When we told the story of Lucie, who had a hysterectomy at 28 because her periods made her feel suicidal, readers got in touch with similar experiences. For many, it took years to find a doctor who could help them – and often daughters inherited the condition from their mothers. Elizabeth, 45, and her daughter Grace, 15*, are at either ends of their hormonal journey.
At 15, Grace has resolved never to have children and is resentful that her mum didn’t do the same.
Both of them have a severe form of premenstrual syndrome (PMS) which fuels outbursts of anxiety, rage, psychosis and debilitating physical pain.
“My mum has given me something that I now have to deal with for the next 40 years,” says the teenager. She wants to be the third generation in her family to have a hysterectomy. Not in her 30s or 40s like her mother and grandmother, but now.
Grace’s anxiety has got worse since her periods began and she often feels “sad, angry and exhausted”.
School is a struggle. She is trying to plough on for now, but she can’t wait to finish.
“At school I can’t concentrate in the build-up to my period, and when I’m in a rage I feel like nobody understands me. Nobody else seems to be going through it. I feel so isolated,” she says.
She becomes desperate for her period to start – even though it’s something she dreads.
“It’s a bit like putting a pin in a balloon – I need to burst,” she says. “But when I actually get it, I can barely function.”
Grace’s periods can last most of the month and have been so heavy that she can’t get through a whole lesson without needing to change her sanitary pad.
“I would be drenched through eight layers of clothing, and 20 minutes later it was all back through again,” she adds.
But worse than the bleeding is the profound feeling of shame and humiliation that snakes in after she has lost control and had a violent outburst.
“I feel like I have let myself down, I get tearful and so embarrassed, almost traumatised,” she says.
Her GP’s solution was to encourage Grace to go on the contraceptive pill when she was 13. But when she was put on a pill with a high dose of synthetic progesterone, she became violent overnight.
“It made life really awful for everyone,” says Grace.
When her brother – then five – witnessed her screaming and shouting and saw her hit their mum, he shut himself away in the larder.
“I hope he doesn’t remember that time, when things went very badly wrong with Grace,” says Elizabeth. “She was scary, very scary.”
She recalls what happened when the family were all having lunch together and Grace was asked to move up a seat. “That sent her off into orbit, over absolutely nothing,” says Elizabeth. Things quickly escalated and Grace smashed up the bathroom.
This was not the daughter she knew – she describes Grace as very sweet and eccentric, like a girl from the pages of an Enid Blyton novel.
The pill was pumping her full of progesterone – Elizabeth says they are both hyper-sensitive to this, but it never occurred to the GP to look at the adverse effects of certain hormones in any depth.
Grace was referred to a psychiatrist who put her on anti-psychotic medication. The intention was to subdue her rage and “get the family through Christmas” according to Elizabeth.
Things got so bad that the day after Boxing Day, Elizabeth met the psychiatrist to talk about putting her daughter into residential care.
“Not because she wasn’t loved and cared for, but to keep everyone safe,” she explains.
But she always felt that her daughter’s problems were linked to her menstrual cycle and when she heard about premenstrual dysphoric disorder (PMDD), by chance on the radio, she realised that Grace’s symptoms ticked all the boxes, as did her own.
What is PMDD?
- Severe PMS/PMDD affects 5-10% of menstruating women and is often triggered by fluctuations in hormone levels
- Some people have a genetic vulnerability to these changes – research has shown that there’s often a family history of PMS
- While physical symptoms are common, it is the emotional symptoms, eg depression, irritability and aggression, which lead to the greatest problems
- PMS/PMDD can affect anyone who menstruates, but it most commonly occurs during adolescence, when periods first start, and in over-35s
- Hysterectomy is usually a last resort for PMS/PMDD and not undertaken lightly, but it can be an effective cure – patients must receive HRT to ensure that PMS problems are not replaced with menopause problems
Source: Nick Panay and Anna Fenton
She found a doctor who specialises in hormonal treatments for PMDD. Grace is now on bioidentical hormone replacement therapy (HRT), which is considered a more natural hormone therapy because – as the name suggests – it uses hormones that are chemically identical to those of the human body.
This approach appears to be helping and Grace believes that if her mum hadn’t found out about it, she would have had to leave home.
