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I live in chronic pain. The reason for my pain, is Endometriosis. I was diagnosed through surgery when I was 17. I have decided to have this blog, so that those in my life can get a peek into my day to day issues that affect my life in every way.

Friday, July 10, 2009

My two "Options" left

My two "Options" left is what i end up writing about in the end.


I am welling up with tears again,

In my head, we would move to Fergus and then everything would be fine. I would feel well enough to shop at all the local stores when I wanted, and then even better so I could get a part time job (and not be fired for missing days) and then even onto full time work. That was what the plan was in my head. I forgot to mention, also in the plans was making friends with the neighbours, and then later with people at work.

The truth of it is we have now lived here for 2weeks as of tomorrow and I have made it to the closest store (the grocery store) once and that is all. That trip required hours of waiting till I felt best, Demerol and ended up with my grinding teeth plenty from pain. While at the store I was reminded that I was unprepared, I had not taken anti-nausea pills ahead of time, nor did I have anything with me to settle my stomach, but thankfully being in a grocery store that wasn’t too hard to find, but did make me rush to get to the check out rather fast as to avoid vomiting in the aisles. Rushing made me forget one of the key reasons I was shopping in the first place, but I managed to make it back and not throw up so for me I guess that could be considered a success?

I am just getting so sick of this body.
My illness will never kill me, even though in many ways it works like a cancer.
Though it has killed my getting a secondary school education (but I did finish high school and it did mess that up many times but with an extra year in school I made it out, but that was before I got worse). It has destroyed my social life generally speaking. The inability to move much without pain has made me gain allot more weight, also did the experimenting with Lyrica to see if it would help with pain, this has destroyed all self confidence I might have had. Taken away sex drive, well that is not entirely true but that almost makes it worse since I am left wanting when my body is unwilling to comply.

Being home all the time, unable to work makes most people assume (including myself) that I would be able to at least be somewhat useful as a "house wife" (even though I am not a wife), doing dishes, laundry and general keeping the place in order. It’s not as though there are even kids (the hardest part) to look after while doing other things, and yet I am unable to do most things. Or I can do them without tears from pain, if I use Demerol but that might mean I don’t have it when I am throwing up from the pain sitting in one place.

I should be happy; I live in a great neighbourhood in a great house and have an amazing guy by my side. I don’t have to work, (ignoring I can’t) to support self at the moment. Though with all this going on I am depressed more and more.

Joy more tears, the real kicker is seeing as I have tried all medical means of treating my Endometriosis, including some experimental ones there are no options left except for 2 I am unwilling to try. Truthfully of those 2 only one is even an option since no doc I have come across is willing to tie my tubes let alone give me a hysterectomy.

Those options are danazol (believe that’s the name) and seeing as each and EVERY time I took drugs that effected hormones (adding any to the mix) I have gotten worse/more pain. Along with many other hellish symptoms including becoming suicidal! I would get allot of the more uncommon side effects even, so the thought of trying a drug known to have a list of possible hellish side effects (including facial hair growth, and a forever lowered voice off the top of my mind) I am simply unwilling. Since hell, even my endo doc agrees with me, looking at my past experiences I would likely end up hairy, sounding like a man and on top of that in even more pain. It’s not worth it!

The other option is a hysterectomy. Doctors are unwilling when you are young and even more so when childless and since I don’t plan on changing the childlessness and I can’t age over night its barley an issue in their eyes. But MORE importantly I think is my reasoning for not wanting a hysterectomy, and it’s funny since although you would think my reasoning would be important to people, those around me don’t seem to hear my thoughts at all!
The fact of the matter is, I know of allot of people who have had the hysterectomy either total (ovaries and uterus) or partial (just uterus) out and are still in plenty of pain. Hysterectomies are NOT always a CURE for this illness. So let’s say I have my insides removed, now is the fun of trying to balance my hormones, oh wait... did I mention any time I have had to take anything that put hormones into my body I ended up in a horrible state? (If you missed that read above paragraph again). Now this could sound mean, and I don’t mean it to, but my mom had a total hysterectomy and ended up being one of those who felt better (yay mom), on the other hand I lived with her for 18years past her hysterectomy and witnessed the time it took to get her hormones balanced, I witnessed those mood swings, saw the meds she had to take to combat some of the issues for no longer creating her own hormones and such. I am terrified of all of it. Since I frankly am not allot of fun to be around now, but my mood issues are pain related not hormone related, when my hormones are off at all I am a complete hellish person to be around, I know this! No one would want to ever be near me let alone live with me if they were off, and if you add the possibility that the pain might not go away when my inners are removed the taking hormone replacement therapies could make the pain even worse.

Yet another reason for my “unwillingness” to have a hysterectomy is I have some hope in the future that they (doctors, scientists) will come up with a way to treat endometriosis, and if they do there is a chance that the meds used to treat it will affect the uterus or ovaries in order to work, well if they are not there how does one get treated now (yes, this is only an issue if the hysterectomy does not help with pain)? I don’t want to put myself in such a situation that ends up making it impossible to use medical advances that could actually treat me.
And yet another reason, that although is insignificant compared to the others is simply, I liked the year I had while my body worked, now endo has claimed my bladder so I already feel very old and decrepit, I often don’t feel very feminine as it stands with how my body acts, and how it has acted in the past. I am almost at the point to admitting another issue I had in the past, that still effects me now and again, (I wrote it out and I can’t) Most people who mean much to me have either been told by me, or told by Scott about this issue, and as it stands others in my life don’t need to know but if you want to you can ask and I might explain it on a one on one way, or later may be willing to admit this issue fully.
But it effects me in a way that also makes me feel less feminine at times and well, removing the parts that make one “female” is allot to wrap the brain around when you already have issues with your femininity in your head (another issue that would be horribly messed up by replacement/unbalanced hormones!).

So basicaly i end up getting sad since i am in constant pain and am really out of options other then pain managment at the moment. The kicker there is my current pain managment doctor has given up!

1 comment:

  1. I strongly recommend that you call the HERS Foundation in Philadelphia at 610-667-7757. They will help you review your medical records, and they often find non-invasive, conservative solutions that doctors and radiologists miss. You can call them over the weekend too and mark your call as urgent. Also, you should watch their "Female Anatomy" video before you consider hysterectomy. It's available for free at hersfoundationDOTorg. Their book THE H WORD changed my life.