"Where there is creativity, there is hope." ~ Donna Karan

Wednesday, May 18, 2011

Beyond The Realm Of Reality

I've entered the realm of insanity. I hardly feel human. At times it feels like life is running in slow motion, I feel like I'm walking around in some strange dream but the reality is this is real- and it's a nightmare. Being doped up on drugs will do that to you. Spending two weeks popping panadiene forte isn't at all pleasant. Sure, the side effects may be worth it if it actually helped to dull the pain but I'm still suffering, with no end in sight. Severe back pain believed to be caused from endometriosis means that everyday is now a struggle to survive, I'm merely existing.

When the pain happens to allow me to escape from home, I no longer can stay out for lengthy periods of time due to drug induced fatigued. I feel like an alien existing on some foreign planet. I feel dizzy and generally just really weird. Forget hangovers. I feel more than whacked around by a few too many drinks. Ever since the onset of sudden back pain over three weeks ago, I've seen it invade the little life I had left. The pain has been my constant companion and I'm wondering how can this pain be real. It's ridiculous.

I've never had pain just below and in between my shoulder blades before. It's a new pain and it's intense, apparently associated with endometriosis. You would think two weeks on panadiene forte should have done the trick. The pain is so bad that it makes me wonder how could I not have injured it? It doesn't hurt to touch and it appears completely "normal" which is why the doctors are guessing it's referred pain from endometriosis but hell does it hurt. I can't ever remember being in this much pain with endometriosis and I've never had to rely on panadiene forte persistently to relieve some of my pain. It doesn't make sense. I'm worried something else is going on and I'm scared that there will be no solution to this pain. Something is amiss, I know that for sure.

I've been patiently waiting to see another gynaecologist next week but inevitably I wound up at the doctors yet again today because the pain became too unbearable. I'm tired, I'm frustrated, I cry at any little thing, I'm miserable and I'm moody. My given options today? #1. Get an urgent appointment to see a different gynaecologist this week #2. Try opiates (taking into consideration I already feel drugged from the panadiene forte, opiates will make this feeling worse) #3. Look into getting private health cover to speed up surgery (people are not so reassuring about this one) #4. Rock up at emergency to prove I'm struggling. (Tempting but I don't feel like sitting in emergency for hours when I can predict what will happen- they'll just drug me up and send me home, may as well just get the drugs from my doctor)

I decided on option one. I've been kindly given an appointment for this week. I feel sorry for this doctor- three weeks of constant chronic and at times severe pain... little miss nice went out the window quite a while ago. I'm frustrated with doctors who don't "get it". I'm sick of wasting my money on doctors who don't give a shit and don't take my pain seriously. I'm at the end of my rope here. I'm tired of being doped up on drugs and told "surgery shouldn't be too much of a wait" or "getting pregnant should help with your endometriosis". The getting pregnant part really upsets me the most. Firstly, endometriosis can cause infertility and if I'm having trouble with adhesions on my ovary and bladder that may make conceiving much more complicated. Secondly, Endometriosis shouldn't become my reasoning of wanting a child, and more to the point, I'm dateless. I'm a stay at home young single woman on disability trying to manage living with multiple chronic illnesses. Finding myself a man and having a child isn't on my top priority list.

I don't know how much longer I can keep putting up with this pain. It's becoming quite difficult to deal with but I am so grateful that it isn't worse than what it is. One good thing about the pain is that it constantly reminds me that I'm alive and that I have so much to live and be thankful for. I can come and write a post, write out all the hurt, frustration and confusion and feel much better for it. I can reach out and encourage others who are hurting just as much as I am and I can cheer myself up knowing that I've helped cheer up another. I know that this pain has a purpose and that is what keeps me going day after day. I keep fighting and I keep writing for those who are still awaiting a diagnosis and for those of us who are choosing to hold onto the hope of cure, who are walking in that hope everyday by raising and maintaining awareness. One day a cure will be a reality and no woman will ever have to feel like they are existing beyond the realm of reality feeling as though they are a foreign alien struggling for survival.



Alanna said...

Firstly - someone told you to get pregnant?!?!?! If someone told me that I would be in tears in an instant! Sure, I know there is a high chance of goign into remission when I'm pregnant, but let's not even discuss how hard it will be to GET pregnant because of arthritis, medications and what not.

Secondly - I don't like hearing about your pain - it's horrible that next to nothing can be done. I'm going through a rough patch at the moment as well. My pain is usually manageable (2 panadeine a day kind of pain) because of fortnightly injections but due to my doctor stuffing some paperwork up I missed my dose last Friday and was feeling increased pain from Saturday :( Now I've just been told I won't get the injections until late next week (which is a fortnight overdue).

