Monday, 30 July 2012

A jar of nutella and a spoon.

Image courtesy of http://favim.com/image/25302/
I am not feeling good at all today. My period started over a week early and with such heavy bleeding it's just totally knocked me for six again. I've spent today hobbling around, not straying far from my bed and eating lots of chocolate. 

What's made it all worse is that during my sleep last night I woke myself up when one of my adhesion's tore while I was turning over. Total agony. In fact, I'd go as far to say it was the worst tear I've felt. It felt like someone had ripped my side open and thrown a burning match inside me. But it soon went off (hence, how I know I'd only torn something) and I went back to feeling my normal agonising period pains.

I thought the above quote was very apt for my period times at the moment. Having not had periods for several years I'd completely forgotten exactly how painful it was to have them. Memories of laying on the bathroom floor, huddled in to a tight ball, crying and almost passing out with the pain is now reality again.

Sometimes I wish I knew what it was like to be normal and have 'normal' periods.

S.

Tuesday, 24 July 2012

Little catch up on a blazing hot Tuesday.


I feel like I've neglected my blog (again) even though I've only had a few days away from it. I've just been so busy over the last few days and then so exhausted from doing those things.

Today I feel back to my normal self. A good nights sleep followed by an afternoon sunbathing in the beautiful, blazing hot British sunshine definitely helped to perk me back up. It was exactly what I had been needing.

I felt very sociable last week!... I spent time with my Loulabelle and Lisy Lou, having a giggle and eating pizza on Wednesday evening then my friend Nicky brought her gorgeous little boy Micah round on Friday afternoon for a catch up. So much has happened since I last saw her so it was lovely to spend some time having a chat with her and snuggles with Micah.

Me and the boy had our little date night on Friday and went for a quick bite to eat, a drink and then to the cinema to see The Dark Knight Rises. I had been super excited about seeing this film and it definitely did not disappoint. I won't talk about it though because I don't want to give anything away for those who haven't seen it yet. I know I had been shutting off my ears to everything in anticipation!

On Saturday we did a little shopping and the weather was beautiful. I actually bared my legs in public for the first time in ages!... Had to put on sunglasses though to shield my eyes from the paleness of them though!

In the evening we went out for a meal for our friends Tina and Chris' birthdays at a local Mexican restaurant. There was a big group of us, the food was beautiful, it was my first night out in months and I got to dress up and put some nice make up on so I really enjoyed it. It completely knackered me out though and I did struggle towards the end of the evening as I was aching a lot, but I was so happy to get out and see everyone again. It almost felt like my life was back to normal - if only for a few short hours. I had a really good talk with our friend Janette too. She was diagnosed with endometriosis last summer so we've been keeping up to date on what's been happening with each other. She has been on a special diet which I want to look in to also, via a local nutritionist. I'll keep you posted on any progress I make with that and will give Janette a mention again soon as she had some excellent news the other week.

I had my medical assessment for my benefits yesterday. I won't go in to too much detail right now because I want to do a separate, more detailed post on it all, but I think it went OK so fingers crossed I can carry on receiving some financial help.

I've been working on things for the blog behind the scenes a little over the last few days and have a few different things I want to start writing about. Hopefully they will be up from this week onwards so keep your eyes peeled.

I've had some great feedback from people about the blog and I've really appreciated all the comments I've had. It's so nice to know people are reading this and understanding what this disease can do to people. I really want to get the word out and get more people following so please, please, please, click the follow buttons on the right and spread the word. My aim has always been the same: the more people that just read the word endometriosis the better. At least then they will have somehow heard of it. I know not everyone goes through the same things with endometriosis but hopefully my words here will shed some light on what to expect and give some support to those who are living with it - whether that be the person living with endometriosis, partner, parents, friends or colleagues.

S.

Wednesday, 18 July 2012

Cabin fever and manic weather.


The weather is all over the place today. One minute it's absolutely pouring with rain, black sky, thunder and lightning and the next it's beautiful blue sky and sunshine! I wish it would make it's mind up. Typical British weather!

I'm making the most of it at this precise moment though and I'm sat on a bin bag (!) on the bench in the garden (because I don't want a wet bum!) and trying to finish Fifty Shades Darker by E L James. I know these books have very mixed reviews but I've enjoyed reading them. It's lovely sitting in the fresh air though, listening to the birds, with my two cats sat at my feet.

As you can maybe tell, I haven't got an awful lot to say. It's difficult when you don't leave the house or see anyone much. But (and I'm very excited about this!), tonight I'm off to my friends house for a girly night with pizza and a movie and then we have lots planned for the weekend so I'm looking forward to that a lot! My mum came round today too to keep me company. It must sound so sad that I get excited about just getting in to town or something for a few hours, but when you can't drive yourself around and be independent like you always have been, it really gets to you. I'm a little stir crazy today actually but I'm recovering from last weekends short walk and car boot still so stir crazy is all I have at the moment.

