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Re: endo and cysts and acupuncture
From: Alyson (anonymous@obgyn.net)
Mon Sep 12 14:27:39 2005
Well, there goes that idea. I see your point...this is kind of an
option of last resort. My limited understanding as far as adhesions and
fertility is a "blockage" issue. Blocking the
release/travel/fertilization of eggs. Have you sought the opinion of a
fertility specialist? Maybe just as a consult to find out what your
options are for trying to preserve your fertility, or whether or not
they think that is possible with everything else going on? Then maybe
depending on what answers they give you, you can use the alternative
treatments to manage your pain. I know this is a terribly confusing
decision. Having a hysterectomy is obviously so final, and its hard to
know what to do because you don't want to regret your decision later. I
hope someone can give you some answers to help.
Alyson
At Mon, 12 Sep 2005, Stephanie wrote:
>
>Yeah, I called her back after my last appointment. She had said she
>thought we could treat this, with herbs especially. The more I thought
>about it though, then more I got to thinking about the adhesions. She
>admitted they were more difficult but that we MAY be able to do
>something. She suggested a couple of massage thereapist to, that work
>with myfoscial and visceral work... I have yet to talk with them. Will
>call here soon. The massive amount of adhesions that appear to be
>present are my concern.I have been on Lupron and Femara for the last
>year (6mo each) with NO break in between, and started on Yasmin as soon
>as I stopped the Femara. In other words I have had little to no
>estrogen production in 13months or so... I think that even if there is
>some endo present, the really problem might be the adhesions. They seem
>to get worse without provocation.
>My biggest problem is the constant pain. The acupuncturist needs the
>"tincture of time" - I'm not sure how much longer I can hold out... I'm
>pretty tolerant, but I'm barely able to come to work. Since I am alone,
>this is obviously important!
>So, I don't know. I'm in a quandry. Don't really want the
>hysterectomy, etc (and the thought of HRT for a decade is not
>appealing), but I am at a loss to understand the impact of the adhesions
>on fertility and, at the immediate forefront, pain... I cannot keep
>going on like this...
>Stephanie
>PS, thanks for listening and offering your advice/comments/etc. I have
>not written to any other message boards. Been trying to 'do it alone' -
>pretty much at the end of my rope by now... :(
>
>At Mon, 12 Sep 2005, Alyson wrote:
>>
>>Have you talked to your acupuncturist about that? and are you taking
>>anything to maybe decrease inflamation, etc.? My doc is getting ready to
>>put me on a continuous dose of progesterone to help "hold off" the endo
>>and thus hopefully keeping adhesions at bay. Maybe between your western
>>doc and acupuncturist they can help slow things down a bit. My
>>acupuncturist was not just treating the pain, but also the endo and they
>>had several women seeing them for fertility issues. I would just ask
>>your acupuncturist where the adhesions fit into their treatment, if they
>>can treat them or not and how, and talk to them about preserving your
>>fertility. Then when the time comes that you want to have a baby you
>>can tackle whatever issues present themselves at that time since you may
>>have to have some proceedure to release your ovaries, etc. Just some
>>ideas.
>>If i can get back to my ladies soon I'll ask their opinion.
>>Alyson
>>
>>At Mon, 12 Sep 2005, Stephanie wrote:
>>>
>>>I know I have a history of deveolping adhesions and at my last
>>>ultrasound Dr M had to 'give up' on searching for my left ovary. I was
>>>in intense pain and she wasn't gonna find it it would seem. It seems
>>>that I have a huge mass of ovarries and uterus adhered together. My
>>>problem is that even if the acupunture and/or herbs worked to control
>>>pain and get rid of the cyst and eventually the endo, what could it do
>>>for the mess that my uterus and ovaries are in? I would still need
>>>'help' for conception, and, not to bring it down to just $ and cents,
>>>but I do not have access to that right now (of course there is no Mr
>>>wonderful in the picture right now either...). So, I am left with
>>>knowing that my insides are all messed up and adhesions will likely
>>>contuinue to form and deciding what avenue to follow...
>>>Stephanie
>>>At Mon, 12 Sep 2005, Alyson wrote:
>>>>
>>>>I understand the $$ issue. That's what has kept me away for the past
>>>>several months. My insurance offers a discount, but even that isn't
>>>>very helpful to the pocket book. I don't blame you on the hysterectomy
>>>>issue either. I get frustrated that so many of us are forced to think
>>>>about that option at such a young age. My acupuncturist that had endo
>>>>was able to keep hers at bay long enough to have children, but she did
>>>>end up having to have a hysterectomy at some point after that. I guess
>>>>maybe if nothing else the treatments may buy you more time before you
>>>>have to make such a final decision.
