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Re: Endomitriosis after complete hysterectomy with pain medicine
From: Angie (anonymous@obgyn.net)
Thu May 31 21:49:32 2007
I'm reading that flyer and I just wanted to say it is realy bringing a
few things to light. I've always felt bad about taking my percacet
because I've heard how addicting they can be. I know I only take them
when my pain gets really bad(which s daily), but I still don't like
feeling like i need them. That flyer made it very clear that though my
body my be physically dependant, that is normal and a person does not
become addicted to them until they abuse the drugs. I've always
justified in my head that I knew I was using them as directed, but to
see it typed out helps.
At Thu, 31 May 2007, D wrote:
>
>I wanted to thank both of you for sharing your stories - I read a lot of
>posts from women considering hysterectomies for endo, and it's important
>for them to be able to hear these firsthand accounts. Thank you!
>
>I wish I had more help to offer - because you both are having problems
>with pain I wanted to share this link to the American Pain Foundation
>website - I think it's a really good resource for anyone having problems
>with pain:
>http://www.painfoundation.org/
>
>Their publication, "Treatment Options: A Guide for People Living with
>Pain" explains how comprehensive pain management is supposed to work
>with patients, and maybe can help take away some of the fear of drug
>therapy, in particular. I recommend it to anyone who wants to talk with
>their doctor about pain, or anyone with an interest in treatments for
>pain including psychotherapy, physical therapy, alternative medicine,
>drugs, surgical options, etc. it's a pdf download:
>http://www.painfoundation.org/Publications/TreatmentOptions2006.pdf
>
>It's easy to miss that they have an "online community" page with links
>to chat rooms and discussion boards dealing with pain & (mostly) related
>topics:
>http://painaid.painfoundation.org/
>
>I don't know if either of you has consulted or had surgery with an endo
>specialist, or if you would consider another surgery, but there are a
>handful of doctors who do laparascopic excision of endo with good
>results, often for women who have had multiple prior surgeries and/or a
>hysterectomy. The endo docs yahoo group I've linked to at the bottom of
>the post is a good place to look for a specialist, and here are links to
>some of the more well-known endo specialists (the links are
>hysterectomy-related if I could find it):
>http://www.pelvicpain.com/askdoctor_QA.html#endorec (CA)
>http://www.endometriosissurgeon.com/WhatToAsk/Question9/default.aspx
>(Oregon)
>http://www.centerforendo.com/askcec.htm#hyter (Atlanta)
>http://www.reproductivecenter.com/ (Milwaukee)
>http://www.endoexcision.com/ (Maine)
>
>and another (much longer) list of endo specialists:
>http://www.geocities.com/endovictims/endodocs.html
>
>It's true that I still have hope for western medicine, but I'm also very
>picky about the doctors I'm willing to vest with that hope! One more
>thing - if you can't get to a specialist for a consult, another option
>is to send your medical records for a review. Some of the specialists
>charge, some may do them for free - there is a doctor working and
>training with one of the top specialists who is doing record reviews for
>free, for how much longer she'll do that I don't know, but here's her
>blogsite:
>http://endometriosissurgeon.blogspot.com/
>
>I hope some of this helps! And I really do mean it when I say thank you
>for sharing your stories - everytime you speak out you're probably
>helping to stop more than one woman from having an unnecessary
>hysterectomy!
>
>At Thu, 31 May 2007, Sherri wrote:
>>
>>At Thu, 31 May 2007, Sara wrote:
>>>
>>>I am 30 now, at 27, i had a full hysterectomy from severe endomitriosis.
>>>I haven completely given up on western medicine because i too have seen
>>>countless doctors and specialist, had 3 surgeries, MRI's, colonoscopys,
>>>ect. Fortunalty i have good insurance, but was still forced to file
>>>backreupcy a few years ago from bills stacking up. My medical chart is
>>>over 2 inches thick from the last 7 years.
>>>
>>>As a teenager i had many trips to the ER from ovarian cysts rupturing.
>>>As was forunate to have 2 children, one at age 18 and one at age 20.
