The new life

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Hi! I’m living my country life, I’m in my scary job, and I have a new endometriosis consultant. She seems amazing! I felt someone finally understood. I’ve had my first prostap injection, which has caused pain and bleeding, but I’m hopeful things will improve with the next injection, and she has promised me a hysterectomy in 6 months if the prostap works! 

This may seem drastic, but I’ve been wanting it so long, and kept being told I was too young, and too childless. This  consultant seems to understand that we can’t have kids so it’s not an issue! Fingers crossed that their is light at the end of the Endo tunnel! 

We also got a dog! Yup, a big old baby substitute! You don’t need a degree in psychology to work that one out! He’s amazing! A rescue staffy. He’s needy and has to be cuddled all the time, just like me. He’s shown me that actually, I don’t think I could be a parent. I’m selfish and impatient. If I don’t want cuddles I can go to another room, I couldn’t do that with a baby! 

I walk him in the evening after work. I’ve never been one for exercise, but I’ve found that the walk clears my head from work, and can actually help with pain. I don’t look forward to it, but I enjoy it and I feel good after it. Damn you health freaks for proving me wrong! Apparently chocolate and cider are not the cure I was hoping for! 

In general, I think the move was a good thing. A slower pace of life. Work is incredibly stressful, but at the end of the day there is peace, and love from hubby and doggle. Sometimes I miss having a crazy social life, and I miss having shops close by. But then I listen to the birds, walk in the fields, and know that peace was the right choice. 

Endometriosis returns.

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So, the old Endometriosis is back to kick my butt! I’ve been pretty much pain free, with the odd twinge, since about August. This makes sense, my consultant said because of the extent of the disease that was excised during my op last January, it would take around 8 months to recover and feel the benefits. I haven’t been well as such, the fatigue is horrendous, but at least the pain did subside.
So I have had 6 months from an op that took 8 months to recover from! That was worth it then!
Anyway, the joyous endo has chosen now to rear it’s ugly head. I’m moving house and starting a scary new job. This is meant to be our new start, a healthy life in the country away from the memories and sadness of infertilty.
It’s meant to be me throwing myself at a new challenge work wise, and also starting to exercise and eat healthily, but it appears the new start will begin with painkillers, hot water bottles and rest. I’ll try to achieve at my new job, but I’ll be exhausted and distracted by the pain. I’ll try to exercise, but all I’ll want to do is sleep.
If I wasn’t moving, I’d contact my endo nurse at the specialist hospital, she’d get me in to the consultant, and I’d probably be looking at more surgery before xmas. Because of the move, I have no idea what’s going to happen, I guess I see my new GP and ask for a referral to the nearest centre of excellence. Maybe they have a miracle for me? With the new job I can’t afford to go off for an op for at least a year. I hope they can do something.
All this got me thinking about what I would say to someone who was newly diagnosed, who was scared and in pain. All I came up with was “get used to it”. Not very positive, but realistic. You do get used to the pain, to being exhausted, to being scared of the future. You get used to being disappointed and frustrated with the healthcare system that doesn’t understand or seem to care. You get used to feeling like a burden on your support network. You get used to smiling and pretending you’re fine, when really, you feel like your uterus is going to just pop out of your belly button any minute now!
Mostly, you just get used to having endometriosis, and it impacting on every part of your life, every single day.
I guess that really, that’s not a bad thing, because it’s never going away. The monster is here to stay.

The end of the road

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So, we’re sat in meeting room 3 with the social worker and as she speaks I hear a sound, a cracking noise. It takes a while for me to realise, that’s what it sounds like when your heart breaks.
How do I know it’s broken? Because I am unable to feel what I should feel. 6 weeks on from that meeting I haven’t cried. I should cry. I should grieve this loss. I should feel this rejection, but I feel nothing. Resignation perhaps? A sigh and a realisation that this is it, the end. I am never going to be a mother.

Why were we rejected you ask? In national adoption week, why were a married couple with no criminal records, steady, responsible jobs, who are financially stable deemed unfit to offer a child a loving family home?
Because of hearsay and conjecture. Someone once said something about my husband. That is all. Many people were willing to refute what was said, but no, an accusation was all it took. No arrest, no investigation, no criminal record.
In the world we live in, relationships break down, often not amicably. Families are torn asunder, this happens. People are left hurt and bitter by what they see as betrayal. Hurt and bitter people will often lie.
I know this, you know this, it is common sense, it is a fact of life.

