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Re: Please help me - I can't take it anymore!!!!
From: ampyali (anonymous@obgyn.net)
Fri Jul 4 22:00:31 2008
Summer--by any chance do you have a link for finding the information
about appealing to your insurance company? I tried to find it on the ERC
site, but was unable. Thank you.
At Fri, 4 Jul 2008, summer wrote:
>
>Hi, I am really sorry, your post is really hard to read, because it's
>not broken down into paragraphs. It's hard when you're reading someone
>else's story...
>
>The only thing I can suggest is appealing with your insurance about a
>specialist. There are only one or two handfuls of doctors in the US
>that know how to remove endo in all its locations.
>
>Women HAVE appealed and prevailed. One woman posted here I think about
>appealing her insurance to a doctor in NY, and they paid 100 %. Because
>there ARE so few excision experts in the country, you have to fight, and
>women do win.
>
>I believe the ERC board also has info about appealling to your insurance
>company.
>
>Best of luck to you, whatever you do. I don't know how someone can be
>bad at taking pills...what happens if you were diabetic? Just put things
>where you won't forget to take them.
>
>At Fri, 4 Jul 2008, April wrote:
>>
>>I am just bad at taking pills in general. I am supposed to take blood
>>pressure pills twice daily, and remember to take them once every couple
>>of days. With regard to hormones-we have tried nearly everything on the
>>market-except newly released in the last year. I do currently use the
>>nuva ring, which has helped with controling the bleeding and I guess in
>>some respect the pain. With regard to your earlier thread-I have been
>>battling this disease for 12 years now (diagnosed). My doc isn't an
>>excision specialist, but he is a good doctor-highly credentialed in
>>laproscopic surgeries. I am confident that at the time of the
>>surgery-he removed what could be, but in some cases certain areas can
>>not be messed with. Perhaps a doctor specializing in the colon and
>>bladder-could work with this doctor-to remove more-but I know that when
>>working with the bowel and colon-if you cut into the wrong spot-you can
>>go septic/infection throughout the body-and die. I would drive to
>>Milwaukee to see the excision specialist, but he is not in our network,
>>and therefore my insurance would not cover the proceedure nor any visits
>>regarding the proceedure. With 2 small children-I am trying to think
>>about all involved. I do not need to have any more children-as I am
>>already blessed in that area, but they need their mother 100%. I
>>realize in having the proceedure that I would have-in my preference
>>saving one ovary-the endo could come back if not all of the endo is not
>>removed-we would remove the other ovary around the time that I would go
>>through menopause-assuming there are no other issues between the
>>proceedures. With my uterus still intact, and my hormones still feeding
>>the endo-my condition is only worsening-my lower back is killing
>>me-shooting pains down my legs-almost paralizing. My cramps get so
>>bad-I could curl up in a ball for days at a time (obviously I can't
>>because of my children and work). After my second lap-I went through 6
>>months of Lupron injections to keep the endo from coming back-putting me
>>through 6 months of menopause. I gained 20 pounds-had constant
>>migrains, night sweats, hot flashes, and extreme moodiness-if you have
>>ever considered it-don't. After the lupron, I went on a low dose birth
>>control-again to keep the estrogen lowered, but to try and create a
>>normal cycle. After 6 months my husband and I decided to try and have a
>>baby-I went off the pill, and within 3 weeks we were pregnant (it took 3
>>years to conceive our first child, so we were very suprised to find that
>>news). Then after my son was born-I nursed-so I did not have a cycle
>>for more than a year after giving birth. Within 5 years I had 22
>>cycles. I started having excruciating pain, and could not function (the
>>pain was interpreted as endo pain-because the doctor didn't know at that
>>time that I had a kidney stone)-the pain that I was actually having-was
>>the stone trying to pass in the tube. It wasn't endo pain at all. He
>>went in and found the upper abdomin adheased to the ascending colon-as
>>well as all the other spots. At that time the doc and I were not
>>discussing the next course of action-because I was going through so
>>much-including the same pain I had felt before-after a CT that was
>>ordered they seen it was a kidney stone-so I had that surgically removed
>>3 weeks after my lap. Going in this last time we did discuss the endo-I
>>knew it was coming back-it can come back-since it is the lining of the
>>uterus and no one knows for sure how it anatomically happens, but if
>>there were a perfect senerio to get rid of it-it would have been
>>mine-basically stopping my period after surgery for 3 years. Most women
>>who have a hyst. do find relief-I think it is 30% that still have
>>difficulties after the surgery. I also have to look at the fact that I
>>have already had a number of surgeries, and each surgery leaves behind
>>scar tissue-which can also cause pain/discomfort. I would like to focus
>>on how I can help others though-maybe to help find a cure. I am not
>>able to donate funds-as I am not wealthy (otherwise the insurance
>>wouldn't be an issue), but like I said earlier-if my organs can be
>>donated for research into finding a cure-or figuring out how this
>>happens-I would be more than willing. As you can tell I am a talker-so
>>before I take up your whole evening I will let you go. Have a happy
>>4th-if possible.
