Re: 24 with Reoccuring Endo - Please read and give me your story/feedback!
From: Denise (anonymous@obgyn.net)
Thu Sep 11 03:54:39 2003
Mariah,
Sorry to hear about your experiences. I am glad that you are going to
see a 2nd GYN-I can't believe the first told you it would never come
back-stock it up to stupidity I guess:) I am 22 years old and no longer
have an "outside life." I normally end up staying at home just about
every night because of the pain.
IBS and Endo are very common in going together-if you have endo you
normally have some kind of bowel disorder that is also hard to diagnose.
My GYN is trying to find out how many conditions I do have-I went
through 3 straight years of GI testing because no one wanted to listen
when I mentioned Endo to them (even though my sister and mother also
have it). When they finally ran out of GI tests to do (and imagine when
they all came back neg) I found a General Surgeon that listened to me
and has referred me to 3 GYNs now (the first 2 were completely useless
with their opinions).
If you ever need someone or just feel like you are at that point feel
free to e-mail me at ababy_buddha@hotmail.com I am a great listener:)
Shade And Sweet Water--Denise
At Wed, 10 Sep 2003, Mariah wrote:
>
>Hi there. I'm new to all of this and could really use some advice and
>guidance from other members of this community who've had their own
>experiences with endo. I am bewildered, frustrated, confused, and often
>in so much pain -- endo has truly become a "quality of life" issue for
>me. I guess more than anything, I just wanted to tell someone my story
>and have someone listen.
>
>I am 24 years old. I have always been super-healthy. Last February, I
>awakened in the middle of the night with some of the sharpest pain I've
>ever experienced in my lower R abdomen area. At first both I and my
>doctor thought it was my appredix, but it turned out to be an ovarian
>cyst that burst.
>
>Ever since that moment, my health has deteriorated drastically. Over
>the next three months, I had almost contant pelvic and abdominal pain.
>In April I finally had a Laser Lap, and the surgeon found endo in
>several places, but said I was only Stage I. He cauterized the areas
>where there were implants, and when I woke up, he seemed pretty sure
>that the endo would not reoccur... he had "gotten it all."
>
>I am 6 months post-surgery. After the few weeks it took to heal from
>the surgery, I was in much less pain than before, but other things got
>worse - like painful bowel movements and pressure and bloating in the
>abdomen. I am almost to the point, pain-wise, where I was at wits end
>and decided to get the last operation. Now I am also having pain
>higher-up... around the liver and lower rib area. The pain definately
>correlates with my cycle.
>
>The surgeon didn't have me do a bowel prep, and things I am reading now
>make me wonder if he was really a much of an endo expert as he said he
>was. Now I am having so much GI/bowel pain and pain in the perinum
>(sp?) area, but the GI doctors say that it is liekly just IBS and not
>related to the endo. However, I NEVER had ANY digestive/bowel proplems
>aside from the bloating and contripation I got around my periods
>previous to all of this endo and surgery.
>
>My Gyno has told me my only option is Lupron (I am wary that this is his
>only suggestion) and Vicodin. I greatly respect Christiane Northrup,
>and she recommends progesterone cream in her books. Has anyone had
>experience with this?
>
>It's taken me forever to get in, but I will have a 2nd opinion from
>another Gynocologist within the next few weeks, as sell as a visit with
>an Endocrinologist in November.
>
>1) I am looking for advice on helpful questions to ask these
>specialists.
>
>2) I also would greatly appreciate advice on Endo surgery specialist in
>the Midwest (Michigan, Ohio, or Chicago area). I am becoming convinced
>that my surgery was not what it should have been had I gone to a TRUE
>endo expert.
>
>3) I am just looking for someone to listen to my story and tell me i'm
>not crazy, or a freak! I don't know anyone else with endo, and my
>family, though supportive, is baffled and not sure how to talk about it.
>I just want to hear other women's stories so that I stop feeling so
>alone and helpless.
>
>Thank you all so much -- whomever reads this, and whomever can respond
>to me... I have always been an extrodinarily easy-going and optimistic
>person, but endo is definately challenging my ability to keep going some
>days.
>Thanks in advance for your responses....
>-MBC
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