How has this affected our relationship? Initially, we both retreated to lick our wounds, we were both suffering, but in different ways, neither of which the other could understand. We both felt guilt, me for putting him through this, him for his past. We both blamed each other.
The only thing we had in common was anger. Anger with a system that seemed archaic and biased. Anger at the person who had caused this.
We stopped communicating, which fed the anger. Eventually, the damn burst. We realised we needed to stop blaming, to support each other and to find a way forward.
For us, that way forward is a new start. Putting the past behind us and building a life for the 2 of us in a new place.
I hope our new life involves taking care of each other. Appreciating each other. Not looking to escape by planning the next holiday constantly.
I hope we have a dog, and an open fire and long walks in the country, a new lifestyle based on health and relaxation, I hope we continue to support each other, to communicate, to laugh a lot.
I hope we can realise that this is the end of our journey, that we got to where we are via a really hard road, we got somewhere we didn’t expect to be, but we got there together. Maybe this destination can be just as good?

The Cake

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So you really want a cake, a lovely special cake. You go to the cupboard, but you don’t have all the ingredients. Hmm. You decide you will go to the shop and buy the ingredients.
The ingredients cost more money than you have, and because you bought them you need a special baker to make the cake mix, he charges a huge fee too.
You go home, sad, disappointed, but determined to save the money so you can have your cake. Eventually you manage, you have gone without things you thought you needed, but it will be worth it, soon you will have your special cake!
You return to the shop, you pay your money, you get your ingredients, you take them to the baker, you pay him with the last coins in your purse.
The baker makes the mix, but, disaster! There wasn’t enough of one ingredient! The mix didn’t work!
Again you go home, a little sadder, a little more disappointed, but even more determined. You will have your cake.
As you save your money you hear of others who went to the baker. Some had enough ingredients, but the oven temperature was wrong, some got it right first time.
You return to the shop, pay your hard earned money and take the ingredients to the baker. You hope and pray it’s the right ingredients this time.
It isn’t, one of the ingredient was out of date, the mixture is useless.
You go home. Devastated. There is no more money to buy ingredients. But you still want that cake. Cake is all you can think of! Everyone else is making their own cakes, it seems easy, their cupboards are bursting with ingredients, and they seem to have the perfect recipe!
Maybe someone will give you a cake that’s already made?
You go to the cake store, some people didn’t want their cakes. Maybe they had too many? Maybe they wanted something else instead? The cakes here might be slightly damaged, but that just makes them look better to you! You ask at the counter, surely it’s best for me to have one of these cakes rather than them being left here in the store?
Apparently you have to be the right sort of person to have one of these cakes. You explain how much you want a cake, that you have been trying to make one for so long, that you have a lovely tin all ready for it. But no, you may not be right. You agree to do anything the store keeper wants.
You stand on your head, you wrestle an alligator, you climb the highest mountain. Maybe that’s enough to be able to take home a cake, you would ice it and put it in its special cake tin tomorrow if you could.
Still, you wait for someone to please, just let me have a cake, I’m so very hungry.

The empty room. Depression.

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I did really well keeping up with this blog! Oops!
I tweeted yesterday that we should do a challenge for depression, like the ice bucket challenge for ALS. For depression you would sit in the corner of a dark room, alone, watching other people live their lives. I made a joke of it, but if I’m honest, I’ve been in this
room for a while now. A month at least.
I feel alone, a cry of ‘nobody cares’ creeps in to my head. If I wasn’t here, would anyone notice? What is the point of me being here?
Maybe my friends would notice. I doubt it. To me, they have lives filled with love and people who want to be around them. I have insinuated myself into these lives, but I’m not a major player. If I stopped forcing myself on these people their lives would go on, they probably wouldn’t even notice that I was no longer piggy backing them.
Perhaps my husband would care. I know he loves me, but is that habit? Pity maybe? If he didn’t have to take care of me then his life would be easier. I know in a burden to him.
At work I am able to feel useful for a while, until I realise that actually, I could be anyone in a blue uniform doing that job. There are many people who do it better than me.
I’m not having suicidal thoughts, don’t get me wrong. I just feel right now that people don’t need or want me.
I’m actually feeling pretty self centred for even writing this down, for spending this time pitying myself. I should be dancing in a silly hat, clapping my hands because I feel “like a room without a roof”, compared to others I lead a charmed life. I’m going on my second holiday of the year in a few weeks! Isn’t that enough for you? What more do you want?
I think you could give me all the holidays in the world, a hundred friends, my husband and a mansion. Right now, that room would still be dark and empty.

Endometriosis part 2: Pain

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This is the pain I feel on a daily basis.

Number 1 pain is usually the lower pelvic region. I describe it as electricity, it’s like jumper cables attached to my insides. This pain is always accompanied by bloating that expands my abdomen to an extent where I can go up 2 sizes. The bloating is really uncomfortable and sometimes causes me to be short of breath. I’m usually pretty exhausted by this. This pain comes and goes, it can last up to a week for me.

Number 2 pain is from my bowel. This presents as a sharp pain, I describe it as a knitting needle going up my bum! Often I also have pain when of this type when I need to pass wind. I also get very constipated which causes it’s own pains and problems.

Number 3 pain is in my hips, lower back and upper thighs. This feels like I have sat for too long in one position, or like I have run a marathon. Which I can guarantee has never happened! This is referred pain from my ovaries.  It’s an ache, a heaviness and a stiffness which prevents me sleeping, walking and generally being comfortable.

This is just the pain symptoms I experience on a daily basis. The other symptom I deal with constantly is exhaustion. This comes from dealing with the pain. My body is working so hard at fighting the pain it’s too tired to do anything else.

I often feel like I have a urine infection due to having endo on my bladder and ureters. I need to pee, I can’t pee. I need to pee all the time. I need to pee immediately!

Having this pain makes you feel alone, and low in mood. I have discussed depression already on this blog. Endometriosis compounds the depression as you realise that you will spend your whole life dealing with it. It makes you feel like an old lady, especially when you are looking at wheelchair access and disability services at Disneyworld. No matter how kind and supportive family and friends are, they must get bored of it eventually? I don’t have that option.

Endometriosis: Part 1- Chronic pain.

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I’ve always lived my life by looking forward. No matter what is happening, it will pass, you will survive and it will be over. I’ve especially used this when I’ve been unwell. You have a headache, it’s horrible, but, you know with painkillers and time it will pass, tomorrow you will feel better. You have norovirus/food poisoning, you feel so ill, but you know, within 72 hours this will pass, you will be a bit thinner, and you will feel normal again. You have a period, it sucks, you are in pain, but within a week it is over for another month.

Today it hit me, I can’t use this technique anymore. I have been in pain every day for 2 years, and it’s not going away, this is here to stay, for the rest of my life, however long that may be.

Imagine having that headache. You are in pain, you can’t concentrate, all you want to do is lie down untill it goes away. You’ll do anything, take any medication to make it go away. Imagine that headache lasting for 2 years. That is where I am right now, with a long stretch ahead of me.

The pain I have isn’t a headache. The pain I have is in my pelvis. Essentially everything from my belly button to the top of my thighs is affected. All the way round.

I have a chronic disease called endometriosis. This Is a condition that occurs in women when the lining of the womb (endometrium) grows and attaches in other areas of the body. It continues to act as endometrium, in that it grows, stretches, flexes and sticks. (There is a lot of further info on this on some really good blogs). There is no cure for this disease, there is symptom management. Even removing the endometriosis surgically is not a cure as it will grow back. Although a hysterectomy (removing the womb), can provide some relief, again, the endometriosis can grow back. It can cause adhesions, where organs stick together, and heavy scarring within the body. I was diagnosed with this in February 2013 after suffering for many years.

I always had bad periods. Heavy and painful. I tried lots of different hormones to stop my periods happening, and managed not to have them for many years. In 2008, I stopped taking the hormones and my periods began again.

The pain was immense! It is not normal to be in so much pain during your period that you can’t continue with everyday activities.

They got worse each month, I began trying to work my days off work round it each month, which isn’t practical. After 2 years I began experiencing other symptoms, pain when I wasn’t bleeding, pain in my bowels and lower back, and dyspareunia (pain during and after sex). In 2011 and 2012 I continued in this vein. I had to go to A&E maybe 6 or 7 times, each time I was given painkillers and sent home with the feeling that I was just a wimp, deal with periods like everyone else does!

I was finally referred to a gynaecology consultant in 2012 and had a laparoscopy to diagnose endometriosis in 2013. I tried hormone treatments for a year with no relief except to stop the bleeding. In Jan 2014 I had an excision operation to remove the endometriosis in my uterus. Although I knew that the surgery wasn’t a cure, and that eventually it would come back, I think I had hoped for a miracle. That once I was over the trauma of surgery I would be back to ‘normal’. I would be able to live my life pain free for a long time. It appears that my pain free time was while I was recovering from surgery.

I take tablets to try and allow me to get through each day. I have had 2 surgeries, a diagnostic and an excision laparoscopy.

So, what’s next? I keep taking the pills, I rest when I can. I hope that I can be referred to a specialist who can also help with the endometriosis on my bowels and possibly on my sciatic nerve,  and I keep praying that one day we will find a cure.