>>
>>--
>>April
>>
>>At Thu, 3 Jul 2008, summer wrote:
>>>
>>>why do you say you're not good at taking hormones? I take bioidentical
>>>hormones, and never ever forget because they help me so much.
>>>
>>>At Thu, 3 Jul 2008, April wrote:
>>>>
>>>>I sympathize, I had my third surgery for endometriosis last year. I am
>>>>at stage 3. At that time I had also battled recurrent urinary
>>>>infections-come to find out I had a kidney stone lodged in my ureter for
>>>>18 months. My year didn't stop there. We lost 6 people within 6
>>>>months, one of which was my brother who was killed in a car accident-he
>>>>left his wife of 2 months, and unborn baby behind. That baby has since
>>>>been born, but we were notified that the baby is blind. A couple of
>>>>weeks ago our area was flooded badly-we were lucky-only several inches
>>>>ended up in the basement-it was just the mold clean up that has been
>>>>exhausting-it is in our first floor. I seen my doc in Feb. for my
>>>>exam, and he does want to do a hysterectomy-the last surgery he removed
>>>>an adhesion that was attaching my upper abdomen to my ascending colon,
>>>>as well as several areas on my ovaries and the back of my uterus. He
>>>>did excise them, however-the area that was on my colon he cut down to-I
>>>>am assuming that means he could not cut into-so that is probably still
>>>>there. He said he would recommend one of 2 things-either removal of one
>>>>ovary or removal of both ovaries with some hormone replacement-because I
>>>>am only 29. He also told me to lose weight, and to focus on myself-low
>>>>self esteem and excessive weight can make the pain worse. Okay-I am
>>>>over weight, but I do not live a seditary lifestyle-I have 2 small
>>>>children that I am busy keeping up to after work. I am sorry for
>>>>venting about my life as of late, and maybe I am a bit depressed, but I
>>>>know what pain is, and this is it. Your pain is very real. Some things
>>>>work for one person, and some things work for another-it is so
>>>>frustrating that this disease consumes us.
>>>>
>>>>I will probably have the hysterectomy with one ophrectomy (I think that
>>>>is how you pronounce it-removal of one ovary). I am not good at taking
>>>>hormones. I realize that there is a chance that the endo will come
>>>>back, but the doc did say we would plan to remove the other ovary at a
>>>>later time. I would like to find an organization that is actively doing
>>>>research that I can donate my uterus and ovary to-for research on this
>>>>disease-is that like really gross, I just feel like I need to do
>>>>something to help, and I don't know what else to do. My grandmothers
>>>>both had hysterectomies, my mother had a hysterectomy-when she was
>>>>24-because of cancer. I just don't think I should put mine off that
>>>>much longer. Okay now I am rambling. Done now-any advice is
>>>>appreciated.
