Endometriosis pain: Shannon Vanstone is on the road from hell and needs $25,000 to get off

Shannon Vanstone has been on the road from hell since she was 15 due to a disease called endometriosis. Photo / Supplied

For 29 years, Shannon Vanstone has been travelling on the road from hell.

Like any road, it's had ups and downs but it was this year that Vanstone almost met her breaking point. She simply wanted the pain to stop. Pain that she has experienced almost every day.

The culprit? Endometriosis. An inflammatory disease where the uterus lining – the endometrium – ends up outside the uterus on fallopian tubes, the bowel and bladder.

One in 10 New Zealand women have it and, in some cases, it causes intolerable pain that measures higher than childbirth.

Vanstone is one of those women and, for more than a year, her pain has not subsided for one day.

"I was in so much pain I just wanted to die so I could have a break and it would stop for a while," she told NZME through tears.

But there is no cure. Vanstone has had multiple surgeries, procedures and drugs, including a hysterectomy, to try to remove the abnormal cells growing in her pelvic region and alleviate the pain.

Now Vanstone hopes to find $25,000 to fund private surgery that she believes will be her one-way ticket out of hell.

It was in high school when the Kawerau woman first thought she was losing her mind.

Her periods were heavy and painful, yet people told her it was "normal", "get over it" and "it can't be that bad".

"But I was in so much pain I couldn't understand that everybody went through this every month."

It would go on for two weeks, sometimes three and Vanstone's most common state was curled up in a ball, she said.

Eventually, it led to a diagnosis after a laparoscopy when Vanstone was 16.

"But that was just the start of the road from hell."

Vanstone had two children by the time she was 23 in fear she would be infertile due to the disease, but the pain got worse after her last baby.

"I was having pethidine injections at the hospital, passed out on the floor in so much pain and in a pool of vomit.

"I don't know how to explain it other than you are living in hell and there is no end in sight."

After a hysterectomy, which Vanstone fought "tooth and nail" because of her age, she had good years, she said.

But over the course of eight years, the pain has come back, to be the worst it has ever been.

"There should be a solution, no one should have to live with this pain."

Vanstone recently went to see a private specialist, who gave her an action plan: remove her ovaries, nerve blockers in her stomach, separate the adhesions, remove any endometriosis, botox in the pelvic floor, operate on her pudendal nerve and if necessary undergo bowel resections.

But with no private insurance due to the disease, the cost is $25,000. A cost she cannot afford.

But with little help from the public health system, she has no other option - and she's not alone.

Endometriosis NZ chief executive Deborah Bush said the disease affects around 130,000 women in New Zealand. Photo / Supplied

Endometriosis NZ chief executive Deborah Bush says the disease affects about 130,000 women in New Zealand and, through the "patriarchal" health system, calls for relief from the symptoms often fell on deaf ears for decades.

"We've got an eight-year diagnostic delay, on average, when somebody first presents with symptoms. That means that within that time people are often not listened to or dismissed.

"The disease isn't silent, rather women have been silenced over the years. How can a disease that has such far-reaching painful and life-altering impact be silent?"

Vanstone's story wasn't unfamiliar to Bush. She said she knew grandparents who had mortgaged their houses for private surgeries and mothers who had seen letters from their daughters who had lost the will to live in pain.

Bush said New Zealand did not have enough medically and surgically trained gynaecologists to offer the "gold standard treatment". The only way to get it was through private insurance, she believed.

"Where do you get help if you are not in private care? Women have learnt to put up with those things and isolate."

Bush recently helped the Ministry of Health create a "best-practice guidance" for the treatment of endometriosis in New Zealand. She said it was unforgivable that there was no clinical pathway for a disease that affected so many women.

The Minister for Women, Julie Anne Genter. Photo / File

The guidance, which promotes early recognition of any symptoms which would suggest endometriosis and supports primary healthcare practitioners to make a diagnosis and begin management, was announced in March by Women's Minister and Associate Health Minister Julie Anne Genter.

"Endometriosis and pelvic pain are serious issues for many women and girls and our health system needs to do better," Genter said.

"Unfortunately, a delayed diagnosis can dramatically affect people's wellbeing with often-debilitating pelvic pain, bowel problems and fertility problems."

Genter said it was important health professionals knew about the guidance and how to recognise symptoms.

"We want to ensure women and girls don't suffer in silence and they get the treatment they need as early as possible."

It won't change anything for Vanstone but she says, "The more we can get the word out, and the more educated specialists we have the better it will be for all women".

- Shannon has a Givealittle page to help fund the treatment she needs.