The mental health battle Part 1

One thing that I wasn't prepared for was the overwhelming emotional pain that the diagnosis brought. It would have been approximately eight months after my diagnosis and going into my second round of Decapeptyl injections when I hit my wall. I felt my world crash around me. It was as if the world around me had slowed down but I was the only one who knew.

It was a delayed reaction to the diagnosis definitely. I had just turned eighteen when I was diagnosed with severe Endometriosis through a laparoscopy. I also had laser surgery but the Endo was too extensive and too close to other healthy tissue that the surgeons decided to take a conservative approach taking into account my age. The original reason I was have the lap performed was due to the fact that there appeared to be a cyst on my right ovary that had doubled in size within eight weeks. The "cyst" turned out to be Endometrial tissue. Once they put the scope in it became quite clear why I had been in so much pain for so long.

The rest of that story is for another time. I digress. Getting back to my point. I hit my emotional wall hard. I felt like I was losing control of my body. I was nineteen and having hot flashes, mood swings and basically going through a menopausal state thanks to the GnRh analogue that I had been put on. I tried add-back therapy in the form of Livial medication but this just didn't work for me.

I lost a lot of self-confidence due to the hot flashes. I would have to run out to buy extra tops on my lunch breaks at work because my tops would feel so uncomfortable after the flashes. You feel like everyone can tell there's something going on with you, like you have a flashing neon sign above your head.
I then started suffering chronically with insomnia and I stopped eating correctly. I locked myself away from friends and to an extent my family. I knew they were concerned and I did talk to them. But I was always too aware that when I was in pain they suffered along with me because there was nothing they could do for me so I did do my best to stay strong for as long as I could.

Don't get me wrong it's not all doom and gloom. Having Endo isn't a death sentence but it is a tough invisible illness that women go through and more and more women are suffering from it and don't even realise it.

But no one tells you about the depression. Well no one told me to expect it. I thought I was losing my mind. I am generally an upbeat, positive person but all of a sudden I felt trapped inside my own head under this dark cloud that I couldn't seem to climb out from underneath. Everything became bleak in my world. I had to cancel plans with friends and family due to the severe pain I was in, that was nothing knew. But now coupled with the side effects from the medications and then the surgical procedures, healing times, people who are important to you or who you feel are important to you start pulling away because they cant handle being around you on bad days, when your having flare ups.

It makes you feel worthless, helpless, weak. In short, a failure. You feel like some part of your position as a woman has been taken away. That you've somehow done something to cause this. Logic goes out the window and these thoughts fester and feed that cloud and before you know it you are in a bad way with your mental health.


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A Marching here we go

As many of you already know March is Endometriosis Awareness month. However, this year there is also a globally organised March for Endo happening on the 13th of March. You can find out information here;

http://www.millionwomanmarch2014.org/

I will be wearing yellow for my Mum, my Godmother and myself. I'm aiming to wear at least one item of yellow for each day of March in support of Endo awareness. My Mum, Sister and some friends will be Marching for Endo on the 13th also.

1 in 10 women have it.  6 million Women and girls in the United States and 89 million worldwide

The Irish site for the march is http://www.marchforendometriosis.com/
They are organising the walk to coincide with the event in Washington D.C so bookmark the page and keep an eye out. Also check them out of Facebook for more information and of course we will keep you up to date here.

Pushing people away? We should be pulling them closer.

So for the past six weeks I have not stopped bleeding. I went through Primolut N, Cerazette, Cyklokapron and then Primolut N again.
I feel a little in the dark here as I don't know what's going to work for me.

My G.P informs me that if it doesn't stop I must present to casualty. I am severely anemic despite taking Iron supplements and eating Iron rich food, so tired, irritable, having leg cramps and unreal pain in my abdomen especially my left side where the OBGYN found a cyst at the start of the year but my next scan is not until July. I already had a cyst on my ovary rupture approximately eight weeks ago. But once the pain subsided I felt OK. I did not attend A&E this time as these cysts pop quite regularly and by the time I get to Emergency there is very little they can do and all they see on the Ultrasound is the membrane from the cyst.

I have found that throughout my battle with Endo that no matter how difficult things get, we must push through. It's not the easiest thing to do at all and sometimes you literally want to curl up until the pain goes away as, well for me anyway, there's no pain relief to be found when I am having a bad Endo day.

That day is today and despite wanting to be around people and have a cuddle from someone I'm also very hormonal and irritable. I can't make up my mind whether I want company or to be alone so I'm not asked every half hour how I'm doing or people telling me "you don't look well, you're in pain aren't you?" I know they are concerned and trying to help but I find it hard to actually let people help me with my Endo.

