Endometriosis

I decided something this morning whilst writing a reply to one of my friends. She was asking what I meant by "my endo" because, as usual, when talking about how I was feeling I gave such vague replies. My supervisor at work seems to have clued on to how I am very quickly - now when he sees me looking ill and asks how I am, although my response is my usual "I'm fine" he just looks at me in a way which tells me he *knows* I am not fine and I better darn well admit it. It's quite amusing really - and if it wasn't so deeply part of my personality to respond with "I'm fine" I'd have stopped even trying to hide how I feel.


But in my experience as soon as I mention I am feeling rough because of my periods people just don't want to know - so it's been easier to just not tell them I feel ill at all. My supervisor knows that the reason I feel so rough a lot of the time is my periods but he doesn't actually want to know the details of what is wrong just that I am feeling ill. Even my female friends have been known to "tut", roll their eyes or even say "cheer up, you're so miserable" when I've told them I was having my period.

Which is why, when I had to face something recently related to this (well the whole year has been related to it but in particular these past couple of months) I decided to start a private blog because I didn't want this one to become a "moan-fest" or rather worry about turning my readers away because of period-related posts. But that always felt a bit half-hearted - like I was denying that this part of me existed. And I suddenly realised this morning, when worrying about mentioning my endo online, that why should it matter that other people don't want to know? They often respond with a roll of their eyes because they think I'm just being a wuss and to be fair I've never actually done that much to prove them otherwise because I've never explained what is actually going on.

So I've decided to come out of the closet (so to speak) and blog about my Endometriosis.

I don't want to make this a long and boring post, so let me give you a few highlighted details:

• Endometriosis (or endo for short) is a condition in which cells that normally grow in the womb grow outside of the womb, grow and bleed, causing adhesions and scarring. These tumours or implants are most often found around other reproductive organs like the ovaries and fallopian tubes but can sometimes be found as far up at the lungs and shoulders.
• It affects far more women than you'd expect and doctors have no idea what really causes it. It is uncommon to be diagnosed with it younger than your mid-twenties (I had to fight to have mine diagnosed at 21 having started to complain to doctors at 15!). Endometriosis has been found in girls as young as 9 and yet doctors still refuse to acknowledge this.
• There is no cure for Endometriosis, only treatment. This ranges from contraceptive pills to regulat the growth of the cells to surgery to either take away the adhesions or even remove the reproductive organs.
• Endometriosis is a major cause of infertility and although it can be excrutiatingly painful for some women, others can be riddled with it and have no idea until they start tryin for children and cannot fall pregnant at which point surgery diagnoses it.

That's just a brief overview. Doctors really are quite dismissive of this condition - I have always had problem periods right from the age of 13 and at 19 when finally seeing my first gynaecologist I was told in no uncertain terms that I as "young, healthy, sexually inactive and had always had problems so it must just be the way you are - take some painkillers and get on with it". I left his room in floods of tears, my mum in a rage because when she had pointed out that she had had to have a hysetrectomy at 36 due to endometriosis she was told "oh too many women are diagnosed with that!" It makes me so angry thinking of this man now.

At 21, after suffering in silence for too long and being stuck in bed with such unbearable pain for up to 8 hours solid and wishing I could die just to make it stop I finally built up the courage to try again. I wrote out all my symptoms, with diagrams, and made them pay attention to me. They were still 98% sure nothing was wrong but agreed to do a laparoscopy to see. Turns out I did have endo and it had stuck my fallopian tube to my ovary (which was also enlarged)... and they thought nothing was wrong with me!! They fitted me with a hormonal coil and after 3 months of agony things settled down. I had no bleeding or pain for 2 whole years...

Then in 2007 things started happening - bits of blood and pain began to creep in. After yet another battle with the doctors to get them to pay attention (and having to pay hundreds of pounds to go to Bupa to get a specialist opinion) they finally referred me again to see a gynaecologist. After talks, tests and scans they decided the endo must be growing back and the coil was not enough anymore. But they didn't want to risk another laparoscopy just yet because of the extra scarring it would leave. So they started me on a chemically-induced moenopause.

That's right - at the age of 24 I was going to be going through the same thing as my mother!! I expected the hot flushes and mood swings. I started my private blog because I wasn't ready to share this information with the whole blog world. But then things went wrong... I reacted so badly. I couldn't eat, I couldn't sleep, I was psychotic and paranoid, I would stand in the shower and have no energy to wash myself or even get out of the shower when the water turned cold. I was barely functioning and we had to stop.

