A TV personality and former politician has opened up about the excruciating condition that has left her in unbearable pain for around 21 years.
Rebecca Jane, 39, is preparing to undergo an operation to ‘switch her ovaries off’ after being diagnosed with endometriosis, a condition where tissue similar to the lining of the womb grows in other places, and adenomyosis, a condition where the lining of the womb starts growing into the muscle in the wall of the womb.
This is after decades of chronic pain which would cause her to faint.
Rebecca, born in Barrowford and now living in Clitheroe, estimates she has been to the hospital around 30 times since the severe pain started around the age of 18.
Former UKIP deputy leader Rebecca, who appeared on Celebrity Big Brother in 2017, said: “I had always had painful periods but nothing that I thought was out of the ordinary at the time.
“All of a sudden I started to develop horrific stomach pain and my stomach would swell up until it looked like I was seven months pregnant. It felt like I was burning from the inside out.
“This would happen until I passed out with the pain. I would often have to go to hospital but doctors could never find out what was wrong.”
Rebecca said it took decades to receive an accurate diagnosis, adding that her symptoms became worse shortly after the birth of her second child when she was 28, following a traumatic emergency caesarean section.
She said: “Nothing I tried ever worked and all I could really do was learn how to bear the pain.
“The pain became more frequent and spread to other parts of my stomach so my whole torso is in pain.”
In January Rebecca, who founded female private investigation service The Lady Detective Agency, which she sold in 2018, said her life came to a “standstill” in January when the pain became intolerable.
“Life came to a standstill for six weeks,” she said. “I couldn’t work, I couldn’t even walk to the end of the street.
"I felt sick permanently. I couldn’t eat anything without the pain coming back. I passed out a few times and ended up in hospital twice.
“Other times the pain goes away but this pain was every single day for six weeks.”
The pain has started to take a mental toll on her.
She said: “The painful periods are horrible but I can cope with that. When the really bad pain starts I don’t know if it’s going to last two hours or two weeks.
“I was a mental mess in January and I thought my life was over. Severe chronic pain sends you out of your mind and nothing helps it, even the most extreme painkillers you can be given.
“When I am in pain everything in my diary has to be cancelled. In January I was so unwell and exhausted. Even sitting up in bed was too tiring.”
She stepped down from her role with UKIP in January after just over a year in the job.
After showing the doctor an article, where a woman with endometriosis displayed similar symptoms to Rebecca, she was given an ultrasound and finally diagnosed.
She is now preparing for a procedure in July which will “switch her ovaries off" and prepare for a potential full hysterectomy.
She said: “The procedure will put me into the menopause straight away.
“Whatever the side effects of the menopause are I know they are better than what I have to live with.
“I have had children so that mental impact isn’t there for me. If I hadn’t have had my children I think I would be going out of my mind right now.
“It’s just rubbish that I had 21 years of pain to get here.”
Rebecca believes she only received a diagnosis after urging doctors to investigate.
She said conditions like endometriosis, which is thought to impact one in 10 women according to the NHS, need to be taken more seriously.
“So many women have similar stories,” she said. “Getting diagnosed seems to be the biggest problem of all.
"It wasn’t until I got really firm with health professionals that it was taken seriously. I was ‘fobbed off’ so many times.
“People took me more seriously when I made a diary of absolutely every symptom I had. “Doctors started taking it seriously when they could see the horrific pattern of events.”
Symptoms of endometriosis
- pain in the lower stomach, pelvis, lower back or legs
- painful periods which affect your day to day life – for example, you can’t go to school or work or take part in activities that you enjoy
- pain during ovulation
- heavy or long lasting periods
- pain during and after sex
- pain or bleeding when going to the toilet (pain before or after peeing or pooing)
- bleeding from your back passage (rectum)
- blood in your poo (usually at the same time as your period)
- bloating
- persistent exhaustion and tiredness
- difficulty getting pregnant
Symptoms of adenomyosis
It’s possible to have adenomyosis and have no symptoms. Symptoms you might experience include:
- heavy periods that last for a long time
- severe period pain
- a feeling of pressure in your tummy
- bloating (your tummy sticks out more than normal)
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