‘I thought it was a miracle cure, but ended up blind in one eye and in brain surgery hell’

Stacey Hulme has spoken of her ‘hellish’ ordeal

Stacey Hulme was delighted when doctors finally identified the cause of her erratic mood swings and heavy periods. Her problems had begun in her teens and progressively got worse, causing her to sometimes feel suicidal around her period.

So the 41 year-old single mum-of-four from Bolton felt overwhelming relief when she was diagnosed with severe premenstrual disorder, and was prescribed injections to induce a chemical menopause.

Initially, the jabs felt like a ‘miracle cure’ as her symptoms stopped. But they would be replaced with a new set of problems which saw her, in her own words, ‘go through hell.’

She later became bedbound and permanently lost the sight in one eye. Doctors diagnosed her with Idiopathic Intracranial Hypertension (IIH), a rare condition which causes dangerous pressure in the brain.

She has had to undergo seven brain surgeries and a hysterectomy to try to ease her condition. After her most recent surgery, Stacey finally believes she may be on the road to recovery and has launched a support group to help others with IIH.

Stacey’s health issues started at young age

Stacey says her initial problems started as soon as her periods began.

“My mum took me to the GP aged 15 because I had very low moods and erratic behaviour around my period. I was told to take vitamins and St John’s Wort and it wasn’t taken seriously at all,” she says.

As the years went by, Stacey’s condition became worse. Around her period, she says her mental health was severely affected.

“It was like I was two different people,” she says. “Around my period I became suicidal at times. I was impulsive, overspending and being far more extravagant than normal.

“My children knew they had to give me space when I had my period. I felt I couldn’t be a proper mum, I couldn’t have a relationship. I was very sensitive to noise and touch. I always worked, but it was hard. My periods were very heavy, and I was in bed with the pain.

“It became harder and harder to come back from those few days each month. I would ask myself why I was suicidal one day and perfectly well the next. I was desperate.”

Stacey was prescribed anti-depressants but they didn’t help and she was eventually referred to a gynaecologist.

In November 2022, she was diagnosed with severe Premenstrual Dysphoric Disorder, and prescribed Prostap injections to induce a chemical menopause.

“I was so relieved, I accepted what the doctor told me,” she says. “The injections were like a miracle cure; all my symptoms stopped. But in their place, I got headaches. At first, I didn’t link them with the injections. I felt so much better that I couldn’t see a negative side at all.”

However, the headaches became worse and Stacey also experienced dizziness and floaters in her eyes, which she reported to her doctor. In March 2023, she woke with what looked like red cobwebs in her eye.

After a scan, she was rushed to hospital with a suspected brain tumour, but was instead diagnosed with IIH.

Stacey lost vision in eye

“I was so relieved it wasn’t a brain tumour, that I didn’t realise how serious IIH was,” she says. “I was referred to a specialist, but the waiting list was so long. In the meantime, I was in and out of hospital and still taking the hormone injections.”

Six months later, the link between the injections and IIH was made and Stacey was told to stop taking them immediately. But by now, the damage was done. In March 2024, she lost vision in her right eye completely.

She underwent a full hysterectomy and seven brain surgeries in order to ease her condition. But for two years, she was laid flat in bed, unable to lift her head because of the pressure.

Stacey, who is mum to Riley, 21, Ayden, 20, Macy, 18, and Ollie, 14, says: “It was horrific. As a single mum, I needed to provide, yet I had to give up work.

“My eldest son had to provide financially, and my other children were a brilliant support. My dad, John, and sister, Chelsea, have been wonderful, helping out every day and taking me to appointments.

“But it shouldn’t be like this, women with IIH should not have to wait so long for help. IIH predominantly affects women who are overweight so the advice is just to lose weight but that is outdated. In my case, it doesn’t apply. There should be more support, especially for the horrendous headaches.”

Stacey had recent surgery which went so well that doctors have now switched off her shunt. She is able to sit up without pain and is looking to the future with hope.

She has started ‘IIH Awareness and Support UK’ to help others and to campaign for updated and more efficient treatment.

She says: “I have been through hell the past two and half years and now I want to reach out to other women and help them.”