Feel Good

PMDD is real – and it affects one in 20 women

This most severe form of PMS can cause anxiety, changes in appetite and conflict. But, despite rumours to the contrary, there is PMDD treatment NHS specialists can offer.

Written by High Life North
Published 19.11.2022

For three weeks of every month, for five years, Vickie Walsh from Whitley Bay would wake up feeling ‘not right’.

How she could handle life and stress would deteriorate every other fortnight, almost like clockwork.

‘It was like I was pressing the self-destruct button every month,’ Vickie tells us. ‘It was so bad, I had thoughts that I should not be here.’ She couldn’t resolve conflict; her anxiety went through the roof.

Vickie later learned that two of those three weeks were the luteal phase of her menstrual cycle – the time between an ovary releasing an egg and her period. But, for a few days before that, until after her period, she felt terrible.

It was Vickie’s mother-in-law that first heard about premenstrual dysphoric disorder (PMDD), originally an American term which is now what severe premenstrual syndrome (PMS) is more commonly called.

PMDD is a hormone-based mood disorder, characterised by severe psychological, and sometimes physical, symptoms. It’s a severe reaction to hormonal fluctuations that all women go through, every month, but this most severe form of PMS affects one in 20 women.

WHAT ARE PMDD SYMPTOMS?

Emotional experiences:

  • Mood swings
  • Feeling upset or tearful
  • Lack of energy and less interest in activities you normally enjoy
  • Feeling anxious, hopeless or even suicidal
  • Feeling angry, irritable, tense or on edge
  • Feeling overwhelmed or out of control
  • Difficulty concentrating

Physical and behavioural experiences:

  • Breast tenderness or swelling
  • Pain in your muscles and joints
  • Headaches
  • Feeling bloated
  • Changes in appetite, such as overeating or having specific food cravings
  • Sleep problems
  • Increased conflict with people around you
  • Becoming very upset if you feel that others are rejecting you

VICKIE’S STORY AND THE PMDD TREATMENT NHS DOCTORS APPROVED

‘I think I’ve probably suffered with PMDD since I was 15, but I was placed on the Yasmin contraceptive pill, which is thought to be one of the best pills for treating PMDD, so my symptoms were masked for about 12 years.

‘After I had my twins in 2015, my body went into meltdown with no medication. The doctors try different treatments for different women, depending on their symptoms. Acupuncture and talking therapies work for some ladies. Taking certain contraceptives can help, or some doctors will prescribe antidepressants because what they’re hearing from the patient is that they’re depressed, feeling hopeless, have lost their confidence or are even feel suicidal. That can also work for some people, but it didn’t work for me. We tried everything.

‘For five years, I would only have five good days out of 30. When I say good, I mean I was in good mental health, where I truly felt like me – confident, happy and content. Sometimes I couldn’t stay awake during the day and would nap for four hours. Then, 10 days later, I would suffer insomnia. I was so irritable I couldn’t stand to be around my family (who I adore). I’d snap at the slightest thing, something that normally wouldn’t bother me at all.

‘I couldn’t concentrate on anything for long periods of time. I’d cry for almost no reason and was constantly on edge. I would lose confidence, I thought I wasn’t good enough to do my job and often needed reassurance. Most months I truly believed people would be better off if I wasn’t here. This broke my heart because I love my life, I love my family and it scared me every month that I was so not myself and couldn’t believe I was having thoughts like that.

‘In 2020, I went to see my saving grace – Dr Diana Mansour, a Consultant in Community Gynaecology and Reproductive Healthcare in Newcastle. It took just 18 minutes for her to listen to me, actually hear what I was saying, and come up with a solution. I really felt like I was speaking to an expert.

‘When Diana understood that we’d exhausted all possible options for treatment, she told me about the chemical menopause, so I went for it. It’s an implant I have injected into my stomach every 10 weeks, which basically switches off my ovaries and tricks my body, so I don’t have any hormone fluctuations. It’s not pleasant, but it’s a means to an end and I feel so much better now.

‘Some women have a hysterectomy to stop all the symptoms of PMDD, but I’m only 35. That’s a massive, drastic step for me that I’m not ready to take yet. However, if I do ever want to go ahead, that surgery is already pre-approved for me, which is reassuring to know that it’s an option.

‘Since February 2021, I have also been complementing my treatment with acupuncture, which has had amazing results. I’m happy to pay for this privately as the results have been so good.’

RAISING AWARENESS OF PMDD

Vickie is keen to talk about her experiences in the hope that she can help other women who may be suffering with PMDD and don’t even realise.

‘It’s definitely being talked about more – you only have to look at the online support groups. The one I’m a member of had 2,500 members when I joined and now there are 9,000 women on there. It is real.

I see women on these forums saying how they can’t fight with their GP anymore, trying to encourage them that there really is something wrong, that they’re struggling to explain how they feel. And GPs are still pigeonholing us into having other problems, whether it’s bipolar or depression, and telling women they just need antidepressants. But we trust them as the experts and generally follow their advice.

‘I think part of the problem is that a lot of women go to see their GPs when they’re suffering from their PMDD symptoms, so they struggle to put into words what their problems are. My advice is to go armed – track your symptoms for three months, take a list of those symptoms, and ask for a referral.

‘I would love for just one person to read this and think: “I feel like that sometimes”. Perhaps it would save them the many years of confusion, frustration and hopelessness that I went through.’

NHS PMDD TREATMENTS – WHAT THE DOCTOR SAYS…

The doctor who finally helped Vickie after listening properly to her symptoms, Dr Diana Mansour, says in recent years more research has gone into PMDD, as well as reanalysis of work done 30-40 years ago. However, she says the most important thing is for GPs to listen to their patients.

‘We’ve got some really good evidence about what does and doesn’t work,’ Diana says. ‘For example, it was once thought that Vitamin B6 was a great treatment for severe PMS, but now we know it isn’t. It’s about recognising the problem, getting a clear understanding of their personal experience, tracking symptoms and trying different treatments.

‘For some, acupuncture, the contraceptive pill or even St John’s Wort may work. You don’t see many people with PMDD as severe as Vickie, but a lot of the time people don’t listen to women suffering from PMDD, they don’t hear what they’re saying. For some women, their lives are completely destroyed by this. They can be suicidal. Even psychiatrists have been unable to help. But, once you get the diagnosis right, you can take action and give bespoke treatment that helps make these women’s lives better.’

For more information about PMDD and support groups, visit the websites of projects IAPMD or Vicious Cycle, or find support groups on Facebook and Instagram

 

Other stories by High Life North
28.01.2023

Polycystic ovaries, IVF and the fight for fertility

High Life North
27.12.2022

Trying for a baby? 5 reasons why ‘Twixmas’ is the best time to conceive

High Life North
17.12.2022

Nigella’s Christmas Rocky Road

High Life North
01.12.2022

Spiced Christmas biscuits

High Life North
01.12.2022

10 tips for safe online shopping

High Life North
26.11.2022

How to calm negative feelings triggered by social media

High Life North