Diagnosed with a chronic incurable illness

Discussion in 'Suicidal Thoughts and Feelings' started by Kaza, Apr 30, 2011.

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  1. Kaza

    Kaza Active Member

    Hi guys,my first post and I have been doing a lot of thinking over the last few months. I have been through a lot already in my life - emotional and physical abuse when young,several siblings dead before I was 18 due to a genetic illness,then I found out I also carried the gene for this illlness so no babies,not the prettiest of women, had an eating disorder for a long long time,was in an abusive relationship,bit of a loner so friendships were sporadic etc.

    But, despite all the above, I never really thought about actually killing myself.Yes, I thought about it but I always found a reason to keep going, small things like books, films,music,people sometimes though rarely.

    About 11 years ago,my life changed in so many ways, for the better.I moved to a city I settled in and loved,met my gorgeous man, now my husband,got a job I really like, have made a few close friends,got more confidence in my looks, everything seemed to be coming together and I really was happy for the last decade. I was hitting my 40th birthday end of last year and even said to my husband, I have had a good ten years and I am grateful for that.

    My nightmare started a month before my 40th - pain, pain, pain.I got the bladder infection from hell, got misdiagnosed for 3 months, numerous antibiotics and was left in this pain, then to be told I have Intersistial Cystitis, which is incurable, gets worse and for which treatments for sufferers can make them better or make them worse and where one thing might work for someone and not work for someone else.

    I have gone through all the emotions of why in Gods name this would happen to me now when I had got my life together, was happy and this excruciatingly painful condition hits me. It has stripped me of everything I had - good food (I cant eat anything nice now without aggravating my bladder),my sex life, my job, confidence in going out with people, has isolated me because I cant have a drink now.

    There are stories out there of people who have recovered from this disease, I am trying to be one of them but there are many many more who dont recover and seem to end up bed bound, crippled in pain and bleeding from their bladders.

    This IC, for me, is my final straw. I survived so much already, to be given this, is too much.

    I seriously thought about suicide before Christmas, about twice. It has hit again lately because I am trying desperately to recover (through diet and supplements) and it could be working but I dont know. I wake up every day not knowing if I will have pain or not, and when I do, I want to crawl into a corner and have a gun put to my head.

    I dont know really why I posted here, my mother wouldnt survive me killing myself, she has lost several children already but I feel I am going to give her a heart attack as I ring her when I dont know what is going on with my bladder and my body any more.

    I cant believe this has happened to me, I really cant and that is why, after everything else I have survived in my life, I cannot take this condition. I cannot describe to anyone how bad the pain is when it strikes, pain killers did not touch it before Christmas. The thing that kills me, really really gets me, is that when I researched the people who get this thing, a lot of sufferers seem to be the most vulnerable of people, those who have been abused or been traumatised by events, I just thought, its unbelievable, people who have already been through so much getting a painful incurable condition which affects every single aspect of their lives.

    Sorry guys, I dont know why I posted, I dont want to die but I cant live for the rest of my life in fear of my bladder, my body and to inflict this on my husband.
  2. I am sorry for you but I know you can make it through it.
    About 2-3 years ago I rapidly began to fall very ill in a variety of ways. Now I have been diagnosed with several incurable illness's. Granted, non of them will flat out cause me to die but they could with time/complications/chance.

    I learned real fast to start seeing the humor in everything, including making fun of myself and my own illness's.
    Have you tried looking into a support group that targets the illness you are suffering from?
    If you don't have one already, finding a compassionate and understanding doctor is also very important, I've had to go through countless doctors/specialist to find one that took me seriously and who didn't give up on me (well, at least not yet).
    You are your own best advocate when it comes to your health. And each one of us deserves proper respectful treatment. (^.^)
  3. sunshinesblack

    sunshinesblack Well-Known Member

    life isnt fair, i believe sometimes the body strenghtens up while under assault to be able to escape bad conditions at all costs but then after u get away u get to deal with the damage
    Dont know anything about the illness but if you r not ready to end it defenetly try make your life as easy as possible, like read happy books and listen to positive music, if you want to heal and know it takes time and dealing with the illness than u have to be able to deal with that
  4. icequeen

    icequeen Well-Known Member

    hi kaza and welcome. sorry to read that you have been through so much, conquered a lot and then get another blow. life is cruel and unfair and one has to wonder why bad luck cant be shared out equally.

