Facing up

I recently was asked to write about my thoughts and emotions whilst going through certain points of my process with Endo and while I thought it would be a natural and easy progression I was ill prepared for the feelings I was about to experience.

As usual when writing I sat down with my cup of decaf coffee and tried to collect my thoughts and pick a starting point.
Do I begin at age eleven with my first period? My years of G.P visit's? The first consultation at the hospital or the day I was diagnosed?  Each moment changed me, shaped who I am and each has its own baggage and emotional attachment obviously. It's just never occurred to me until now that maybe I haven't actually dealt with things in the manner I should have. I have just steam rolled through the years accepting each treatment without question, each surgery without any real thought for what I was signing up to. I mean I never stopped and thought if any of it was the best course of action. I just took the professionals word for gold and never thought to question them.

It seems somewhat wreckless now when I look back. When they did take the time to explain the side effects to me I just nodded like a dog and went along with everything. I'm not too sure exactly what I would change given another chance as this would inevitably change the outcome of everything but I would like to think I would approach the situation with a little more care.

Until now I've not really given much thought to the impact my diagnosis had on my mental health. I just accepted it. It's not as if I had a choice. I wasn't shouting about it from the rooftops but there was nothing I could do to change it so the only option was to put my best foot forward and attack this invader as aggressively as I could. Sure I had horrible days which involved me becoming overwhelmed and I remember one time being placed in a maternity ward in hospital and I found this too much too handle given that I'd been told I would most like never conceive. There were nights I lay awake worrying about what lay ahead for me and times where I acted as if none of it bothered me in order to cope and get on with things.

It's a case of survival I think. We react in a way best suited to our own personal survival and whether or not it's right or wrong isn't really for anyone to say unless of course it's having a really negative effect on our lives or we're acting utterly out of character. Then I would suggest well meaning loved ones intervene at your own risk.

I'm becoming increasingly aware that I've gotten off point and I'm doing it again. A kind if deflection if you will. I will discuss Endo, the symptoms and my pain levels with anyone now. But delving into past memories is incredibly difficult for me and right now I'm not even convinced I can access everything I need to in order to complete this task.

For someone who has, in the past, been described as an over achiever, the level of frustration I am currently experiencing at my own expense grows more infuriating by the day. It's as if some part of myself is preventing me from remembering the emotions attached to the memories. I can quite coldly and fairly calculatedly sum up a serious of events and present them in a factual manner much like giving a report. I essentially remove the human element. (Think I've just hit the nail on the head here) Now to face my fears..... To be continued

Keeping positive

Happy Wednesday everyone! I hope you ladies are hanging in there and staying as strong as I know you can be.

Personally, I'm doing ok. I've had some flare up's over the past few days and again the pain is heavily concentrated on my left ovary but my mind is in a really positive place and I have to admit that it really does help to express it rather than hold it in. Whether it's talking out loud, speaking with my Mum or Sis or even writing it down its proved very useful in the past and especially of late to keep me on track.

Living with Endo can be tiring and difficult at times and trust me it's not always been easy to be bright and bubbly about the situation. I've hit my walls and obstacles but with some support and the determination not to quit I've kept going, moving forward because looking back is ok to learn from but it's not a place we should live in.

I take each day now as it comes and try not to think too far into the future. I've come to realise there are limitations to what I can contribute on my life. Endo certainly isn't one of them. I can seek treatments, take care of myself, mind, body and soul and genuinely keep a positive mindframe. Whether my disease advances or lays dormant isn't something I can control so I'll do what I can, when I can and right now that's working for me.

The days when I'm in pain are annoying, tiring and sometimes quite upsetting but it's only temporary. For me the intensity does pass and while there's day pain you become accustomed to it. We truly have no understanding of what our bodies are capable of tolerating until it has to.

It's not an ideal way of life "living in constant pain" but who's to say what's ideal or not? As long as I can cope I will keep going and having positive people in my life works for me.

Love to my Endo Sister's
XxxxxxX

Midweek rant

Feeling somewhat frustrated on Tuesday afternoon trying to make my way through a very busy City Centre in hail, rain and shine (this is Spring in Ireland lads) I felt the familiar twins of a cyst twisting on my ovary, pinching me, building pressure and taking my very breath away. I can be as stubborn as a mule at times so I won't given and sit down when I feel that pain although this could also be due to the fact that I would consider myself to have a lot of inner strength (I'm the year of the Ox, might have something to do with it?). I did however pull my snood up over my nose, take some deep calming breaths and did my best not to publicly break down crying. Would have been mildly embarrassing. This was the first incident the boyfriend has actually witnessed and to give him the credit he's due he didn't freak or overly fuss. It can be incredibly difficult for people to get that balance just right but I think he managed it ok. I got through the initial waves a pain and spasms and it wasn't until later that evening that the cyst finally burst. I am prone to fluid-filled cysts and have been to A&E a few times because of them.
(If you have any signs of symptoms of cysts you should present to your Doctor of Hospital)
I get these quite regularly and some are worse than others but it's amazing how much pain we can actually handle. So, when I stumbled upon this graphic during the week I found it incredibly apt and I just thought it sums up alot of the time how women say to me they feel.

We'd love to say "up yours" to Endo, to our uterus, to our tubes, ovaries, wombs, colons, appendices and any other part that aches and gives us terribly unbearable pain. This should be put on a t-shirt. It's eye-catching enough to get people talking anyway.

On Monday I began taking Cyklokapron. It's something I do not like to rely on or have to use but it's time as I've been suffering with menorrhagia again. That and Primolut have become the only two "solutions" for me. According to my Specialist they need to be as conservative as possible with their approach. They must try to preserve my fertility and apparently there are only so many times they can "rotate" the ovaries.

Everytime I attend the hospital I see a different member of the team with a different viewpoint, a trying to make a name for themselves. When you're eighteen they want to operate and pump you full of drugs and hormones and damn the long term effects but ten years later when your chart is one of the biggest the have, when nothing's worked for you, when even the specialist has said "I dont know what to do with you" you feel like you have become a nuisance to them. You're now that black mark on their record.

Should it be this way? Of course not! But how does one person make that change?
By saying;

Stay strong my Sister's. Love you ladies XxxxX 

Possibly the best advocate

Over my time campaigning for awareness I have come across one name time and time again. If you have just been diagnosed, are still learning about Endometriosis or just want to know more I think Nancy Peterson is among one of the many brilliant advocates we have for Endo. You can find info here;

http://endometriosis.org/news/support-awareness/recognising-endometriosis-advocates-nancy-petersen/