search:





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

From: Dena (anonymous@obgyn.net)
Mon Feb 27 09:33:10 2006

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





recommended search...
Google
OBGYN.net forums endometriosis zone Web
use when must restrict search to only the endometriosis forum...
Enter search keywords:
Returns per screen: Require all keywords:
Return to [ endo@obgyn.net ] Technical Problems: webmaster@obgyn.net
Last Updated: Thu Oct 2 03:50:58 2008

home | medical professionals | women | industry | forums | international
e-mail | about us | advertising | our sponsors | contact us | disclaimer |

This information is provided for educational purposes only.
Please read the disclaimer. ©1996-2008, all rights reserved.
Do not reproduce without permission of MediSpecialty.com