Thursday, 29 December 2011

The knee bone's connected to the thigh bone

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I've had the date through for my bone density scan in January.

Since my last scan around 2 years ago I've been doing as much as possible to get my bones in good working order again. This has included upping my intake of dairy and iron rich foods, taking a calcium & vitamin D supplement daily and making sure I get lots of sunshine (which has been a little difficult to say the least since I live in the gloom of England!). I'm rubbish at exercising but I've even started going to some regular classes (minus a few weeks off over Christmas for some festive slobbage).

I'm hoping so badly that my bones will be stronger this time so that my options can be opened up once again.

Has anyone got any other tips on how to get my bones super strong?


Thursday, 22 December 2011

Hormones galore

I'm all set to start my next course of treatment now: the pill - while I still have my Mirena coil in place.

I have been given 3 packs of 21 tablets (as usually you would take a 7 day pill-free break at the end of each pack, but I've been advised to take them continually) and I just take one per day. If it works I'll have to go back and get some more to cover me up until I next see the Prof. in April.

Has anyone else ever tried this treatment before? I've tried various contraceptive pills now (none of which worked before) but maybe taken at the same time as having my coil in place might work. Hey, it might even stop my periods if I'm lucky.

I'm trying to be positive although I do feel almost like the Prof. has exhausted his options and is just grasping at straws now in the vain hope that something may someday work on me.

Here's to the next 3 months...


Sunday, 4 December 2011

Back to where it all began

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I saw the Prof. on Monday. I wanted so badly for him to say they had found a new amazing treatment that would cure my endometriosis. Or at least something that would actually work. Unfortunately, my visit didn't really conclude in the way I had hoped.

I went in and explained to him all of the problems I was having with the Mirena coil: How it was making me feel sick. How I had lost my libido. How bad my acne was again. How my moods were like a roller coaster. How bad my pain was. The response I got: "You're a complicated case".

He explained there weren't many options left. I can't have surgery because the scar tissue just makes my pain worse. I've tried the pill and the coil. I've tried hormone treatments. I've even tried for experimental treatments but since my bones are so weak I can't have that.

He now wants me to go back on to the contraceptive pill while I still have my coil in and see how that goes for the next 4 months. I asked him for another bone density scan since my last one was 2 years ago and he has agreed to that. I've been taking calcium supplements and have improved my diet since I found out about my osteopenia so I'm hoping this will have improved my bone density so I can try some new treatments. I'm hoping anyway.

But the worst thing he said is that in 4 months time, I'll be back on add-back therapy. My worst fear.

What hope is there if even my "specialist" hasn't a clue what to do with me.

I've tried all these things before and look where they've got me. Back here. Back to the beginning.

I feel like giving up.


Saturday, 5 November 2011

Endometriosis and relationships

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I've been in two major relationships since I was first diagnosed with endometriosis. I don't want to go in to major detail as it isn't fair to either party involved. But, one thing I will say, is that I blame my endometriosis greatly for the breakdown of the first relationship.

We had been together only a short time when I was diagnosed. He was hugely supportive. He would come to hospital appointments with me, would try to learn about the disease so he could help me cope with what was happening, would bring me hot water bottles when I couldn't move. But having so many hormones injected in to me changed me. And when I lost myself, I lost him also.

When we split up, I found the pressure of bringing my endometriosis in to a new relationship a tremendous hardship. I often questioned how anyone would want to be with someone who was so broken. I felt like I had nothing to offer. No one would want to spend their life with me. I couldn't offer a happy future filled with children running around or uplifting moods. I could only offer an uncertain future - one where I didn't know what would happen and one where I longed for things I couldn't have.

When Danny came on the scene, it was months before I divulged my secret. And it happened in the best possible way: while drunk. Perfect. My biggest insecurity and while drunk I blurted it out to the man I wanted to spend my life with. Instantly I was scared that that would be it. That he wouldn't want me - couldn't love me - because I had this "thing" that had changed so much for me.

Well, he proved me wrong. It had taken a while, but I had found this person who accepted me for everything I was and how little I had to offer. And I knew then that it was love.