    obviously you have researced your condition, and having done a quick google, it seems to be one of those annoying conditions that can come and go for no good reason but also as i think you said, what works for one may not work for another and like the other poster i would suggest you try and contact an IC specific forum where you may be able to exchange ideas and find something that you havent tried that may work.

    in the meantime, keep posting here too as we can hopefully support you on your suicidal thoughts. sorry i cant be more help, but take care and dont shut your nearest and dearest out, you need all the support you can get :hug:
  5. wheresmysheep

    wheresmysheep Staff Alumni

    I am sorry you ahve to deal with this.
    I was with someone for a while, who suffered with this, and it came and went in severity for her.
    There is a powder you put in water to take for help with this, and i do feel stupid saying this to you, cause I'm sure you've tried all this stuff, then theres your bog standard cranberry juice which is the bladders best friend.
    Is your GP trying to clear it up for you?
  6. Kaza

    Kaza Active Member

    Hi guys, thanks for all the replies already, all of what you have said, I have done and have been doing all along. I dont want to kill myself but nor do I want to live the rest of my life with fear of my bladder and my body breaking down. I like whoever said that the body stengthens while trying to escape and then when it does, it can be left with damage. I do feel that is what has happened to me.

    The other problem is that I dont have a doctor or an urologist that are on my side. I feel the two I had before Christmas damaged and hurt me so badly, both physically and mentally. I was referred to a lovely second consultant (nothing to do with the bladder) who couldnt believe I was referred to him (I had to go through a Herpes investigation and also my poor husband had to get tested, neither of us have it) and he said I definitely had IC and that I needed to find a new doctor and urologist.

    My only hope that i have is that my bladder may just heal over this year but its a very slim hope, noone seems to know why some people do and many more never do. As depressed as I am, I cant have a drink or a piece of chocolate, worst things for the bladder in this state. It is honestly the thoughts of never having nice foods to eat again, never having a drink, not being able to have sex with my husband and losing my job that is driving me to think, end it all now. The suicide rate for people with IC is 3 to 4 times higher than for suicides from any other chronic illness.
  7. JP'sMum

    JP'sMum Member

    Kaza, I'm sorry to hear of your pain and distress. I know this sounds radical, but have any of your medics suggested bladder removal? I know, I know, it means being fitted with a catheter and bag for life, but it would enable you to do all those things you can't do now - even love making cos you can empty the bag prior to going to bed, and hide it under a silky cami top.

    There again, you might have a settling down of the condition - so perhaps such radical surgery isn't the right option? Good luck anyway.
  8. IV2010

    IV2010 Well-Known Member

    Kaza I'm sorry you're suffering so..you have been through so much...
    stress definately affects the body in that way..

    quite a few years ago I had cystitis non stop for a year and I can understand how painful and draining it is..
    doctors didn't seem to be able to help me...
    someone I knew told me one day to try Cranberry capsules...they'd hellped her..so I did..
    that was about 15 years ago now and I still take the cranberry capsules everyday without fail because they worked for me..I will never stop taking them..
    they are way more powerful than the juice...you could never drink that much juice in a day..
    maybe you could give them a try...
    I'm not that into natural therapy but if it works and stops the pain then..go for it

    I hope you can find some relief / cure for your illness..
    take care
  9. Kaza

    Kaza Active Member

    Thanks again guys, bladder removal isnt an option. Believe me, I have looked into it but what happens for a lot of people is that the poor old bladder gets whipped out and the pain comes back anyway. It seems to be that this IC is very likely an automimmune disorder so that when the bladder is gone, the immune system just attacks the rest of the kidney system, the ureters instead. Second thing is, IC isnt a bacterial infection so cranberry capsules are the worst thing for it, thats the confusion. I was taking them at first until the urologist told me to stop, that the acid in them only attacks the lining even more.

    I get what you are all saying though, if I could find something that will handle the pain I could be ok. I just cant believe that my life has been hit with this, I am still in the angry, denial stage about it. The ONLY thing, the only thing that I am doing is, the diet and the supplements but it is so restrictive, I am on meat and vegetables, that is it. If I could know that a year from now, I could be healed up and back to a normal diet, I wouldnt have even posted here. It is just some people do this and recover and others do it and just dont, why noone knows. Knowing my luck, I feel I will be in the second category.

