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Re: She Says I Have Endo And Need Lapro- What Do You Think??
From: bren (anonymous@obgyn.net)
Tue Oct 28 01:06:08 2008
Hi Leyna,
I'm sorry to hear about your symptoms and the pain you are experiencing.
It is also very frustrating when a doctor just throws you around,
"pushes" you out the door, or just medicates you more rather than really
treating the cause of your pain and symptoms.If you have endo, it's very
possible that your symptoms have been masked for years while on birth
control as this is one of the "treatments" (not a cure) for endo to
minimize any types of endo growths and its symptoms and pain. Also,
many women go undiagnosed until they start to have debilitating pain
(many go for years thinking that their menstrual pain is "normal" due to
some "brainwashing" done by unexperienced Drs.), or are at the
reproductive years and their symptoms/pain get worse, or some who
"accidently" find out they have endo because they are having difficulty
getting pregnant, etc... My best advice to you as w/ probably many
women on this forum, especially if you have good insurance, is to make
sure you go see an experienced endometriosis specialist who does exision
surgery. You can always research for one online, or if you inform us of
which area you live in, then many women on this forum have wonderful
information they can offer you for endometriosis specialists close by.
If you do have endometriosis, you will definitely want to have surgery
done w/ not only one who is experienced, but one who actually excises
("cuts" out) the endo, adhesions, and cysts, etc etc. There's no cure
for endo, but all the women who have had exision surgery for their endo
are the ones w/ "success stories" and relieving them from all their pain
and symptoms. Also, it is less likely for endo to grow back so quickly
w/ exision surgery,...whereas if the surgeon just "lasers" or burns out
the endo, it is most likely that the endo will grow back and you will
end up sufferring again along w/ possibly more problems such as scar
tissue from previous lap/abdominal surgeries and having to go back for
another lap. I would also ask for a fertility test just in case if you
do end up being officially diagnosed w/ endometriosis (that is, if you
are planning to conceive in the future) as endo can cause infertility
(not to frighten you...just an fyi..there are many women w/ endo who
have had success w/ getting pregnant and having children)...you should
also find out if you have a family history of anyone who had/has
endometriosis or adenomyosis as this will be informative @ your doctor's
appt w/ the endo specialist. Well,I hope you feel better as many of us
suffer from debilitating pain and symptoms on a daily basis. I hope
this info was helpful. Take care.
**Bren**
At Tue, 28 Oct 2008, Leyna wrote:
>
>Hi All,
>
><b>My name is Leyna, and I recieved a tentative diagnosis of
>endometriosis.</b> Here's why it's tentative/a backstory:
>
>In the spring of '07 I began getting tension headaches which grew worse
>until September '07, just after I got married, I began getting terrible
>migraines. I immediately went to my PCP, and due to my headaches, my
>weight at the time (265 lbs), and recent diagnosis of reactive
>hypoglycemia (which can both be signs of diabetes down the road), she
>prescribed me a medicine called Topamax. Topamax is a miracle medicine-
>not only are my headaches 99.5% gone, by the end of the year I had lost
>40 lbs that I hadnt been able to lose through diet change or excercise!
>
>However, in November of '07 I began having menstrual cramps. This was
>extremely unusual for me because I have been on birth control pills
>since I was 15 due to severe cramping and nausea and and havent really
>experienced those since. The cramping wasnt terrible by any means- just
>uncomfortable- so I ignored it. Until around Christmas, when sex began
>to be painful. At first I thought I'd just hurt something somehow and
>was sore- but it continued for far too long to be normal. I feared
>something very serious was wrong, so I set up an appointment with my
>gyno.
>
>She gave me an exam and said everything looked and felt fine. Then she
>reviewed my medications with me, and said that my pain could be due to
>the Topamax having a bad interaction with my birth control- she upped
>the hormone level in an attempt to compensate, since I did not want to
>stop taking the Topamax or the birth control. By February this year,
>nothing had changed except that I began being queasy during my cycles
>and experiencing the discomfort outside of the cycles, so she gave me an
>ultrasound. The ultrasound revealed a cyst on my right ovary. This
>upset me alot, but she was still convinced it could have been caused by
>my medications, so she switched me from the pills to Nuvaring, hoping
>that if the meds were absorbed into my body in completely different
>ways, they wouldn't have a chance to interact badly. She scheduled me
>for another ultrasound in three months to see if there was any
>improvement.
>
>My ultrasound in May '08 revealed that the cyst had neither gotten
>bigger, nor gotten smaller. Again, the only change were my sypmtoms...
>the pain is worse, more frequently appears outside of my cycle, and
>occaisionally I experience nausea with the pain. My gyno seemed to run
>out of ideas- she explained that I could have endometriosis, which was a
>cause that had NEVER come up before. She said that the only was to
>check for endo is to do a laproscopy, which they would need to do to
>remove the cyst anyway.
>
><b>Sooooooo</b> here are my issues (aside from possibly having
>endometriosis):
>
>I know that my symptoms (after reading up on endo, I have others that
>match- such as back pain and frequency urinating, even the cyst) match
>up to endo... but... I guess I feel like I'm more sure I have it that
>my doctor. That is to say... if it was such a real possibility all
>along, why didn't it come up earlier? Why did my doctor play with my
>medications for so long first? I mean, has anybody even ever heard of
>medication interactions causing pain or cysts?
>
>I guess what I'm getting at is should I get a second opinion or just
>start going to a different gyno. I don't think she's wrong, I'm just a
>little upset at how she came to the diagnosis.
>
>I delayed scheduling surgery because I was not on insurance that would
>cover it, and my gyno was moving to a different practice in August- and
>in August my husband lost his job, so I have had to delay further. He's
>gotten a job with the state now and our medical benefits, once they
>start in November, will be wonderful... but I want to be sure of what
>I'm doing under whose instruction before I decide to do anything. What
>do you think?
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