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Desperate and need HELP! Desperate and need HELP!

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  #1  
Unread 03-03-2005, 09:04 AM
Desperate and need HELP!

Hello sisters,
I am 24 and have been through alot with Endo, which finally resulted in a complete Hysterectomy a year ago. However, that didn't help the problem. I still have CHronic Pelvic pain and the Dr.'s believe the Endo is growing back. SO, I am on pain management and popping plls all the time. Today is my one year wedding anniversary and I wish I could feel happy about being married to such a wonderful man. But I can;t because I feel so depressed and guilty. I have had to quit my job and I can't do much more that lay on the couch or sit. When I walk too much I hurt, when I sit too long, I hurt. Anyway, all I here is Dr.'s telling me that they don't know what to tell me. HOw can I accept this being the rest of my life when I am only 24! I am unable to pay my bills now and hate the fact that my husband has to be put through all of this. I am not asking for answers but I think I need a lot of support from people who know what I have been through. Does anyone know how I could get financial assistance until my Disability case is decided? HELP!
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  #2  
Unread 03-03-2005, 09:23 AM
Desperate and need HELP!

Hi,

I'm so sorry you're having to go through so much! I can only imagine how awful it must be to have chronic pain.

If it were me though, I'd get a second, third, and fourth opinions. There has to be something that can be done to help you. You're too young to have to go through life suffering.

As for financial assistance, check with social services in your area. Sometimes area churches (Catholic services comes to mind) may also be able to help.

I hope you get some answers soon.

s,

Lisa
  #3  
Unread 03-03-2005, 09:40 AM
Desperate and need HELP!

Sounds like you need to find another Dr. Maybe you could go in for a lap surgery and have the endo that is growing back lasered off. I just had my surgery 5 weeks ago for endo, prior to having the hysto I had surgery 7 times to burn off endo and adheshions. You need find a Dr that will help you. Are you taking estrogen? If you are maybe you need to stop and let the endo die off. Just keep your chin up and as far as your husband remember in the marriage vows it says in sickness and in health. My sweet husband has reminded me of this many times when the guilt about being sick so much has gotten me down.

I am 29 and also don't work. I quit my job because of health issues. On top of the endo I have hypothyroid and heart problems all of which I take medication for.
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  #4  
Unread 03-03-2005, 10:18 AM
Desperate and need HELP!

I doubt I will be able to hold a paid job down now. I believe too that its for better or for worse in sickness and in health

when one is old and bedridden does it mean the marriage is gone because of a lack of sex ? nope . if he loves you truely he will stand by you

(((HUGS)))

mei
  #5  
Unread 03-03-2005, 12:37 PM
Desperate and need HELP!

(((Murffy)))

I wanted to give you a big cyber hug because I know exactly what you are going through. I am going through it myself right now and have been dealing with all of this for 1 1/2 years. If you look at my sig line you will see what I mean.
Are they sure it is the endo? What is your pain like? Do you have any bowel issues? Has anyone mentioned adhesions?
I have also stopped working since my last surgery, when my pain returned. I have some of the same problems as you. Pain increases when you stand,walk and when you sit. I come home from the grocery store in tears everytime. I just recently went to see a chronic pelvic pain specialist who also found 2 other things besides adhesions that can be causing my pain. In addition to increasing my pain meds, she gave me 2 other meds to take and has also ordered physical therpy for the pelvic floor muscle issues. I still havent' gotten that worked out yet because the one she wantedme to see doesn't take my insurance so I am waiting to hear who she wants me to go see. For the first time in a very long time, I am somewhat optimistic----I dont' have the attitude that this will make me all better, but mentally it made me feel like I am not crazy and maybe, just maybe I can feel alittle better. I don't know if I will ever feel better enough to return to work, but anything is better than nothing. I am also waiting to hear from social security about disability...and I am already prepared if they deny it, by having a lawyer to call when that happens.
I have also had the feelings of guilt---big time. At one point my DH was working 60-70 hrs a week to make ends meet. We decided that risking his health wasn't worth it and we filed for bankruptcy, Chapter 7 and we are keeping the house and my car...we just bought an old car for him and paid cash with out tax refund. He tells me not to feel guilty because he knows that I would do the same if the shoe was on the other foot. And we haven't had sex since August because of the pain! First and foremost he is my best friend, companion, and then lover. I knew he was the one, cause I could picture us old and grey, sitting on the front porch enjoying each other's company. Just because we can't have sex, doesnt' mean that we are not intimate. To stay intimate, we cuddle a lot and kiss a lot, hold hands walking in the mall...stuff like that. We don't even sleep in the same bed because after my second surgery, I started hving problems with my hips hurting in the bed...but we still find time to enjoy each other's company. If you ever want to talk, please email or PM me, cause i do understand, completely.
  #6  
Unread 03-03-2005, 01:19 PM
Desperate and need HELP!

