Re: What's next... (venting)
From: Anonymo (anonymous@obgyn.net)
Thu Jan 16 08:30:29 2003
Hi Katia,
I completely understand how you feel. But I wanted to point out one
thing
that might influence your decision about hysterectomy. Firstly,
although
hyst may turn out to be the right decision for some women, there are
other
options -- such as laparoscopic excision by an endo expert, natural
progesterone
cream (which has worked for a lot of women), natural treatments (see the
thousands of women doing this on the EndoNatural board on Yahoo), and a
new
pain treatment out called Trental. I have seen an improvement in my
symptoms
of fatigue and cramps after just a few weeks of starting to take
Vitamin B Complex.
But I really wanted to emphasize that I think we are going to see a
revolution in endo treatment in the next few years alone. They have
just come
out with a new test for it that can be done via blood test and
endometrial
biopsy which does not require surgery and is much more accurate than
lap.
They are doing a gene study to discover the precise gene that
predisposes
a person to endo and results are expected later this year!!
And every day I read about new possible treatments -- NPC, Trental,
TENS,
Menastil, sclerotherapy for endometriomas, mifepristone, endometrial
ablation,
Thermacare patches, Vipon vibrating tampons (this is no joke!!), massage
therapy, and even medicinal marijuana are just a few examples that I
have
heard of in the past few months alone.
I think it is very likely that you will see a large number of new viable
treatment options in the coming years and might regret having a hyst
unnecessarily. Even if you just give it another year to explore
different
treatment options, I have much hope that you will find your options
expand
significantly in that time alone.
I totally respect your decision and wish you the best whatever
it is, but this is just something to think about and weight in your
decision.
I have watched a lot of progress since I was diagnosed and I'm glad that
I
didn't choose to do anything radical or permanent.
At Wed, 15 Jan 2003, Katia wrote:
>
>I want to thank you all for writing back to me... it still amazes me
>how much support you can get from a message board. I've been reading a
>lot about hysterectomies and the different procedures they can do to
>keep one or both ovaries and what not. I was diagnosed with stage 1
>(still think its wierd how so little disease can cause so much pain)...
>which makes me think that maybe the reoccurance of endo post-hyst is
>less likely. Please correct me if i'm wrong. I just dont want to feel
>this way for the next, like, twenty years, ya know? If someone could
>say, hey, stick it out one more two more years and then you'll find
>something that will finally make you feel better - then fine... but as
>we all know, there isn't anyone who can tell us that. I dont feel like
>waiting, my life is passing me by and i'm 'much to young to feel this
>damn old.' we all are...
>
>>Katia,
>>I feel the same way! I am 20, was just diagnoised officially this past
>>July...However, I had the symptoms for years before. I started
>>treatment the previous May though cause it was certain that I had
>>endo....my doc was certainly right! I was covered in it. Make sure you
>>get a second, third, or even a fourth opinion before having a hyst. You
>>might be suprized what a new head could do. I haven't gotten a second
>>opinion yet for my endo, but I have had too for my breathing
>>problems....and it was a very smart thing for me to do! Email me
>>anytime, good luck!
>>
>>At Mon, 13 Jan 2003, anonymous@obgyn.net wrote:
>>>
>>>I'm in the same boat as you are honey! It sounds like you've worn out
>>>all of your options as to "what is next!" My Gyn and I agreed that we
>>>would wear out every option I had before doing a hysterectomy. Well,
>>>I'm on my 2nd round of Lupron and it's actually working this time. I've
>>>had 3 Laps, continuous birth control and now the 2nd round of Lupron and
>>>I feel really good. Talk to your doctor and see what he/she thinks. I
>>>personally don't think any of us are ever too young for a hyst if it
>>>improves our quality of life. And I'm sure you know that a hyst isn't
>>>always a cure but I know it has helped a lot of women. If your doctor
>>>won't do the hyst find a different one. I know there are doctors out
>>>there that will do it. BUT MAKE SURE THIS IS WHAT YOU REALLY WANT! And
>>>like my mother said, if your mind starts playing tricks on you, talk to
>>>someone, A PROFESSIONAL! Good luck to you! I wish you the best.
>>>
>>>At Sun, 12 Jan 2003, Katia wrote:
>>>>
>>>>I'm 21 and have been dealing with endo for about a year and a half....
>>>>so for that amount of time, i have had no life - i missed too much of
>>>>school so i had to withdraw, i can't get a job for the same reason. I've
>>>>also been figure skating for 12 years and i can't do that because
>>>>physical activity makes it hurt more. I've Lupron, surgery, bc pills,
>>>>and i'm now on provera. Danazol scares me because of the 'manly' side
>>>>effects. None of these treatments seem to offer me much hope,
>>>>considering its all temporary relief if that. So far there hasn't been
>>>>any relief at all. I'm seriously considering discussing a hysterectomy
>>>>with my doctor. I have no problem with the whole fertility issue, if i
>>>>chose to have kids, i can adopt. I'm afraid my doctor wont understand
>>>>and will just look at me like - you're 21, come back for one when you're
>>>>30. My quality of life is almost non-existant, i don't want to deal
>>>>with this until i hit menopause. Other than the treatments i listed
>>>>before, are there even any more? Am i crazy to even be thinking about
>>>>this? I dont want to waste years hurting so much that i can't have a
>>>>normal life.
>>>>thanks for letting me vent
>>>>katia
>>
>>--
>>Kayla
>>**Just someone who cares, preparing for the medical field**
>>
>--
>Katia
>
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