ENDO Messages for February, 2006: Re: I am so scared to make a decision...kinda legnthy..To: Loretta

Re: I am so scared to make a decision...kinda legnthy..To: Loretta

From: Loretta (anonymous@obgyn.net)
Tue Feb 28 21:53:47 2006

Messages sorted by: [ date ][ thread ][ subject ][ author ]
Next message: Tara: "Re: How can this be?Another Cyst so soon after Lap,How do I approach my Gyno?"
Previous message: Tara: "Re: Scheduling my 3rd lap surgery tomorrow"
In reply to: Dena: "Re: I am so scared to make a decision...kinda legnthy..To: Loretta"
Next in thread: Tara: "Re: I am so scared to make a decision...kinda legnthy..i need some advice"

At Mon, 27 Feb 2006, Dena wrote: >
>Hi Loretta,
>
>I am so sorry that you have to go through all of this. My heart goes
>out to you. I wish I knew where you were so I could come over and give
>you a hug.
>
>Coming from a woman that has had an unsuccessful hysterectomy, I would
>actually recommend a hyst for you. At least you wouldn't have bleeding
>to deal with every month. If you do decide on the surgery, please do
>everything you can to get the best surgeon possible.
>
>Try not to let people get you down; it's the last thing you need righ
>now. That is extremely unprofessional of doctors and nurses to treat
>you poorly because you are on morphine. They should be reported for
>their actions. No one should treat you like a druggie when you are only
>trying to live life. Unfortunately it's hard for anyone who hasn't
>endured pain like we have to understand. It really makes me angry that
>your own family is so unsupportive. They're family. Have they not seen
>your struggles? Do they not know about your surgeries? It's not like
>you've chosen this path. And remember, you're not addicted, you are
>dependant on the pain medicine. Others need to be reminded of that if
>they have a problem with you taking morphine.
>
>Please know that you are not alone. I can't tell you how much your
>story sounds like my own life. I too had my daughter when I was
>fifteen. She was a blessing to me and I did everything I could to give
>her a great life. She's now almost out of high school, an honor roll
>student, and registered for nursing school in the fall. Unfortunately I
>have passed endo along to her also. She was diagnosed at fifteen (now
>seventeen).
>
>When my current husband and I tried to conceive years ago, we couldn't.
>Finally after eight years of being together, we had a positive result.
>That soon turned to negative when I was rushed to the hospital by
>ambulance because the pregnancy was tubal. That was the beginning of my
>endo woes in '98.
>
>Six laparotomies later (and a son thanks to IVF) I am having the same
>issues as you explained. My insides are all adhered together. This is
>stuck to that, I have scar tissue everywhere... The hysterectomy didn't
>make my pain any better, but it did guarantee that I won't be bleeding
>again.
>
>I too am on morphine to survive every day. It doesn't make me high
>either. Nor does the vicodin I have to take on top of it when the
>morphine isn't enough. I do the best that I can and that's all that you
>can do too. I've tried almost everything else and have come to terms
>with the fact that I will probably live the rest of my life on pain
>medicine. I still can't do everything I want to do, in fact, I think
>last night was the last night of working outside of my home. I left
>work in so much pain that I sat in my car for ten minutes just bawling
>my eyes out before I could drive away. I was so sad because I realized
>again that I have to give into my disease. I hate to let it win, but I
>have no choice. What else can we do when we're hurting so bad and so
>tired of the constant struggle? Luckily I have a couple at home jobs to
>bring in some money to contribute to the household. If it wasn't for
>that, I don't know what I'd do.
>
>One thing that we don't have in common is the bowel and intestinal
>issues. I occassionally have pain and constipation, but I can't imagine
>having to turn everything to liquid in order to get it out. I really
>feel for you.
>I'm wondering if you could seek out specialists and if you do go in for
>surgery, maybe they could work together in their area of expertise. My
>endo doctor called in a cancer surgeon from Dana Farber when I had my
>last surgery. I know he did a good job because the area he worked on
>(my left ovary area) is the only area without pain right now.
>
>I know I haven't given you any really useful information. I just wanted
>to share our similarities and give you my support. If you ever want to
>email me directly, please do. I'll be glad to help you in any way I can
>or just be an ear for listening (or eyes for reading in our case :)
>
>At Mon, 27 Feb 2006, Loretta wrote:
>>
>>I have had endo since 13,hospitalized many times then diagnoed @18.
>>Had a child at 15 that I had to let my parents raise as my boyfriend was
>>very abusive and i had no means to support him. At 18 I married and we
>>tryed to start a family, it was the most important thing to both of
>>us.My periods and pain had always been out of this world and i was
>>hospitalized with a ovarian cyst that was rupturing.They had found while
>>operating that I was covered in endo and was scarred badly , they said I
>>must have had alot of cysts before as my ovaries were a mess.I was in a
>>large teaching hosp in Vancouver Canada and the specialists said I was
>>so scarred that i likely wouldnt be able to concieve again. They did my
>>first laparotomy and tuboplasty to try to clear out my tubes. I tried
>>again for 2 years and my husband drifted to other women as he could not
>>handle all my pain,hospitalizations,surgery,then still, no kids.We
>>divorced. I married again and this one also wanted kids and we saw
>>another infertility spec who said he would repeat the tubo and put me on
>>fertility drugs. Did it,..had a tubal..i was DEVISTATED. I kept
>>getting large cysts and the pain got disableing. the short of it is, we
>>tried everything , nothing. That marriage also didnt survive. I am 40
>>now. a dozen surgerys later,countless drugs...I now have stage 4
>>endo,and frozen abdomin from all the scar tissue. One and a peice of
>>one ovary left (it still gets cysts on it!!)and had stage 1 cervical
>>cancer.
>>Almost every organ in my ab is stuck together in a tight ball, many
>>surgerys to free them but they gave up and said they cant tell one thing
>>from the other and if they tried again they may cut something vital and
>>it may hurt my bladder or I may be on a bowel bag. My bowel and
>>intestine is so scared that nothing moves at all, I can only eat 1 meal
>>a day and every night i have to drink a purgative that u take before
>>surg that turns it to "water" so it cleans me out cause passing anything
>>solid is excurciating. I bleed all the time but they cant even take out
>>my uterus cause of the scar tiss.when i get cysts there is nothing i can
>>so till it works itself out. By rupturing or whatever it does. Hormons
>>to stop my period dont work and make me sick. I am on injections
>>everyday of morphine and get hassled ALL the time from nurses and some
>>Dr's at hosptals i am admitted to.I have lost all my familys support
>>since taking the medication for pain. My husband of 10 years is the
>>only support i have and he wants me to take it cause he says he see's
>>thats the only way I have a life and can function.But they make me feel
>>like a loser for taking it. It lost the effect of making me a little
>>"high" LONG ago and my pain specialist says its the best thing out
>>there. My Family Dr supports our choice.I was in bed for a year from
>>pain and depresson before they used it.
>>But i feel so bad when they hassle me. The specialists told me if I
>>really insist they will try more surgery but I have to accept the
>>results if it goes bad, and there is a HIGH chance it could.If my bowel
>>is perferated I could die.If i keep on it i may last it out to menopause
>>and maybe some pain will let up. They say i may get a bowel blockage in
>>the meantime and i may have to have the surgery by emerg anyway. I dont
>>know if i should wait and see or go get it over and accept what may
>>come.I need someone's view that wont hassle me or my choices so far. I
>>do everything else to help myself in EVERY other way! I MEAN I DO IT
>>ALL! Diet,excersize(what i can)Meditation prayer,....
>
>--
>Dena
>

