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Re: Please help me - I can't take it anymore!!!!
From: ampyali (anonymous@obgyn.net)
Fri Jul 4 21:46:13 2008
One of the best ways to remember to take medication is to associate it
with some other activity you do during the course of the day. Let's say
if you brush you teeth twice a day and you have to take your blood
pressure med twice a day, they are a perfect match. Keep the medication
next to your tooth brush. After a few days, you won't even have to
think about it, it will just become part of brushing your teeth. Hope
this helps!
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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