Provera... Again...

Well... I don't really know what to write about today. But I wanted to write nonetheless. I am about 6-8 weeks into my new course of Provera... (Again) but on a higher dosage. And my goodness some of the side effects are very apparent already!! My appetite is very up and down at present... Sometimes I don't want to eat at all, then I can eat and eat and never seem to be full... More of a binge eat!! Lol. I don't eat obscene amounts of food, but a large amount for me I guess. Also having a major spurt in the chest department!! And that is something I really didn't need in the slightest!! Lol. Already being an e/f cup... I have now jumped up to a g cup! And still only on a 34 back. So as you can imagine, I am terribly too heavy at the moment. I am hoping I don't increase any further, as I fear that my small stature of 5ft3" will not take anymore, and I will collapse under the weight of my chest!!
One of the other side effects, is an effect on ones sleeping pattern. And this I am definitely noticing. I have suffered terribly with my sleep for years. And whenever there is a med I take that can have an adverse affect on sleep, I am pretty much guaranteed to get it. I don't even read the side effects anymore, until I start to notice things. Like sleep, appetite for example. And then I investigate them. I don't want to put all the side effects in my head and then psychosomatically develop those side effects.

At least the first few weeks are out of the way which are generally the hardest with a new med. once adjusted into my system fully, things should be alright. Fingers crossed!!

Xxx

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

Good news!!..... But.....

Well, I had some good news this week. Which was actually great to hear!! I attended a job interview for a home working position... I had to travel great lengths to get to the interview, which is indeed somewhat ironic for a home working position!! :-)
But, nonetheless I was contacted the next day to be offered the job! However, there is a down side. As I have mentioned before... I am hoping to start college and train to become a counsellor - I want to specifically work with the women who suffer with Endo. I can get funding for these courses, because of my ESA benefit, but only if I do work of under 16 hours. They want me to work 20! And I am stuck as to what to do I really am...

It is my great dream to become a counsellor, and I think I could really make such a difference to the lives of so many women... And so because of this I do not think I can accept the position. I have requested that I work less hours, the decision is with them. I shall have to wait and see what they say.

Fingers crossed!!

Xxx

An update on my surgery....

Well, one and all - it has been a while since I last wrote on my blog - I have been somewhat lax... I underwent yet another Lap surgery a few weeks ago. 6 months after my last lap...
I was really hoping that this surgery would be the one to get me back onto the road of reovery and enable me to get some of my life back in the way that it was before. Alas, that was not to be the case...
My surgery was scheduled as a day case, and the hope was that the endo that was there would have reduced with the 7 months of zoladex I was put onto again, making things easier to remove. The plan was to laser it all away - pack me on my way and get recovering.
Things however - were a lot worse than we all believed they would be. My uterus was stuck to my pelvis first and foremost and so it hat to be unstuck - a very painful experience indeed!! Waking up to being on a morphine drip scared the hell out of me and I really thought that must mean that some serious work had been done. Oh how I wish... My endo is now deep infiltrated, and has continued to worsen whilst on the zoladex, they were unable to remove the endo. I need excision of the endo as opposed to just the laser removal and I am also in need of a bowel resection, as the endo had greatly damaged my bowel function. Which I have greatly experienced for the last 2 years. I am being referred to an excision specialist where I will have to under go a laparotomy and bowel resection. At present I dont know how long this referral will be and when I am to anticipate this next lot of surgery.
I was heartbroken when I saw my gynae following the op - so much faith had been put into this operation, and my faith was dashed. This is another reason it has taken me a while to update my blog, as I have been trying to come to terms with everything and process it all. My plans are somewhat on hold.....
I have been given an appointment with the pain clinic and i cannot wait for this!! I am hoping that they will be able to give me some pain relief that will enable me to function and be able to do more than I currently am. So fingers crossed for this!!
I will keep going and keep strong, putting faith in my team of doctors and that things will get better. I have to believe they will.... I will always have hope. x x

My First Reiki Experience:

This week, I went to go and see a dear friend of mine who performs reiki healing. During this time of my illness and my treatment I am willing to try anything and go into things with a very open mind indeed.

I had never had hands on reiki before – but Kalie had performed distance reiki on me a few months back. And the results of that were quite amazing.

For the distant session I was required to lie down and home and relax and, allow myself to switch off and remain calm and quiet. With Kalie her sending me healing vibes I guess you could call it. Kalie was able to tap into symptoms that I was suffering with that I had not previously told her about. She felt the sickness I was getting, the nausea that was constantly there and also the very specific location of pain I was experiencing on a day to day basis. When the reiki was being performed I could literally sense the healing being sent to me. My sickness that night was totally removed. It was in fact the first time in about 3 months that I had not been sick. This all in all was an astonishing result and to be honest, not one that I was expecting at all.

Based on this and my own need to do all I can to help my own medical condition I agreed to see Kalie one to one for some hands on healing. This, I was very much looking forward to indeed.

Before the session begins, Kalie asks what it was I wanted to get out of the session and what I mainly wanted to achieve – for me it was about relaxation and being able to deal with the pain. If my pain levels were indeed reduced at all that would be a bonus. So, I don’t feel I went into it expecting huge things.

Kalie wanted to focus on my head area and then feel where she was drawn to heal. It is a hand’s on process – and I was fine with this. I do not have an aversion to being touched at all. And if it was to get the results that I experienced last time – then I was definitely game.

The session began with my lying on the treatment bed. Very comfortable I must say! Curtain drawn, soothing music played and incense burnt – the entire scene was set and I was in the correct frame of mind to begin.

The key here is to relax yourself and to let your mind become open – and this is what I did and I am grateful for it – as the experience was second to none.

As Kalie’s hands were placed on my head I could feel the warmth coming through from them. Warmth, that rippled through my body and settled in certain areas. From this point I was totally relaxed and totally engaged in the experience.

Without someone experiencing it for themselves it somewhat hard to describe… but I will try. I felt as if my entire mind was being cleansed. As if my mind was being massaged, washed and totally cleansed. From here my mind was so open that I began to visualise many things. These stemmed from bright colours of yellow, orange and green hues to shapes. Mainly I saw circles, and three dimensional diamonds spinning on an axis. I also envisioned scenes that I have never experienced myself and yet these images were coming to the forefront of my mind. Snap shot images of an elderly woman, a family on the beach – but not seeing the faces just literally the feet running around having fun. The images were serene and relaxing. Every image I saw flowed through from one into another quite naturally and smoothly. My mind almost eager with anticipation as to what I was going to experience next. I put this experience down to the healing and the cleansing that Kalie was able to send through into me.

At times I could sense myself naturally pulling away from the trance like state I was experiencing – and I was alerted to this by my breathing. The moment I became aware of my breathing I had to relax myself again and draw myself back into the healing state.

The heat that I felt from Kalie’s hands was felt in my own hands even though they were not the subject of attention. It was an incredible feeling. The warmth radiated through my head in a soothing way in into my back which is one of my main areas of pain.

When Kalie focused on my stomach area – which is another of my areas mainly affected with the pain – I could sense her drawing the badness and the pain out of my body. It was almost as if she was having a tug of war with my body. My body wanting so much to hold on to the badness and then Kalie literally at the other end of the rope pulling it away. As things progressed I could feel almost a ball in my abdomen that gradually got smaller and smaller as Kalie pulled more out of my body.

At the end of session I felt really enlightened and invigorated from the experience. The main effect that I clearly felt was on my mind – it literally had been washed and dried and was in a new state from whence it started. I felt a renewed focus and a new ability to see things with clarity that over the time I have been dealing with my illness has gotten clouded.

Kalie debriefs after the session and explains things that she felt about me and what feelings and emotions she was able to pick up on… of which were spot on. Feelings that I keep hidden from the populace and yet she was able to see through this and get right to my core and understand me. She is able to give great advice on how to heal yourself from an emotional aspect and how at times you need to focus on yourself. This for me is an aspect I always fall down on… I help others before I help myself. Frome here on in I will ensure that I take the time out for myself and work on my inner self.

The entire time that I was with Kalie and in her presence I did not experience a single hot flush – which considering with my treatment they occur every 10 minutes was a huge difference. What will stay with me long term is the focus that I now have and what I can do to help myself with my illness and how my emotions play a bit part to my coping and dealing. Also the fact that I am able to have such a positive and spiritual experience has shown me that there are avenues out there away from medication to aid in my recovery and help me to deal on a day to day basis.

