Wednesday, May 11, 2011

Afraid Of Adhesions



It has been over a week since shocking endometriosis and ovulation pain decided to rock up on my door step and I'm still struggling. Words cannot convey how much I hate this disease. I hate everything about it- the pain, emotional exhaustion and the frustration of failed treatment options. I am angry at this stupid disease that has afflicted my life and I am an emotional wreck from the pain, treatments and doctors who just don't understand how this disease is limiting my life at this point in time. Since the onset of ovulation pain I have been in constant chronic pain. It never lets up and I fear I am slowly losing the battle. Popping ponstan and panadiene forte pills daily is no way to live and I am slowly but surely drowning in this ocean of pain. I can barely keep my head above water. I don't know how much longer I can keep doing this and I don't know how much more pain I can take.

Last week I had an appointment with my gynecologist to discuss treatment options and I didn't like the options that were dished out. Considering that I am not currently on treatment to control the growth of endometriosis it was strongly recommended that I be placed on the public waiting list for yet another laparoscopy. Seeing as all my symptoms have returned and the fact that previous treatments have failed to help with bladder pain I need more surgery to determine precisely what long term treatment options would be best to try next. When I explained to her that I had had the mirena (which is a intrauterine device) removed by my gp due to severe depression, mood swings and thoughts of self harm after having it inserted during my last surgery, she questioned me about it as if she didn't believe the mirena was the cause of those symptoms. When I stressed that I was managing much better mentally and emotionally without the mirena in she just shook her head saying "oh no, that's why you are having so much trouble with the endometriosis now, would you consider getting it put back in?"

I couldn't believe what I was hearing, was this woman joking? I made an empowered decision to have the mirena removed after giving it a good go for a year and a half because it turned me into a completely different person- a person that I'm not proud of, a person that wasn't me and I never want to put myself or my family through that ever again. I was an absolute mess on the mirena, it turned me into a monster and here is a doctor disregarding everything I just disclosed like it meant nothing. I was furious. And to top things off it was suggested that I consider looking at long term treatment options like drugs that stop me from getting my period altogether so the endometriosis doesn't grow. Not knowing what exactly the side effects entailed I researched on the internet when I got home and sure enough in bold letters the words 'DEPRESSION' and 'MOOD SWINGS' stared at me. I have tried countless hormonal treatments and have been assured that I wouldn't have difficulty with depression and each one I've tried the side effects have been devastating- I'm surprised I still have friends and that my family haven't disowned me! For a doctor to think that I would opt for a treatment that will send me into a menopausal like state with side effects mimicking menopause amongst a myriad of others after all that I have been through is beyond me.

I was not at all happy with the outcome of this appointment. In fact, I was quite angry. I left feeling as though because I had the mirena removed that I have brought this pain upon myself, that I only have myself to blame. I felt that my pain and side effects were not taken seriously enough. I fought hard to keep that Mirena in for as long as possible, I spent week upon week trialing different anti-depressants that only caused insomnia. It isn't my fault that I got depressed because I had hormones being released inside my body and doctors should know better than to indirectly imply that it is- it's not acceptable. I made a brave decision to have the mirena removed, fully accepting that the pain would return at some point. Why a fellow female cannot offer the least bit of compassion is just cruel.

I'm now on the waiting list for surgery, and from previous times the wait seems like forever when you are in a great deal of pain and discomfort. I'm terrified of another surgery, I'm afraid of it causing more adhesion's which means more pain that is a permanent problem. I've had many surgeries before but after experiencing the excruciating pain of retention TWICE after my last surgery, I'm also afraid of it happening again. I hate this damn disease.

I spoke to my gp about all of my concerns yesterday, and to add to all the complication, over the last few days the pain has progressed to my upper back, upper abdomen and chest. I'm finding it difficult to function and breathing even hurts. Really hurts. I naively thought that the pain was just really bad arthritis that could magically be fixed by a new drug but all my other joints and muscles are fine- they ache like they normally ache so it couldn't possibly account for my back and stomach pain. I've never had so much pain in my back or stomach in my whole life. There is really nothing that can be done for me right now other than keep taking panadeine forte which barely touches the sides and just makes me downright drowsy. She said that the pounding pain that I now have in my upper back and chest is a symptom of severe scarring. I'm so upset. We both agreed that a second opinion would be beneficial so I'm seeing yet another gynaecologist later this month. Although my doctor did tell me not to get my hopes up that they'll have better options. My doctor is suspecting that I probably have more than one adhesion. I need to undergo another laparoscopy to detach everything and see what is exactly going on. There isn't another way, I don't have a choice. Because of the amount of pain I'm in my doctor has advised me to ask at my next appointment to be upgraded to a category one surgery so I get done urgently.

So for now, I am a popping the panadiene forte. You know you're in a lot of pain when you've been given a special script for an abundant supply! If the pain becomes too unbearable then I'll be put on opiates which is an addiction I am trying to avoid. The long term prognosis after surgery? If it is adhesions causing most of the pain then I'll be referred to a pain management doctor for prescribed opiates. I have never been in this much pain with endometriosis. I hate this, it sucks. I didn't sign up for any of this and now I'm wishing that I'd never had surgery to begin with, but I had to, I had no choice. Have I mentioned I hate endometriosis? Right now I'm just trying to deal with the pain the best way I know how- I get up, I do very minimal tasks and I distract myself by getting creative because when the going gets tough, the tough get creative.












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2 comments:

WhitKnee said...

I'm sorry to hear you're going through this. Its good that you're getting a second opinion. When I had back surgery the dr told me to get a 2nd opinion, I went to a dr he recommended and the same conclusions was met...a few years and several complications later I went to a completely unrelated dr who said the first surgery shouldn't have been done to begin with...my point is, it never hurts to have more than one second opinion.

Emily Ruth said...

Thanks so much for the support. Oh love that's terrible. Sometimes I wonder how some doctors managed to get there degrees and are allowed to practice. That said there are some wonderful doctors who really care about their patients so I'm sure I'll find one who will listen to me eventually, I just hate wasting money on doctors who just don't care.

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