The 10 year test
After reading Brooke Elise's post on endometriosis, I decided to write about my younger sister's experience of hormone issues. After almost 10 years, she has finally been given a diagnosis of PMDD, PCOS and insulin resistance.
The first time I knew there was something wrong with my sister Mairi, something really wrong, I was on my way home from university for a visit and she came to meet me off the bus. She had just started her period and it hadn't quite settled into a routine yet. She put a tampon in and a pad in her knickers, as her flow had been a bit on the heavy side, and started the 10 minute walk to the bus stop.
By the time she came to meet me, the blood was right through her jeans. Her periods never settled and would sometimes last for two months, with terrible stomach cramps the whole time. Her doctor gave her menopause medication and sent her home.
I remember what a nightmare it was for mum to get her up in the morning, how bloated she was, that she'd sleep until 3pm at the weekend. By the time she went to university, she was sleeping for four days at a time, only getting up to go to the toilet or eat a cereal bar and then going straight back to bed. She was constantly sweating and dizzy and stopped leaving her flat.
Then that November, I got a text from her: "I'm in the hospital on a heart monitor. Don't tell mum." Of course, I ignored her and phoned mum immediately to tell her that Mairi had tried to commit suicide. It turned out Mairi had been sent to a GP for CBT (Cognitive Behavioural Therapy) a few days before. When she turned up for the appointment, the doctor told her he didn't believe in therapy, or mental health issues for that matter. He told her to go home and try not to think about it too much. We went to get her from the hospital and she moved home again.
She got a job in Tesco until she decided what her next move was. Her old school teachers would approach her to say, "God, I hope working here isn't permanent Mairi." People would come up to her on the bus, or in the pub and ask her about her suicide attempt or call her a nutter.
She was put on every contraception under the sun, every digestion medication under the sun, but nothing helped. She was diagnosed as bipolar and put on antidepressants and then told that was a false diagnosis. She did dancing at college and was a gym nut, but never lost a pound. The doctors told her she was eating the wrong foods but she was barely eating anything - almost everything she ate would render her unable to leave the bathroom for the rest of the day.
About a year ago, Mairi said she was going to go down to a private clinic in Surrey for hormone tests. She'd started doing research and put together a huge photo diary of her illness and was starting to feel fairly confident that's what was wrong with her. She'd put this forward to her GP for almost three years but had been denied tests.
I'll hold my hands up and say I was sceptical. I supported my sister but after all this time and all the medications, it seemed unbelievable that there could be a magical solution from a clinic over 500 miles away. Mum and I were so afraid of yet another disappointment, and one that would cost hundreds of pounds. Mairi had started to accept her illness - the depression, the fact she basically couldn't eat anything - and we didn't want her to go backwards, mentally.
Mairi was adamant, and she went to the Surrey Park Clinic last August. This is her experience:
"When you're ill, people get fed up listening to you and you get fed up talking about it. The clinic was expensive, but I knew it could change my life. Things that other people find easy have always been a battle for me and I had to risk the disappointment.
"I filled in an online questionnaire and they contacted me almost immediately to say they wanted to do a full hormone panel, and also test my insulin levels. I'd expected the hormones, but my insulin had never been mentioned by doctors before.
"The nurses were so kind and told me, "Don't worry, we're going to sort you out, we'll make you feel better." I had to drink syrup and immediately started sweating and shaking, which showed there was definitely an insulin issue.
"Dr Fawcett was tough and stern, but approachable. She was like a psychic; she predicted all my symptoms and then told me she wanted to scan me to check for polycystic ovaries. She said it was 'mad' I hadn't been scanned before, as I had all the classic symptoms. Unfortunately, they couldn't get a clear reading because I was on the Pill at the time, which masks it. I'll be going back for more scans.
"Even on the Pill, my oestrogen levels didn't even register on the scale. I started hormone patches that day. I have insulin resistance, which means I can't burn off sugar. It's immediately stored as fat. Weight has melted off me and my excruciating period pain is gone. I feel like I have my personality back. I'm finding things funny again.
" If I could go back in time, I'd fight twice as hard. The doctors were fobbing me off to the point they were rude to me. When professionals are telling you that you have mental health issues, you're bipolar, of course you believe it. I think you're the only person who's in tune with your own body and mind. Only you can sense changes."