Hi Caryn, Just want you to know that you have found a wonderful support
system in the Adhesions site. I have been coming here for almost 2
years and have made a lot of friends that help support me when I am in
pain, down, frustrated and even when I have been teetering on the edge.
So I am so glad that you made your way here. I am not sure what a mayo
is or a c/s, maybe you can elaborate a little on those?
I had an operation when I was 15, I am now 33. During the operation in
'85' 1/3 of my uterus was removed in order to save my life. They told
me I might not be able to have children. But I did, I had 3 kids all by
C-Section. With each one the scar tissue inside got worse and worse, by
2000 I had to have a mandatory hysterectomy. It was bad inside, real
bad. After the operation I got a mass of scar tissue back right away
and it is continually getting worse. I am in a lot of pain have bad
episodes, and have been put on disability by my work place and by the
state of Washington. The scar tissue is adhered to my abdominal walls,
my bladder and every thing it can get a hold of. So far nothing has
been life threatening and I can't find a surgeon to help me, they all
think by doing another operation they will only make a bad thing worse.
Hope has it that the FDA is soon to approve a product that is being used
in Germany. The product is called SprayGel, with it the Dr.s can open
up the patient, remove the scar tissue, spray the gel to coat the
incision marks and then the scar tissue doesn't come back, the gel
dissolves in about 2 weeks after the site has had a good chance to heal.
There are so many of us that are waiting for this product to be
approved.
What are you adhesions like and how long have you had them, do you even
feel like the pain is in your head? Well I am here to confirm that it is
real, I use to think I was crazy, that this couldn't really be happening
to me. It took a couple of Dr.s that really understood (thank God for
them) to explain it to me, then I found this site and found out that
there were others out there suffering just like me, their symptoms all
rang home with me, then I began to understand and I was then devastated,
became very depressed. The Adhesions site helped me to cope, I started
seeing a pain counselor who also helped me to cope and deal with
reality. I still get overwhelmed sometimes and whine that I don't want
to be like this anymore. I feel like to be like this just one more day
is to feel like this forever. That is about where I am right now, tired
of the pain and frustrated that this is me for the rest of my life. I
try to remind myself that I don't have to be like this forever, but it
is hard sometimes.
Well I have to go for now, but I hope that we can be friends write back
and let me know how you feeling. I am here for you if you want me to
be.
God Bless,
Tammy Lynn
At Fri, 16 May 2003, Caryn wrote:
> >I'm glad I found this forum. I have had 2 myos and 1 c/s in the past 7 >years. During my last myo, my ob/gyn mentioned that I had lots of >adhesions. He said that he would have to do surgery in about 4-5 years >to remove it. Anyhow, he did have me sign a consent for a hysterectomy >but didn't do it so I was happy. > >I do feel the adhesions and you mentioned leg cramps. I've been feeling >that lately. In fact, I had a charlie horse the other morning, and I >haven't had one since before my pelvic tumor was removed last August. I >feel the adhesions in my belly and surrounding areas and also in the >bladder in the morning. It hurts somewhat when I urinate first time in >the mroning. My belly looks as though I am about 2 mos pregnant but I >am very thin to begin with that is why I noticed this. > >I look forward to participating on this forum. Caryn > >At Thu, 15 May 2003, Tammy wrote: >> >>Hi again, I was wonder what, if any digestive problems anyone is having >>that are associated with or related to abdominal adhesions. I seem to >>have one thing after another happening to me. >>Also, I have recently gone through a really bad bout with a horrendious >>headaches that caused vomiting. It lasted about 3 weeks, felt like a >>spinal headache except no relief could be found and caused me to be >>hospitalized. I did have my head thoughouly examined and there was >>nothing. They put me in a head traction to open and relax the >>indentations in the back of my head where it joins my neck. well those >>are subsiding now, but I am just wondering what's next? >>OK, one more.....LEGS....does anyone feel pain in their legs from the >>adhesions affecting the nerves and blood vessels in the pelvic where the >>legs join in? I have pain that sits in my pelvic and runs down into the >>crook of my legs, it then spreads down my inner thigh towards my knee. >>It use to do this mostly in my right leg now it has begun to do the same >>thing in the left one. I am scared that even if they can clean up the >>scar tissue, will they be able to repair the damage in my legs? >>Well those are my thoughts for now, I am going to go look at and respond >>to some of the other messages on the board. >>Hoping the Best for All, >>God Bless, >>Tammy Lynn