Re: Endomitriosis after complete hysterectomy with pain medicine
From: D (anonymous@obgyn.net)
Thu May 31 20:43:30 2007
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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