Reiki with Kalie is now a process that I will continue with – even past my recovery……

A new motivation...

Well, this weekend I have attended the information event held my the Endometriosis UK charity. And what a weekend it has been. Very tiring. But I have enjoyed every moment of it.

I loved being able to meet so many women going through the similar situations - but different at the same time. All women supporting one another. And the strength of all of them is astounding.

There were different sections on endo, discussing the condition itself. Pain management, surgery and the different treatment options available too. Even being 10 years diagnosed I still found out so much. It really was a someway overwhelming weekend.

I have never been surrounded by so many women suffering with Endo. It was something that held me in awe for a few hours.

I have found a renewed strength and focus on my mission to raise awareness and fundraise and to he both guide as support the ladies out there suffering with this condition.

It was a very humbling weekend. One I would recommend to anyone!!

Xx

Anxiety:

This week has really been so very full on... that I was hardly surprised that I suffered an anxiety attack. I have not had one for about 6 months... and it was a very bad one indeed. My entire body tensed, I was shaking, I was sick, hot and cold sweats, heart palpatations... the whole show. Followed by not being able to sleep for a very long time after - despite feeling exhausted.

I used to suffer with them an awful lot, and previously have been on Propranolol for them. However, because my Amitriptyline is now such a high dosage and the Propranolol doasge is also high... I cannot take them together... So, I pretty much had to ride out the storm. With cold flannels, ice water and anti semetics... All in all not too bad. I should have listened to the warning sign migraine on Monday - but me being me.. Powers on through as ever.

I awoke this morning feeling really sore and stiff and my muscles were aching terribly, so my resolve today was to remain at home and rest as my body is crying out of it. I havent been particulary over active, i thought. But each day is coming with a task that is somewhat taxing on my body.. hospital appointments, doctors, dentist etc etc... All of thee activities build up.. Until my body just says NO MORE!! And that is what happens yesterday. The rest of my weeks is pretty full on... So today is about me!!

My Fundraising Page:

Well I have completed my Fundraising page for my mission to Raise money for Endometriosis UK.

It can be found here: http://www.justgiving.com/Andrea-Hearn

Please sponsor me for my first activity which is running the Big Fun Run 5k on 8th September 2012

xx

A little time for me...

Living with Endo... It can actually be very difficult to take time out for yourself... Each day seems to be a routine of medication, physio and countless other tasks... Well this week I have thrown caution to the week and am investing some time in me!! :-) and I can say it is most certainly needed and feels great!!

I have taken a little trip away and am enjoying being somewhat indulgent with my food and with my own pleasures.

I have been enjoying the spa... Am going to have a massage and been eating stunning food!

As ever the pain is there non-stop... But it makes it easier to bare when you take this time out for yourself. I would really really recommend it!!

Set backs are tough...

Isn't it amazing how used you can get to feeling somewhere to normal... only to be shot right back down again once back into your prime!

I have had two really good weeks. Actually felt like a regular woman again... I was being social, able to see friends and family... managed to venture outside on a little trip once or twice.. but as always once I get used to how things are being - on a nice level - a flare hits and brings you right back down to earth with a bump!!

Maybe it is because during these "good" days I try to do so much with my time - that I bring on the flare - or end up exhausting myself I do not know... but either way - it sucks! big time!

I awoke this morning in agony. The feeling in my toes kept on going - as my trapped nerves were definitely trapped beyond recognition today! I have also been bleeding on and off for 2 weeks now. And today it was accompanied by abdo pain too.

Bleeding whilst on Zoladex is never really a good thing at all... I am wondering now if the treatment is working at all. If it does not work - I do not know what that will mean for my next surgery... I am due to see my gynae at the end of the month - only another 2 weeks to go and I will be there and will be ready to ask all of these questions again. Especially why I am bleeding...

Anxieties are at a somewhat high at present...

Back to the hot water bottle. Hot baths and my cosy bed!

Love to you all
xxxx

Endometriosis Awareness 2012: Wait Till You See my Smile

Fighting the fight...