This all happened end of October and most of November. Since stopping the injections I have slept better but feel so weak. I am still emotional - in fact the whole of Christmas all the emotions I didn't let myself feel before came flooding out. I was miserable. What a way to spend Christmas. And always having to put on a smile for the world...

I decided to be happy - what is the point in wallowing. I have wallowed for too many years and it does me no good. I have also had times when I have actively chosen to be positive and look at the good things in my life. This is why, when asked on Cherry's forum what my word for 2009 will be it was Gratitude! I am going to be grateful for all I have. I am also not going to keep this a secret anymore.

I have endometriosis and it makes my life hell - but it is not who I am, just a part of me. And in order to be positive about this I have to accept it and that means letting people know, no matter what their reaction may be!

2009 - what are you hoping for?

2008 has been a year of extreme highs and such dark lows for me and T.

We spent such a wonderful few days together last Christmas & New Year and started 2008 with so many wonderful expectations. We even created our very own manifestation collage. By the time March rolled around we were even more optimistic. T had a secure job, I had found work in Cambridge that I would love and we found a flat that, although not perfect, was pretty darn good compared to the others we looked at. It felt like our dreams were coming true and all that we had wished for ourselves for this year would be granted to us.

Then the dream turned into a nightmare - in May T developed severe pain in his arms and wrists and had to leave his plumbing career behind. Redundancy came before he had chance to find more work and however many job applications he filled in he just never received a reply. Living on my meagre wage just wasn't enough and twice we had to rely on my parents to bail us out. We tried to keep positive even when T was feeling so weak and helpless and depression started to sink in, but it was so hard...

Then things started to look up when I received an invite to an interview at the city council's tourist information centre. That sounded right up my street - and just in time as the week before my interview I fell ill with such a debilitating inner ear infection I couldn't move for days without throwing up and it took me the whole two months of my notice period at the nursery I couldn't even work full-time. But I started work at the end of August and things were perfect. My colleagues were great, I had a new sense of pride in my work and a spring in my step. They even offered T a casual post to help us get by until his new job (NEW JOB!!!) at the hospital began. Things were finally going our way...

November was a hell of a month for me though - with medical treatment for an ongoing issue causing me more problems than I started with and rendering me unable to work for most of that month my self-esteem dropped to such a low. And although the treatment was stopped over a month ago I am suffering from worse symptoms now than I was before. Christmas has been a sad affair for me - the first spent away from my family and one spent curled up in pain and close to tears.

2009, however, should hopefull bring with it a return to less rollercoaster rides. We will be moving house again - but this time to a beautiful place thanks to friendship and generosity of kind and loving people. I see the gynaecologist in January and hopefully get some answers - if not my manager has offered to refer me to occupational health - and with the support of understanding managers I have received great reviews at my probationary work meetings. I am quietly optimistic this year though - after last year's optimism being cut so short I am trying to take it day by day...

2009 is going to be such a hard year for many. T and I have already been through our first year together in such hard circumstances we feel we can face anything - but we'd rather face nice things for a while. I do hope that others find a bit of peace and respite in 2009 too. And that's what I hope for 2009 - not just for us but for all of you too!

With love
Amanda x

Ice Skating - OUCH!

T and I went to my work's do last night - at the outdoor skating rink and German Christmas Market. As we are part of city centre management who have dealt with these things coming into town it was great to go and see it. We even got to go ice skating for free!!

Not everybody was brave enough to have a go but those of us who did had a great time. I was amazed at how well people were doing - I personally fell over twice within my first lap and once again on my last. T had to show me how to actually skate (I didn't know I had to bend my ankles inwards to balance) and he held my hand as I went round to begin with (having had to pick me up off the floor twice when I tried on my own!)

When I was younger we went skating a couple of times at a place which had a two level ice skating rink. I would always end up in a heap at the bottom of the slope going down to the lower rink and attendants would have to come and save me. I was glad this rink was on one level and not quite so crowded.

The rink was so wet though - as soon as I fell over the first time my jeans were soaked straight through from ankle to bum. *BLEUGH* After that that I thought it didn't matter if I fell again and just went for it...

