'We lost Nicola, no one else should have to go through this'
Nicola’s family want to see the law changed so no other family has to go through what they have.
The loved ones of a Scottish mother who took her own life after an operation to treat endometriosis was cancelled said women in agony feel ‘dismissed’.
Nicola Thyne, 35, died in 2024 after years of suffering with debilitating chronic pain caused by the condition.
Endometriosis is when cells similar to the lining of the womb grow in other parts of the body, causing severely painful, heavy periods and fertility issues. It affects around one in 10 women and it can take several years to be given a diagnosis.
Currently there is no cure for endometriosis, but patients can sometimes be offered surgery to remove deposits of endometriosis - while this can relieve painful symptoms for a time, it often comes back after the surgery.
Ms Thyne, a former nurse and police officer from Bathgate, had waited 15 months for a scheduled surgery. However, it was cancelled and she was told she would need to wait another 18 months to get the procedure.
In Ms Thyne’s case, her endometriosis had led to her bowel and her bladder being fused together.
Since Ms Thyne died, her family and friends have set up Nicola's, a support group for women in West Lothian in her name. The support covers a range of different women’s health issues, and hundreds of women have accessed the group since it was set up.
Those behind Nicola’s now want to see what they are calling “Nicola’s Law” introduced in Scotland. This would make women’s health education and training mandatory for all NHS healthcare professionals, and it is hoped this would help more women have their pain acknowledged, taken seriously and then subsequently treated.
They say this would need to focus on all aspects of women’s health including menstrual, reproductive and hormonal conditions, as well as a better understanding of the psychological impact of long-term chronic pain.
June Smillie, a family friend who is leading the campaign, said: “A lot of women feel dismissed, which is why we came up with Nicola’s Law to look at education for GPs and other NHS health professionals.
“We really want education to be there for women’s health. I believe trainee doctors get it, but there is nothing that is ongoing and mandatory.”
Ms Thyne added: “This was down to her chronic pain and her operation being cancelled.
“I cannot believe how horrible endometriosis is. It is so debilitating because it can affect every organ in your body, and women are suffering in silence with this chronic illness.
“It takes so many years to get diagnosed and it is unbelievably sad that so many people are going through the same thing as Nicola and they are having their operations moved and they are being dismissed.”
Ms Smillie said Ms Thyne, who used to be an army medic, had tried to access NHS help on several occasions, but was often told her excruciating pain was normal and to be expected.
She told The Scotsman: “We need to be heard - Nicola went to A&E several times and was sent away and told the pain was to be expected.
“You can get viagra or help if you’re going bald, but women are viewed as hysterical.
“Things need to be improved so no one else goes through what we do because we lost Nicola and she cannot be replaced.
“It has devastated the whole family, because you never think it will happen to you.”
Nicola’s family has now submitted a petition to the Scottish Parliament to get Nicola’s Law formally introduced in Scotland and “end medical misogyny”. So far, over 1,100 people have signed it.
This is on top of the nearly 26,500 people who have signed a Change.org petition calling for the same thing.
The petition says: “Too many women are still experiencing delayed diagnosis, dismissal and avoidable suffering because women’s health has not been prioritised enough across education, training and care systems.
“Many women feel unheard by healthcare professionals, reproductive health symptoms are often normalised or dismissed, [and] stronger education and training in women’s health is still needed.”
Ms Smillie said: “You never think this will happen. It is heartbreaking, but we are channelling ourselves into dealing with something positive and trying to make a difference while also keeping Nicola’s memory alive.
“I couldn’t let it sit - we needed to do something that gives women a voice.
“There is not enough funding for the education we want right now, and we also need more up-to-date research that everyone is up to speed with.”
While Ms Thyne suffered from endometriosis, the campaigners are keen to make sure any progress in women’s health and any change in the law is not limited to just one condition.
They say menstrual conditions, hormonal conditions, the menopause and things like heart health need to be covered in women’s health education as well.
Public Health Minister Maree Todd said: “I extend my deepest and heartfelt sympathies to the family and friends of Nicola Thyne.
“I understand that delays in accessing diagnosis and treatment causes women great anxiety. This is unacceptable.
“We are taking clear action including delivering phase two of our women’s health plan - which includes our ambitions to eliminate cervical cancer by 2040, reduce waiting times for gynaecology and to improve care across Scotland.
“The Scottish Government will respond to the petition in due course.”
Comments
Want to join the conversation? Please or to comment on this article.