-- Oh u guys, I am SO thankful to hear from so many of u and for the first time I do not feel judged or afraid to really talk about the struggles I/we face. In ALL the years I have been dealing with this I have recieved more kindness, understanding and non-judgemental responses than I have the enire struggle. Thank-you, finding this forum is turning out to be a gift sent by god.,

Those who respond are so careing. Dena,All I can say is...I needed that. You understand just what I needed to be understood.Thank-you for the connection. I needed to hear that I was not the only one who chooses to accept the help that is there, even if it is by means others cant understand.And I needed to hear someone else confirm that after taking the drugs for awhile it ceases to have the same effects such as the "high" that u get in the beginning. When that is gone it only provides pain releif, and as u stated,even that at times isnt enough and other things may need to be used.I just dont get why others seem to feel that if u use what is available to help u live as "functional" a life as u can that it is wrong.I feel that if it is there and u NEED the relief WHY SUFFER? I only know I was so very close to commiting suicide because I had NO life left and COULDNT handle ONE more day of AGONY.At least now I can function and am with it enough to live and make rational decisions. I now again have a life. And my husband and son and wonderful step-kids have their mother back! They are more important to me than otheres opinions.Just hurts.If they only knew me/my life, I am a good,loving,helpful person I give everything to my family/community, why treat me like that? To all who suggested hysterectomy,I am with the cancer centre in Calgary Alberta. I have 3 of the best surgens in western canada at my disposal, really I couldnt ask for any better.I have access to all the latest techniques and treatments. They have opened me twice in the last 2 years and have directly closed me back up. They say they cant tell one thing from the next and need my o.k to go any further because of the awesome risk that is present if they go any further, I am just TO terribly adheased, Hysto is out of the question as a safe option. That is why we are mostly focusing on the adhesions to my bowel and intestine, menopause will eventualy come and take care of that but it wont fix the B & I prob, but the risks r so great.I am also lucky enough to have the best pain specialist from that center. She is the one who has put me on the Morphine.She said it is the cleanest of all pain meds and has the least side effects.Motility is one but she prescribed the purgitive (laxitive)to help that as well.Demerol I can take for a short period but I get sick on it and I hate the way it makes me feel.She said over extended use it can go toxic in your system.I tried fentynal patches (100mg) but had an allergic reaction immediatly to the adhesive!Here we go again, this letter is MUCH TO LONG! Thanks for your continued support while i go thru this!

Next message: Tara: "Re: How can this be?Another Cyst so soon after Lap,How do I approach my Gyno?"
Previous message: Tara: "Re: Scheduling my 3rd lap surgery tomorrow"
In reply to: Dena: "Re: I am so scared to make a decision...kinda legnthy..To: Loretta"
Next in thread: Tara: "Re: I am so scared to make a decision...kinda legnthy..i need some advice"

Women's Insurance Checklist from Auto Insurance Quote

use when must restrict search to only the endometriosis forum...
Enter search keywords:
	Returns per screen: Require all keywords: