Tuesday, 12 March 2013

NAPS Study Day

National Association for Pre menstrual Syndrome (NAPS)
Study Day on Women's Health - 1st March 2013

Women and their Hormones

I was very kindly invited along to the recent NAPS Study day on Women's Health in Southampton. As a PMS Lay Champion, PMDD sufferer and Health Activist I was permitted to attend the event which is usually only for medical professionals and trainee's. It was an amazing opportunity for me to get a window into what goes on behind the scenes and a perfect opportunity to share with others and let them know what happens at these things!  Thankfully, I was in the ovulatory phase of my cycle, and so was able to attend. Had the conference been held a week later, I may not have made it!

The venue (The Hub Theatre in Southampton) was very nice. Bright, clean and welcoming. It was really lovely to meet Jackie, the CEO of NAPS, as we had spoken via email quite a few times. I was a bit nervous, but after a coffee and a chat with Jackie, It felt good to be there.

Talks started with Mr Nick Panay, Consultant Gynaecologist and the Chairman of NAPS. After an introduction to the day and NAPS, he went on to talk us all through the NAPS guidelines on the management of PMS. These guidelines are available for £5 from the NAPS website and provide a very useful tool for GP's and patients when devising plans for managing PMS. Nick touched on the history of PMS, quoting Hippocrates and that the first time anyone made any connections between PMS and cyclical ovarian activity was in 1873 by Henry Maudsley. In the 19th century many called it 'Menstrual madness' and believed it was brought on by women reading serious books or playing music! By 1931 the term Pre Menstrual Tension was coined and in 1953, Dalton and Greene introduced the term Pre Menstrual Syndrome. In 1957 Katharina Dalton set up the first ever PMS clinic. The National Association of Pre menstrual Syndrome was founded by Dalton in 1983 and 5 years later, Professor John Studd discovered that menstruation was not an essential feature of PMS and began to use the term Ovarian Cycle Syndrome. Despite the recognition in the medical profession, the stereotypes, myths and taboos that surround menstruation continue to this day, with negative articles in women's magazines still being published. You would have thought that with all the research and support from medical professionals that this would no longer happen, but unfortunately PMS is still the butt of many jokes and is not taken seriously by the general population.

Mr Panay's talk was followed by Dr Carrie Sadler (GP and Associate Specialist in Reproductive health) and Ms Annie Hawkins (O+G Locum Consultant at Chelsea and Westminster Hospital) who shared results taken from the Southampton Women's Survey and the NAPS Survey 2011. It was interesting to know that such a study had taken place. The Southampton Women's Survey started in the 1990's and interviewed over 12000 non pregnant women and included questions about PMS. The survey also followed these women through pregnancy and the development of their children. The most interesting conclusion was that women were less likely to have symptoms if they had been educated about the effects of the menstrual cycle and how to manage their symptoms. It was also noted that stress was a major factor in the severity of symptoms. Both surveys showed the need for more research and funding for raising awareness.

I would like to see more education for teenage girls in schools. If we educated our daughters about the menstrual cycle and how to see the early warning signs that their menstrual cycle may be becoming troublesome, I think we could reduce the incidences of extreme PMS or PMDD. Girls learn the basic bodily functions in school, and how to deal with having a period, but who talks to them about how they might FEEL? From personal experience, many women are unaware of what a detrimental effect the menstrual cycle can have on their mental health and well being and many who suffer from PMDD feel like they are actually 'going mad' or suffering from a severe mental health problem. If these women had known that the menstrual cycle CAN cause such severe problems I think we could see more women taking more control of their own bodies and cyclical problems, maybe even 'nipping it in the bud' before PMS (which can be treated relatively easily) develops into an extreme disorder. Stress is the main enemy of women who suffer from PMS, PMDD, fertility problems and sexual problems. This point was re-iterated many times throughout all the lectures.

Next up was Dr Alain Gregoire, (Consultant Psychiatrist at Southampton) talking about giving good ante-natal and post natal care. Dr Gregoire was an entertaining animated speaker who introduced us to a variety of facts regarding the research done on the effects of depression in pregnancy and how it can affect the child later on in life. He also noted that despite the research proving that mothers pre disposed to depression were highly likely to have problems post natally, that very little was in place to support these mothers. It made me realise that the doctors and specialists are probably just as frustrated with the way things are here in the UK as the patients themselves, and that many are working hard to change things. They are limited by funding, lack of research and all the red tape that surrounds working within the medical profession.

Ms Dani Singer, Adult Psychotherapist, London talked about the psychological aspects of premature ovarian sufficiency and highlighted the need for sensitive labelling of such disorders. Using words such as failure or dysfunction can create a negative reaction in the patient and lead to a misunderstanding of the problem itself. Labels are not always helpful to the condition. I had noted that Mr Nick Panay had mentioned that PMDD was the American term for Extreme PMS, and in the UK, doctors prefer the term Extreme PMS. I know from the women I have spoken to with PMDD, that to be associated with PMS is to almost disregard how bad PMDD episodes can be. If you tell someone you have Extreme PMS, then the main thing they hear is PMS and as we know, that is rarely taken seriously, so I do feel that a distinction should be made between PMS and it's extreme form. Many women relate to the dysphoric element of the description PMDD, and I feel it should have it's own name.. after all, it is currently described in the draft for the ICD 11 as 'a distinct clinical entity'.