Anyway, I'm rambling for the sake of it now. I'll be back soon with another post for you all. I have a few things planned that I want to talk about but, in the mean time, if there is anything you would like to know about me, the blog, endometriosis or just life in general, then just leave me a comment below. I've also joined Twitter this week so if you want to follow me on there (and see more useless ramblings) then please do - the link is on the right.

Please don't forget to follow my blog using the links on the right and tell others to take a look. The more people that know about this growing problem, the better.

I'm off now because it's started raining... Blummin' weather!

Talk to you all soon.

S.

Monday, 16 July 2012

Me: updated. Part 3 (what is wrong with me).


My date for my surgery came through quicker than expected and I had a pre-assessment on 18th May and then went in for my laparoscopy on 29th May. Luckily it was at a different hospital to the one I had been in for my previous surgery.

It was supposed to be an outpatient procedure and I went down for my operation at 4pm - but, I reacted very badly to the anaesthetic and had to stay in hospital overnight. I just remember waking up from my operation and being incredibly panicked and frightened and I burst in to tears. I felt very sick and my eyes were apparently all over the place and the pain was so intense it was unreal. I fell asleep for a short while and then was taken up to a ward to recover. Except, on the way I passed out and my blood pressure dropped and I was taken to another recovery room and put on a drip. After this I slowly came around and started to feel a little better. I was finally taken up to a ward at just before 10pm.

I was in a lot of pain with the gases, I had forgotten how much it hurt to be blown up like a balloon and for that gas to not have anywhere to go. The nurses were absolutely fantastic though and gave me lots of hot tea to help. They were so incredibly helpful and made the time so much easier because they actually cared about me (unlike the nurses who looked after me after my last surgery). I was dosed up to my eyeballs on Tramadol and Paracetamol but they weren't helping so the nurses gave me some Oramorph (and were on standby with the Piriton just in case I reacted to it). Well, that was it. I was still in pain but wahey, I was away with the fairies!

The Prof. came to see me the morning after my operation and explained to me his findings. I had been prepared to hear my endometriosis was worse, that I already knew without someone cutting me open. But what I heard, I was not prepared for in any way. He told me that my endometriosis was "aggressive and extensive" and had spread. Previously, he had found endometriosis on my ovaries and on my Douglas pouch (behind my womb). But this had now spread and he found it on both my ovaries, my Douglas pouch, my bladder (which is why I was having problems with wetting) and diaphragm and it had stuck my fallopian tubes to my left ovary. He also added that I was extremely constipated - which I already knew because of the Tramadol. I was high as a kite on meds, but I was also heartbroken. He said that he had put me down for more surgery to remove the endometriosis but that we also needed to sit down and talk through what my options were - it wasn't just something that could be decided on there and then. I still don't know what that means but to me it doesn't sound positive.

So I guess that's my update completed, because since then well, I'm just in the same situation that I have been for months. Except now I'm not only trying to deal with the pain and incapacity of the disease but also the emotional side. My stitches may have disolved, my scars may have healed, but my soul is broken.

I've had repeated breakdowns since then - I'm finding it very difficult to cope. The boy has been absolutely phenomenal, sitting with me when I'm sobbing at 2am, consolling me when I can't face seeing our friends baby. But it's still there, the heartbreak, the pain, the uncontrollable emotions of trying to face up to the fact that things are worse and no matter how much you try to be positive and put on a big smile, it still hurts.

S.

Me: updated. Part 2 (when it all went wrong).


My 2012 was certainly eventful from the outset:

January
  • My mama underwent tests for cervical cancer. It was a ridiculously difficult time for everyone involved.
  • I was a passenger in a car accident and spent a week off work with concussion. Even trying to make a tuna sandwich totally confuzzled me.
  • I had my bone scan (as mentioned in this post).
Me and the boy did, however, have a wonderful holiday (our Christmas present to each other) spent huddled up in a lovely cabin in the middle of no where with a steamy hot tub which definitely made up for things. I came back loved up and shattered but relaxed and raring to go.

February
  • My best friend travelled up to see me and ended up going missing after a night on the tiles. I had to file a missing persons report and eventually the police brought her home after she woke up in a restaurant not knowing what had happened.
  • I had been working super hard on an event at work for months and when the day of the event finally rolled up, instead of enjoying all my hard work with a glass of wine, I was instead taken in to hospital and hooked up to drip.

The unravelling of my life...

