ENDO Messages for January, 2007: Re: What am I supposed to do?

Re: What am I supposed to do?

From: anonymous@obgyn.net
Sat Jan 27 13:42:16 2007

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Dear Melissa,

For 85% of women with endometriosis there is a long-term solution that improves fertility (some go as far as saying a cure). Even without treatment, most women with endo are fertile.

For more info about endo and treatment options, read Mary Lou Ballweg and the Endo Assn's recent book _Endometriosis: The Complete Reference for Taking Charge of Your Health_. There's a lot that has been learned about endo the hard way, for too many women, in the last few decades. You'll want to know as much as you can to spot "old school" doctors who recommend things that haven't been proven to help (like hysterectomy). Writing other women struggling with this diease was a really really smart first step...something I only wish I'd done b/f going to a doctor.

If I were you, I'd find a doctor recommended by other endo patients at http://www.geocities.com/endovictims/endodocs.html or by asking the EndoDocs group at yahoo. Get some pain medicine to make things more bearable and so that you don't have to feel too desperate as you make important health decisions. If I were you I'd want to rule out whatever you can of other problems you may have or causes of your suffering (look up IC, interstistial cystitis, while you're at it). And if it still looks like endo have laproscopic surgery to excise the endo with an endometriosis specialist that has a strong reputation and a high success rate (nonrecurrance of pain over many years). Most doctors will want you to try birthcontrol to control your symptoms first, I wish I'd gone with surgery (and gotten a definative diagnosis) before I messed with my hormones, but I imagine you many need to address your hormones to get your cycle more regular. If you hear "Lupron" RUN AWAY (search this forum to understand why).

If you can't find a recommended doctor locally or you just don't feel ready to deal with an inperson visit, you can write up your experience and gather any medical records you have and send them to one of the nationally known excision specialists who do record reviews and phone consults for free (write me for the ones I know about or search earlier posts).

There is a lot of reason for hope. Please don't get overwhelmed and take care of yourself (get out of pain ASAP).

WIshing you the best. Feel free to write me.

Jenn

At Sat, 27 Jan 2007, Melissa wrote: >
>I am 20 years old and have been having tremendously painful and long
>periods. a friend of mine recently told me to look into seeing a doctor
>because I might have endometriosis. When I did some research, I
>discovered all of my symptoms seem to agree with her. My periods are
>unbearably painful and last sometimes months at a time. However, my
>cycle is so random that sometimes I only get it once every 3 months, and
>then it can last up to 2 months. Things seem to be getting
>progressively worse. I've decided to finally go and see a doctor, which
>I should mention, I am completely against. Through research I
>discovered that endometriosis can cause infertility, which scares me to
>death because I love kids, I have been a nanny for years and plan to
>have at least 4 kids of my own! What can I do? I am really scared and in
>so much pain. It hurts to move and it makes me physically sick to the
>point of vomiting. If there is nothing that can cure this illness
>should I even bother finding out if it definately is what I have? If
>anyone has any solutions or ideas please let me know.... thanks!

Next message: Katie: "menstrual bleeding from rectum/rectal ulcer, and symptom queries"
Previous message: Melissa: "What am I supposed to do?"
In reply to: Melissa: "What am I supposed to do?"
Next in thread: Robyn: "Re: What am I supposed to do?"

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