    The practionner I am seeing keeps trying to get me to understand that if I think I will end up bed bound with a bleeding bladder, that my mind will make it happen, whereas if I keep thinking I will be one of the people who recovers, I can do so. My mind just doesnt seem strong enough, it just doesnt.

    Suicide is the only thing I keep coming back to, sorry guys.
  10. icequeen

    icequeen Well-Known Member

    what ever you do kaza keep posting here for support and join IC specific support group for things you may have missed. IC is like a lot of horrible conditions that you cant predict or control how it will behave and thats the annoying thing as you cant decide what to do for the best. all i can offer is keep fighting and hope that your condition improves as its all new to you..get used to the beast and maybe you can fight it. talk to hubby...explain in detail how it is emotionally and physically but dont give up just yet....its early days (althought from pain point of view it may be like a 100 yrs) :hug:
  11. Kaza

    Kaza Active Member

    Thanks Icequeen, I really appreciate that, yes, you are right, it is still early days for me. I am in a number of IC support groups online and I think Im the only one who got a diagnosis so quickly (some seem to be years suffering before getting one) and also went the diet and supplement route very early on as well. The reason I did this is because my pain was so bad initially, where pain killers didnt touch it, it terrified me into doing drastic things like the diet. What terrifies me is the lack of knowledge around this and the hopelessness of what works and what doesnt. I know it may seem to some that I should be able to put up with a painful bladder but honestly, honestly, I never experienced pain like what I had, a burning, fire like sensation, going on and on. If it was an achy pain, I wouldnt be posting but this other pain, I understand now why some people commit suicide from having IC, when its this pain.

    My mother and my husband are the only two people stopping me from over dosing already. I know you all say to get support from them but the problem is neither of them understand the pain I am talking about and thought initially it was in my head (which made things a lot worse for me, when I was very ill, I had to get myself to appointments and could barely walk). They had to hear it from a consultant that I wasnt making anything up and that I have a very real condition, I have a lot of anger still with them for not believing me. So I dont have anyone to talk to about this.

    I really appreciate all the support already, I didnt expect this so quickly, I really appreciate it.
  12. icequeen

    icequeen Well-Known Member

    i am sorry that you met with so much negativity, pain is a hidden demon and unless you howl like a banshee people dont get how much pain you in, and to face that daily....dont feel bad that they didnt relate...pain without a visible cause is hard to understand and sometimes if you say a bladder infection most people will take it as a simple case of cystitis and think you are being meladramatic as if they have not had a simple bladder infection they will have no idea of how painful it can be. i have only had cystitis once in my life and never again do i want to go through it and perhaps i should wish it on those that dont understand you to give them a vague idea of what you must be going through.

    dont feel alone...keep posting here for support
  13. JP'sMum

    JP'sMum Member

    Kaza - are you on the birth pill? Some women have reported an improvement in IC after taking the oral contraceptive pill. If you already are - and it isn't helping there is a surgical procedure called distension of the bladder during diagnostic cystoscopy. There is belief that distending the bladder causes the nerve cells to be stretched and thus less sensitive for a time. It's not a cure, but it can reduce the severity of the symptoms.
  14. Kaza

    Kaza Active Member

    Hi, I am off the pill about four months, it was thought that the pill was contributing in a negative sense to my problem (had had 3 utis in one year before I came off it and now nothing in four months since off it) as well as my overall health, so I came off it, I would go back on it if it helped with the IC but anyone i have spoken to online about this have all said that the pill can make things worse and that i did the right thing. I have had a hydrodistention about four years ago, when I was seeing a urologist for very mild bladder frequency (what I wouldnt give to go back to those days) and he did one, it really improved everything. But now, he is reluctant to do one and I am ok with that, again most people ive spoken to said it made them much much worse (when the bladder lining is tender, its ok if you dont have ic and i didnt, the first time). You can see now when I say I dont know what to do or what direction to go when even treatments can make you much worse. I know they can help some people, even with IC, but I just instinctlvely that my bladder is too tender and the urologist was thinking the very same, even though he had done the first one.
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