ENDO Messages for November, 1999: Re: newest letter from EA

Re: newest letter from EA

From: Michele (anonymous@obgyn.net)
Sat Nov 27 10:00:41 1999

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Dear Stacy, First of all, I want to say that I completely understand where you are coming from with the letter that you sent. My hubby, parents, and even my best friend demanded that I stop reading my books on endo and websites, etc. because it was "depressing". Which I agree that some of it did get me down, because there were not too many success stories, and i would end up in tears. So when I find myself getting depressed from it, I take a break from reading and researching about it until I can handle it better. But the harsh reality of this disease is that there is not a cure for this, and I think people need to be made aware of just how serious it is to ignore, and try to pacify someone who is in pain from this disease. I believe that was the message from that letter. I was in bed a couple nights ago, and I was wondering why my husband was taking so long to follow, as we both had to work in the morning. I asked him what he was doing, because it was so quiet, and he told me "I was reading your letter about endo". I think it affected him a lot and showed him how serious this can become and what I have to deal with. He has been good about it so far, but I think that letter really blew him away and made him understand the seriousness of this disease. I cried for that girl and it made me more determined to help others in any way that I can.

In the endo associations newsletters and publications, they have a lot of wonderful info about the disease that some docs I have seen don't even know about. So they have been very helpful to me in that respect. I agree with you that more success stories need to be put out there, so that us endo sisters don't feel so hopeless about our situations. That was a wonderful suggestion. Since I have had my surgery with the endo specialist, I have been feeling a great deal better than I did before the operation. If a few years or more passes by, and I feel comfortable considering myself as a "success" story, I will let the association know that they can publish my story for others to see. If not, I will continue to search for answers.

Sorry to make this so long, but i felt really strongly about that letter and that poor young girl and her mother. I intend to save that letter, and if I ever encounter another doc who blows me off or diminishes my pain, I will show it to them. I can handle it, but I doubt one of their young teenage patients will be able to, and I never want to hear of another young girl suffering like she had to, or God forbid, another family that has to lose a child.

That's just my two cents,

Love to you and all of the endo sisters, Michele

>From: anonymous@obgyn.net
>Reply-To: anonymous@obgyn.net
>To: Multiple recipients of list ENDO <anonymous@obgyn.net>
>Subject: Re: newest letter from EA
>Date: Sat, 27 Nov 1999 04:01:55 -0600
>
>Wow Stacy,
>
>l didn't take it the same way as you.
>It just goes to show how we are all different,
>what effects one person one way,may be different
>for another.
>l have been waiting for someone to actually be
>noted as committing suicide because of endo.
>Not because i am morbid but it had to happen.
>How much do we have to suffer before someone
>listens to us.
>Thats how i took what the EA said.Sorry if i don't
>agree but i am sure you understand and i hope you
>will forgive and forget and continue to support them,
>at a later date.
>Hugs,
>
>Belle.
>
> > Wanted to pass this email that I sent to the EA along
> > to all of you here.
> > love,
> > Stacy
> >
> > --- anonymous@obgyn.net wrote:
> > > Date: Fri, 26 Nov 1999 21:23:48 +0000
> > > From: flemin98@bellsouth.net
> > > To: endo@endometriosisassn.org
> > > Subject: newest letter from EA
> > >
> > > I am very highly aggravated with your organization!
> > > Today I received in the mail, a letter about a
> > > teenaged girl with endo
> > > that committed suicide, and a request for more
> > > donations.
> > > Firstly, let me say that I have reccommended many
> > > women with endo to
> > > join your association, and to receive your
> > > newsletter.
> > > I have met literally hundreds of women on-line who
> > > have endometriosis,
> > > and keep in touch daily with many of them.
> > > I have volunteered my assistance in helping with the
> > > walk for awareness.
> > >
> > > This latest mailing offended me beyond words!
> > > Is it not bad enough that those of us who suffer
> > > from endometirosis and
> > > chronic pain also have a tendency towards depression
> > > without being
> > > reminded how horrible it can be?
> > > And what about those who are taking hormone
> > > medications, like Lupron?
> > > How completely out of line you are!!!
> > > I would more be more likely to donate money if I
> > > received a letter
> > > describing a woman who has gone ten years without
> > > surgery and is not
> > > having to take pain meds!
> > > Rest assured, no more of my money will be spent on
> > > your organization.
> > > Sincerely,
> > > Christine Stacy Fleming
> > > Chattanooga, Tn
> > >
> >
> > Thousands of Stores. Millions of Products. All in one place.
>

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