By Harriet Whitehead
A budding actress has had to put her dreams on hold after being left housebound due to crippling pain caused by endometriosis.
Throughout her teens Issie Lowe was told she was just suffering from period pain and it took almost a hundred trips to the doctors before she was referred to a specialist – and only after a chance comment from a boyfriend’s friend flagged up the condition.
At it’s worst the pain feels like she is being stabbed or kicked in the stomach, the 21-year-old claims.
The children’s entertainer has being living with the pain since she was 14 and claims she has lost jobs and friendships because of it.
Issie is now hoping to raise awareness of what she described as a ‘hidden condition’.
Issie, from Bolton, Greater Manchester, said: “When you start your period you have bad pains so I just thought it was normal.
“As I got older they just got worse. I would go to the doctors and they told me not to worry and that it would stop eventually.
“I would have to pull out of PE lessons and from the age of 15 I started feeling paranoid – I was asking ‘why can’t I do this when others can?’
“If you think about the worst possible period pain and then times it by a hundred that it was it is like. It feels like you’re being stabbed, kicked or punched in the stomach.
“It would be in my back and I would have shooting pains through my legs and in my shoulders.
“Sometimes I could not get out of bed. I felt like I was frozen I was in that much agony.
“You could wake up feeling fine thinking ‘today will be a good day’ and the next minute it completely changes.”
Endometriosis – when the cells attached to the womb are found in other areas of the body – affects around 1.5 million women in the UK and can lead to infertility, fatigue and bowel and bladder problems.
Aspiring actor Issie said at first she didn’t want to make a fuss and did not go to the doctors until she was 17 – even then that was only because her period was irregular.
Issie said: “I just thought I could not handle it or I was not woman enough to handle the pain.
“During that two year period before I was referred I must have gone to the doctors almost a hundred times.
“To not have a diagnosis was so frustrating. I was getting really paranoid. If someone keeps telling you that you’re fine and it’s nothing you think ‘why am I making a fuss?’ and ‘maybe I’m making more of this than it is’.”
Issie said doctors thought she might have had poly-cystic ovaries and despite having a full body ultrasound nothing was showing up until her boyfriend’s friend mentioned endometriosis.
She was then given a laparoscopy which showed, although at the lower scale, that the problem was so spread out they were unable to remove the cells.
Issie, who at this point had started an acting course at a theatre school in Manchester, said: “If it had not been for that person I do not know if I would have been referred.
“When I came around from the anesthetic they told me they couldn’t remove it and it might affect my fertility in the future so if I was thinking about children I should try and have them as soon as possible. At 19 that was not something I was thinking about.
“I was prescribed contraceptive pills to stop my period and that will be a lifetime thing. There is not really a specific treatment.
“The pills were fine for a few months. I could get around and do normal day-to-day things and the pain was bearable. Then I don’t know if my body got used to them but it started to get worse and worse.”
Issie went to see another specialist who explained there was no cure.
Issie said: “I was thinking – how can there be nothing they can do?
“It is an emotional rollercoaster – from getting a diagnosis but then hearing there’s no cure. It crushes you thinking you will have to deal with it for the rest of your life. I started to have panic attacks because of it.”
Despite missing around three months of her year university course to her surprise Issie managed to graduate with a merit but the condition meant she was unable to hold down jobs.
Issie said: “It stopped me from being able to work which has been one of the hardest things. I had been working in retail and I just had to give it up because of the pain.
“A couple of months later I got a job as a waitress but at the same time I had gone back to my consultant and changed my treatment to a hormone injection.
“I had to take a lot of time off sick and it felt like people did not believe me. I felt like I was back at school with the stigma of it being ‘just bad period pain’.
“Last year I got to the point where I gave up and thought what is the point in me planning to do anything?
“I turned 21 and didn’t want to do anything to celebrate. I just wanted to be left alone.
“My boyfriend took me to London but it was the worst trip. I was so miserable. I was just in pain the whole time.”
Issie said the hormone injection made everything worse – and she had symptoms typically associated with the menopause.
She said: “I was having hot flushes all the time. I was dripping in sweat.
“My mood dropped to the floor. I was so miserable and could not control my temper. I would have an argument with anyone. It cost me so many friendships and almost broke up my relationship. I would cry about 20 times a day.
“My mum said to me after I had come off that treatment that there were some moments when she felt like she couldn’t live with me anymore – it got that bad.
“I started to isolate myself. I was feeling so low and hopeless. I locked myself in the house. I felt like I lost myself and that this had taken over me.
“I did not want to go out and see anybody because I felt almost ashamed of myself.
“There were points when I would say I wish I had not got diagnosed anymore because I felt like it had made everything worse.
“I was thinking this is going to my life and that sent me over the edge. There were times when I felt like I just did not want to be here anymore. I did not know who I was.
“I would look in the mirror and not recognise the person looking back at me. I had ballooned in weight because of the treatment. My face got rounder and I hated the way I looked.
“Because of social media – you see people your age going out clubbing or on holidays and I was just sat at home not being able to do anything.”
After coming off that particular treatment things have started to get better but Issie still fears she may never realise her dream of becoming an actress.
Issie said: “At the moment it’s getting better. I can get up and about and am able to take on some more hours at work.
“There have been points where I’ve felt like I will never be able to act – particularly because of how it can just go from being fine to being bad.
“I am joining a new agency to try and see what happens but it does come into my mind – what if it affects my career?”
“I know I will have to do something that allows some flexibility for the days when the pain is that bad. You just never know what the next day will bring.”
Issie has now started blogging on the condition in a bid to raise awareness.
Issie said: “It is such a common condition but you never hear about it. How can it be so unknown?
“When I was growing up I wish someone would have told me that the pain I was feeling was not normal.
“It is still a taboo subject. By blogging I hope I can help the next person and let them know they do not have to go through it alone or accept it being brushed off.”
FACT BOX: WHAT IS ENDOMETRIOSIS?
Endometriosis is a common condition where tissue that behaves like the lining of the womb (endometrium) is found in other parts of the body.
It can appear in many different places, including the ovaries, fallopian tubes, inside the tummy, and in or around the bladder or bowel.
Endometriosis mainly affects girls and women of childbearing age.
Symptoms include back and pelvic pain, period pain, pain during or after sex or when using the toilet, feeling sick, constipated or having diarrhoea and difficulty getting pregnant.
There’s no cure and treatments include painkillers, hormone medicines or surgery.