Summer Endometriosis New Zealand Newsletter 2018

Kia ora and welcome
Everyone Belongs

We are pleased to bring you our latest newsletter in time for some holiday reading.  There have been several ‘hot topics’ during 2018. One which was of high interest to our followers and also presented at conferences here and around the world, was coping with endometriosis and relationships, particularly with intimacy and sex. We’ll bring you some expert opinions and our end of year update.

 

We hope you enjoy this issue and have a safe and happy holiday.

xo ENZ Team

 

Fundraiser

We love hearing ways in which New Zealanders raise awareness and funds for endometriosis.

We would like to especially acknowledge Harriet Boyce. Harriet ran the 12km Auckland Traverse and raised a whopping $1045.00, to support ENZ education programmes.

 

“I am running not only for myself but for my friends and all those who suffer from endometriosis in the hope we can not only find a cause but further educate people that this is a real disease that causes so many issues for women all over the country.”

 

Congrats Harriet and well-done on all your hard work! https://givealittle.co.nz/search?q=harriet+runs+for+endo

If you would like to make a donation to Endometriosis New Zealand or get involved in raising awareness visit nzendo.org.nz/donations/endometriosis-new-zealand-donation/ for more information.

 

Ask an Expert – ESIG:

Endometriosis Special Interest Group

ESIG offers expertise in the treatment and management of endometriosis. You’ll find files on so many topics which answer your questions. For example:

·            Endometriosis and Exercise

·            Psychological tools for managing pelvic pain

·            Mirena or Jaydess?

How about taking time these holidays to check out stuff you want to know: https://nzendo.org.nz/esig-ask-an-expert/. If you would like to ask ESIG a question, let us know via PM or email.

 

A recent Ask ESIG question was:      

“I would like to approach my partner about the pain that I sometimes experience when having sex due to my endo. I’ve already discussed this with my doctor but how do you suggest I approach the subject with my partner so that he understands?”

Hannah’s Blakely, a clinical psychologist with extensive experience in the psychology of women’s health, answered this question.

 

That’s a really important question.

Endometriosis may affect couples not just the individual in a relationship – particularly in the context of intimacy and sex.

 

Some things to cope with this and consider are:

 

Communication and education are key; sometimes the person with endometriosis is the only one given information about pain associated with the condition and how this develops from disease progression or after some surgeries. When this occurs it can be painful during sex. Having a discussion with your partner about how endometriosis may ‘behave’ can be useful to reduce personalising the pain experience from,  for example: ‘when we have sex you make me sore’… to … ‘sometimes when we have sex it hurts because of endometriosis’. Following examination and advice from your doctor, letting your partner know sex is not causing physical damage can be important as your partner may fear hurting you which can cause conflict and does little for desire and arousal.

 

Sometimes when our brain recognises repeated pain signals associated with fear and anxiety, outside of physical harm, it can continue to interpret future sexual interactions as dangerous thus increasing the intensity of the pain experienced. That means for some women when sex is painful due to endometriosis this is recorded by their brain. The next time painful sex occurs the brain remembers this and sends pain signals that are more intense. For these women the response to reduce and avoid pain is to avoid sex which can have an impact on their relationship. When sex is painful either partner may experience emotions such as anxiety, guilt, frustration and sadness.

 

Recognising these behaviours and emotional responses is important. Validating your partner by letting them know it’s difficult sometimes and is about endometriosis and not personalised to them can be useful to keep the channels of connectedness and communication open.

 

Psychological treatment can help with endometriosis education, pain management, anxiety and relationship communication together with medical specialists managing aspects through a multidisciplinary approach.

Endometriosis New Zealand - ESIG - Experts in the industry
Hannah Blakely:
Christchurch

BA (Hons), MSc, PGDipClinPsych

 

The me™ programme

 

After a very exciting and successful year, the me™ (menstrual health and endometriosis) programme has now wrapped up for 2019. We reached 12,900 students throughout New Zealand.

 

We love educating students about menstrual health and endometriosis and equipping them with knowledge, empowerment and skills to seek help for symptoms which are not normal. Once again our presentations received wonderful feedback from students and teachers alike:

 

“I identify as a transgender, intersex, asexual, woman. Thank you very much.”

 

“Being a guy this was certainly interesting and pretty neat”

 

“…This was by far the most professional and highly informative presentation I have viewed…”

 

Our aim is to roll the me™ programme out nationally. We need your support to achieve this.  If you know of a business who may be interested or an individual who would like to get behind the me™ programme, please let us know… every donation makes a difference.

 

Thank you to the stars who made the me™ programme in 2018 possible; Fulton Hogan, Rata Foundation, Mainland Foundation, Royston Hospital Trust Board, U-By-Kotex and Roncalli College.

 

If you would like your local school to have the me™ programme please let the school know and ask them to email us: info@nzendo.org.nz.

 

ENZ Update

 

Deborah was invited to attend and speak at the European Endometriosis Congress EEC, 2018, in Vienna.  She kept us updated with information, research and presentations on treatment.  To follow the 15 updates, please visit the ENZ Facebook page https://www.facebook.com/nzendo/. There are a host of things there which we’re sure will be of interest to you.  It was great to see other countries, clinicians and researchers recognising our work, particularly in relation to educating young people about endometriosis.

 

We have so many exciting things to announce early next year, we’re just about bursting!  We can’t wait to let you know.

  

 

Up and Coming ENZ Topics

●      January – Endometriosis and Hormonal Pills

 

●      February – Endometriosis and Education

 

●      March – March Awareness Month

 

We acknowledge all of our wonderful sponsors.

 

Strength through support - mā te tautoko, ka whai kaha, ka ora

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