Thursday, 16 June 2011

Endometriosis: Doctor's need a wake up call...!!!

I've gone past the frustrated state I was in this morning. I've gone past the anger, the feeling that I would like to slap that Dr right across the face. Gone past feeling annoyed, wound up and livid. I'm now upset. My first ever blog was about how the majority of doctor's dismiss endo. Today it happened once again.. << Rewind to the beginning of last week (as I stated in my previous blogs), I started a new hormonal medication called Norethisterone to help with my treatment of endo. I am also on evorel patches to counteract the side effects that come with my treatment. Since the new tablets started the patches have not been working and my emotions and mood swings have gone right out of the window. So I arranged an appointment with my GP today for some help with 3 simple things..

1. A sick note to cover me for my time off from work this week.

2. Higher dose evorel/hormone patch to help me cope with the rise in side effects from the new medication.

3. More buscopan cramp tablets as the last few weeks i've been in agony and they only supplied me with a weeks worth last time..

As soon as I walked into the Dr's office, the first words she uttered to me was "You have 10 minutes." After having to wait an extra 30 minutes as she was running late with the last patient I wasn't too impressed but just let it pass. I explained what had been happening the last few weeks, pains, cramps and side effects. Answer - stop the Norethisterone. Simple yes? No. I then had to explain to her what these tablets actually were and what they were being used for, as prostap wasn't working alone it needed this to co-inside with it. If I stopped taking it I would be bleeding all day, every day, very heavy like before. I was then advised that irregular/heavy periods were not a symptom of endo and not very common at all. Ok.. left that go also. The next piece of advice she decided to give me was "I need to put up with some pain"...Oh My Gosh... At this point I wanted to slap her. I 'put up' with pain everyday. I have 'put up' with it for years! I always take my mother into every appointment with me, I have been dismissed so many times she always comes in now to make sure they listen to me. I looked at my mothers face when the Dr said this and knew instantly this wasn't just me being 'hormonal' and taking it the wrong way. My mother quickly informed the Dr that I go for too long without taking pain relief, because I hate doing it, and on a day to day basis she ends up shouting at me to take something because by that time I'm doubled over in pain, usually crying. I thought at this point the Dr would provide me with the prescription she had wrote and I could leave. Wrong. She then went on to ask me "Am I sure I actually have endometriosis and it's not just a bowel problem??"

So Dr, if it's not endo then I had a laparoscopy for the sake of it? I'm having prostap injections every month, being put into an early menopause, wearing hormone patches and taking pain relief tablets nearly every day at just twenty three just for the sake of it? I nearly blew. I normally have the patience of a saint. I'm quite a laid back person, don't take things too seriously if I don't have to, I don't argue back with people. But this time I really felt like blowing. My health I take more seriously than anything else. Why should I just have to 'put up' with things? Now I'm at the point I'm really upset. I've cried a little and cant believe I've let a doctor who knows nothing about endo make me feel this bad. I even started to think maybe I shouldn't have asked for those things? I should have just stuck it out...luckily my sense kicked back in pretty much straight away and I remembered what an endosister said to me yesterday:
"I don't care what HE says, what SHE says, or what THEY say. All I know is what I say AND I know my body best."

Wise words. How true this mantra is, I just didn't think I'd be using it so soon. I'm totally and utterly fed up. Why does it have to be such a battle? Constantly! Why can't doctors actually read up on endometriosis and actually speak to their patients. Learn first hand from us what its actually like, not just read from textbooks. What can I do to change this? I'm running out of steam, energy, patience and idea's.. But if I stop shouting, stop searching then I'd be in a worse situation. No one writes this on an endo fact sheet. Its about time doctors got real..!! 


