December issues...

There is definitely something about this time of the year that makes my Endo flare beyond belief. Last year I spent pretty much all December in hospital and having emergency surgery... And this year I'm doing all I can to keep my head above water.

Today has been an awful awful day, had to resort to the usage of oxycodone - which I bring out at times of great need. I have a limited supply and I have to use ten sparingly as the doc will no longer prescribe them to me. S naturally I try everything I can first... Naproxen, gabapentin, tramadol... To name a few. When all else fails out comes the oxy. I hate when things get that bad. I can feel my body gradually wearing down and down, appetite has gone, bowel has flared something chronic. I just wish I knew what was setting it off again.

Last year I had a huge ovarian cyst that had to be removed and they ended up blasting Endo at the same time. I hope it is not another cyst as that made me so very ill indeed. Really do not what to be going through that again at all. Hopefully this is just a blip and things will improve... I keep my fingers crossed.

I am now back on Provera short term before I have my next surgery. Gynae put me on a stronger dosage than I have been on before... Not seeing the benefits as yet. But fingers crossed soon the effects will take. A little respite over the holiday season will be very much appreciated!!

All I want for Xmas is a pain free day!! Lol. Please Santa I have been a very good girl this year.

Until then... I will keep smiling and stay fighting as ever!!

Love to you all.
Xx

Gym time is good for you.

This week I am going to try and get back to gym a little bit... I really really miss the gym so much! And I long for a nice swim or a run...

With the problems I am having around my heart, I have to be careful with the cardio things. With a resting pulse at 117 bpm, I am not allowed to over-exert myself until my ECG has Aiken place. But, mild exercise. So walking on the treadmill. Light cycling. Small amount of swimming is ok. I will naturally listen to my body and not push it too much.

Exercise makes me feel so much better about myself. Plus it is good for the pain... It is tough when the pain is so bad you don't want to move at all!! But it does help to keep moving when you can. I am no where near the standard I was once at. But keeping myself fit and healthy is all
I ask for at the moment... So David Lloyd near me have an amazing gym!! All the mod cons and a stunning health suite too. With sauna and steam. So I shall be investing in a membership there.

Can hardly wait!!!

Give into a little indulgence...

There are those days when I want to just say hang it all... I am going to be self indulgent... and this is one of those days!!

Every now and then, I want to blow off a little steam and simply indulge myself in the things that I should not eat or do... I want to drink a gorgeous bottle of red wine, I want to have rich food and ice cream and I want to dance the night away!! Sometimes, you have to listen to your body... when it is telling you to slow down and when it is telling you to indulge.

Now, I know very well indeed the sorts of things that set my body off, and cause flares, and 90% of the time I am such a good girl and I do everything I am supposed to. But tonight... I am going to eat something really tasty and naughty for dinner. I am going to drink a couple of glasses of red wine. I will leave out the dancing... well maybe around my lounge who knows!! lol.

There are times to be good and there are times to be bad. After all - what is life without a little fun! I now what to expect tomorrow and so will be sure to take all the necessary precautions... But for now... Let the fun begin!!

Xx

A waiting game...

I hate to say it and I hate to be really negative... but the NHS sucks right about now!!

6 weeks ago I was meant to see my gynae, and find out the issue with the last surgery - and the next options. So my bowel resection and all the other info I needed. I was also meant to be starting a new form of treatment - which my gynae wanted to wait for 3 months post op before I started it. Allow the lovely zolly to get out of my system completely.
So.. the day comes for my appointment and I am ready and eager... Half an hour before the appointmet - I received a call saying that they had lost my notes and therefore my appointment was cancelled...

That was 6 weeks ago - and still my notes have not been found. They have lost over 10 years of notes. All 6 surgeries, all the doctors, all the medications I have been on and more importantly for me the results and info about June 2012 surgery. I was so upset that day, I could not keep it together. They do not seem to understand the emotional aspect of all of this at all.. It hit me hard..

So, I am still waiting to begin my treatment and still have no idea about my next surgeries or what went wrong last time. I am managing my days of 15 pills... A combination of Gabapentin, Naproxen, Tramadol, Amitriptyline and BuTrans patches. This is far too much for one person it really is an insane amount of medication. My body is crying out for treatment, and for something to be done...

I know I am in the worse stages of Endo, with my digestive system being attacked by it, but I need to see my gynae. I need to understand what it going on and what the plan is... Until my notes are found - I will be at a complete loss!

So I go on, I move forward and I do what I can. I have written to the Patient Liason Service and I contact the hospital every week. They still refuse to see me without finding my notes... I just really hope they are found. I dont know what I will do if they are not found... Lord only knows.

FINGERS CROSSED!!!

XX

Gabapentin...

Well ladies... It has been over a week now that I have been properly on my new dosage of my neuro pain medication Gabapentin... And all I can say at the moment is bleugh! They are making me feel quite wretched at the moment and not noticing any plus sides at all. I know it's early days and it will take prob about 6 weeks to 2 months for me to feel the benefits but that's such a long way away!!

I am feeling so tired all of the time. My memory is shot to pieces... I seen to spend half the time sitting there or wandering around trying to remember what I am meant to be doing!! Lol. Very frustrating.

The worst effect I have had so far has been the night terrors. Horrid, evil, violent and vivid dreams. The kind that give you the feeling that stays with you all day. I have done some research into this and it's not unheard of... Around 1% of those on Gabapentin have recorded night terrors. Although I am sure that number could be higher with unrecorded people. The worst thing is I am so drugged up that I have been unable to wake myself from the terrors and so they go on and on all through the night. I am hoping that these effects wear off soon as I really don't think I can cope with that every day. It's been bad enough already!!

It's now only 11 days to go until I see my gynae. I cannot wait to be fair. I am eager to hear about this next bout of surgery, when and where it is going to take place and how long I will be out of the loop for. Counting down the days!!!

Here is it...

So my concerns that's Zoladex treatment had brought on the real menopause, ended up being unfounded. With the appearance today of my first bleed since the end of my course which ended in May. Somewhat late in arriving. But now it is here I know where I stand.
Now I know that the treatments and the surgeries made no good whatsoever. The pain I currently have has gone through the roof. I have been sick, I have upset stomach and the bleed is horrid. I really am feeling so very low.
I hate the way that Endo has made me feel like my body is not my own any more. Like I do not own my own body or indeed have any control over it in the slightest. It seems that no matter what I do... It makes no difference. Nothing seems to ease the pain.

I need to remain focused and continue to be strong...

Sponsor me???

Not long now peeps, until I run 5k in the Big Fun Run. I am running in the name of Endometriosis UK. I am looking to raise as much as possible, so I would really love if you would sponsor me. This charity does amazing things and the more we raise the more women can be helped.

My page is at: www.justgiving.com/Andrea-Hearn

As little or as much as you can spare. Everything makes a difference.

Love to you all. X x x