Goodness, I really should update this more often. My only excuse is that when you go through all this madness, it takes a lot of energy to sit here and go through it all again when all you want to do is distract yourself as much as possible.
I wish I could update this with happier news. Me, being me, it's all complicated and silly.
Now my biggest challenge - how to summerise a whole year. I can't really so I will have to skim through a lot. As I sit here though on my latest new medication with my new batch of side effects I feel its important to get things a little more documented.
Mirena Out (Jan 2014)
After much debating with my brain, I decided to get the Mirena Coil taken out. I went to the doctor and the whole procedure was barbaric and horribly painful. Now every doctor I've seen who's had to have a look 'down there' is always really shocked about how much pain I'm in, some can't perform an 'examination' at all because I'm pretty much screaming and my legs go to jelly and shake like mad.. this isn't normal for peoples so don't be put off if you need to get the coil checked. Some people have it taken out under general anaesthetic and, for those like me, I can bloody understand why. It literally felt like she was ripping my womb out of my body. I was proud of myself that I'd got it out FINALLY.. free. I felt so much better for it.
Depo In (Feb 2014)
My next port of call was what to replace the coil with. I'd read a lot on the benefits of Depo injection regarding Endometriosis control and so I went for it. My GP asked me if I'd prefer to take a tablet form so if I had troubles with it, I could just stop. I thought I was being brave so I just went for it. Bugger the side effects. Then I saw the needle.. I honestly nearly chickened out it was so long! Then as I was bracing myself for some pain, quite literally in the arse, he said it was done. I literally didn't feel a thing. Now, I inject myself every day and it's a certain amount of pain, but he must have been a very talented injectionist.
I can't remember any side effects that stood out at first. No weight gain, illness, moodswings. It was great! Finally, I'd found something awesome that might be the answer to controlling everything and eradicate the possibility that hormonal issues were aggravating/causing some parts of my illnesses.
Legs-no-more. (March 2014)
At the beginning of the second month, one evening, I went to get up and my legs wouldn't.. work. They wouldn't take my weight or move as I wanted them to. They weren't numb or completely paralyzed, but they just didn't work properly. Nothing I could do would help. It was heartbreaking. I had no warning, I didn't feel any more unwell than usual. Then came the irrational tiredness, more so than I'd ever experienced. I almost couldn't breathe trying to get myself to the top of the stairs. I didn't know when or if I would get them back again. I could only sit or, if I had the energy, lug myself about on crutches which were incredibly difficult. No driving and being back to being completely dependent on my parents for pretty much everything.
Then one day they just... worked again. 'Nothing' could explain it. The only thing I could attribute it to was the Depo injection (at that point). I decided not to get another, just in case. *sigh*
It was all getting bloody stupid. Nothing made any sense..
Yet Again. (July 2014)
Come mid-July a repeat of the above happened. I couldn't believe it. Around about this time I decided to keep a better 'diary' of when things happen and what happens. I know this sounds a bit OTT but I have a memory of a goldfish now and I don't think it's going to get any better. So on 13th July the legs went followed by the strangled voice. Now with me, there is two very different loss of voices. Dysphonia and Dysarthria. Dysphonia, to me, is more of a constriction, like someone is strangling me and my vocal chords won't work properly due to compression. Dysarthria is when I can think the words perfectly well but when I go to speak the muscles and voice don't connect so I just make stammering noises, it sounds.. awful when/if some sound does come out. In this case, it was the Dysphonia. I know this is vascular related because generally if I tilt my neck in a certain way or put compression on certain veins (I can't do this for long) it allows me to talk perfectly and 'removes' the pressure. Dysarthria I can do nothing about. So. Both Dysphonia and loss of legs on the 13th, which lasted for about 10 days, and the voice only 3 days. They came back to life and then my period followed. 2 days into my period, my voice went back into Dysphonia mode for 4 days, on and off, which was the end of the period. On the final day, I had a horrible bout of IBS and that was that.
The following months mirrored this but replace the symptoms on the 13th for variants of leg/voice/pain problems. They all fall around the same time each month and follow the lunar cycle closely. Looking at it, the worst starts two weeks before my period, the period happens, then it ends in crampingness and pain, then repeat the following month.
Too many symptoms to mention really and that's not even going near the emotional side of things.
Gosh this sounds like so much moaning. I don't mean it that way.. Just got to get as much down as possible.
