Anna, can U e-mail me?
From: andrea (anonymous@obgyn.net)
Sun Jan 13 14:25:55 2008
Thank you for all this! I would like to keep in closer contact, if
that's ok with you, since we are both seeing Dulemba. I see him
Thursday, for my pre-op appt. So you had 2 pain-free years? Were your
periods normal those 4 mos before the Lupron?
That sucks that you don't know if it was the surgery or the lupron that
helped....I've read articles that say Lupron may cause endo to return
worse than before, since it temporarily spikes your estrogen for 2 weeks
at the beginning of taking it. It may be the doctor's way of making
sure we are repeat customers...I don't know. I think Dulemba wants all
his patients on it, which I think is wrong. I think many women would
heal just fine, without needing their periods suppressed, but how would
he know that if he never gives it a chance?
I did not think he was cocky, but made me mad about the Lupron. No
means no!!! I told him I went to Dr. Johns first in Ft. Worth (he is
another specialist) and he was a total jerk. He only spent 15 minutes
with me, brushed me off and said I just need to go back on the pill
again! I was on the pill for 17 years and believe that is why I have
such pain. The pill makes me very sick, so I can no longer take any
kind of birth control.
I can't decide whether to have my uterus out or not. I just can't tell
if it's the source of my pain, or the pain is behind my uterus. Dulemba
thinks I have Adenomyosis, so that worries me. I don't want the source
of my pain left in there.
Please e-mail me, so we can talk, ok? It would be nice to have someone
to talk to, who lives near by, who is going thru the same thing I am! I
live in Irving, by Las Colinas. I'm 37, no kids, not married. I think
my boyfriend and I are getting close to breaking up too. He has been a
real jerk around the holidays and now blowing me off for my birthday to
go play golf in Vegas, nice huh?
I'm just a mess right now and so overwhelmed...
Thanks,
Andrea
At Sun, 13 Jan 2008, Anna wrote:
>
>Hi Andrea... First of all let me wish you a great surgery and quick
>recovery! I think Dr. Dulemba is a great surgeon and Dr when it comes
>to pelvic pain and he is a specialist in Endo. However, I think he is
>too quick to push certain things on patients whether that be Lupron as
>in your case, or surgery, as in mine. When I first started seeing him
>he wanted me to have a hysterectomy right away!! I had JUST been
>diagnosed with Endo (even though I've had it for almost 20 years), so I
>thought that was pretty crazy. Of course, I said no, so we worked on
>other treatments instead. I personally think that no matter which Dr
>you are seeing you have to make sure that YOU stay in charge of YOUR
>treatment. Only you feel what you feel and know your body. Don't ever
>take what a Dr says at face value; do your own research and feel
>comfortable with whatever you do.
>
>With that said, Dr. Dulemba is a specialist in Endo, and you just don't
>find that with any Dr., so I believe he is worth it for that fact alone.
>I believe some of his "cockiness" comes from that fact that he is a
>specialist in the field and likely knows more than normal OB/GYNs.
>
>My surgery experience with him was very good. He was very informative
>before and after; showed me lots of pictures of my insides and the Endo
>lesions I had, etc. My surgery went off without a hitch. However, I
>have a hard time answering the question of whether or not the surgery
>(laparoscopy) brought me relief. You see, shortly following my surgery
>I started therapy with the Lupron injections. I was on Lupron for 15
>months, but I think it was about 4 months or so after my surgery before
>I started Lupron, and I felt fine during that time. I would say it was
>about 6-9 months after I stopped the Lupron before my pains started
>coming back (@ 2 years post surgery), and ever since then, they have
>just continued to get worse and worse, which brings me to where I am
>today. Since the Lupron worked so well for me I often wonder if it was
>the Lupron that made me feel better or the laparoscopy. I don't
>honestly know how I would have felt after the laparoscopy without the
>Lupron. I am now debating whether to just go ahead and have a
>hysterectomy or possibly just have another laparoscopy. There are
>problems with both options. With the hysterectomy I would not want to
>take add back hormones, since that is what causes the whole problem in
>the first place. And then I run into the problem of having NO hormones
>in me (hot flashes, bone loss, will I grow a mustache?!). Is it healthy
>to be in permanent menopause roughly 15-20 years prematurely? I don't
>know! And then you've got the laparoscopy... I think it's almost
>impossible to get ALL the Endo out with a lap, even if Dr. Dulemba is
>really good. So then I'm left thinking that if I have the lap, how long
>will it be before my pains come back? As you can see, I still have a lot
>of unanswered questions, so I'll be glad to see Dulemba on Monday and
>talk this out.
>
>I wish I could tell you that a lap will solve all of your problems. But,
>just like all the other posts on this site, some things work well for
>people and some don't. I think with this disease there is no answer
>that works for everyone. I believe you have to try different things and
>see how your body responds and find what works best for YOU. The
>laparoscopy is an easy surgery with easy recovery so I'd say go ahead
>and do that before thinking about having a hysterectomy. You may just
>find great relief with it... it's worth a shot!
>
>At Fri, 11 Jan 2008, andrea wrote:
>>
>>Dulemba is who I am having my surgery with on the 23rd. Did his surgery
>>give you any pain relief? It's only been 3 years and you are in pain
>>again?
>>
>>I am glad lupron worked for you, but you are literally the only one I've
>>heard say they loved it. I would never risk it, because once it's in
>>your system, you can't get it out. Too many women I know now have
>>permanent serious health issues from taking it.
>>
>>I have true, factual evidence and drug studies that prove this drug
>>causes permanent health problems. And over 200 side effects reported to
>>the FDA....A woman sent me a letter 2 months ago too, saying her
>>daughter died 22 days after being given Lupron. She was only 27 and
>>healthy. A doctor was also convicted of falsifying 80% of the Lupron
>>studies that went into the leaflet, yet the FDA only retracted two of
>>his studies. Does that mean most of the leaflet is false? I think that
>>drug destoys way more lives than women it helps from what I've read. I
>>did not like the fact that Dulemba kept bugging me about it when I said
>>no to it.
>>
>>But please, tell me of your experience with Dulemba....did you have any
>>relief?
>
>--
>Anna in Texas (working towards a pain-free life!)
>
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