Sometimes I feel it's something I have to fight on my own and essentially it is. But I can be quite dismissive when my family and other half are trying to help me, soother me and comfort me. I can get quite annoyed. It's not even that they would claim to understand what I'm feeling (although my Mum would have an idea having had Endo herself) it's just that they feel helpless, I feel helpless and this situation does not help anyone.

I'm sure many Women have gone or are going through similar situations. It's all about finding that inner strength to let people in and realize that although we may be battling this and the pain and discomfort is happening to us does not mean that we don't all need a bit of support does it?

We need to let those that genuinely want to help into our lives and stop thinking it's something we can control, fight/ease on our own.

As always my Sisters stay strong, feel free to comment and share how you are supported through this fight.

Coping with Endometriosis Part 2

Sick of hearing this? "But you don't LOOK sick" Well,

Endo is known as a "invisible disease". Fair enough the tissue itself cannot be seen sitting on your face or outside your body. Could you imagine? If people saw what we know to be growing inside us? Would it make them understand more or would it just mean that they realize there is actually something wrong with us. We are not underestimating this disease ourselves but many other's find it hard to deal with something they can't see.

Say for instance you break a leg (hopefully not) people would see that cast, your crutches, the length of time it takes to heal. They want to help you as much as they can because they realize that you are struggling whilst the bone is healing. Right? You can apply this to most anything someone else is likely to have gone through with someone or even themselves.

I, by the way am in no way comparing having Endo to a broken leg. It's just meant to be used in the way that I believe if you have a condition/illness/disease whatever you will that can be physical viewed by others then they I suppose sympathize more and you don't really have to go into too much detail about how something is affecting you. They understand if you are having an "off day" because they are thinking "Oh she's going/gone through a lot so I'll giver her some space/ try to comfort her" whatever the case may be.

If we had Endo growths actually growing on the outside, like over our pelvic area, around the bowels, kidney's wherever you have it do you not think people may automatically react with a bit more comfort towards you. It's that old saying "if you can't see it, it's not there".

I do not mean to rant today guys, it's just something I was talking about with my Mum a while ago and came back into my head. She suffered herself up until age 32 when she had a partial hysterectomy (left with one ovary). But she still has pain from time to time from that ovary so it was not a complete "cure" for her.

So, finally says you I get to the point.

How do I "COPE" with Endometriosis?

First off there is not right or wrong way to "cope". You will find it difficult at first, especially when you've just been diagnosed. You're thinking, oh but they said it was a cyst, or they told me there was nothing wrong with me (again depending on your own experiences here) but suddenly you find yourself with a diagnosis and if you don't already know what Endo is it get's explained to you or you do research and find out more about this disease and trust me there are a lot of scary words when you first start to research like infertility, hysterectomy, perforated uterus, surgery, hormone therapy. 

This can be very overwhelming and you must be careful that you don't overlook your Mental Health whilst going through this difficult time. This disease is physical, it affects us physically, with pain but it also affects us emotionally. The hormones do not help in this. But if you are finding it all too much to take in and feel like you can't cope with your diagnosis, seek out your Medical Professional who should be able to put you in touch with support groups. 

Support?

There are many, many support groups online if you prefer talking to another patient anonymously. You can find a link to your right for "Online support for family and patients".

Your family need to know! I know that you may want to pull away because you are afraid of putting too much stress on them, but they are family. Think if it was them wouldn't you want them to confide in you?

There is no perfect way to "cope" with Endo or the pain. There are suggestions on how to deal with pain, outside what your Doctor's have prescribed such as TCM (Traditional Chinese Medicine, in particular Acupuncture), Herbal Medicine, Homeopathic Medicine, Naturopathy. 

It is up to you whether you choose to try something outside your treatments prescribed to you. But if you are intending on approaching this from a different angle I would encourage you to speak to your Doctor first. You may find they are a lot more open to "Natural" methods than you would think. 

Endo is like being on a never-ending roller coaster. You are up and down, thrown around, jerked about and never now when it's going to end so having good support is a must. Whether you find that in your family, friends, partner, husband/wife, online or through a regular group meeting, it's definitely one of my top three things I need to get through my battle with Endo. 

Getting people to understand what you're going through can be hard and not everyone will. But if you can maintain a positive attitude (don't all roar at once, I know this is completely impossible at times) if will help your mental health which is just as important as your physical health. 

If any one else has tips on how they cope with Endo we would love to hear from you. We are also looking for "Guest Writer's" if you are interested let us know. 

Just leave a comment below or if you have a longer piece/ or want to remain anonymous 

please e-mail endtoendo@gmail.com or belladonnaheather@gmail.com

Stay strong my Endo Sister's.