There are definitely some days which are easy to deal with and those that are not... And this week has definitely been a combination of the two!
I generally pride myself on being strong and being mostly able to cope with all that is thrown at me... However we do all have our weaker moments and those times where we feel very low and very alone. I am under no misapprehension that this is purely down to my endo and I also know that I am not exclusively alone in how I feel.

This week for some reason that I am yet to discover, those daily things that are generally such a walk in the park for me have felt like I am climbing a never ending mountain. I have felt very low and indeed very emotional. There have been moments where all I can do is cry at the hand I have dealt and where my usual sense of strength and of coping have simply disappeared.
Today however I have woken up feeling a little bit more like my old self. I little bit of drive and spark is back today. I am thankful to see it return.

It is very easy with endo so sit there and cry and curse the world for all you are dealing with, it is very hard to face it all head on and still continue to carry on and to fight.

Fight, is my goal and fight is what gets me through this illness. My fighting spirit is what has led me to create this blog, what has led me to create these information videos. I want to help others suffering as I am and raise awareness for this condition. My fight is back and so I am now back onto my mission!

I know that there will always be those days where I feel like giving up... I guess for me the thing to do is embrace those days have them and then move onto the next. The feelings of hurt, anxiety and loneliness will always be apparent with this disease, I will however not allow them to control me. I will not let this disease dictate how I feel every day. This disease commands to much attention already. I will not give into it implicitly.

So for now, my fight has resumed. My next video has been completed and will be up in running in a moment. From here on I will resolve to let the dark days come, deal with them and move on... My spirit is tougher than that!

A
xx  

Daily Mail Article:

A great article. Make a change to actually see some space given to Endometriosis!!

http://www.dailymail.co.uk/health/article-2117325/Why-seriously-ill-women-misdiagnosed-IBS-GPs-mix-endometriosis-Crohns-cancer-.html

Benefits and Physio:

Well... What an eventful week it had been

I have had my ESA application accepted. Which is of great relief! My SSP from work ran out on the 15th March, so from them I would be receiving nothing from my employer until I return to work.

The ESA has been approved and I have to go for an assessment at some point to determine the level I receive and whether or not I will be given disability living allowance.

It would be very useful if I can... As then I could increase my physiotherapy on my back and my spine and hopefully gain more movement without being in total agony the next day!!

My physio has been going quiet well. Into my third week now. My mobility is getting much better. In terms of the stick usage is less... But my goodness it hurts so very very much! My back is so stiff and sore. Along with my hips locking in position. It's not fun.

I have been given more exercises to do... Which are very much Pilates based. So I do enjoy these very much indeed... Trying to find my yoga mat though... Which seems to have disappeared!! Grrrr!!

I'm still taking my strong meds for my back as the inflammation is still very much there... But at least I can see the benefits of everything a little bit more.

Here is hoping for another good week!!

Andrea. X x

I went through the menopause at 13...

http://www.mirror.co.uk/news/real-life-stories/i-went-through-the-menopause-at-just-13-748272

An interesting read I think...

The Endo Diet,

I don't know if any of you have ever tried the Endo diet, or even heard about it... But I have been doing it for about a week now.

When I first heard about the endo diet... I was very unsure and unclear as to what it is, or indeed how it will help me with my endo and all of my pain. However, I am willing to try anything at the moment... and if it is said to help some - then I am there to try!!

Well, the diet itself is very restrictive. There is an awful lot of foods that will contribute to the pain. But I have been sensible with it. I am gradually breaking myself into it. So as to make the process easier and hopefully stop me from falling off the wagon with it so to speak!!

This week I have removed my Pasta, white bread and white rice. Which was relatively easy. I mainly eat Brown rice anyway. Removing pasta long term I know will be hard... and already I am missing my freshly baked white bread. I have also removed the red meat part of my diet - this was easy as I am not one to eat much in the way of red meat. I will continue to eat chicken and fish.
I have increased my consumptions of fruit and veg and pulses. I love fruit and veg any way so that part was easy I have just been increasing pulses, kidney beans etc... in replacement of potatoes and bread - where needed. I am also cutting down on the refined sugar aspects... my sweets!! Which since being off sick has been my go to release.. so this is going to reduce week by week. Not that I ate huge amounts of them... but it is still best to remove. I do miss honey in my chamomile and lemon tea though. I have also removed convenience food. So the TV dinners and things like that. All my food is being made by me from here.