>>>Into my twenties i got really sick and would cry all day from the
>>>intense pain. Not only pain but its a mental thing too, your body is
>>>wrong as it messes with your mind in many ways. You get weak, you cant
>>>help yourself and doctors just want to send you off for thier expensive
>>>testing they dont even bother to look twice at. I went through this for
>>>about 4 years before i found a OBGYN that wanted to do a diagnostic
>>>laproscopy. There is no cure for endomitriosis, it is a gene and the
>>>only way to 100% sure diagnose it is a diagnostic laproscopy. They went
>>>in through my belly button and put in a camera and found that my entire
>>>pelvic cavity was covered in endomitriosis. At that time they lazered
>>>off what they could and tied my tubes since i was done having kids. 3
>>>months later i was once again in severe pain. This time they did
>>>another laproscopy and found that in 3 months the endomitriosis had
>>>retuned twice as bad. They did not want to do a hysterectomy on a 27
>>>year old but when they got in there they found that one of my overies
>>>was completely covered in endomirtiosis and the other ovary was folded
>>>in half and stuck to the wall of the pelive cavity from scar tissue from
>>>endomitriosis. So they did a Laproscopy Assisted Vaginal Hysterectomy
>>>(LAVH). It laymens terms, they made 3 small incisions, one in my belly
>>>button again, and 2 on each of my sides. These incisions were for the
>>>camera, they sissors and thier grip. They cut the overies and pulled
>>>everything out vaginaly. Kinda like having a baby, but no baby. I call
>>>it getting my guts ripped out.
>>>
>>>So hear i am, almost 4 years later. I am on HRT (Hormone Replacement
>>>Therapy) to keep sane. I also see a pain management doctor once a month
>>>who gives me a shitload of pain pills and send me on my way.
>>>
>>>So why am i still in pain you ask? Because if you have a hysterectomy
>>>and they cannot save your overies and take them out, your young body
>>>will go into premature menopause not having estrogen and progestern,
>>>both released during the female cycle, and let me tell you, it sucks. No
>>>i dont have a period every month, but because of the hormones my body
>>>still cycles. Mentally a young women cannot handle menopause, its like
>>>this epic battle between your mental and physical state of mind and
>>>either way, i lose. At the begining of a womens cycle estrogen is
>>>released, estrogen feeds endomitriosis, at the end of the cycle
>>>progestern is released and progestern kills endomitriosis. So there is
>>>this intesely painfull war going on in your body all month long.
>>>
>>>I now also have scar tissue built up on my colon from the hysterectomy
>>>which cause additional pain and bowel problems, not fun. I wont go
>>>there.
>>>
>>>I was fortunate to have 2 beautiful daughters before my women parts were
>>>yanked from my body and discarded in some trach can. I almost felt for
>>>a while that my creative center as a women was taken from me. Now i
>>>just pretend its still there to stay sane, ha!
>>>
>>>No one understand, not women or man unless they have felt the pain of
>>>this aweful disease we share. I wish there was some way i could help
>>>you besides telling you my story, i had always wished someone told me
>>>about it before i agreed to have my female parts ripped out of my body,
>>>so that is why i am writing to you.
>>>
>>>I worry about the most now, my kids and me not being able to me and the
>>>person they deserve because of my pain and mental angwish over the pain
>>>medicine i have to take daily just to have a quality a life and to be
>>>able to function, get out of bed, have a job, clean my house and cook
>>>dinner. I hate that i now have to depend of narcotics and hormones to
>>>live a normal life and constantly worry about the damage it does to my
>>>body.The thing is, endomitriosis even after a complete hystercomy, like
>>>you pointed out can still grow anywhere in ther pelvic cavity, especilly
>>>increased by hormones. I feel like a 20 year old stuck in a 50 years
>>>olds body sometimes. The doctors around here treat me like a junkie,
>>>they know nothing about the disease, i only want to have a normal life
>>>and some quality of life without pain.
>>>
>>>Scared, in pain and dont know what to do now.
