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Re: Hi angels...here's my story. Can anyone help?
From: anonymous (anonymous@obgyn.net)
Tue Apr 16 00:47:59 2002
Dana,
Please get off of the pill! You know its not good for you (your calf
pain; your family history; your previous doc who took you off of it out
of concern for your health; etc.) -- get off of it and also, find
yourself another gyn. You said you live in Huntsville -- the only
Huntsville I've ever heard of is located in Texas -- is that the
Huntsville of which you speak? So first let us know where you're
located.
Also, re the pain -- have you tried eliminating all dairy, red meat,
phytoestrogens, excess caffeine, eggs, chocolate, soda, etc.?
Eliminating dairy and phytoestrogens (beans, soy products, tofu, etc.)
has helped many endo sufferers (well, that depends I guess lol -- some
endo sufferers feel better when replacing cows milk with soy milk, BUT
other endo sufferers can't eat/drink any soy products/phytoestrogens
because it makes their pain worse (I don't quite understand it but I'm
one of the types who can't eat/drink anything estrogenic) -- but most
feel less pain when they eliminate ALL dairy, eggs, cheese, etc. and
the other things I listed above. I can't promise you that it will help
you, but many have been helped by eliminating these foods/products. Try
it to see whether your pain will be lessened (it made it a *huge*
difference for me).
By the way, many of the top endo specialists now say that the pill
doesn't stop endo progression anyway. Some endo sufferers have more
pain on the pill, some have less pain -- for those who have bad
menstrual pain, the pill often helps in lessening that pain (again it
depends, we are all individuals and what works for one may not work for
another).
At Mon, 15 Apr 2002, Dana wrote:
>
>Hi everyone. My name is Dana, I'm 20, but too often my body leaves me
>feeling 70. I've been getting sick on and off ever since starting my
>period at age 10--which was odd considering that I was very small for my
>age and didn't even look that old. At any rate, I suppose if
>endometriosis had been talked about a bit more we might have realized a
>long time ago that my period-related illnesses weren't just
>coincidental. In fact, the only time I remember not being sick was when
>I became anorexic, and my periods stopped completely. As bizarre as I'm
>sure this may sound, sometimes I wish I could make myself crazy again,
>just to ward off the pain.
>
>Anyway, I was finally diagnosed with endometriosis after responding
>positively to Lupron last April. My OB-GYN at the time actually
>performed the laparoscopic diagnosis after giving me the shot, because
>she was so certain the pain was endo-related, and 5 other doctors and 4
>months of appointments all over town had ruled everything else out. I
>have had mononucleosis four times (yes it is possible, and no, they
>weren't relapses), sinus infections galore, bronchitis, walking
>pneumonia, a major kidney infection--just about everything, and none of
>those ever put me out of work or school. However, only weeks after my
>OB-GYN prescribed birth control in hopes of controlling my 10+day
>periods (this was pre-endo diagnosis) I could barely get out of bed.
>
>The best I think I've ever felt was about a week after my laparoscopy. I
>mean really wonderful. I found myself back in the gym, running,
>healthy--I felt absolutely invincible. A couple of months later the
>Lupron was wearing off, and I was feeling a little sluggish, so my doc.
>elected to try a non-tri-cyclic OC. This, however, made me feel worse,
>and I was woken up in the middle of the night by a pain in my leg that
>had me screaming. She took me off of the birth control right away, and
>put me back on Lupron. I was great again until this January rolled
>around.
>
>I moved here to Huntsville in Jan. and unfortunately had to leave that
>doctor behind. The man I'm seeing now is one that a friend at work
>recommended, but honestly I'm horribly dissatisfied. I'm sure most of
>you have all been to doctors that you felt weren't listening at all, and
>such is the case with me now. This Dr. put me on birth
>control--despite what I told him about previous problems both myself, my
>mother, and my sister have had when given hormones. My mother even has
>a hypercoagulatory disorder where, if they give her hormones, she
>develops massive blood clots. I think this OB-GYN here might as well
>have plugged his ears as I spoke, because he told me he puts all of his
>patients with endometriosis on continuous birth control pills as
>therapy.
>
>Now I realize I'm no MD, but knowing that this disease is fueled by
>estrogen, I can't see how giving MORE estrogen to the patient could be
>helpful. It certainly hasn't been for me. I've only been on these
>pills for a little over 2 weeks now, but just this past Friday night my
>calf woke me--I woke up screaming in pain, scaring my boyfriend half to
>death. I can't even get in touch with my doctor--every time I call his
>office he's busy, and I work at a restaurant, and I can't continuously
>make phone calls since we have customers, and it's my job to help them!
>
>I would just make the 3+ hour drive to see my old OB-GYN, as I miss her
>terribly and I don't think she would've refused to give me another
>Lupron injection. I'm well aware of the risk of bone loss, but I was
>already taking calcium supplements, and at least on Lupron, even with
>the hot-flashes, I felt like a person. I haven't felt like me in
>months. Also, a lot of reading I've done recently leads me to believe
>that the laparoscopy I had done last June might've missed some of the
>endo (I'm Stage II so it could've been CLEAR), since they only found
>ovarian and uterine, and I have terrible leg, kidney, and liver
>pain--and honestly I can't breathe these days! One of my managers even
>called me a hypochondriac, saying "there's always something wrong with
>you" though she's the same one who said I was one of the best workers.
>Am I not being taken seriously because of my age?
>
>Sorry about the long message...I suppose I'm very frustrated and needing
>to vent. My question was--do any of you know of a good specialist any
>closer than California or Wisconsin? Honestly, at this point I'd go any
>distance, but someone will need to come with me and I don't feel right
>asking another person to take that much time off for me. Thanks for
>listening. God bless you all.
>
>--
>Dana
>
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