Already with these changes to my diet, I feel less bloated and swollen. I know this is probably down to the heavy carbs removal... but I do feel less heavy so to speak. I know it has only been a week, but if i notice differences only a week in then surely I can notice more results the longer I keep at it.

Being an ex gymnast and a gym freak! I have always thought carefully about what I eat, but even I will need to make many changes too my diet. This is why for me it is best to make the changes gradually. I am hoping that over time I am going to experience less pain and less swelling etc... All the time I am on Zoladex my weight is increasing even eating less. So if I manage to lose weight great... but that is not my main resolve. Getting my body able to battle with endo through the fuel I give it, is my main objective.

I am making sure I eat regularly and actually take the time out to prepare my food and sit down and eat, it does feel like I am eating more than usual with this. But what I am eating is better for me. Caffeine has already been removed from my diet  i did that months ago and I am so much better off without it...

So here is to another week... Fingers crossed!!

xxx

Physio Session 1:

Well, I had my first physio session yesterday and have a lot more info as to what has been the issue with my back. Also as to why my bowels keep shutting down.
Basically the the muscles in my back have seized, locked tight and have pretty much stopped working. I also have some nerve damage from my Endo, and my surgeries.

All of the muscles are so tight it is that that is making mobility and general movement so hard. But things can be eased and hopefully back to being fully functional again.
Where the muscles in my lower back have been not working this is what has cause my digestive tract to be so slow or stop fully, as the muscles have not been working to move things along. Resulting in shut down. This is why I was having to take so many laxatives every day.

The nerve issues is what is causing my lack of sensation in my back, bum cheek, thigh, leg and foot. Some have got trapped within these muscles and some are more on the damaged side.

I am going to need about 8-12 weeks of therapy to get things going again. I have exercises I must do at home 3 times a day. Within my pain threshold to start and then over the coming weeks - will go through my pain threshold to build them up and make them stronger.

My physio was really very good and explained everything so well. I am really lucky. He will also do some deep tissue work next week to aid the loosening of the muscles... I know that is really going to hurt! But I also know it will help.

The main reason for this happening is down to my Endo it seems... all the inflammation and being hospital so much, being laid up seems to have had this effect.

Well at least I finally have an understanding of what is going on... and if I stick to my plans as given, I should see the benefits gradually. I know I am a bad patient generally and I do expect recovery quick and I tend to push myself to recovery quicker than I should - but I must be careful with this. I don't want to cause any more damage or anything that this going to cause long term pain. I will always have some nerve trouble. Alas, once that has gone, it is pretty much gone... But mobility will be returned!! and the walking stick will be banished!!

So all in all a pleasing day... if somewhat exhausting!! xxx

A mad week!

Its been a few days now since I was last on here... Last week was such an emotional week I can't believe I managed to get through it all!!

I was in urgent care on Monday with my back - had to have a spinal injection... it is looking like nerve damage from endo and possibly a slipped disc!! MRI waiting. But, I do begin physio on tomorrow. So fingers crossed I will have some much needed relief.

On Thursday last week I had to travel into London, to my place of work to meet with the company doctor and my line manager. Obviously I have been off of work since last August. So the company doctor really needed to see me. He was wonderfully understanding and sympathetic, which I was so amazed about. He was shocked to see me in such a state. I had to use my walking stick and I was in so much pain. But he does not want me to return to work until my next surgery in June... So I wait until after that to meet with him again. It is so refreshing to have a company be understanding. I really was not expecting them to e so - after hearing such horror stories about them when people are sick. But it has been a huge relief off of my shoulders that's for sure!! I an rest easy knowing I still have a job.

Alas, my sick pay in the form of SSP runs out tomorrow - so I have to apply for benefit. I have never been on benefit in my life and am somewhat embarrassed about it - but at the end of the day - I need to eat,live and pay my bills - so I don't really have any other choice. It will not be forever - as I know I will go back to work as some point. I hope I can still do the role I was employed to do.... fingers crossed!!

