Re: at my wits end

From: Donna Johansen (donnajohansen@telus.net)
Wed Jan 14 21:38:30 2009


Sweetie, you have really had enough to carry for a long time. I only suffered for 10 years and I was dying up until I obtained surgery in Germany in June of last year. My bowels were knotted up with adhesions as was my bladder, and even up to my liver, dense, hard, unforgiving adhesions.

So far I have no pain and the only problem is a bowel issue that is not life threatening. After two unsuccessful surgeries, my doctors refused to do surgery and sent me home to die. I couldn't eat, threw up if I did, and lived in excruciating pain. Having lost over 65 lbs. I was so weak when I looked for a new answer and found it in Germany. My family had to mortgage their house to send me but they did it.

I don't know if you have family who would support you going overseas but it might be worth looking into. I also know that there is a doctor in the US who has trained with Dr. Kruschinski and he has a good reputation. You need surgery using different methods than what they have done to you so far. The old method only makes the problem worse. The new one uses a barrier to stop re-growth of the adhesions. Do some searches on this and you will find reams of information.

Where do you live? Most places don't cover the cost of doing this right and I am researching this in anticipation of getting some sort of literature out to the medical community.

Anyway Lisa, my thoughts and prayers are with you. I too have been unable to pay for medications and have gone through terrible withdrawals..it stinks. I did find out later that in BC where I am, there is a program to cover "essential" medications and some of these end up costing $1 or nothing. You may want to look into that.

Write me if you wish, I would love to hear from you.

Donna

>
>-----Original Message-----
>From: adhesions@adhesions.org [mailto:adhesions@adhesions.org] On
>Behalf Of Lisa
>Sent: Thursday, January 08, 2009 7:44 PM
>To: Multiple recipients of list ADHESIONS
>Subject: at my wits end

This is my first visit to this site. I have suffered since the age of 12 with endometriosis. I wasn't diagnosed until 27! I spent so much time in doctor offices with doctors telling my parents and even my husband that there was nothing wrong with me and I was faking it. The first surgery I finally begged a doctor enough that she did a laparoscopy and saw what was in there, she took pictures sewed me up and told my husband it was too much for her to handle and I needed to go to a specialist. I needed reconstructive surgery because the 13 years of endo had clubbed both of my ovaries to my uterus then wrapped around my uterus to my bowels and was attached to my adomenial wall were it was pulling everything. I had relief for 6 months. Then it started back up again. I had a second surgery to remove adhesions. Relief only for 3 months. Now it was back and no one would help me. I was in the emergency room every week. The pain so bad I just wanted to die. I begged doctors to do something and finally I was just given a choice to have a hystorectomy. I have no children and they said I was probably infertal anyway. So I went through with it. After the surgery I was waking up in sever pain and they would not give me any pain medicine. I couldn't understand why. I was laying there after having a hystoretomy and they gave me nothing for a day. I was passing out from the pain and my body was going into shock before the finally put me on a morphine drip. I went home and a few days later on Thanksgiving morning I got out of bed and blood just started flowing out of me and wouldn't stop. I thought I was dying. My husband rushed me into the hospital and I had an infection aroung the sutures. They didn't understand why after my surgery I was not given antibiotoics. After a couple of days I was sent home. Sure enough only a month later the pain started again. So I went to the doctor that gave me the surgery and was told she saw adhesions in there on my bowels but didn't remove them because they shouldn't cause any pain. And that I have no pain tolerance, she could not do anything for me. I was sent to a pain management center. I was put on very heavy meds and could barely stay awake anymore. My husband was layed off and we lost our insurance. I cant afford my doctor or my meds now and cant get out of bed or leave my house. This has all put a strain on my marriage. If he were to leave I would be homeless. I cant work. I just dont want to get out of bed anymore. I am having horrible withdraws now from all this stupid medication. I feel so hopeless........


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