Monday, 13 June 2011

The Battle Of The Swollen Stomach

At the moment I’m sitting at home after having to ring in sick to work, again, having cramps, vaginal pain, feeling sorry for myself. Its my birthday next Sunday.. I’ll be 24. When I had my laparoscopy in February I really thought by the time my birthday came I’d be recovered. Finished with endo. Done. Instead, I’ll be a 24 year old that still has an extremely swollen stomach. Still looking five months pregnant and living in my oversized black cardigan just to try and hide the bloated look a little. I don’t think it works, I most probably still look fat or pregnant to others, but its become a kind of comfort and I hardly go anywhere without it on.

Since all this started, my swollen stomach was the first main symptom (along with shooting/stabbing pains) that I had and knew instantly something was wrong. Since then, my stomach has never gone down to what it was before. Granted some days its not as bad, but its never flat or ‘normal’. I’ve forgotten what normal looks or feels like. I’m fed up of wearing the same clothes all the time because half of my wardrobe doesn’t fit around my stomach. The last week my stomach has been at an all time high. Huge. I weighed this morning. An extra 7 pounds have been added instantly due to my swelling. Half a stone. It hurt. A lot. I cried. Partly due to my emotions lately, mostly due to frustration. Frustrated that I cant control the swelling. I’m all researched out on ‘how to reduce a swollen stomach’. Drink plenty of water, don’t drink too much water, take water retention tablets, dandelion herbal tablets. I’ve tried it. I try to convince myself some days that yes, its working, my stomach is looking better. The next day, whoosh! Huge again, back to the black cardigan.

I think even Google is fed up of me now thinking ‘oh here she is again..’ ‘what does she want this time?!’ I know what I want. I want my swollen stomach to go. I want to be able to wear nice clothes that a 24 year old should be wearing, without having to restrict my wardrobe to loose fitting items, that cover my stomach. That’s what I want. I think that would be half the battle in me feeling better, physically and emotionally. That’s what I want. But how do I get it? I have absolutely no idea. And that’s really getting me down…x

** Please see The Battle Of The Swollen Stomach - Part 2 **


My Endometriosis - Four months on..

Today its June 13th. I had my lap February 15th. Four months on, am I cured? No (wishful thinking).. Have I found all the answers I’m looking for? No not yet.. Am I better? Slightly. But nowhere near as much as I hoped. I now see I was a little na├»ve to think the I’d have the lap and hey presto! Im back to me again! So where am I now? Well to date, I have had four prostap injections. On the last check up at the hospital we realised that it hasn’t been working for me as it should have. For any that do not know, prostap is similar to Lupron - which is supposed to shut down your ovaries and stop your periods. I however continued to have periods while on prostap and for much much longer than normal. Last month I was on for three weeks of the month! They have decided to try me on a new medication called Norethisterone (I have no idea how to pronounce that?!) a hormonal tablet to be taken three times a day. Its been a week and I have had no spotting, no bleeding. Yay! On the other hand my emotions have been everywhere. I cried for four days straight. Over nothing and everything at the same time. I have also been one moody cow! If looks could kill then a lot of people would not have had a chance around me this week! It’s one of the worst feelings when all you do is snap at people, which always seems to be those closest to you, and you just cant control it. Insults and bitchy comments have been flying out my mouth before I’ve even had time to think. And that’s really not me at all. I’m so lucky I live with my amazing mother and brother who for this last week have totally ignored me - literally! Just left me to it. Jokes aside though its really been a tough week. This new medication has hit me hard, physically and emotionally. My stomach has swollen three times its normal size, so embarrassing! Not to mention the tiredness. I wanted to stop taking these tablets but will listen the advice of my mother to continue taking them for now and let my body adjust to them. Mothers know best after all right?? I have two injections left.. And in October I’ll have a review with the consultant who did the laparoscopy.

Who knows what will happen in the next four months. There has been plenty happening these last four. Some days I wish I could see into the future, what will happen, when will I feel completely normal and better again? Then I think what I’ve been through this last year and half. Would I have wanted to know all that? To know what each day has brought? Some days laughter and fun, however most of the time worry, pain, depression, insomnia and more pain? Not really. For now I think I’ll stick to taking one day at a time and just hope for the best.