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Re: endo and cysts and acupuncture
From: Alyson (anonymous@obgyn.net)
Mon Sep 12 15:31:32 2005
Well you're definately on top of things! Sorry I can't offer any advice
beyond what you've already sought. I wish you luck with the massage and
acupuncture. Let me know how that works out!
Alyson
At Mon, 12 Sep 2005, Stephanie wrote:
>
>hmmm, my current Dr is the specialist. She deals with all sorts of
>fertility issues. She has suggested oocyte collection and freezing, but
>it is costly and no guarantees...
>Thanks for good wishes! I do appreciate that muchly!
>Stephanie
>PS I just talked with the visceral massage therapist - he might be able
>to offer some help, but it is also a timcture of time thing... we'll
>see
>At Mon, 12 Sep 2005, Alyson wrote:
>>
>>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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