>>
>>Hi Sara,
>>
>>Wow! I think our stories are remarkable similiar! I too had a
>>hysterectomy at age 27, although mine ended up being a total abdominal
>>hyst. They started out going in through my bellybutton and were
>>supposed to do it vaginally, but once inside saw that my ovaries were
>>about 4 times the size they should've been and they could not get them
>>out through my natural opening, so they cut me from hip to hip. At
>>first, I refused to take hormones for the fear that the estrogen would
>>make the endo return, but ha ha on me b/c it returned anyway, so about a
>>year after my hyst., my doctor said "you're in so much painn anyway,
>>might as well take the hormones to fight off the menopausal symptoms and
>>have a better quality of life." SO, now I do take HRT for the hot
>>flashes, etc. I also have nerve damage in my abdomen due to the
>>surgeries, so I have pain from that, not to mention, I have IC (and all
>>the lovely bladder pain and pressure from that), plus a few other
>>problems associated w/endo and menopause.
>>
>>I also was very lucky to get pregnant at age 24, so I do have a precious
>>daughter that I would not trade for the world. But, that in and of
>>itself hosts a whole new lists of "problems". I agree exactly with you
>>about living in so much intense pain on a daily basis, but still being
>>responsible for not only yourself, but a child. There are soo many days
>>that it requires ALL that I have just to do the "normal" everyday things
>>that life with a husband and child takes. I cannot work outside the
>>home,(alot of days, I can't do much in the home!) My husband is very
>>patient and as understanding as a man can be about all of this. Intimacy
>>IS a problem, b/c it just hurts me so bad physically, that I would
>>rather not even bother. Who in the world wants to have sex when it puts
>>you in PAIN for 2 days afterward. I think the hyst. is responsible for
>>a LOT of the sexual problems. Do you know what I mean? I have been
>>accused (by strangers, friends and even family and of course DOCTORS) of
>>being crazy, sexually molested as a child, being a hypochondriac, being
>>NEGATIVE, you name it; when none of these things are true. NOW I
>>probably am negative about this endo and my health problems after
>>dealing with them for the last 13 years, but who wouldn't be. I am only
>>human.
>>
>>I also go to a pain specialist and have a dependence on narcotics b/c of
>>the pain. I have spent the last 4 years taking them, being made to feel
>>guilty about needing them, detoxing, then going right back to taking
>>them because I CAN"T function on a daily basis in the amount of pain I'm
>>in without something. FIVE, count 'em 5 different doctors have referred
>>me back to pain management, asking me why I put myself through trying to
>>live w/out something for the pain. Yeah, I'm sorry, but after 13 years,
>>Motrin doesn't cut it anymore. All the hot baths, heating pads,
>>meditation, etc. in the world does not really help the pain that much.
>>The pain meds I'm on don't really help too much either, but at least I
>>can get through the day and take care of my child. (with a ton of help
>>from my mom & husband) And, really, that's all I ask for anymore:to be
>>able to get through a day and then get through that night.
>>
>>To all of you enduring and especially staring this horrifying journey:
>>Be brave, be informed and Speak up for yourself. You are not crazy, You
>>have done nothing to cause this, nor should you deal with it by
>>yourself. It is absoulutely true that NO ONE that does not have this
>>disease can even hope to understand what you are going through.
>>Unfortunately, even some women with this disease will not understand
>>because there are so many different stages of it and everyone feels
>>their pain differently. People are gonna treat you like a drug addict
>>if you take pain meds because this world has yet to giv eup the stigma
>>created 70 years ago re: narcotics. If you did not take them before the
>>pain started, you'd probably stop taking them if the pain went away. I
>>know I would. The side effects aren't worth it, if it is not necessary.
>>My body doesn't deserve the chemicals being pumped into it, but what
>>else is one to do?!? No one has offered me any other option that has
>>helped me LIVE with this. And living is what I'm supposed to do, not
>>lying in bed, or sitting in a chair b/c the pain is unbearable. YOU
>>KNOW??
>>
>>I'm sorry this is so long, don't read it if you don't want to, I just
>>need somewhere and someone to talk to on the really bad days, and this
>>is one. I pray nightly for a change and I truly do not understand any
>>of this. I just want to have better days with my family...........good
>>luck to you all and I'm haooy to listen if any of you need to
>>vent..thanks....................Sherri
>
>--
>Find an endo specialist in the ERC's EndoDocs group:
>http://groups.yahoo.com/group/EndoDocs/
>
>Try an excellent endo support group:
>http://groups.yahoo.com/group/erc/
>
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