“When you close the front door, it should be your safe haven. But when that safe haven becomes booby-trapped by PMDD it’s awful,” says Elizabeth.
Elizabeth is all too aware of what a life with PMDD could mean for her daughter, because she has been through it herself.
“I have been held hostage by my hormones since I was 14,” Elizabeth says.
She was also put on the pill as a young teenager, which dealt with the bleeding but not the psychological symptoms. Ever since Elizabeth got her first period, she has had suicidal thoughts.
“Realising in my 20s and 30s that I was only halfway through my life really terrified me,” she says. “And now I am seeing my daughter following the same patterns that I know so well.”
Elizabeth’s hormonal struggle was only remedied by a hysterectomy when she was 42, following severe pelvic pain in the run-up to menopause. She had her ovaries removed too, and is on HRT.
“There is an assumption you’ll feel less of a woman because you don’t have a womb – but I couldn’t be happier to be rid of it,” she says.
Elizabeth’s own mother struggled with her hormones too and had a hysterectomy at 35.
Although the bioidentical HRT patches have gone some way to subduing Grace’s symptoms, they still aren’t the perfect solution.
“I think Grace will continue to ask for a hysterectomy until she gets a hysterectomy, whether that’s in her 20s, 30s or 40s,” says her mum.
Guidelines from The Royal College of Obstetricians and Gynaecologists suggest when treating women with severe PMS, hysterectomy has been shown to be beneficial, but Grace has found it difficult to get anyone to take her request for the operation seriously. Her mum says doctors assume she will change her mind when she gets older.
But Grace doesn’t see it that way: “I don’t want to have kids because I don’t want them to deal with what I’m going through,” she says.
Elizabeth doesn’t blame her daughter for feeling angry towards her.
“Would I have knowingly given somebody a life sentence of awful hormones that make you feel depressed and make you want to turn the switch off? No, I wouldn’t.”
But for her to agree she never should have had her? That would be like wishing Grace had never been born, she says, and she’d never wish that.
The hysterectomy Elizabeth became so desperate to have wasn’t easy to get signed off, and now her daughter faces the same battle.
Other members of the family are stridently against the idea and say Grace is far too young to have the operation – but Elizabeth knows how it feels not to be believed and she knows how different life can be on the other side of effective treatment. All that, she says, gives her the steel to fight her daughter’s corner in a way nobody ever fought for hers.
“I don’t dismiss her,” she says. “To dismiss her feelings about her hormones and the effect that they have on her life is also to dismiss how bad it is for her.”
Elizabeth is aware that how well her daughter does in her GCSEs will really depend on where she is in her cycle.
Elizabeth believes her own life would have turned out differently if her hormones had been taken into consideration sooner.
“I look back on the rages I used to have and I wince,” she says. “I ended up quitting a lot of things over the years because I felt immobilised by depression caused by my hormones.”
When your hormones dictate so much it has a domino-effect on your life and how much you can achieve, she explains.
She recalls having to plaster on a smile to hide the pain she was feeling, and wondered how other people were able to push on when she couldn’t.
“I used to look at my peers and think I was being particularly feeble and lazy and unambitious – and that all played into my low self-esteem,” she says.
She loves being a stay-at-home mum, but had long harboured ambitions to be a writer and thinks perhaps if she’d had her hysterectomy sooner, she might have made that happen.
“I do feel sad that it took so long for my hormones to be taken into consideration, but things have worked out in the end,” she says.
Help and support
Her monthly battles also had an impact on relationships, but she has been married to her second husband for 10 years now. She describes the rugby player as “lovely and extremely supportive – he’s learned to keep a low profile when the hormones in the household are on the rampage”.
On a Friday night he will tentatively say: “Oh, is it time to change your [HRT] patch, dear?”
“Of course, I shout at him before I do it and then I feel much calmer after I change the patch,” Elizabeth says.
Now her focus is on finding a path out of it all for Grace.
At the moment, Grace is having slightly more good days than bad – it used to be the other way around.
“That’s probably the best I can hope for until I can get a hysterectomy – I wish someone would just give me a hysterectomy,” she says.
“I just want to experience ‘normal’.”
Illustrations by Emma Russell
*Names have been changed