Kirsty's Story

For me being diagnosed was a pretty fast process, although I did the research and had to put forward the suggestion that my symptoms showed it could be endometriosis. I feel I was quite lucky as I had quite a patient doctor who listened and helped me get diagnosed quickly. However, I know this isn't the case with many other women suffering with endometriosis.

So far, I have been treated with prostap for 6 months and had two minor surgeries. I am now waiting for an extensive bowel, urethra, womb and surrounding areas surgery to remove the endometriosis which will happen in summer.

Because I am quite a young person with endometriosis, the impact has been major.

I am very lucky to have already met my partner because my life would have been much different.

We struggle to do usual things which other couples do, we can’t have sex often because I'm in too much agony to do so or I've either been on a period for months on end. We don't go very far and have to make sure there is a hospital close by if we do just in case.

We live on the 'just in case rule'.

But through all this and at our age he is still the most supportive person I know and have in my life. 

I am currently at university studying biomedical science and my disease motivates me. I eventually want to go into research into endometriosis and work for a cure! But for now making it into lectures is a massive achievement in itself. 

I manage in different ways, sometimes just simple breathing techniques do the trick, others need a bit more.

Then I try to focus my attention on something like painting which is a very relaxing pass time for me, but on the bad days a trip to the hospital is needed for morphine but that's normally last resort.

I'm currently learning that if I can try and take a few days without any kind of painkiller the days in which I really need some become easier as I only need a low dose of the medication to ease the pain. 

Michelle's Story

HOW LONG HAVE YOU BEEN VOLUNTEERING FOR ENDOMETRIOSIS UK?

I started volunteering after I was diagnosed in 2007, so that’s about 8 years. I started by setting up a support group and then when I found EUK I quickly joined and made sure we were reading off the same song sheet! I've been up and down with how active the group has been, mostly because my health has been, but these last few years I've been determined to keep regular meetings and online support and fundraising.

WHY DID YOU WANT TO ORGANISE THE BALL?

I have dreamt of doing it for years, ever since I saw that America did something like a Grand Ball. I thought it was wonderful to bring everyone under the same roof: sufferers, families, care givers, therapists, GPs & Consultants and the Charity so we can see each other, celebrate each other and learn from each other. And have an amazing celebration of the battle women face and the defiance and fortitude they show. And have glitter and shiny things.

WHAT WAS THE MOST CHALLENGING PART? HAVE YOU FACED ANY CHALLENGES WHILE ORGANISING THE EVENT?

Getting tickets sold was the most concerning part, I didn’t doubt for one moment that we would sell out BUT because we started selling our tickets just before Christmas it meant people were not in the best financial position to buy them ... so we have learnt from this.

Also we found 'controlling' seating, or seating management will need better planning as we let a couple down who could not sit together. Not bad that 2 people really but still it was something we can address.

HAVE YOU GOT ANYTHING UNEXPECTED OUT OF THE EXPERIENCE?

I think it was a genuine surprise to see so many people have such an amazing time and I didn’t expect to hear both Consultants who came say that they had learnt something new... In fact, many people said they learnt about their partners and about the real effect of endo. The face of endo. So that was unexpected; as even those close to the disease still have limited knowledge (we did a quiz about myths and it was shocking to see the results!).

WHAT YOU GAINED FOR YOURSELF FROM THAT EXPERIENCE?

I am just so very thrilled, personally, to see an idea grow from a dream into a glorious reality. I fight my own illness every single day, pain and fatigue are a constant companion, and holding an event like this gave me an overwhelming sense of victory... that despite feeling like I do I can still gracefully challenge my disease/health and pull-off what was an amazing evening (before falling asleep). I also gained friendship as I didn't do this alone, empowering others to help is important as it lessens the burden but also lets others share the experience too.

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