Endometriosis Awareness Week 3rd-9th March 2014: It's ok to talk. Period.

[JaneHJ_CEO]

Hi everyone

Some of you may already be aware that this week is Endometriosis Awareness Week in the UK. This year we've chosen the campaign slogan: It's ok to talk. Period, trying to encourage more people to talk about periods. We'd like to open the conversation to help break down the taboos and identify what is 'normal' or not. We also hope to encourage women - particularly young women - to seek help earlier and reduce the diagnosis times. Our website - endometriosis-uk.org - has more details and a list of the activities taking place.

Everyone on this forum has contributed to this campaign - by talking and sharing, helping and supporting each other, and by completing the polls we put up. You told us that average diagnosis times are still around 7 years, and that over 50% of you experienced symptoms in your teens. So thank you for your input. If you can also join the facebook group (facebook.com/endometriosis.... and share any posts, or follow us on twitter (@EndometriosisUK) and re-tweet our messages that could really help widen the conversation.

We have managed to get this campaign up even though we had no budget so we'd like to thank Kaye Sedgwick for the visuals and our office and support volunteers for their time in hosting activities or sending out materials and press releases. We'd love to do more but lack of money and resources make this difficult. If you are able to support the charity with a donation, do some fundraising or join as a member that can make a world of difference.

With warmest wishes

Helen

[Hidden]

Well, the lack of budget and donations to this charity says it all really; lack of budget reflects the wider issue of lack of interest in this disease, and it's this we need to change.

I believe your charity can change this and increase knowledge, but money is always needed, for any cause and endometriosis is no different.

I will put my money where my mouth is and will get my fiancé to make his company charitable donations to Endometriosis UK. I had not realised budget was so tight, so can only apologise for not donating beforehand.

I contacted BBC Radio 4 Woman's Hour last year about endometriosis and the researcher replied very quickly to me, and was very keen to discuss my story. However, I then became too ill to follow it up, due to the endometriosis. I will contact them again. Will let you know what response I get.

[JaneHJ_CEO]

Hi YellowRose. Thanks for your words of support and in advance for the financial help - very much appreciated. We're always trying to balance giving info and support to women when they need it and then asking for money to keep it going, but without the donations we can't continue. I hope Woman's Hour may pick this up this year - we're trying as well!

Helen

[missemmabenson]

The smallest things can help!

I work in a small office with the majority of individuals being female. I wrote a short message and linked the 'It's ok to talk period' page. Short and sweet without embarrassing myself.

Out of the ten women I emailed, I've already had one response from an individual relating to the associated symptoms of endo.

Even if you can help one woman to not have debilitating pain, then it's more than worth it.

Thank you Endometriosis UK for all your amazing resources online! xxx

[Hidden]

Hi Helen, you are very welcome. If it helps, Sarah Crawley was my contact at Woman's Hour. If you email me, I can send you the original email I sent, I still have it. I was personally shocked that Woman's Hour have not covered this topic since 2006! Again, speaks volumes of the significance, or should I say, insignificance, at which this disease is considered.

Re the donation, I will talk with my fiancé tonight to get it done.

Any other ladies or families with their own businesses out there, I'd suggest we do the same - if possible - it actually makes financial sense (Bill Gates is indeed a philanthropist but his charitable donations also help Microsoft!). Let's help bring endometriosis under the spotlight.

Thanks Endo UK!