Endometriosis part - 2

This is a part 2 of Endometriosis blog and is particular story of one person who lives with endometriosis and runs a amazing Endo Ball charity event to raise awareness.
We will be sharing Tanya Barad's story and how she manages her endometriosis.
She runs can annual Endo Ball event in Birmingham to raise awareness around Endometriosis. So far she has raised nearly £9000 through her event that goes to Endometriosis UK. In this blog we have asked her to share her personal story with us.

In few words, What is to live with endometriosis?

Endometriosis takes over your whole life. Your physical and mental health. Your work. Relationships, friend, family. It makes life feel terrible and pointless now and it takes any hope you have away from the future. I'v always said I can live with short term pain if I know it is going away; with endometriosis often I didn't think the pain would ever go away.
 
I have now found a treatment that works well for me so life is a lot better, but it always sits with me that I will always be ill. I may never have children and even if I do, I will have to go through so much pain to get there. It's really exhausting sometimes.
The treatment I am on is the combined pill back to back. This means I take it every day without having a break so I don't have periods anymore. The last period I had was around a year or two ago and it was horrible. The pain was terrible from my belly button to my toes, to the point where I struggle to breath. My back goes, the pelvic pain is excruciating and it affects my moods. Also, I was really surprised how much I had forgot about handling periods in public! I kept getting paranoid and going to the bathroom every 30 mins to check. When I needed to se a pad, I realised I was in a work dress with no pockets. How do you get the brightly coloured pad out of the open office!? It gave me so much confusion.
The pill does massively help but I do still get flare ups. For me, warmth helps so I use an electric blanket or a heat pad, switching between my pelvis and my back. I have taken too many ibuprofen over the years trying to handle the pain so I am allergic to the now and use tramadol for pain relief. Generally though it is just get over it and cope with the pain, there isn't much more of a choice. I curl into a ball and wait it out.

Why did you start Endo Ball?

I had done a bit of charity work as a teenager but when I was diagnosed with endometriosis, I feel into a massive depression. In the years before facebook, the forums on Endometriosis UK became a life saver for me and it gave me a passion to support them. I started off with a 5k run which was great but I realised as my symptoms got worse and I have more surgery that this wasn't something I could do long term. So I planned a ceiligh, then a ball. I find that running the balls massively helps with my depression; it gives me something positive to focus on and something hope for the future that I wouldn't have without. Every time my endo flares you, you will see a peak in my fundraising and that is because I need the fundraising as much as the charity and sufferers do, so eg in 2010, 2012 and 2015 after my surgeries I had 2 weeks with each where I would set up the events and do the bulk of the work. As endometriosis doesn't have much awareness, it can be very isolating but as I contact literally 1000s of people for donations each year, it mentally helps me to know that each year a few 1000 people will now know about the disease because I have told them about it.

Over the years I have seen this improving; I used to call and ask for a donation and no one would know what endometriosis was. Nowadays I ring up and more people than not will know what endometriosis uk.

Last year, I had some guests came and tell me not just how much fun they were having (which is important) but how important the entwas to them. One husband gave me the most heartful thank you I have ever heard; his wife had just been diagnosed and they didn't know what endo was or who t urn to. From the event they had info and a community to support them and he told me how much it meant. That moment has stuck with me and gives me goosebumps everytime I think of it; it's the best feeling in the world to have truly helped someone at that level.

Does polycystic ovary syndrome (PCOS) affect conception?

The event is on the 25th May at the Birmingham Airport Holiday Inn.
This charity ball is a 3 course meal with entertainment in support of Endometriosis UK. The dinner will be followed by live music from "The Works" and includes a raffle and silent auction, including great prizes like yacht rides, artwork, signed memorabilia and gift experiences. We also have amazing gift bags filled with items that loads of companies have been so generous to donate. Overall, we have loads planned for the event and, like last year, it will be a night to remember! Last year and the year before we cumulative we raised nearly £9000 but this year we hope to raise so much more.
 
If you want to get involved in the event, go to www.endoball.co.uk to see what we do and to buy tickets at £40pp. Or you can contact endo_ball@hotmail.com if you have a specific way to get involved in the event.

 

Read more real life stories of people living with endometriosis here:


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