Erin was in debilitating chronic pain. It took years for doctors to allow surgery

Erin was in extreme pain for 15 years due to endometriosis, PCOS and adenomyosis. It took years to convince doctors for her to have a hysterectomy.

Erin Barnett had a hysterectomy on 27 June after experiencing extreme pain for years. Source: Supplied / Erin Barnett

Key Points

• Erin Barnett wanted her reproductive organs removed at 23 due to extreme pain, endometriosis and cyst ruptures.
• It took five years for specialists to agree to give her a hysterectomy due to her young age.
• A hysterectomy is a surgery to remove the uterus, and women who have had hysterectomies cannot get pregnant.

Erin Barnett has lived with extreme pain since she was 14 years old.

She has had 17 surgeries, including the removal of her left ovary and fallopian tube, countless cysts, and spent roughly $35,000 on treatments and appointments.

She describes her pain as “unimaginable”.

“It’s indescribable until you go through it, it’s like your insides are burning, and you don’t know where the pain is from, and you just want it to stop,” she said.

“It is horrendous.”

Barnett has endometriosis, a condition where tissue similar to the uterus lining grows in other parts of the body and the hormonal condition polycystic ovarian syndrome.

She tried contraceptive medication and devices, pain medication, an anti-inflammatory diet, yoga, and even medically-induced menopause, but nothing worked.

The reality television personality and Endo Unfiltered author said she first asked for a hysterectomy - a surgery to remove the uterus - when she was 23, but doctors told her she was "too young".

Women who have had a hysterectomy cannot become pregnant or have a baby.

Last week Barnett was able to have the surgery, which she says was due to years of advocating for her body.

After undergoing surgery, she found out she also had adenomyosis, a condition that causes endometriosis to grow in the walls of the uterus, which had also been a source of pain.

To get the surgery, Barnett said she had to get a GP referral, opinions from multiple specialists, and a psychiatrist sign-off before she could get the hysterectomy, a process she describes as "frustrating".

“I just think I could have saved so much money and lived a better life throughout my 20s,” she said.

“All I have known is surgeries, and pain, having no social life and being isolated.

“They told me I was too young to make that decision, but I would have lived such a better life and had so much better quality of life back then.”

What is a hysterectomy?

A hysterectomy is the surgical removal of the uterus, an organ that plays a major role in the female reproductive system.

The surgery can be performed as a treatment for medical conditions including endometriosis, adenomyosis, fibroids or tumours in the uterus, a prolapsed uterus, pelvic inflammatory disease and some types of cancer.

Associate Professor Anusch Yazdani, medical director at Endometriosis Australia, said there are no laws or age limits for hysterectomies, apart from situations where the patient is under 18 or unable to consent.

He said doctors are often concerned about younger patients opting for a hysterectomy and regretting it in years to come.

"If someone really young wants a hysterectomy, we always would get a number of people involved because you want to manage that regret ... you can't put your uterus back if you change your mind," he said.

Yazdani said doctors are also concerned about the efficacy of hysterectomies as a medical treatment and potential medical complications.

He said procedures like endometrial ablation or the Mirena contraceptive device are often more suitable options depending on the patient's situation.

Yazdani said going down the path of hysterectomy should be a decision the doctor and patient make together.

"I think it is completely unacceptable for a woman, regardless of her age, to continue to suffer pain and menstrual dysfunction and have her life ruined by that," he said.

"If the endpoint is we've explored all the options, and it has to be a hysterectomy, that is appropriate."

'My hysterectomy saved my life'

Caitlin Sloan has struggled with extreme chronic pain since she first got her period at 13 years old.

Sloan regularly missed school and work due to severe pain, bled for weeks at a time, and at one point, she was taking 240 painkillers every month.

"I couldn't even function," she said.

"I was on antidepressants ... I didn't have any quality of life."

After trying "everything under the sun", Sloan decided she wanted a hysterectomy, but it took years for doctors to agree.

She said specialists were hesitant to perform the surgery because she was only 24 at the time and had not had children.

As a young woman, she felt her ability to have children was prioritised over treating her pain and quality of life.

"I basically had to tell them that I couldn't even look after myself, I can't look after any dependents," she said.

"I remember sitting in the specialist room and had my partner at the time sitting next to me, and (the specialist) asked him if he wanted kids as if what I want is completely irrelevant."

Caitlin Sloan had a hysterectomy at 24 and says the surgery saved her life. Source: Supplied / Caitlin Sloan

When the couple broke up shortly before her hysterectomy, she was scared to tell her doctors and "terrified" the surgery would be cancelled because she was single with no children.

Sloan, who is now 28, says while the hysterectomy was a "last resort" for her, the surgery was the best decision she has ever made.

"I am studying full time, I work almost full-time hours, I have a social life … I can function, whereas before, I was a zombie," she said.

"It saved my life … it is incredible. It was the best decision I could possibly make."