ENDO Messages for January, 2008: Re: Is it all in my head?...to MissD

Re: Is it all in my head?...to MissD

From: Sherri (anonymous@obgyn.net)
Tue Jan 29 17:07:36 2008

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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.

Next message: anonymous: "Please help! endometriosis pain management and PMDD"
Previous message: tanya: "Please help! endometriosis pain management"
In reply to: MissD: "Is it all in my head?"
Next in thread: Mary: "Re: Is it all in my head?...to MissD"
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