Re: Question from an old visitor

From: toni welsh (
Tue Feb 20 12:54:29 2001

At Tue, 20 Feb 2001, Merri Ellen wrote: >
>At Sat, 17 Feb 2001, toni welsh wrote:
>>At Fri, 16 Feb 2001, Merri Ellen wrote:
>>>Hello to all and hello to Helen!
>>>You probably don't remember me as I have not posted here for quite a
>>>while. I found this board in 1999 when I had what I thought was an
>>>adhesion flare-up, as I call it.
>>>You encouraged me to pursue all avenues of diagnosis and I did. (Very
>>>grateful for your encouragement to pursue that)I wanted to label it an
>>>adhesion problem, get a surgeon to go in/stop the current pain, and then
>>>move on. Well...1999 I was given a diagnosis of Fibromayalgia in
>>>addition to my adhesion problem. Treatment for that squelched many of
>>>the symptoms that had plagued me for years. Then in 2000 I started to
>>>feel a variety of symptoms that included pain but did not feel like the
>>>adhesion variety. Anyone who suffers that pain knows that it is very
>>>specific and you are not likely to mistake it for a tummy ache or a
>>>tooth ache! Flu hit in December 2000 and I never recovered from it.
>>>January 2001 my primary dr. decided to run a Hepatitis panel and
>>>discovered my problem: Hepatitis C. During my adhesion lysis, total
>>>hysterectomy, gallbladder surgeries I was given blood transfusions that
>>>probably exposed me to the virus. The blood was not properly screened
>>>until 1992.
>>>I am returning to this board to see if there have been any improvements
>>>in the adhesion lysis technique as I will have to have a biopsy of my
>>>liver. The last surgery revealed that my adhesions had wound around my
>>>bowel and had "secured" themselves to my spleen and liver. Although
>>>they were removed in 1987 I am fearful of the progress they might have
>>>made since that time. Although my vow at the time of the last surgery
>>>was: "NO more surgery...I would rather die!, the condition of my liver
>>>may cause me to rethink that position.
>>>My prayers are with each of you...I can empathize with your pain.
>>> biggest thanks go to you for your encouragement to me. It is
>>>a dangerous thing to self-diagnose, just because we have had this pain
>>>so many times. I was basically demanding for them to listen to MY
>>>diagnosis and DO something for me. If I had not followed through I
>>>could have put myself in more danger than I am right now. Listening to
>>>my dr., putting up with testing that made no sense to me, being
>>>pro-active in my healthcare decisions and accepting the fact that I may
>>>have OTHER health problems besides adhesions...may just have saved my
>>>Warm Regard,
>>>Merri Ellen
>>Hi Merri Ellen,
>>I sort of remember you, I have been on this forum since the year it was
>>found, I do not know if you remember me. My story is on the quilt. My
>>sister just had a hyterectomy, 2 weeks ago, and she was diagnosed after
>>a biopsy with hepititis C , she had blood transfusions many years ago,
>>she also has crohns disease. The drs have not really saod what you do
>>for this. Have you been diagnosed with it too?
>>When they went in to do her surgery, the gyn and general surgeon did
>>what they had to do, she also has a colostomy. She has recovered very
>>well from all the hysterectomy, and it was done laparotomy, like mine
>>was a very large incision.
>>I have been having my troubles, I saw my gyn on thursday, and he thinks
>>still that my situation warrants one more try, and he let me know he
>>would go in with a general surgeon. I feel better about it. I hope you
>>are all okay, and I have to get caught up as we just bought this
>>computer today. I will talk to you all later.
>>Take care of yourself,
>Dear Toni,
>I remember you well! I am sorry to hear about your sister and her series
>of problems that are capped off by hep c. Ask her to find out which
>test they used to diagnose her hep c. My first test came back positive
>and yes...I had lots of blood transfusions in the 80's. Then my second
>test, more expensive/supposed to be better, registered negative. So,
>now I am seeing a hepatologist for a complete workup. Please make sure
>she gets the most current and up to date info and care as many gp dr.
>are not knowledgable about this potentially dangerous disease. Contact
>me by email for links and more info.
>I called my gyn yesterday and he wants to me to come in for an exam and
>a discussion about going in with a general surgeon to do an adhesion
>lysis. I am 37 years old and my hysterectomy was done at age 22...he
>still remembered me and I have not seen him in all these years. When I
>do see him I will ask him about endo because many of you here suggested
>that endo must have been the reason I needed a complete hyst. at such a
>young age. Even on the phone yesterday he recalled the ectopic preg.
>surgery, the three adhes.lysis surgeries, and the total hysterec.
>surgery without ever mentioning endo...just the massive amount of
>adhesions. More than he had ever seen in any other pt. Not that I want
>that award mind you....thanks but no thanks. Sounds like I have more
>than one problem going on and it will take more than one dr. to get to
>the bottom of it. Do you have a general surgeon that you would trust to
>work with your gyn? I had a lump removed under my breast and the surgeon
>I had for that was wonderful. I hope that they will be able to work
>I feel pretty good today...I really don't know why...but I am grateful
>for the reprieve. :^) Had a good cry yesterday and got all of my
>frustrations, and fears out in the open. Sometimes it helps just to
>admit that I am angry and I am afraid. Afraid that I will end up in the
>ER at the mercy of some bozo who can offer me nothing but grief. Angry
>that I have physical conditions that I cannot control or eliminate on my
>Well, it was good to hear from you again and I will be reading the board
>for new info and to see how you are doing. Thanks again for your reply
>message and all the help you have given in the past to me.
>Warm Regard,
>Merri Ellen

Hi Merri Ellen,

So glad to hear from you again, I am now going to pain management, and am contemplating surgery again. I asked my gyn if he would go in with a general surgeon, I have a VERY skilled gyn now, he did my TAH in 94, but he did not do my c section, tubal , and reversal when I was young, he did tell me he would, he shyed away from me for awhile, but i feel etter to know that he is willing to do the next surgey if I decide to go. I am terrified to go through no more, but I am thinking about it. I am tired of the pain with laxatives, and xometimes they do not even work.

My sister is doing great!

I have to run but I will be back soon.

Love, Toni

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