The start of this week has been OK ish... Monday I saw my own GP to get my updated sick note and more prescriptions. I was also accepted to become a helpline volunteer for Endo UK charity and I have also been accepted fr my equality and awareness course. So Monday was such a positive day. After all of the emotion of last week. I really needed that lift!!

Tuesday I am afraid, I was a bedridden day. Moving only from the sofa to the bed and back again...

Today has been better, I have been out of bed... doing the family washing and such as like...

My laptop is being annoying!! I have had to order a new microphone - as I cant record video 4 without awful background noise. So video 4 will be a little late. I am sorry about that!!

Well I think that brings us all up to date from here.... Physio tomorrow - fingers crossed!!

Love to you all!!!
xxxx

My back really really hurts

Well what a few days it has been this week. My sciatica is nestling in big time and certainly making its presence felt... It's so deep in my back it really it.
Today I have struggled with walking, standing and sitting and so have spent most of the day in bed. It's really difficult to describe the pain that occurs its very much like a lightening bolt shoots through my back! And my butt cheek. Today it has not been in the hip as much... Son that's something.
I had a lovely bath though this evening it was nice and relaxing. Thank you Elemis!! Lol. Lavender elixir was truly great on my back. I just need to have that feeling all day every day!! :-)

Anyway I write this at 2.40 am as I seem to be unable to get to sleep tonight. With the amount of meds I am on I shouldn't have a problem... Not at all... But it's not happening tonight!! :-( here is hoping it happens soon.

Sweet dreams one and all. X x x

New Project!

I have had a thought process about how else I can raise awareness about Endometriosis...And I do believe that I have actually found a way!!It is in the very very early stages and I cam still trying to get all ideas down on paper and into a format that actually makes some sense... But I believe that this idea could really really work!

I have been speaking to others and they agree that if done correctly this could turn out to be a great thing!!

So here goes... I know that I am being very evasive at the moment and not giving much away in the detail at all!! But I will announce very shortly fear not!!

Love to you all!!

Andrea
xx xx

My little update... While I am high!!

Ouch my back!!

Afternoon on and all I hope that you are all well...

Following yesterdays trip to the doctors it turned out I have very bad sciatica. This is what has been causing all of my pain in my hip and lower back. Along with all the numbing feeling i have in my toes and in my butt cheek...

I have been given Diazepam and Naproxen to take with all my other meds, so I have a right little cocktail going on now!! I spent most of yesterday very very lucid and not really aware of much. As I am already on 100s Tramadol and Amitriptyline. And oxycodone when things get very bad.

I am glad that I now have a diagnosis and I am at least aware now what has been causing all of this hip and leg pain.. I had just presumed that this was all of my endo pain. It may have happened during surgery. I am trying to think how long I have suffered with this... But th months are so blurred of last year - with so many hospital admissions! But at least it is being treated now. That is a good thing for sure!!

Fingers crossed over the next few days things will get easier and I can start to move around. I did post a video of me explaining what had happened at th docs... I was so very high at the time!! It has made quite a few people laugh. Which is great!! Have a look see!

Love to you all.

A
xxx

Video 2: What is Endometriosis

Sickie Sunday...

I really am looking forward to going to the Doctors tomorrow it is untrue. I need to speak to someone about this pain. It is not getting any better at all... only worse from all I can tell. I am hoping for a few answers about what I can do and hopefully some stronger pain medication.

What I am suffering with at the moment is pain within my hips and my right leg.. I seem to have some trapped nerves and some nerve damage... which is causing me to lose feeling in my right leg, swelling of my right leg and feelings of heaviness within my right leg. This pain is radiating all through my hip in to my lower back. And really is most uncomfortable.

At the moment I am not travelling very well at all and am suffering with motion sickness which really is not nice. I went to see my parents yesterday and spent not even an hour in the car; five mins into the journey and I had terrible nausea. Coming back home was just as bad and I was very sick when I did eventually get home. So I am not feeling too jolly today unfortunately.

I had a horrible nights sleep.. So I used the time to my advantage and recorded my new blog. My video is uploading as we speak! So that is definitely something to be happy about!

Love to you all xxxx

Bad back...

