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Re: Is it all in my head?...to MissD
From: Mary (anonymous@obgyn.net)
Tue Jan 29 20:20:30 2008
Applause! Applause! Applause! Applause! Applause! Applause! Applause!
Applause! Applause! Applause! Applause! Applause! Applause!
:)
At Tue, 29 Jan 2008, Sherri wrote:
>
>MissD,
>
>Hi there! I totally agree with Mary! Well said, Mary! As a woman living
>with endo for the last 13-14 years, I'm here to tell you that YES, it is
>very typical for regular OB-GYNs to find nothing indicating endo by a
>pelvic exam, ultrasound (including vaginal US) or even a CAT-scan! It's
>too bad for us that most of these doctors are not secure enough in
>themselves to ever admit that THEY just may not be able to help us,
>hence the "it's all in your head" routine. They would much rather us
>(and our spouses, families and friends) question our sanity than admit
>that they do not know ALL. Sadly, it is very common for them to give us
>the "run-around" when it comes to endo. As I'm sure you know by now,
>the only definitive test to diagnose endo is by a lap, and even then a
>lot of these doctors don't recognize endo in ALL its various
>appearances. This is also the reason that many women with endo are told
>that none or very little was found during their lap surgery. It's
>really a disgusting situation when you think about it! Like Mary said, a
>person with any number of other diseases is NOT treated as a crazy,
>hysterical woman just seeking the almighty drugs! The best thing you
>could do for yourself at this point is try to find an endo specialist,
>or at least a different GYN. Trust me, I KNOW how frustrating and time
>consuming it is to have to do that, but it really is better for you. I
>would run away from your current doc as fast as I could! Anyone (doctor
>or otherwise) that thinks it is okay to make an already sick person feel
>bad for being sick, is completely mental!!
>
>The symptoms you are describing fit endo to a "T"! Yes, cysts that
>continue to grow, return and cause pain are also very common symptoms of
>endo. The doctor is correct that cysts are normal, but ONLY when they
>are the "functional" type. Chocolate cysts are a form of endo and are
>NOT normal. When these cysts burst, they do cause severe pain, in my
>opinion. No wonder you get sick for weeks after these cysts burst! They
>are filled with very dark, or "old" blood-hence the name, and when they
>burst, the blood then ends up in your abdomonal or pelvic cavity. Guess
>what happens then? That's right, this blood can end up causing adhesions
>to form anywhere that it ends up going. Adhesions also cause severe
>pain and are very common in women with endo. Endo has always been the
>cause of my flu-like symptoms before my periods. Every time that I had
>my period I would run a fever, bloat, be really nauseous, vomit, and
>have horrible cramps and pain. I was always told that endo could not
>cause those symptoms and that I must have some type of infection, or
>cold, or some other BS story. I never did, though. It was always
>caused by my endo! Also, with a family history of endo, you are way more
>likely to have it, as I'm sure you know. How your doc could possibly
>think it could be anything else, I just don't get! This doctor sounds
>delusional and very scary to me. Do you have any idea what options he
>normally offers after a lap shows endo? If you have been living with
>this for the past 10 years and it just keeps getting worse, then it very
>well may already be way out of this man's league.
>
>NO, you are NOT a hypochondriac! YOU ARE NOT ALONE!! Sadly, there are
>so, so many of us dealing with the exact same thing. By no means should
>you "just deal with it"! You say that it's been going on for a while
>now, and the reason the doctors never find out what it is exactly, is
>b/c you get frustrated and end up just living with it. Why do you feel
>that you (or anyone) should have to deal with and live in pain like
>that? Is it because the cold, uncompassionate, idiotic doctors tell you
>that it's all in your head? Please do not let these doctors make you
>doubt yourself! It's your body and your life, and only you know how bad
>it is. Also, it will be YOU that has to live in pain and very likely
>the depression that being chronically ill can cause. You have to
>advocate for yourself, MissD! No one else can do that for you. Lord
>knows that these doctors are not gonna give a damn if your life is
>affected negatively by endo!! Please do not give up or give in! I have
>been in your position more times than I care to count, I'm sure a lot of
>us have. Believe me, I know that it is not easy to find a new doc, or
>endo specialist and have to start over at square one as I've had to do
>it quite a few times (some were my decision, but I've also been
>dismissed as a patient when I wouldn't do what that doc wanted me to do,
>ie, Lupron, etc.)but in the end, it was the best move I could've made. I
>have been labeled a drug-seeker, a hypochondriac, a non-compliant
>patient, crazy/depressed and/or a bitch among other things. At one
>point, I even began to think I might actually be crazy, but through it
>all, I have not given up. I can't and I won't! I will fight this
>disease and the medical community at large until the day I die. Yes,
>I'm tired of it all, and I have wanted to give up many, many times. I
>refuse to though. I want this disease to be known and recognized for
>what it is, for me, my daughter, and all the women that come after me.
>Until endo is widely recognized and there are much better "treatments"
>than Lupron, pregnancy or hysterectomies, I don't feel like I have a
>choice to quit fighting for it. Please fight with me! Also, MissD, feel
>free to e-mail me directly anytime. I hope that something I've said
>here is useful to you! I apologize for this being so long....I never
>could shut-up! LOL! Good luck to you!!
>
>--
>Sherri :)
>
>"They must find it difficult...those who accept authority as the truth,
>instead of truth as the authority."-Gerald Massey
>
>At Mon, 28 Jan 2008, MissD wrote:
>>
>>Is it typical for the gynocologist to find nothing indicating
>>endometriosis during the pelvic exam and ultra sound, but the person
>>could have endometriosis causing all sorts of problems? I have cysts on
>>my ovaries that have ruptured several times over the past few years
>>making me very sick. It is terribly painful and it makes me sick for
>>several weeks. But then there is the every month problems, feeling like
>>I have the flu before my period, intense bloating, bad cramping and
>>painful intercourse which sounds so much like the stories that I have
>>read here. I am going in for a laproscopy in a few weeks and after the
>>pelvic exam today, I started to feel like it was all in my head again!
>>He said that cysts are typical and part of the cycle. I know this is
>>true but do they normally rupture and feel like labor pains? I have a
>>family history of endometriosis though, and so he suggested laproscopy
>>just to see. I have been dealing with this pain and feeling sick every
>>28 days for so long with the past 10 years getting progressively worse.
>>The doctors have never been able to figure out what it is because I get
>>frustrated and think I should just "deal with it." I have three weeks to
>>sit and wonder if I am just a hypochondriac. Has anyone ever been in
>>this position? I would love to hear that I am not alone.
>
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