I mentioned in this post that I had been a little MIA but hadn't said why. Well, during the early hours of 10th February, I awoke and had a few sharp pains in my "cervical area". I thought it must be because I needed the toilet, but when I got back in to bed I told the boy that something didn't feel right. I couldn't put my finger on what it was or why I was suddenly feeling so bad. He suggested snuggling back up so the heat from his body would help but as soon as he touched me I started screaming. The pain was just unbelievable. I couldn't find a comfortable position and though the boy and my parents were trying everything they could think of, nothing was helping. In the end the paramedics arrived and I was given gas and air and taken to hospital (well, eventually anyway as the ambulance got a flat tyre just down the road and another ambulance had to come and collect me!). In A&E, I was given various painkillers but everything was making me sick so I was given an anti-sickness injection and then sent over to Gynaecology for more tests. After being given a wonderful Tramadol suppository, I was taken for an internal scan which showed a large clump of endometrium and as I was finally reacting well to the painkillers, I was eventually released that evening. I was told that my endometriosis had flared up as a result of stress. Looking back, I had had very bad moments in the week leading up to me being in hospital where I had hurt myself several times. I was even meant to go to a Bokwa class the night before this all happened but pulled out - mainly due to having to stay at work late that night but also because I wasn't feeling great.

Things were pretty bad for the next few days and I went back to the doctors the following week to get some more painkillers and see if my hospital appointment with the Prof. could be moved forward from April. I needed help and didn't want to wait months. The only thing that seemed to be helping in any way was my beloved hot water bottle. I was also signed off work.

I didn't have any answers and yet I was still in pain and was just being told to carry on taking painkillers and rest. Over time my body became used to the painkillers I was on (Tramadol, Paracetamol and Dicolofenic) and I've had to be prescribed new stronger painkillers several times now. I'm currently on 150mg Tramadol (2 per day), 500mg Paracetamol (8 per day) and 50mg Naproxin (3 per day). The effectiveness of the Tramadol has again worn off and is particularly useless when I'm on my period so I'm hoping the doctors will increase my dosage again. 

At the time I was still taking my 3 month course of Loestrin 20 and still had my coil in but I decided to stop the pill after the 3 months and had my coil taken out at the beginning of April. Although I'd been told the reason for the flare up was stress, I had started having other problems. Embarrassingly, I had started wetting myself. Not a huge amount. But enough for me to be mortified. I had asked one doctor about it and he suggested it was down to the swelling but when it didn't get any better I mentioned it to the doctor who removed my coil and she said she couldn't see any reason for it as my pelvic floor muscles were very tight.

During this period of time, my grandma, Bunty, tragically died after a fall at her house. My mum had been calling her for days and had assumed she was out shopping or in the garden, but then she received a phone call from the police on 17th April saying a friend had reported her missing after she hadn't turned up for their usual shopping trip. The police broke in to the house and found her in a terrible state in the bathroom - she'd fallen during a wash, and had been laying there, naked, for 5 days, unable to get to the telephone or even open the bathroom door. She was immediately taken in to hospital but after 2 days, her tiny body gave up. It was a terrible time for all of us and we still all blame ourselves. I blamed myself because I was ill and had I been well, I would have popped in to check on her after work. It was so upsetting - still now, writing this, I'm in tears. Me and the boy (and my dad) took on the responsibility of her little cat Daisy who was very thin after what had happened. She is safe and well and loving life now but we always talk about her mama to her so she knows what has happened. Being so upset in no way helped my condition and during this time I really struggled. Unfortunately, I saw the bathroom and the state of things and it was very traumatic. My head still can't deal with it. But Daisy has helped me a lot - I guess I put all my grief in to her. Things weren't helped by Daisy Bella going missing on the day Bunty died either. We had been keeping her in the house so she could get used to her surroundings for a few days but then my dad let her out and she didn't come back. I was absolutely devastated. I just stood at the window and sobbed. But thankfully, late the next night we heard her little miaow outside and when we opened the door she came running in. Little monkey!

My appointment for the Prof. was not moved forward so when I eventually got to see him on 30th April I was about at my wits end. I was actually sent in to see a junior consultant but after kicking up a fuss, I was moved back across to the Prof's list. I had waited months to be seen and didn't want to be fobbed off with more things that wouldn't work. The junior took down some notes, and when I mentioned about the wetting she said that there shouldn't be any reason for that. Which was a really silly thing to say in my opinion. Of course there is a reason for it... I'm a 28year woman - not an old age pensioner (though I have felt like it a lot recently!). Any who, when I went in to see the Prof. I told him outright what I wanted... I wanted surgery. I wanted all the endometriosis removing. Again. He said that I'd have to have another laparoscopy first to see what was happening inside my body. I came out of the hospital, my sister-in-law gave me a hug and I almost burst in to tears. Finally I was getting somewhere.

Unfortunately, and it still being 2012 - a year of total horribleness and worst luck ever! - my next piece of bad luck came at the beginning of May when I was made redundant from my place of work due to a Group restructure. I had been expecting it and although it was just another blow to deal with, it did feel like a relief to not have that to worry about. But of course, I wouldn't be receiving any sick pay then and with bills still having to be paid out, I was just living off my redundancy pay.

