Infertility etiquette

We’ve all been there, the “helpful” comments and suggestions from friends and family – the detailed story about the friend of a friend of a friend who had five children after she forgot all about her fertility problems and decided to “just adopt” instead, or the information from a newspaper article they’ve half read about a new treatment, which when you dash off to read it yourself you find has actually only been tried out on mice in Brazil. You know the kind of thing…

They are trying to be kind and supportive, but knowing how best to help a friend or family member who is having fertility problems is hard unless you’ve been there yourself. It isn’t always easy to know what to say or how to say it. Sometimes people avoid the subject altogether because they are worried about getting it wrong, but others turn into fonts of wisdom offering advice and tips on every aspect of fertility which can be difficult to swallow  when you know they don’t really have a clue what they’re talking about. Pamela Tsigdinos, the author who has published widely on childlessness and infertility, has written this excellent blog post about infertility etiquette which you may want to pass on to your friends and family – she says exactly what you want to say, but may not always feel able to.

Thanks to The Eve Appeal

Last night I went to an amazing event organised by the Eve Appeal, a gynaecological cancer research charity, as part of their gynaecological cancer awareness month. The subject was Talking Taboos and the evening aimed to discuss the things we don’t usually discuss, which can be a barrier to seeking advice about symptoms which lead to gynaecological cancers.

There was a panel of speakers including Professor Lesley Regan, President of the Royal College of Obstetricians and Gynaecologists, Paula Sheriff MP, BBC Woman’s Hour presenter Jane Garvey, Dr Ellie Cannon, Dr Christian Jessen and FGM campaigner Nimco Ali. The panel took questions from the audience and covered a huge range of taboo subjects from pubic hair to menstrual bleeding and you can see the discussion on the Eve Appeal’s Facebook Page.

It made me think about how many taboos there are about fertility and treatment, and all the things we find difficult to discuss. It is so hard to break down those barriers when you are feeling sad and isolated, but you are really not alone. One in seven of the population experiences problems when they are trying to get pregnant and there are 3.5 million people in the UK who are currently trying unsuccessfully to conceive. Next time you feel alone, remember how many of us there are out there – and how much we can help one another.

What do you want from nurses?

The Nursing and Midwifery Council (NMC) is holding a webinar tomorrow (June 28) to discuss how they enable nurses to best support people’s health and wellbeing. The NMC is currently consulting on standards for nurses, and wants to hear from the public about the skills they feel nurses will need in the future.

This webinar is an opportunity to ask questions and share your views on the proposals the NMC is putting forward for the future. Any members of the public are welcome to participate and they are particularly keen to include people who frequently come into contact with nurses (which includes fertility patients!)

You can find out more and register here

Endometriosis seminar in London

If you want to know more about endometriosis and live in or near London, you may be interested in a seminar in London later this week organised by Wellbeing of Women. It costs £30 to attend but having been to one of their seminars recently, they are extremely well-organised and interesting. This seminar will include information on the  latest updates on endometriosis research with medical information and practical dietary advice to help manage symptoms. Speakers include Professor Andrew Horne and nutritional therapist Rebecca Pilkington.

There is more information and you can book tickets here 

 

Final call for male participants – involuntary childlessness research

Some of you may remember that we have been supporting a researcher, Megumi Fieldsend, in her search for participants for her work on involuntary childlessness. Megumi is now putting out a final call for men who might be willing to help her study on  “life without children – lived experience of a man who wanted to be a dad”. She is aiming to carry out her final interviews by the end of July so if you know someone who might be a potential participant, could you ask him if he would be interested in taking part in Megumi’s research project?

There are set criteria for participation, and if you have any questions about the study or want to check about the criteria, please do get in touch with Megumi who will be happy to answer any questions. You can contact her by calling 0778 026 3685 or by emailing her at
megfieldsend@gmail.com

Focus group for research

We’ve just had a request for people who might be interested in taking part in a focus group to talk about their experiences of fertility problems from Dr Shantel Ehrenberg, a Lecturer in Dance and Theatre, who is leading a research study to investigate and increase awareness of women’s often silent emotional and physical experiences of getting a diagnosis of fertility problems.

She is not a clinician, so there will be no medical information and this isn’t a clinical study, but Shantel is interested in understanding women’s experiences of infertility and sharing her findings with medical professionals and the society-at-large. She wants to use your experiences to help to inform a performance lecture as part of this research. A performance lecture is a thirty-minute presentation that includes text, movement, and visual imagery, presented at conferences and workshops, to help raise awareness about women’s experiences of fertility problems.

The current research project is funded by a University of Surrey Pump Priming Award and approved by the University’s Institutional Ethics Committee.  Compensation is offered for taking part (£25).

​The focus group would be about 90 minutes and include a brief introduction of the project.  The meeting will take place in central London. If you want to know more or are interested in taking part you can contact Shantel by email s.ehrenberg@gsa.surrey.ac.uk or phone  01483683137

New online group for people who are pregnant after fertility treatment

At Fertility Network UK, we have set up a new online group for people who are pregnant after fertility treatment.

Whether you’ve just had a positive pregnancy test or are further down the line, you may be interested in joining our new group which will get together online. If you would like to join the group or to find out more about it, please contact kate@fertilitynetworkuk.org

Breaking bad news

Do you think clinic staff get it right when it comes to breaking bad news to fertility patients? And how do you think that could be improved? Are staff too blunt? Or not blunt enough?

I’ve met so many patients who have felt that things weren’t always handled in the best way, and I’d be keen to find out more about where you think things may go wrong – and what you think might work better.

I’d be really interested to know what you think – you can leave a comment below or use the contact form if you would like to send a private response – http://fertilitymatters.org.uk/contact/

Want to know more about long-term fostering?

The patient support charity Fertility Network UK runs regular online groups which you can join via Skype. The next one will take place on Thursday 18th May at 6 pm and the month’s guest speaker is Amel Bouaraba from 24 Seven Fostering. Amel will discuss long-term fostering’. Anyone is welcome to join in – for more information or to find out how to join the call, you can email Hannah – hannah@fertilitynetworkuk.org

The Daisy Network Conference

The Daisy Network, the support group for women with premature ovarian insufficiency, is holding a conference on Saturday 10th June at Chelsea and Westminster Hospital. They have speakers covering a wide range of topics including HRT, fertility, sexual health and nutrition. There will also be an Ask the Experts session and plenty of opportunity to meet other members.

It promises to be an interesting day, and tickets cost £15 for members and £20 for non-members. including lunch and break-time refreshments. You can buy tickets here