>>>>I actually had not ever heard of the "bowel prep". I'll have to look at
>>>>those postings.
>>>>Good luck,
>>>>Alyson
>>>>
>>>>At Mon, 12 Sep 2005, Stephanie wrote:
>>>>>
>>>>>Thanks for the reply Alyson, I have had 3 treatments now, which seems to
>>>>>have helped a bit, the pain seems to be done a partial notch. However,
>>>>>the $$ is adding up awfully fast with me not sure about the ability to
>>>>>avoid future surery. Of course the idea of a hysterectomy does not
>>>>>thrill me, but i have such a mass of adhesions I'm unsure of what, if
>>>>>any, good the acupuncture can do for that particular problem.
>>>>>I just read some replys about bowel preps and they scare the, well,
>>>>>crap, out of me (forgive the pun!) - i did not have to do a prep for
>>>>>either of my previous surgeries but was warned that I would likely have
>>>>>to do so this time. The idea of having surgery then continuing to have
>>>>>pain scares me too. Dr M says she has not had anyone in her practice
>>>>>have that happen, all her patients have been so very glad to have done
>>>>>it...
>>>>>Anyway, now I'm blabbing, pain'll do that I guess...
>>>>>Stephanie
>>>>>At Thu, 8 Sep 2005, Alyson wrote:
>>>>>>
>>>>>>Stephanie,
>>>>>>I saw an acupuncturist for about 8 months and am getting ready to start
>>>>>>back. One of the women who attended to me is an endo "survivor"
>>>>>>herself. They gave me a couple of different herbal concoctions meant to
>>>>>>help relieve "stasis" and "pain in the lower region". I found that it
>>>>>>helped with my periods in the sense that they were lighter, less
>>>>>>clotting, shorter, and a bit less painful. From my experience their
>>>>>>approach is more whole body and pain management. They likely will not
>>>>>>attempt to "cure" the adhesions, but manage the state of your body to
>>>>>>deal with the pain. I found that while I was seeing them my frequency
>>>>>>of pain decreased from almost daily to a couple of days a week. They
>>>>>>were seriously frustrated that I was still having any pain at all. I
>>>>>>also tried "cupping" while I was seeing them, which felt fabulous. I
>>>>>>think if nothing else having these women, one of whom had been through
>>>>>>it herself, attending to me and helping me relax for an hour a week did
>>>>>>wonders for what I was going through.
>>>>>>I haven't been seeing them for the past 4 months for financial reasons
>>>>>>and my pain has gone through the roof. I am going to have surgery again
>>>>>>at the end of the month and hope to start seeing them again as soon as
>>>>>>I've got the bucks. I'd be happy to share more info if you have any
>>>>>>more questions.
>>>>>>Alyson
>>>>>>
>>>>>>At Thu, 8 Sep 2005, Stephanie wrote:
>>>>>>>
>>>>>>>Well, I've read a few of your postings, but have been trying to do this
>>>>>>>on my own I guess. Seems that I may have met the end of the line so to
>>>>>>>speak regarding this disease and my ability to 'do it on my own' (I have
>>>>>>>had resources close to me, but they all know me too well).
>>>>>>>I was diagnosed with endo 2 years ago. I had a laparoscopy August 04
>>>>>>>and a laparotomy December 04. I was on Lupron in between. Then we
>>>>>>>tried Femara. The Lupron didn't do a darn thing, but the Femara was a
>>>>>>>wonder drug, for about 4 months, then 'it' came back (my pain is life
>>>>>>>altering, I can function, but barely and some things are just not going
>>>>>>>to happen). I have started trying acupuncture and the acupuncturist
>>>>>>>would really like me to start taking some herb mixes (it's 2 concoctions
>>>>>>>that are about 26 different herbs). My western md is conviced that we
>>>>>>>have tried absolutely everything and that there is only 1 more option,
>>>>>>>if you can call it that - a complete hysterectomy (she is sympathetic to
>>>>>>>my dilema). At 36 I am resistant to that option. The acupuncturist
>>>>>>>seems to think she can 'fix' me, but I have some serious adhesions going
>>>>>>>on. I can get my mind around how she can help the cyst that I now have,
>>>>>>>and the Endo, but I am not sure how she can fix serious adhesions.
>>>>>>>Anyone out there have any comments on the use of acupuncture and more
>>>>>>>especially the use of herbs?
>>>>>>>Thanks for any advice!
>>>>>>>Stephanie
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