I felt lower than low. No job. Bad health. And an awful start to the year in general. Could things get any worse!?

S.

Thursday, 12 July 2012

Me: updated. Part 1 (the bones).

Image courtesy of http://www.janwebb.co.uk/what-is-osteomyology/skeleton/
As promised, here is a very late update on what's been happening with my body. I hope it goes a little further in explaining why I've been so MIA (besides my crisis of confidence mentioned in my last post).

Because so much has happened over the past few months, I'm going to split this update up. Otherwise it will be very long and I'm sure, rather boring!

So, Part 1... Bone update...

As you all know, I had been eagerly awaiting my bone scan. Everything went OK with it - if you've ever been lucky enough to have one, you'll know it's just a case of lying back and letting someone operate a big scanning machine over you. It was a quick in and out job and the lady scanning me said I'd get my results through when I saw the Prof. in April.

A short while later, at the beginning of February, I got a letter from my doctor asking me to make an appointment to come in to discuss my scan results as soon as possible. This worried me because obviously I've had a scan before and had done the same as what I was supposed to do this time - wait to speak with the Prof. Any who, I made my appointment and saw the doctor a few days later.The doctor was concerned as they'd seen my results and basically wanted to ask why my bones were so bad - was there a reason that I knew about? I explained how my previous results had shown I had Osteopenia and the doctor said that is what my new results showed also. Unfortunately though, my bone density had decreased even more from what it was at previously.

Osteopenia is diagnosed when the T score on a Bone Densitometry (DXA) Scan Result is between -1.0 and -2.5 (as per criteria set by the World Health Organisation (WHO).

My previous scan on 14/07/2009 showed the following T-scores:

AP SPINE RESULTS:
Region L1-L4                T-score -0.8 (Normal)

FEMUR RESULTS:
Region Neck Left          T-score -1.0 (Normal)
Region Neck Right        T-score -1.2 (Osteopenia)
Region Total Left          T-score -0.5 (Normal)
Region Total Right        T-score -0.2 (Normal)

My new scan on 20/01/2012 showed the following T-scores:

AP SPINE RESULTS:
Region L1-L4                T-score -0.6 (Normal)

FEMUR RESULTS:
Region Neck Left          T-score -1.2 (Osteopenia)
Region Neck Right        T-score -1.1 (Osteopenia)
Region Total Left          T-score -0.3 (Normal)
Region Total Right        T-score -0.1 (Normal)

The doctor was very concerned and put me on a course of Fosamax that I took 1 tablet a week of for 4 weeks and referred me to a Rheumatologist to discuss the situation further.

I met the Rheumatologist on 21/03/12 and after a quick discussion he explained in simple terms that yes, I do have Osteopenia but there is a broad spectrum for the disease and I am only at the beginning of it, there is certainly nothing to be concerned about at this point in time. I was advised to carry on as I have been doing by taking double doses of Calcium/Vitamin D3 etc. and to have another scan in a few years.

I was overjoyed! At last, part of my health problems were sorted. So now, I just have to be careful and hope that I never have to go near any add-back therapy again.

Here's hoping.

S.

Wednesday, 11 July 2012

Blog reunited.

Image courtesy http://withpointedsticks.com/blog/
So, yes, I know - I've totally neglected my blog and in the process probably lost a few readers but I have to admit that I've been facing some inner turmoil as to whether to carry on with this.

In some ways I felt like writing on here was too personal and there are things that I don't tell people, hence why I haven't written for so long. Every time I came back to my draft post, I've clicked off it again and left my blog feeling unwilling to share my life.

It's actually down to the boy as to why I'm back here. He has mentioned my blog on several occasions and finally I gave in and told him I wasn't sure if I wanted to continue writing it. But, he made such a credible point that I had to come back - after a few days of hard thinking. He said that people like me need to read things like this. And it's so true. I know there are other blogs out there for girls with endometriosis, but, in some ways, I just cannot relate to them. Maybe it's because the only ones I've found so far are in America and the medical system over here in England is so different. Maybe it's just me being finicky. But, nevertheless, I'm back.

I'm overhauling the blog, making it fresh and generally how it should be. And, in the process, I'm learning how to open up to the world. My blog is personal, and I need to realise that in being personal, I need to reveal a little more - it'd be (and I had already realised this) hard to just blog about endometriosis as a single topic. I need to blog about what my blog is about - my life with endometriosis.

So, boys and girls, please bear with me. I am here, I do want to blog, and I'm over my crisis of confidence. I need this outlet as much as others need to read my words.

I will be back with an update shortly on what has been happening over the past few months and in the mean time here is a cute picture of a guinea pig dressed as a dinosaur to keep you all amused.

S.
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