>>>>
>>>>--
>>>>April
>>>>
>>>>At Fri, 27 Jun 2008, anonymous wrote:
>>>>>
>>>>>It seems like most of you on here are recommending the excision
>>>>>specialist, not the regular doctor. The doc who did the surgery last
>>>>>year was not an excision specialist, however, he was a RE and a very
>>>>>good surgeon [I got lucky]. He used a laser though, and I don't think
>>>>>he got anywhere near the amount of disease that he needed to. He seemed
>>>>>to think he wasn't equipped to help me - and suggested that I contact
>>>>>Dr. Kanayama or other excision doctors that specialize in endo. I
>>>>>found Dr. Orbuch - she takes my insurance - Thank God!. It is soooo
>>>>>expensive otherwise - I don't know how people can afford it. I am sure
>>>>>I will be stuck with bills too - but I am hopeful that most of them will
>>>>>be covered.
>>>>>
>>>>>Thanks so much for listening. I really just wanted to get the
>>>>>hysterectomy done and be finished with it, but it seems like you and
>>>>>others are saying that this is not the case, and the endo may persist. I
>>>>>would be terribly upset if that was true. I am going to go with Dr
>>>>>Orbuch - the only problem is I have to wait soooo long to get it done.
>>>>>Perhaps I can beg and plead that she do it sooner. I really can't take
>>>>>this much longer. Thanks again for listening.
>>>>>
>>>>>At Fri, 27 Jun 2008, anonymous@obgyn.net wrote:
>>>>>>
>>>>>>Sorry you are in so much pain. There shouldn't be any need for two
>>>>>>surgeries. The doctor who does your excision surgery is probably very
>>>>>>well qualified to do the hysterectomy at the same time if you really
>>>>>>need one. Hysterectomy won't relieve endo pain--especially when you
>>>>>>have the implants all over the place. I read somewhere that endo is the
>>>>>>only disease in the world in which it is considered acceptable to remove
>>>>>>an unaffected organ and leave the disease in place. Your endo didn't
>>>>>>come back, it was never completely removed in the first place. Your
>>>>>>pain sounds very typical for endo pain--if I were to describe my pain it
>>>>>>would sound very similar to yours. Hope you get relief soon--the endo
>>>>>>specialists have excellent records for success and try to leave organs
>>>>>>intact whenever they can. I'm scheduled for my excision in three weeks.
>>>>>>Good luck!
>>>>>>
>>>>>>At Fri, 27 Jun 2008, anonymous wrote:
>>>>>>>
>>>>>>>I had a lap last year in June - and the doc did a partial hysterectomy.
>>>>>>>Removed right tube and part of right ovary [he couldn't get it all
>>>>>>>because it was stuck to my bowel]. I had 6 chocolate cysts removed too.
>>>>>>>I also have had part of my left ovary removed due to a chocolate cyst
>>>>>>>that ruptured.
>>>>>>>
>>>>>>>Since my last surgery, I have been having awful pains in my lower
>>>>>>>back/tailbone area and my mid section - it feels like I am being cut in
>>>>>>>half. I also have terrible gas pain - like you wouldn't beleive. Is
>>>>>>>this normal? My doc seems to think I need a hysterectomy and I am sooooo
>>>>>>>ready for it. I have tried every hormone therapy in the book, and
>>>>>>>nothing seems to help. I was told I have stage IV endo - and it is
>>>>>>>literally everywhere :(
>>>>>>>
>>>>>>>It has gotten so bad, it hurts all the time and I cant bend over.
>>>>>>>
>>>>>>>Lately, I have lost my hope of ever feeling well again. I am setting up
>>>>>>>a hysterectomy as soon as I can, but I was scheduled for excision with
>>>>>>>Dr. Orbuch after I have a colonoscopy. Any advice? I don't think I can
>>>>>>>go through two more surgeries - thus my desire for a hysterectomy. What
>>>>>>>if the excision doesn't work? I am shot and worn out, and I haven't been
>>>>>>>living for quite some time now due to the endo. It is winning.
>>>>>>>
>>>>>>>Thanks for listening.
>>>>
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