead from Kent, told Metro.co.uk how she’s always suffered with painful, heavy periods, but only discovered she had endometriosis in April 2021, after a visit to an osteopath who specialised in women’s health.
Joanna said: ‘Growing up, literally from when I first started having my periods, I really suffered and they were really heavy.
‘Some girls have bad periods and I assumed it was normal so I didn’t think anything of it and spent every month in excruciating pain.
‘I was talking to the osteopath about my general health and because of everything I was listing, by the time I finished, he said “I think you have endometriosis”.
‘At that time my partner and I were trying for a baby so I went to the doctors and he sent me to a gynaecologist.’
The treatment for endometriosis is to have the tissue surgically removed via a laparoscopy – but this is not a cure, and there is a chance it will grow back.
Joanna had her surgery in September 2021 and by April 2022 she felt much better – only now, she says her pain has ‘come back with a vengeance’.
She said: ‘I just said to my husband “I don’t think I can go through this again, I don’t know how strong I am to do that”.
‘The pain is so horrid and I feel sorry for anyone who has it. I just feel helpless, it’s horrible every month you go through that same cycle.’
Because Joanna and her husband are trying for a baby she cannot take contraception as a form of pain relief.
She says: ‘If we could have something to ease that pain, if it could be reduced, that would be amazing.’
‘If the trial works, then amazing. That’s what we all want. We just want to be given something to relieve the horrible debilitating pain we all get.
‘It’s affected me for so long and it’s a constant battle. If it works I’ll be on the list.’
Intimate health expert and GP Dr Shirin Lakhani say its promising to read about a trial for non-hormonal pain treatment for endometriosis.
‘Treatment for women with endometriosis is long overdue and I am so pleased to hear the trial is going ahead,’ says Dr Lakhani.
‘It means that women who do not want to take hormonal treatments, such as contraception, for the pain, will have access to treatments too.
‘The current treatment options don’t always work well for women, some of whom cannot tolerate additional hormones or who are trying to get pregnant, for example.
‘The aim of hormone treatment is to limit or stop the production of oestrogen, which allows endometriosis tissue to grow and shed.
‘But while evidence suggests they are effective at treating endometriosis, they do have side effects.
‘Women with endometriosis desperately need more treatment options. Progress in treating the condition is long overdue and while the trial will be run over two-and-a-half years, this is a very promising step forward to those suffering with endometriosis.’
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