I apologise if many of my posts wind up with me being a sad old so and so, getting upset about what I have and have not got. But I'm sure many of you will relate to my situation: I'm in a relationship that is forever, and yet I worry everyday that I cannot give this wonderful man the family that is meant to be in his future.

Danny supports me and tries to make me believe that things will be OK. In my darkest moments, when I feel the world is falling down around me, I can look at him and I know that it isn't so bad - because I have him.

We talk about the future often and, although I'm anxious to see where we will end up, I know that I'm safe. I have someone that's accepted me at my worst.

Our future may be unknown - but our future is together.


Friday, 4 November 2011

My story

I went to the doctors in early 2005 thinking that the issue was related to the Yasmin pill that I had been on for a while. The doctor informed me that he didn’t think a contraceptive pill would cause problems like this and that it could be a number of things such as an ectopic pregnancy, cyst, STD or Endometriosis. I was sent for a variety of blood tests along with STD checks and everything came back clear which is when the doctor presumed it was Endometriosis over anything else.

I was referred to my local hospital to see a gynaecologist shortly after this and had a laparoscopy in August of that same year. The results were clear. I had Endometriosis. That’s when my world fell apart.

I was put on a course of Zolodex shots for 6 months – one per month on differing sides of my tummy. I have to admit, as much as I hated the hormone, as much as I hated the exhaustive hot sweats and mood swings and depression, it did help. While I was on it anyway. At the end of the 6 months my gynaecologist referred me to a specialist at another hospital as he could no longer help me.

I met the Prof. in 2006. On his first encounter with me, he exclaimed “How can someone so young have such bad Endometriosis?". The Prof. had no explanation for me having this disease. I have no sisters and my mother was never diagnosed with it – though she suffered terribly with her periods also. She still blames herself for giving this to me even though she may not have. But she does it in the same way that I will blame myself also, should I ever bear a daughter.

The Prof. sent me for an MRI scan as I was having a lot of pain in my bowels also but this came up clear. He then sent me for laser surgery and adesiology in 2007 to remove as much Endometriosis as he could and to remove all the scar tissue which had decided to join all my insides together. I was under the knife for 4 ½ hours and I will stand by this to my dying day that this was the worst experience of my life. The hospital was so short staffed I wasn’t fed for almost 72hrs (and when I finally got to order a meal they lost the order), the only drinks I had were water, my bed wasn’t changed even though I had bled all over it, and as I had a slight allergy to codeine, the strongest painkiller they could give me was Paracetamol. This doesn’t even work for me when I have a headache. I was in agony and the one nurse who did come and see me thought I had just had a laparoscopy – not major surgery. I didn’t even get any help trying to get to the toilet down the hall even though I was very weak and attached to a drip. I spent almost the entire time crying. The one time you need help and support and you’re on your own.

After 3 days I was discharged – without warning might I add. I had to get myself dressed (even though the clothes I had didn’t fit over my swollen tummy) and wait in the wards waiting area with a black bin liner of my possessions and wait for my lift. While I was waiting I had to go and receive my first shot of my new hormone treatment and was offered no help with my bags. Luckily, and I still look on this moment with great kindness, two girls sitting in the waiting area looked after my things. I seem to have quite regular rants about this experience but they never seem to help me get over it. But, I’ll move on now. Back to the hormone shots. I was put on to Decapeptyl for 6 months which was injected in to my bum cheek and during this time I was put on to Livial HRT (Hormone Replacement Therapy) tablets. The HRT helped tremendously but I still suffered with the same hot flushes and mood swings. Again, the hormones didn’t help and at the end of the treatment I was referred back to the Prof. for further help.

The Prof. told me that my Endometriosis was on my left ovary and in the Douglas Pouch behind my womb. He showed me all my photos as well. It was a big shock to see what damage the disease had caused to my body. But it did look far better after the surgery. He told me that if things stayed clear like they were straight out of surgery then I should be able to have children. At this time my Endometriosis was far better than ever before and though I was still experiencing pain, we decided to give my body time to adjust and settle before we took any further action. For a while I saw the Prof. for regular 6 monthly check ups and was put back on to the pill to see if this helped. It didn’t and in time I demanded another course of action.

