Re: Question from an old visitor

From: Merri Ellen (
Tue Feb 20 11:47:07 2001

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 together.

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 own.

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

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