Transplant (Was LIVE Endometriosis Chat)
Susan
There is not much I can add to what Kirk wrote, except to say
that a good friend of mine (male) has had a pancreas/kidney
transplant, and I am aware of the delicate issues involved.
It sometimes seems that fixing one problem just causes another
one to flare up!
I personally think that a thorough surgery with an excellent
surgeon is the best treatment available for endometriosis. Of
course there would be additional issues of concern for your wife,
since avoiding damage to the transplants would be of utmost
importance.
Let us know how things are going. Best wishes!
--Susan Strandskov
>In article <35b6d605...@enews.newsguy.com>, Alan says...
>>
>>My wife Lisa is going to be tested for Endometriosis. What are her
>>options? She's a Pancreas/Kidney Transplant Recipient, 3 1/2 years ago
>>and we understand the drug therapy could be the cause or make things
>>worse, any other Transplant Recipients on this list?
In article <35b8963a...@enews.newsguy.com>, Kirk says...
>
>The cause of endometriosis is actually unknown. There are several
>theories, with genetic predisposition being the one I think fits the
>observations best, but no clear cause that everyone can agree on.
>
>There does seem to be a higher occurrence of immune system dysfunction
>among endometriosis sufferers, so the idea of a transplant patient on
>immunosuppressive drugs getting worse seems to fit in.
>
>The traditional treatments for endometriosis are hysterectomy with
>removal of the ovaries, estrogen suppression, and surgery.
>
>Hysterectomy, with or without removal of the ovaries, fails to provide
>signifigant benefit about as often as it helps. The potential benefits
>do not seem to justify the drastic nature of the procedure, although
>many doctors still insist that it is the only choice and become quite
>angry if you ask questions.
>
>Estrogen suppression does provide some temporary relief from the
>symptoms, but the results vary widely among different women, and it
>very rarely has any signifigant long term effect. For some women,
>it's great while they take it, but the endometriosis comes right back
>as if nothing ever happened, within weeks of stoping the medication.
>For many other women, the side effects are unbearable, and may last
>long after the medication is stopped. Common drugs used in this
>therapy are ordinary birth control pills, Danocrine, Synarel, Lupron.
>In view of the controversial nature of the estrogen suppressing drugs,
>there might be serious reason for concern about side effects and drug
>interactions in a person taking immunosuppressives.
>
>Surgical excision of the endometriosis lesions also varies considerably
>in its success, but the effect depends more on the skill and knowlege
>of the surgeon than it does on the severity of the endometriosis. The
>handful of surgeons who do endometriosis surgery exclusively seem to
>get consistently positive and long lasting results, but the doctors
>who only do it ocasionaly seem to get universally poor results. For
>this option, a specialist is a must. However, in my opinion, it is the
>best option, but only if done by one of the recognized specialists.
>
>You mentioned that your wife is going to be tested for endometriosis.
>Endometriosis is difficult to detect, and can not be positively
>confirmed except by taking tissue samples during surgery and having
>them analyzed in a laboratory. That is not something to be done lightly,
>just as a test. Some doctors attempt to diagnose endometriosis by
>sonogram, but this is a very unlikely way to get confirmation, unless
>the endometriosis lesions are unusually large.
>
>Please keep us updated on her progress, so that others may benefit from
>her experience.
>
>Kirk (endo husband)
>
>
Roopali
I myself have endo and I am group of couple other list server. I got a
lot info from there.
I will just paste email from Julie. I hope you get some start from
here.
**************
Roopali,
There is so much you can do. Acupuncture worked for me, but I had to
give it a good solid three months going twice a week to see results.
Some people don't have the patience or money for it, but I can tell you
that I'd give up any luxury item I spend money on to afford the
treatments, because they work like magic for me. I've heard that they
don't work for everyone, but I went from off the charts pain (writhing,
screaming, etc.) to zero pain with the treatments and herbs. You can
get Vitex at Whole Foods for $7.99 a bottle. It lasts me a month and a
half. Here are some other things that I've done to help:
- cut out dairy
- cut out soy (this took me a while to do, but I noticed improvement
when I did)
- cut out fried foods
- cut out caffeine
- limit alcohol
- take a prenatal vitamin and a B Multiple Vitamin
- take Omega-6 oils every day
- take extra Vitamin E
- get plenty of calcium
- take spirulina
- take bee pollen
- exercise at least three times a week if possible
- drink LOTS of water
- do yoga or relaxation exercises. Anything to keep your stress level
down.
Another MAJOR thing that helped me was cutting out all painkillers
during my period. It took me a few months to do this because you start
to rely on them, but once I did, I noticed a dramatic improvement in my
pain. Painkillers are processed in the liver, and when your liver is
clogged with painkillers, it can't process the extra estrogen. The
estrogen builds up and you get more pain than you would have had
without them! I finally figured this out because I got to the point
where I would take a Tylenol, the pain would subside for a half hour,
and then kick in worse than before and I'd take another and another.
This happened with Advil, Aleve, Vioxx, and the other prescription
painkillers I was given by my OB/Gyn (big list). So, I bravely tested
my theory and I was right. My pain was diminished without painkillers,
and every month, it was a little better as my liver became stronger.
This explains why the pain was worse and worse over the years. I can't
believe how important this step was to my healing.
OK, hope that helps...
Julie