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Old 03-10-2010, 09:21 PM   #1
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Dialysis and Endometriosis

I have just been diagnosed with severe endometriosis, while living with CKD. I have two treatment plans suggested for the endo..a hysterectomy, or a hormone induced menopause.

I now realize that the issue of future dialysis could also depend on the treatment of my endo. I have three months to get my doctors together before this $2,000.00 shot I just had, wears off, and the endo comes back.

if you could not do peri-dialysis with endo, could I with a hysterectomy?

 
Old 03-11-2010, 03:45 AM   #2
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Re: Dialysis and Endometriosis

My gynecologist suggested a hysterectomy when the pain was very severe. I had the shots too but I didn't want to continue them. I had all this after I had my transplant. While my neph team never really got on board with the endometriosis thing, my gyno was fairly adamant that the pain I experienced with pd was from it. Also the clogging of the catheter. At this point in my life if I had to do it all again and could try pd I would try the hysterectomy and attempt pd. Of course, there is no guarantee that this would stop the problem, but it would be a very good shot.
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Old 03-11-2010, 08:07 AM   #3
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Re: Dialysis and Endometriosis

Oh Cora, the plot thickens...I am simply amazed at all you have been through.

So, to get this straight...get the hysterectomy. I am really leaning towards that, because something about the shot (maybe it's the $2,000.00) makes me uneasy. My kidneys are still stable, so I have time there. Having the endo diagnosis pop up has thrown me for a little loop...a whole new thing to learn about, and deal with.

But, thanks to you I feel I have some good insight that I trust. You really are a godsend Cora. May I ask, did you have medical background, or is all your knowledge straight from living with all this?

How do the kidney do with the effects of the hormone shot, and the mini-pill that I am taking daily? I know the shot has made me a little crazy with side effects, but is there additional damage to the kidneys?

thank you so much for sharing your wisdom...it is precious.

 
Old 03-11-2010, 08:47 AM   #4
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Re: Dialysis and Endometriosis

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Originally Posted by writeleft View Post
Oh Cora, the plot thickens...I am simply amazed at all you have been through.

So, to get this straight...get the hysterectomy. I am really leaning towards that, because something about the shot (maybe it's the $2,000.00) makes me uneasy. My kidneys are still stable, so I have time there. Having the endo diagnosis pop up has thrown me for a little loop...a whole new thing to learn about, and deal with.

But, thanks to you I feel I have some good insight that I trust. You really are a godsend Cora. May I ask, did you have medical background, or is all your knowledge straight from living with all this?

How do the kidney do with the effects of the hormone shot, and the mini-pill that I am taking daily? I know the shot has made me a little crazy with side effects, but is there additional damage to the kidneys?

thank you so much for sharing your wisdom...it is precious.
Like I said, since I was already in tremendous pain with my periods (vomiting for 3 days) I had the same amount of pain when I put the pd fluid in. So I went on hemo. It wasn't until my transplant and my periods started again (kidney failure often causes menstruation to stop in women) that I went on the hormone shots for a while. I didn't like them and the pain eventually eased as my cycle became slower. I didn't find that the shots or the pill affected my new kidney at all.

As for my knowledge base, I have a 4 year degree in biology and have put that to use in researching all my various and sundry illnesses. It sure helps a lot that I can read medical articles and understand them. I did buy a medical dictionary too just to help out.

I think that if I were to go on dialysis again I might try the hysterectomy in order to do pd. I'm not sure how well that would work though with all my abdominal surgeries. The time may have passed for me. Are you in a lot of pain due to the endo?

Hope this helps a bit.
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Old 03-11-2010, 09:04 AM   #5
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Re: Dialysis and Endometriosis

I spent a week in the hospital this month on IV morphine every three hours, and I am still taking narcotic pain medication, even two weeks after the shot...so yes, the endo really hurts badly. As much as I hate the idea of a big invasive surgery, I am seriously considering it. Better to do it now, than later. I honestly hadn't considered the affect on future pd, but now I understand how they could be connected. I really want to be able to do pd, so this makes my decision much easier. Of course, I know nothing is guaranteed.

Thank you for sharing your background...the fact that you can read and understand medical journals is impressive! On behalf of all the folks your knowledge helps, thank you Cora!

One more question, if you don't mind...What is your current lifestyle? What are your restrictions, and what are your highlights?

Last edited by writeleft; 03-11-2010 at 09:04 AM.

 
Old 03-11-2010, 12:34 PM   #6
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Re: Dialysis and Endometriosis

Quote:
Originally Posted by writeleft View Post

One more question, if you don't mind...What is your current lifestyle? What are your restrictions, and what are your highlights?
Unfortunately, I am no longer able to work. This is due to other medical complications not related to the kidney failure. I keep busy with stuff at home and some volunteer work. Of course, I also spend time online. I am able to do so much more now that I was able to do before my kidney transplant. The most recent highlight for me was getting married (for the first time) this past June. My husband is understanding of my health issues and even stuck with me through a 7 month hospital stay (what a guy!). One of the biggest blessings of a kidney tx is the fact that you can eat normally again, Beware of weight gain after transplant. Typically you are so restricted (and prednisone if you are on it doesn't hurt either) that you eat everything in sight afterwards. It's a joy though!
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Old 03-11-2010, 01:14 PM   #7
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Re: Dialysis and Endometriosis

Congratulations on your marriage! That is inspirational. I appreciate you putting this picture of yourself out for me to see...thank you so much

There is a part of living with medical difficulties that can easily throw folks into a panic, and throw the baby out with the bathwater...but it really is something that offers so much more, if we are able to get past the fear and the "what if" thinking. My appreciation of life has never been greater, and as weird as this might sound, I have never been happier! I can easily disregard those things, and people that have a negative impact on my life...I know what is important everyday, and my needs are so simple. So much of the day to day mumbo jumbo is so easily discarded. The little moments are so meaningful.

I feel so relieved to have made my decision about the hysterectomy, and I have an appointment Tuesday morning to get the ball rolling. Endless thanks!

 
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