I am really struggling with my back today. I am in complete agony. I didn't sleep very well at all and so have just woken up. But I am finding it very hard to move and walk around. Even sitting is causing great pain.
I currently have nerve damage and trapped nerves in my back, my right thigh, and around my right hip. This causes pain to radiate down my leg and swell. I also lose the feelings in my toes quite a lot of the time.
I have been trying to manage with the pain relief I currently have... But it is not working very well at all... So I am going to see my GP. I have an appointment for Monday at 9am. I need something doing. I don know what can be done to be honest. But for the moment, stronger pain relief would be a great start.

As for getting through the weekend it will be a case of many hot water bottles, tens machines, pain killers and plenty of rest...

Xxxx

The day after...

Well, I posted my blog yesterday as you can see in the post below... and I have had such an amazing and positive response from it I really have. Iknow I am on the right path and I hhope thatover time I can gradually reach more and more people. Those that suffer and those that dont. I want to make people aware allowing them to become more compassionate and understanding about the disease.

In terms of me... well things are tough at the moment... pain meds seem to have stopped working. My HRT is making my menopause symptoms worse and I am experiencing awful back pain. Im back on the Targinact now so hopefully that will ebb the pain somewhat...  I must go back to the doctors again to go through all of these issues... I should have a permenant seat there!! lol

Take care one and all
xxx

My First Video Blog: Who am I?

Currently...

So it has been a busy couple of weeks really. Lots has been going on. So let me bring you all up to speed...
I have had my follow up appointment with my gynae following my surgery and have had all of my results. It turns out that my endo was very widespread and it was not possible to remove it all in one surgery. It would have caused far too much damage to attempt it all. So half of the endo has been removed and the rest will take place in a surgery I have been scheduled for on 13th June 2012. I am not happy that I have to have more surgery. This will mean I have had 3 surgeries in 18 months. That really is very close together. All in all my endo was so widespread. Both my ovaries were covered, and had to be fully lasered. My bladder is also covered, along with it all along the front of my pelvis. They removed the chocolate cyst they found also; it ended up being 10cms.
I don't know how to feel about it all if I am honest with you. It is upsetting of course that things have grown so much. What is surprising is that  have been on non stop therapy for about 3 years and still the endo had grown. What will they do after the surgery? How do they attempt to keep it at bay?? The only treatment that has had results is Zoladex and i cant be on the permanently. They now only do it for 6 months...
I am thinking whether to discuss things like a hysterectomy with my gynae. I have tried to have these conversations before - but it has been dismissed. But surely I have more of a case now if I am having to have so many surgeries so close together? I surely cannot keep having so many surgeries its not good for me. It causes untold problems when that happens over and over... I know that a hysterectomy is not a cure at all. But would it not give me some relief? I need t go through this with my consultant on 30th April when I see him again...
There are so many things to decide and plenty to think of....

xxx

Tough Day

Afternoon ladies... Not feeling so great today. Very sore, very stiff and ache all over. Back is really just giving out on me today... I have had two really good days and paying for it now definitely.
The parents have just popped over for lunch, so it was nice to see them. But now I really must get back to work on the Vlog and the Blog... both which have fallen a little bit behind!
I hope all ladies are well and feeling strong... Love to you all! xxx

Progress...

Well after spending hours yesterday getting my blog page to the way I like it... Today will be spent on the recording of my first video blog. I will post this on YouTube and the link will show up for all to be able to view it.
My first vlog will be a introduction into who I am. My experiences of Endo and where I am in terms of treatment.
I already have a list of weekly topics... So I'm already sorted for the next 4 months!! Plenty to keep me occupied and plenty of info there to give out to my ladies and my Endo sisters!!
If you do have any suggestions of things you would like to hear me talk about or post on my blog... Them feel free to leave a comment on my page. And I'll see what I can do!!
Xxx

A beginning....

Well, here is the first of my post on my new Endo Blog... I really hope that many people will find this blog helpful and informative. I want to spread the word of Endo and make people become so much more aware of what the condition is, how it affects women and what you can come to expect from having the condition.

In no means do I want to scare anyone at all. I will not be posting horror stories. But it will be true to life and hopefully full of information that we can all use and share.

Here goes....