Endo Operation #5 (November 2014)
Anyway, just to be on the safe side I asked the doctor to refer me to the person who is meant to be Kent's leading Endo consultant. Well, when I went to the clinic I saw his registrar who couldn't perform the physical 'investigation' due to how much pain I was in. I was crying, my legs were shaking and I was a mess. He turned up, and he was a very kind and nice man seemingly. He suggested Zoladex but agreed to a lap. He couldn't understand the registrar's notes so he re-wrote them.
Pre-op was horrible and confusing - and very long. They didn't tell me what to expect at all and if I hadn't had accidentally gone back to the nurse's bit after getting the 'bowel prep' I wouldn't have known I had another consultation. I saw an entirely new registrar and she took her own notes. Oh and EEG lady made me strip to the waist - humiliating. Never been made to before (5 prev) and friend that's a nurse says its not needed.
Bowel prep was so awful that I only took half of it. Five hours in the bathroom - the cramping and runs weren't the worst of it although it wasn't pleasant. The vomiting and severe nausea was another matter. Never again! Certainly not 'that' stuff.
Now keep in mind, as directed, I hadn't been able to eat 36 hours prior to the operation so I was beyond hungry. We checked in just before 8am and waited... and waited... and waited. Uncomfortable chairs, awful television. It literally felt like I was waiting to be processed. Not at all like the experience a fellow lap patient experienced (I read her blog and it was an incredibly positive time where she was given a room, told what was going on etc). We were told nothing. Saw the registrar and another doctor and they checked I'd done the bowel prep etc, then sent me back. No more information on timings. A nurse came and got me later and took me to a side room, measured me for the stockings and filled out my paperwork using ANOTHER PATIENTS questionnaire. Had she not left the room and I happen to notice she'd put down that I had had my tonsils out (which I haven't) it wouldn't have been picked up on. Not only is this slightly wrong, it's a breach of patient confidentiality and they're not actually checking the name on the questionnaire matches that of the one having the operation. Oh well. Yet again, no time frame was given.
Also - visitors, not even one, can come further than the waiting room. You're not given an idea when they're meant to leave and you won't see them again until they pick you up. For a nervous patient, this is terrifying. I understand why, but it's not good. I decided to bite the bullet and told my parents to go home, I didn't want them stuck there in those horrible seats as well, I didn't want them to go but it seemed right. So there I was, on my own and there seemed to be a girl near me who looked very unwell. It wasn't until hours later another nurse came by and said I was about to be taken. It seemed both me and the girl had been waiting for the first operation to finish, I was next and she was maybe last. However, the nurse took her aside and told her that there was another patient to go (me) and she became very upset and made a phone call. I don't know what happened to her in the end but for god's sake, surely people can communicate and work by some type of time frames to let patients know what's going on?! I felt so bad for her. I hope I was mistaken.
So, the nurse came to take me down corridors that didn't even have lights on and were empty. She asked me to get changed into the gown and took me further along into yet another waiting room. Cold and empty with no people about. All very sterile (I guess a hospital should be!). One half of the room for females, another side for males.
The team that put me to sleep were really kind and reassuring. Positive point. Next thing I remember is pain from the thing being yanked out of my neck (it really hurt!), then violent shaking and one of the nurses telling me to stop shaking.. I mean.. sure because I can really control that!
The nurse on the ward was very nice. I saw one girl had her boyfriend with her so I wondered why we were told no one was allowed in there with you. All I remember thinking was "I don't care how much it hurts, I'm going home asap!". So you need to eat and pee. Both done I was ready to get going. Luckily my parents called the ward at the right time, no one had called them after the operation at all to let them know things were ok. Parents arrived a little while later but were in the waiting room for ages as there's no one in the waiting area to actually let the nurses know they are there which is utterly ridiculous. Its a nice clean hospital but there are some serious communications issues that really add stress to all the visits I've made there relating to this issue.
Shipped home with no painkillers (all that was on offer was paracetamol).. what a joke! Not like any of my other operations. Certainly will be saving up for private treatment should the need arise in the future. Weird thing is, yes all operations are different, but this one couldn't have lasted more than an hour based on the time I went in and woke up. My previous one was 4-5 hours long and very thorough. Having such extensive stuff done in the past and them finding 'nothing' this time was very.. odd!
I saw no mention that the things (on my theatre letter) of the areas I'd asked to have checked, had been checked. I am yet to write to the consultant to see if he can clarify this problem before the next consultation.
So - not a fun experience at all on that front but we can 'assume' endo isn't the culprit for everything. No easy fix either way! It's well past 3am now and I need to get my head out of sad medical land and distract myself with happier stuff for a while. Will continue on tomorrow (I hope!)
Unless I get distracted for another year.
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