Re: please help! (for Kelly)

From: Kelly Murray (klmurray_61@msn.com)
Mon Mar 9 23:00:13 2009

Unfortunately, the doctors don't explain to us in the beginning that the adhesions can come back and the more surgeries we have, the worse it will get until many people have had multiple surgeries and are desperate. I think your options are to find a good pain management dr. that knows about adhesions and if you ever have surgery again, you need to go to one that specializes in adhesion removal. That won't guarentee a cure but you are less likely to be butchered. The other thing you probably need is a good anti-depressant. So, work on finding a pain management Dr. and maybe even counseling for the depression that pain causes and lastly some sort of exercise program. I live with 24/7 pain and bowel and bladder problems. I do go to exercise and stretch a lot. Certain movements that are too painful, I just don't do. I am on the Duragesic patch along with anti-depressants. Lastly, find something that interests you to help get your mind away from it. I know that is hard when you are in extreme pain but I notice if I do other things and try not to think too much about it, I feel better. My worst times are at night. We all seem to focus on finding a surgeon to cure us but I think we need to focus on living with adhesions. Although some of the barriers out there now have showed a little promise. I had surgery in Germany with the Spray Gel. It didn't work for me but there are others that it has. They are now using something new. So, hang in there. Kelly (another Kelly)

> ----- Original Message -----
From: krjmarketing@yahoo.com<mailto:krjmarketing@yahoo.com> To: Multiple recipients of list ADHESIONS<mailto:adhesions@mail.obgyn.net> Sent: Monday, March 09, 2009 9:47 PM Subject: Re: please help! (for Kelly)

This is long but its my story for those who want to read it. I had 3 scopes for endometriosis removal and lysis of adhesions. After my third surgery and being told that my tubes were blocked and my ovaries were severely damaged and constant cysts and reocurring endo I had a full hysterectomy. Unfortunately it wasn't the answer and I ended up in the emergency room a year later with massive pain and through a vaginal ultrasound they found cysts and an ovarian remnant along with the likelyhood of endo again. I then was referred to an Oncological gyno and he recommended another lap. They both did the surgery and I ended up with a bowel resection too. The adhesions were worse than ever too. Three years later I became desperate and went back to the Oncological Gyno and he refused to do anything. I researched and found a doctor who specialized in adhesions, scopes and endo. He did the surgery I asked for and unfortunately I ended up in a bowel perf and four days later I was admitte! d and had emergency surgery. The doctor said it took two hours to get through the mess and cut away adhesions to do the repair. Two weeks ago and almost four years of pain and suffering and a recent surgery for gall bladder, I had surgery to repair a hernia that turned into major multi hernia repairs. I believe that my gall bladder was affected by all of this because it literally just stopped working...no stones just 11% capacity. I am not sure he would have gone in if it wasn't for the hernia and risk due to concerns for more adhesions but he now shows far more sympathy to me for what he found in there. Only time will tell how successful this was. Long answer but now my story is shared. I have cried intensely and have even attempted to end my life for all of the pain and affect on my life. I have wished I wouldn't wake up and even prayed I would just die. But, I have an adopted daughter who is six and I know I have to be here for her. It is so hard some days and I feel hop! eless. Without drugs I don't know if I could go on. Adhesions are bad, but struggling to use your "plumbing" is the worst of it all. I go from diarrhea to not at all and rely on medication for both. No one should have to suffer so much. I sometimes wish I didn't go through with all the surgeries because the threat to the bowel is really not worth it. I am hoping that I will really be better now, but so far none of the surgeries have gotten me better. Now plumbing doesn't work and apparantly I have to now worry about hernias returning. I don't mean to sound hopeless for everone but I hope that all of you really consider all of the risks. Use me as proof of what could happen with surgeries. My heart goes out as I know I am one of the worst cases of adhesions. I have been studied and documented.

Kelly Ps I was 25 for my first surgery, 29 for the hysterectomy and am 35 now. So 9 surgeries in 10 yrs. ------Original Message------ From: KatieSender: adhesions@adhesions.org<mailto:adhesions@adhesions.org> To: Multiple recipients of list ADHESIONS ReplyTo: adhesions@adhesions.org<mailto:adhesions@adhesions.org> Subject: Re: please help! (for Kelly) Sent: Mar 9, 2009 7:36 PM

Kelly,

Were all of your 9 surgeries for adhesion removal?????

Katie

At Mon, 9 Mar 2009, krjmarketing@yahoo.com<mailto:krjmarketing@yahoo.com> wrote: >
>I have had 9 surgeries now and no CT scan has ever

shown the massive mess of adhesions found. My surgeries began with suspect Endometriosis and several years of complaints. Cysts were the secondary reason for going in to remove endo. My point is that in my case no tests or scans ever show the issues well. But I did have some success with vaginal ultrasounds. This showed organs pulled together, etc. It showed my ovary literally bent back and stuck to bowel. I wanted to scream then. You need a caring and knowledgeable GYN. Kathy Maupin in St. Louis has suffered with our fate, so she really cares about her patient's lives. Maybe some of you might consider St. Louis for help. My surgeon is Michael Smith and he is caring and very skilled. He just did my mutliple hernia surgery and removed adhesions in areas I complained of. It was done laparoscopically and at two weeks today I feel amazingly well (so far). I am sorry so many of you can't find the right help. We are really blessed with many amazing doctors here. >
>Kelly

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