Of course the second time I went down I wasn't wearing any gloves and smacked my palm against the ice so hard I have bruised it. I wondered why it hurt so much. And then the last time I fell quite badly on the base of my spine and smacked my right elbow on the ice - followed swiftly by T falling on top of me as he had tried to catch me before I fell. Oh the heroics...

shame he didn't get wet as well!! I didn't think to take spare clothes so had to sit for another hour or so in soaking wet jeans in the ice cafe (although the non-alcoholic mulled wine made up for that!) and then froze as we waited for our bus to take us home. Needless to say, I jumped straight in a steaming hot bath when I got home.

Today I ache quite a bit but have very happy memories of the night out. We almost missed it as I got my dates wrong but I am so glad we didn't. It was great spending some social time with the guys I work with. And I told my supervisor that if I complain about my pain today he is entitled to tell me it's all my own fault... the way I'm feeling I probably will complain - do you think he'll do as I said?

"Ow my back hurts!"

"It's your own fault, Amanda!"

"Ow my arm hurts!"

"Seriously, Amanda, you said..."

Yeah... I think he might just enjoy that :o)

Other blog

As I haven't posted on my private blog for some time now I thought I'd just leave a quick note to let those of you who are following it know there is a new post there now.

Contemplative Christmas

I was so overjoyed to find this nativity scene in the charity shop recently. As a child, however much I loved the tinsel and baubles on the tree the nativity scene was always a favourite addition to the decorations. I find it strange really to think we had a nativity scene now because my family is not Christian and never marked the birth of Christ but rather a joyous time for family and friends in the depth of winter. One of my friends once asked me in my teens what Christmas meant for me if I wasn't a Christian and I found it hard to really say as I'd never thought about it - it just was.

Although my family never celebrated in the Christian tradition I was taught the Christmas Story at school and later as a member of a church choir I was reminded of it once again. As a child I would love to sit by the nativity and think of Mary and Joseph making their journey - this and thinking of santa and his elves took up a great amount of time in advent during my childhood years. I had the exact same faith in santa as I did in God - unquestioned faith that these things existed. I fought so hard not to hear that santa wasn't real (I even made santa and his wife and his elves and the reindeer cards and presents when I was 10 trying my hardest to prove what everybody said was wrong!) In some ways the loss of one belief signalled the end of the other.

I never actually lost all my belief - it just changed. I still believed in the intangible, in something beyond what I could see - but that something became very indistinct. Through the years it developed into what I now believe which in many ways separated me from the Christian faith. I followed my heart and found that it didn't agree with what I had been taught - yet still I would love the quiet moments after everybody else went to bed on Christmas Eve to sit by the tree and think about that night so long ago when a mother and father desperately searched for a place to welcome their son to the world. Such a humbling moment in the fast paced Christmas festivities.

Which is why out of all the characters in my new nativity scene I think my favourite is this shepherd boy. Stood behind the wise men he brings a humble gift of a lamb - it's not what he brings but that he came at all. Last night T and I watched A Muppet Christmas Carol and two things struck me: 1) how amazing it is that a tale about humility and love of mankind has become as much a part of Christmas as the Nativity (well they compliment each other beautifully don't they?) and 2) how very hard life used to be for people and this humbled me more than anything. T and I have had the worst year ever and have reached the limits of our funds yet again. And yet we still have a home - it is cold and damp but its still a home and through the kind generosity of newfound friends we will have a beautiful home next year. And despite one of us being made redundant through health and the other still struggling healthwise we are still together, with a life ahead of us. We don't have to worry about paying for healthcare or putting food on our table as nobody will let us go hungry. Our lives are so much more than many who have gone before us - hard to remember sometimes when the world is bent on telling us how much we need this or that or doomsayers tell us we're heading for deflation...

This is my first Christmas away from my parents - it is a strange prospect not to be with them but I am so excited to spend it with T and start our own traditions for this special time of year. We are hoping to head to a Carol Service tonight. I dreamt about Carols the other night - I honestly cried in my dream at the beauty of them. Everything seems to be taking on new meaning this year. I can't say I'm a believer - I believe in something and I am pretty sure that the Nativity happened in one way or another but I cannot say I am sure I fully believe. But what I can say is that the message of what happened that night so long ago will continue to haunt me (in a good way) this Christmas time and perhaps every Christmas to come. It's a humble Christmas for us this year - I'd love to have more money to treat those I love to things they will cherish - but I am reminded that my love and thoughts are enough.