My Endometriosis took a turn for the worse during this time. I was put back on to Zolodex shots – this time with a side course of Livial HRT – and it was the darkest time of my life. If you’ve ever been put on to hormone shots then you will know what I mean when I say everything was cloudy. Every time I’ve come off a course of treatment there has been a particular time in each instance when I can feel the cloud has lifted and I have become myself once again. But at this point, the cloud was very much there and on several occasions, in my darkest moments, I did think about ending it all. My body was giving up on me. I wasn’t dying (and will never compare it to that) but my spirit was. I fell in to a hole of despair. I would cry constantly. Most times I was brave enough to hold it in until I had time on my own but then I would collapse in to a pile of grief. I wanted so desperately to know the answer to my burning question; over everything else, the one thing I needed was to just know if I could actually have children.

The pain at this time was so bad that I would regularly miss several days at a time off work. Sometimes it was so strong I would curl up on the bathroom floor and not be able to move for hours. Huddled in my tears. I was on anti-inflammatory tablets, strong painkillers and considered having my hot water bottle surgically attached to my tummy. It might as well have been attached for all the times I cuddled up to it. My hot water bottle became my best friend.

The Prof. suggested I have children or a hysterectomy. I said no to both. I wasn’t in a good place in my relationship to have children and was too young at the same time. And a hysterectomy was out of the question. At least without that I had a chance of conceiving. He suggested I give the coil a go. I said no on the grounds of the side effects and the thought of the horrible piece of plastic I would have stuck inside me. I wanted to give my body time to adjust from having had so many hormone treatments. I wanted to be me for a while. In the end he suggested a new experimental treatment of tablets which were usually given to women with breast cancer. I was sent for a bone density scan in 2009 but unfortunately, from years of hormone treatments, my bones had become too brittle to take the new treatment. I was then diagnosed with Osteopenia – a precursor to Osteoporosis. My only option left was the coil.

I had my Mirena coil fitted in February 2010. It was an awful experience. My doctor fitted it and was so gentle, but I still ended up screaming out with the pain and bursting in to tears. It made me feel sick for months after and I lost a lot of weight. On the plus side, although the losing of weight was a plus side anyway, my skin looked clearer than ever and my libido was sky high. I felt on top of the world and although it didn’t stop my periods completely, I had very little pain.

I was finally discharged from the Prof. in the summer of 2010. It was the happiest day ever. After 5 years of treatment I had found something that worked. I WAS ME AGAIN.

It wasn’t until the beginning of 2011 that I began to have problems again. The pain around period time was coming back – I would bleed for weeks on end and sometimes this was very heavy. Sometimes as heavy as it was at its worst point (imagine, a super plus tampon having to be changed every 30 minutes for days on end). I was exhausted from it. But then it started to clear up again. All was good. Until the sickness arrived. This started around 4 months ago and is still present though not as severe now. I couldn’t eat anything because of the nausea, I was having terrible hot flushes again, my acne was back to its normal self and I would wake up with the pain from it in the night when my face brushed on my pillowcase. I had every symptom of pregnancy going but 3 tests eventually made me believe I wasn’t pregnant. I started to have heartburn which the doctor told me could be a reaction to my body being upset over all of this. The mood swings were back full force and I was so emotional, I would sob for hours every day.

And now, it’s still there.

Now, I’ve been referred back to the Prof.

And now, I’m so disappointed with my body and what it’s made me become, that I feel useless.


Monday, 17 October 2011

Chapter 1

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I've always hated how pretentious blogs can be, and yet I now find myself turning to them as a source of therapy. A way of venting my frustrations and sharing information on something that affects my body day in, day out.

I have endometriosis. There, I said it. It's out there for all to know.

I'm sat at work drinking a cup of tea trying not to wince at the pain I'm feeling at this very moment and yet it's my secret. No one in this room shares in this knowledge. I sit here silently and in pain.

My story is long and complicated and has no end... And, being my most positive self, I see no end in the future to the pain and sadness this disease brings with it.

I want this blog to be a safe place to release my feelings and help others to realise what endometriosis is.

And so, I will begin my story...