Diet and the Menstrual Cycle was the topic presented by Ms Amanda Moore, Nutritionist, London. This was a fantastic talk highlighting the benefits of a healthy, low GI diet and it's positive effects on pre menstrual symptoms. You can devise nutrition plans depending on the symptoms presented. If you have more physical problems, foods to help support those bodily functions may help relieve symptoms, if it's more psychological, then foods can be prescribed to help with brain health and function. I think many women could do a lot more to help fight their PMS symptoms if they were more aware of what was good and bad to eat (although the bad is obvious in most cases!) The talk made me realise that I need to start getting more oily fish in my diet! Twice a week please! It also confirmed my thoughts that people in the UK can suffer greatly from a lack of vitamin D, which in turn reduces our serotonin levels. In some cases this can develop into Seasonal Affective Disorder, which can mean women with PMS/PMDD can suffer much more during the winter months in the UK.

The debate of the day was supposed to be between Professor John Studd (Professor of Gynaecology, London PMS and Menopause Centre) and Ms Claudine Domoney (Consultant O+G, Chelsea and Westminster Hospital). The topic – HRT can be taken forever. Unfortunately, Professor Studd was unable to attend, so we were all entertained by Claudine presenting both sides of the debate with an occasional comment from Nick Panay! It was very interesting and Claudine provided some much needed light relief after an intense morning of lectures. It was concluded that the newer bio-identical forms of HRT are safe for continuous use as they work in very small doses, and if an individual is happy with their medication there is no real reason to stop. What was also enlightening was hearing the frustrations of doctors who have had certain HRT medications discontinued.. often for no other reason than profitability to the drug company. It highlighted again that the doctors really do try to do their best, but are often restricted by the price of medications and are at the mercy of the drug companies that make and supply them.

After a brief break for lunch, we were back into the theatre for a discussion on contraception with Gilly Andrews, Clinical Nurse Specialist, London. It was amazing to hear about the advances in the contraceptive pill and the different types of pill coming onto the market. It was also explained that the reasons certain brands of pill are available abroad but not in the UK are because our own health authorities refuse to allow them to be prescribed over here. This is often down to the cost of the medications, or concerns over safety. If you are considering contraception and suffer from PMS, ask your GP or Family Planning Clinic for details of the newer contraceptive pills, such as Yasmin and Qlaira, and products such as the Nuvaring.

The afternoon talks moved away from the subject of PMS. Ms Claudine Domoney and Ms Annie Hawkins looked at sexual problems in women and how to diagnose correctly by taking into account other factors such as stress and background. Mr Tim Hillard, Consultant Obstetrician and Gynaecologist from Poole Hospital discussed pelvic floor disorders and the best way to help patients, including some really effective methods of treatment and Mr Michael Dooley, Consultant Gynaecologist and Medical Director from The Poundbury Clinic talked about fertility and the menopause, including what effects fertility and ways of dealing with infertility.

The day had been fascinating. It had been a pleasure to meet Nick Panay and the people behind the scenes at NAPS. Although I am no longer going down a medical or surgical route for managing my PMDD, I am very grateful for the work that all these specialists are doing. It had been said at the start of the day, that often, the first thing a patient does when they meet a specialist who understands their condition is shed some tears. I know that feeling well. I have met only a few medical professionals in my life who have taken me seriously, who have helped me and supported me. It was their understanding and belief that helped me to come to terms with what was going on, that it WAS real and there was an explanation. It enabled me to (eventually) become strong enough to do what I am doing now, which believe me, is not what I'd had in mind!

The next step for me is the launch of PMDD Awareness UK and an awareness month in April. The new website is almost ready and I am looking for women who would like to share their story/write about a certain aspect of PMDD. There will be ideas on the website of how you can help raise more awareness of PMS and PMDD, and ways that you can contribute to the website. Email me direct at pmddawareness@live.com if you would like to contribute to the website..

Thank you to NAPS and Mr Nick Panay for letting me peep through the window into the medical world, and for supporting my work so far. I hope that one day I might be able to stand at the front of the room and share my story, to give GP's and students a real life account of what PMS/PMDD really feels like, from my own personal story and from the stories I have read of hundreds of other PMDD sufferers over the years. If you ever get a spare slot, give me a call!

By Cat Hawkins

Mother, Artist, Writer, PMS Lay Champion, PMDD Blogger, Facebook Support Group Owner
Founder of PMDD Awareness UK – A grass-roots organisation with a mission to change the way the UK views menstrual health problems. Promoting a positive menstrual outlook.

(All personal views expressed are my own.  An edited version of my report can be found in the NAPS February bulletin  www.pms.org)

1 comment:

Rebekah said...

This was a great read - thank you!

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