Apologies if this is a rather sentimental post - but I am feeling rather overwhelmed by the spirit of this season - especially after all that has happened this year for us. So I leave you with a candle for contemplation and wish you a very joyous Advent.

Seals - finally!

Sorry it's taken me so long to get round to this post. I have been wanting to share these photos for ages but just haven't had the time to post them - too many Christmas cards to write and gifts to wrap and parties to attend (hehe no actually they don't start til this coming weekend - along with the long list of carol services I've told Tim I want to go to!)

I've been very contemplative this Advent season and will most likely post more about my musings but for now I will just get on with the long-awaited post!

The photo at the top of this page is meant to show how far along the beach the seals were and also how bloooming cold it was that day - but it's too small so you'll have to use your imaginations :o)

This was the most common sight along the beach - a mother and baby having a rest. The babies would occassionally make a noise that honestly sounded like "mum, mum" and the mothers would occassionally look up at an unexpected noise, see it was just 'those humans again' and settle back to her sleep. It's so strange to think that they are so relaxed with all us humans taking pictures of them - but they have come to this same beach for so many years and been protected by the lifeguards and the RAF that they truly have no fear.

This is how close they would come. We were stood behind a second fence about a foot away from this seal pups head. This was one very nosy pup and s/he left the safety of mum's side to come and investigate. Alright for her but two of the mothers then started fighting over whose pup it was...

We think that it was the one in the background's because the one in the foreground has blood on her neck and from what we could gather she had no pup in sight. We think maybe she lost her pup and kept thinking others were hers only to be fought off by the real mothers. This is of course only speculation and I do hope it wasn't so - but knowing how hard it is for babies to survive in the wild we know it is a real possibility. Although I do not like to see them fighting I love this photo as it really catches the moment and the true nature of the seals - firecely protective of their young!

This last photo makes me laugh the most though - I don't know if you can enlarge the photo but basically a pup is nursing at the base of the sign which says:

"Danger: Military firing range. Keep out when warning flags or lights are displayed.

Danger: When access allowed do not touch any military debris. It may explode and kill you"

That is just how weird this whole thing is - the seals come over once a year and take over a whole military firing range. Last year when my parents when apparently the aircraft were flying over practising and the seals were less bothered than the humans. And the RAF there work to keep the seals safe whilst they are there. There was even a story of a seal who many years ago came close to death caught with wire around its neck. The RAF worked with the lifeguards and local conservationists to free the seal and save it and since then it has come back each year to the exact same spot to have her baby. How cool is that?

Right I really must go to work now - I hope you enjoyed seeing the seals as much as I did!

Ok, no seals, but...

I haven't had the chance to sort out a picture post so no seal tales today. However it seems like forever since I updated my blog so I thought I'd do a quick one before heading to work.

We've been so hectic since coming back from our break in Lincoln. We've been to visit the house we shall be moving into - end of February - we have a date we can move in we just have to arrange with our current letting agents the date our contract here will finish. I cannot wait to move in and then take pictures to show you all :o)

After that we put up our tree and did the last of our Christmas shopping. I wrote tons of cards - I even sent one to a friend who I was convinced I hadn't sent one to yet. And now I can't remember if I sent one to a fellow blogger or not - so she may be receiving two cards if I can't figure it out soon!

Then it was back to work. I worked yesterday so it was a strange week - I also cashed up most of the days last week so with long days and T starting his new job (which he loves so far btw) we've not really had time to stop and think. Especially with babysitting last weekend - very enjoyable but also ate up quite a bit of last weekend.

On that note - can I do a shameless plug here? T's sister has set up her own business selling silver print jewellery and nursing necklaces. Please go visit her site and have a look - some of the things are just so beautiful.

In other news - I was recently very poorly. For reasons of a personal nature I didn't really post about it on here but started up a private blog. I've been experiencing lingering effects of the medication I was given. Then I saw my uncle and had some reflexology. Has anyone else tried that? I never had but boy did it do some good. I have felt great for most of this week - like my usual energy had come back. I had the reflexology on Thursday and my symptoms starting returning yesterday slowly - that's a good few days symptom-free. Amazing really when you think about it.

Better go - time for work. I promise I will write a proper post soon x