I feel your pain right now Em, but try and stay strong. I'm right here with you :)

Anonymous said...

So sorry to hear that you're still in so much pain. I'm not a healthcare professional by any means, but I I've never heard of "referred" endometrian pain. Not to say it isn't possible. I did have a gyno tell me that endometrian tissue can form in areas outside of the abdomin.
As I had horrendous PMS (more likely I had the new aphabetized version.), endo (the severity of which was only discovered when my ovaries were being removed in my mid-30s), and extremely painful periods (about 1 week a month that I felt "okay" gynocologically), quite a few people told me "get pregnant, you'll feel better or you won't have so much pain after you have your first child." Even a gyno said that to me!
If the pain remains unrelenting, you might try a low dose opiate-based pain medication. If a low dose caused you to feel "out of it," or sleepy, then you could stop taking it. It might be good to have something you could fall back on with the pain is EXTREME as it has been.
By the time I started taking prescription pain medication, I was off hormones, so wasn't having any cycles so I can't say whether opiate-based pain meds are good for endo pain.
I hope the new dr. has some good ideas. Do you bring someone into the examing room with you? Sometimes, it can be helpful to have someone else to back up what you are saying and to help remember the details of what the dr. had to say. I also write out an "agenda" with the questions I have, symptoms I've observed, issues I might have. I bring that along so I can make sure I go over everything, and can make notes on about what the dr. is saying.
Good luck! I'll have my fingers crossed that you get some answers and some relief from the pain.

Kathleen said...

Hi, I had endometriosis prior to having my children. At 18 and 19 years of age - I was told - it will get better when you get pregnant - UH...OK - well there's a thought. So, I know your frustration with that. Having said that, I did have my first child at 30, 2nd at 33 and have not had period cramps or difficulty since then. Then my Chronic Pain left me without a period for 5 years (until last month) something that showed I was sick - but as you can well relate - it was one of the only benefits of my Chronic Pain.
Now - don't know if you have done this but = when I was 24 - I was put on a hormone for 4 months. It effectively put me into menopause. It was San-Fran-Tastic. I cannot remember the name of the drug - it was expensive - but it isn't a narcotic, anti-inflammatory, non-surgical and did not impede my life at all. There were hot flashes and sweats, BUT I had NO PAIN and I had increased energy. After the 4 months were over, my periods were much better. I took Anaprox (Naproxin) for cramps. Not sure if this is helpful or if you have done this treatment already, but just thought it might help. For those who don't have endometriosis they have no idea what pain (literally) a period can be. With my first baby - I was 9 hours into hard labour and the nurses were like "how are you doing this". I said - imagine having one contraction for 48 hours - that is what my period was like - with labour it is a contraction that stops - you get a break. So, it wasn't that bad. With my second child - I was in labour for 5 days - again not that bad.
Referred pain can also happen b/c your neuropathways reroute - it is what they do - so a previously normal pathway is now interupted and sent somewhere else b/c your nerves have had enough. Please come on over and take a read of my blog. I can commiserate with you on your pain. I hope you are feeling better soon.
You may also appreciate my open letter Dear Dr.

Emily Ruth said...

Alanna- well yeah indirectly, I'm always hearing how getting pregnant can help. Oh I know I'm actually worried about the medication side of things, my doctor says that they won't affect fertility but I'm reading stories that it does. I've also heard of people getting pregnant and going into remission for 9 months... if that's the case I'll just keep getting pregnant haha! I'm managaing a bit better with the pain now which is wonderful, I've discovered if I rest and don't move around too much it settles down a bit. Oh that is terrible love, missing a dose is horrible. I know exactly what it's like- I was taken off fibro medication for quite a few months because I was deemed to be in remission- the doctor got it wrong and I spent months on end unable to work. At least you have your scrapbooking as an outlet you are so talented it's amazing how being creative can help get you through the tough times. I'm so thankful to know you, it really helps to know I'm not alone and that people like you know what its like to ache all over.

phylor- I saw a new doctor who agreed that all the pain in my back is referred pain, but I think there is more to it so I'm hoping the recent blood test I had will show up inflammation. So far I'm managing ok without opiates and I hope it remains that way! I usually take my mum in with me but lately I've been going myself because I want to be independent and fight my own battle. The new doctor I saw was so understanding and actually concerned about my pain, so I'm very happy I am finally going to get some answers.

Kathleen- I haven't tried that option yet but everything I've tried has caused severe depression and thoughts of self harm so treatment doesn't really agree with my body. The new doctor that I've seen believes there is no point in trying hormones because it wont fix my bladder problems so my only option is surgery for now. Thanks so much for sharing your story, it's so comforting to know people who understand my frustration. I will definitely stop by your blog and have a read. Thanks for stopping by!


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