We are Here.

Since being diagnosed with Endometriosis I have been trying to get my head around the impact the illness has on my body, on my life and the people in my life.

During a particularly successful brainstorming session between my husband and I, it became apparent that because of the lack of knowledge and awareness surrounding Endometriosis, diagnosis proves difficult to obtain. Women struggle with chronic pain for years and years with no idea of the cause, insufficient pain management treatments and a deep sense of despair.

I am going to try and help. I have decided to use my experience and diagnosis of Endometriosis for something positive. I’m starting out small with the hope that it grows into something magnificent. And hopefully, this will prove to be quite therapeutic for me too!

INTRODUCING… 

Bassetlaw Endometriosis Awareness & Support Team

Bassetlaw Endometriosis Awareness & Support Team (B.E.A.S.T) has been set up to offer women and their families a place to come together for support, it’s a virtual shoulder to cry on, listening ear and an online hug. The internet makes it possible for us all to reach out in a way that hasn’t been possible before. One of the biggest difficulties with Endometriosis is that it is incredibly lonely sometimes, especially before diagnosis.

People in the Bassetlaw area can seek information, support and can find out about events that I plan to host as we raise awareness (Events like coffee mornings, charity walks etc).

I have put together brochures explaining the illness from the point of view of someone who actually suffers with it. We have our own logo. We even have a twitter page.

So if you know anyone that has Endometriosis, or even shows some of the symptoms – please refer them to this Team.
I have said team, as every woman/supporter involved is a member and has something to offer someone else; understanding, experience, support. Every woman’s experience of Endometriosis is different and we can all learn from that.

Email us: bassetlaw-endo@outlook.com
Please visit our Facebook page: http://www.facebook.com/BEAST.Bassetlaw
Follow us on Twitter: @BassetlawEndo 

A xo

https://www.youtube.com/watch?v=i41qWJ6QjPI

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Endo-what?

“You don’t look sick!”

“It can’t be that bad surely,”

“It’s just woman problems.”

“Have you tried Paracetamol?”

“I know what you mean..”

Well in my world, if you’re not me, you can’t possibly know what I mean at all. For 6 months I have suffered with an agonising pain that appeared like clockwork every month. Tell me, do you know how hard it is to try to be optimistic when you know to expect the worst? As I said, probably not.

Opening your eyes in a morning with a pain so severe you can’t even sit up. You can’t even walk, having to crawl into the bathroom to throw up, having to lie there on the cold tiled floor whilst the bath fills slowly with scolding hot water. Having your abdomen covered, front and back, with heat-pads just to try and find some relief.
And worse, having to contact your employer and tell them you can’t go into work today as you’ve got really bad pains, “period pain”, trying to make them understand just how bad it is. Willing them to understand, thanking god when they do because you know there’s no way you could possibly make it into work without fainting and vomiting. Calling your boyfriend before he finishes work to make an emergency stop at the all night chemist for Tampax because you’ve almost used a full box in a day or so. Losing clots of blood the size of 50p coins, feeling so exhausted you think you might never move again. Asking your partner to carry you, put you to bed, rub your back, listen to you cry and scream in pain; then watching the hopeless, helpless look on his face as he tries to look after you the very best he can.

It’s funny really, I can’t actually explain to you what the pain feels like. When I try and think back to how it’s been the month before, it’s like I’ve blocked it out. All I can say is, when I think about having to go through that pain again this month, I feel a gut-wrenching fear that brings me to the edge of tears. I cannot do it again. And yet, it comes and I do and a month later I find myself back in the same situation.

Endometriosis. For those of you who aren’t aware of what it is (and there are a few, I was one!) It’s an illness where endometrial tissue is found outside of the womb. It causes excruciating pain, infertility, chronic fatigue, and in some cases; financial problems and relationship breakdown.
There is no cure. It’s average diagnosis time is 7 years; from first appearance of symptoms to diagnosis. That is not good. Understatement. Women are struggling all over the world, visiting their GP, being rushed to hospital, being admitted to hospital, trying to get help. To be in pain is the worst feeling in the world, worsened by the fact that you feel alone and unable to get help.

I have had 3 hospital admissions since August 2014 and several out of hours doctors appointments. I have struggled since February 2014 when my gynaecologist decided it was unlikely I had endometriosis and decided not to send me for the diagnostic laparoscopy. This man I met again on my 3rd hospital admission, he waltzed on to the ward and I felt an impending sense of despair. He had no idea who I was, or that he’d seen me before, he then told me he was sending for (another) scan and that the pain could be due to a water infection or I could be constipated or appendicitis – all that I’d heard before. The frustration I felt at the moment was strong enough that it could have lifted me off of the bed. He informed me after checking the scan that he would just help manage the pain as I was booked in for surgery in January 2015.

A week after I was discharged, 20th December, I married the love of my life. I only just made it down the aisle.

I mentally prepared myself for surgery, thinking positive despite several doctors telling me not to pin my hopes on the operation as they might not be able to find a cause of the pain. That in itself is a frightening thing. If they can’t find anything, I’ll just be left to deal with this every month by myself. Surely I wouldn’t have all this pain for no reason? But doctors assured me this could be possible; “some women just suffer more harshly than others with period pains.”

So I went under. I can’t tell you how long I was in surgery for, it felt like I’d only blinked. But the moment I opened my eyes, I was in agony. The nurse pumped me full of Morphine and Tramadol as I tried to listen to my consultant explain he had found severe endometriosis. That my ovaries had been fused to my pelvis. That if I wanted children, to have them sooner rather than later as my fertility would only decrease as I get older (but hey! there’s always IVF), and that an hysterectomy would be the final decision but was hopefully years and years away.
I can tell you, the relief that he’d found something, found an answer when I’d had none for months, I’ll admit I cried. And I have cried a lot since my surgery over 2 weeks ago. I’m still sore and I’m still learning what I can do to help myself and what options are.
But the first thing I realised, it’s not all hopeless. There are success stories. There are alot of women I have come to know that are surviving with endometriosis; brave, strong women. Most have been surviving a lot longer than I have, years they have endured such agony. All smiling on the outside, while suffering awful pain on the inside. I salute you ladies! You inspire me to look to the future with a positivity I didn’t have before Christmas, pre-op.

I debated whether or not to write this entry. Thinking it might be too much, it might not apply to everyone, maybe it does, maybe it doesn’t, but this is how endometriosis has affected me and my life. I hope whoever reads this has had a better time, or that this can help you understand and appreciate what I’ve been through.

My name is Aimée, I’m 24, married and I’m surviving with chronic endometriosis. There I said it.

xo

Deep breath! aaaand let’s smile. These have made me smile:

George Michael – Faith —    https://www.youtube.com/watch?v=29GWMT0GB6s
Olly Murs Ft Demi Lovato – Up —      https://www.youtube.com/watch?v=6Cs3Pvmmv0E
Jimmy Fallon’s lip sync battle with Will Ferrell & Kevin Hart —
Bruno Mars & Mark Ronson – Uptown Funk —   https://www.youtube.com/watch?v=OPf0YbXqDm0
Ed Sheeran – Thinking out Loud —     https://www.youtube.com/watch?v=lp-EO5I60KA