Like (((marian))) and (((courtney))), I know all too well what you are going through. I am in PM now for SI joint dysfunction, CMP, and adhesions. I've been going through this for several months, had injections in Jan (having more tomorrow) and even my doc is getting frustrated because I'm not getting much relief.

No way can I work and yes, I feel guilty about it! My DBF works his rear off trying to make ends meet. I have a DS and DD that live with me and my ex pays child support when and if he gets a wild hair. He's suppose to pay insurance on the kids and then 1/2 of whatever the insurance doesn't pay....which I never see. I just found out he switched insurance too so, now what they don't pay will be even more. I am in the process for filing for disability now and do receive help with MY medical and food through Community Based Services. I don't know if you would qualify, but it is definitely worth finding out.

Just know that you aren't alone and feel free to PM me if you want to talk. Most importantly TAKE CARE OF YOURSELF!
  #7  
Unread 03-03-2005, 01:47 PM
Desperate and need HELP!

Oh I am so sorry. I know the endo beast too well. You need to find a doctor who understands endo. You need it cut out (excised) burning only gets the top of the endo, and the endo remains. Some doctors
do excise with a laser.
Get yourself educated then fight for your treatment. It stinks but you have to do it.
go to www.endometriosistreatment.org and http://drcook.com/

I am so sorry you are going through thsi but it is not hopeless.
Carrie
  #8  
Unread 03-03-2005, 04:55 PM
Desperate and need HELP!

Thank You all so much for your support. I went to see my Pain Dr today and he told me that I was one of the hardest cases he has ever seen. He also told me that he wants me to see the Psych in his office. He made me feel like all this pain was in my head. I cried... As my wonderful husband tried to make me feel better I explained that I get more help on here then I would ever get from just another person who has no idea what it is like to go through one day in my shoes! So thank you all so much for the care, concern and kind words. Love you all!
Kelly
  #9  
Unread 03-03-2005, 06:24 PM
Desperate and need HELP!

Kelly
Oh - honey. First of all. You need to find another PM doc. Once you have the pain under control, then you can address the rest of your life! Don't let anyone tell you that it is all in your head! (GRRRR - Doctors make me sooo angry sometimes!!!) As far as the money goes - Marian and the other sisters are right - there are options out there. Check with the United Way in your area. Sometimes they can help - or if there is a YWCA. And if that doesn't work, then you may want to contact an attorney.

Don't be completely discouraged...I know it seems like so much - especially when you are so young. God know's I've been in your shoes! (I'm not that much older than you!!!) There is help out there - and pain management does work!

Please let us know how you are doing! Take care!

Cortney
  #10  
Unread 03-04-2005, 01:23 AM
Desperate and need HELP!

Dear Kelly,
Please tell me your Dr. only wanted you to see the pysch to help you ease the mental pain that chonic pain causes, not that it's in your head! If he really thinks it's all in your head, run to a different Dr. I'm so sorry for all the pain your going through.

As far as the bills, The first of the month is the best time to get help. Call all your local churches, the salvation army ect... also call the electric company as sometimes they will help with your bill. If I remember right you can get help once a year through them. It's worth some phone calls. Also try the womens shelter in your area, they might not help, but they might know who will. Good luck and keep us posted.

This is just for you!
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