Re: Endo/Sacrum pain & swelling/depo lupron
From: Marci (anonymous@obgyn.net)
Thu Nov 29 19:06:22 2007
At Wed, 28 Nov 2007, Debbie wrote:
>Hello again,
I am going to get a copy of my charts,notes and photos. Where is Dr.
Redwine located? CT is beautiful! I lived in N.Y.C. for 5 years while
attending college and traveled often to CT. Love the beaches, love the
scenery! Anyways, I have a few more questions after looking more closely
at your website. Your story is A LOT like mine, except I figured out
what the heck was going on a lot earlier ( I was officialy diagnosed at
27). I have had strange bouts of pain(emergency room) since I was 17
and have been told everything from kidney stones (that they never found)
to pelvic inflamatory disease. Gimme a break! Do you see a pain
management Dr? If so have they helped you at all? I recently asked my
OBGYN for a referral and am simply waiting for the appt. I am currently
taking Ibropfen 800mg, tramadol and percocet for the pain, yet I often
feel like a junkie when asking for more. There are days when I can
hardly get out of bed and then days when I cant. My pain is real as I'm
sure you understand.
Also, are you a member of the Endometriosis Association? I am so angered
about how little is researched when it comes to Womens Health. I want
to help the cause and want to try to change things, even if it is a baby
step at a time. I am too young to feel this way as we all are. Just
curious. Again, your website has been sooooo helpful and your insight
is kind. Thank you again.
>Hi Marcie, and thanks for replying. I did notice swelling when I had
>that bruise but not otherwise and I still have a lot of sacral pain. I
>will keep my eye out for another bruise. It was so weird.
>
>I don't think it's a bad idea for you to have another lap, but it should
>be with the right doctor. There is no point going to a regular OBGYN
>and asking them to perform Excision because they just don't know how.
>You need to find a REAL Endo specialist. An Endocrinologist is ONLY an
>Endocrinologist, and not and Endo specialist, even if he wants to call
>himself one. There are only a handful in the US and you may have to be
>prepared to travel to CA or OR. I travelled from CT to ME for mine. My
>previous surgery was performed by a very renowned Endocrinologist who
>left me in worse pain, but then again, so did my Endo specialist so
>there are no guarantees. You definitely do not want to do Lupron if you
>had a bad reaction to the pill. If you react badly to Lupron you will
>be very sick for a long time. Not good. Excision is only more
>complicated in that it requires expert knowledge to perform it, but
>depends on the extent of your disease. Get copies of your chart, notes
>and photos, if any, and send to Dr Redwine for an evaluation.
>
>Glad to help
>
>--
>Debbie
>http://www.angryuterus.com
>
>At Wed, 28 Nov 2007, Marci wrote:
>>
>>At Wed, 28 Nov 2007, Debbie wrote:
>>>Hi Debbie,
>>
>>Thanyou so much for responding. I was wondering, when you had the dark
>>bruise on your sacrum, was their also swelling? My sacrum is always
>>swollen and always causing me pain. At times, especially right before
>>and during my period it causes me severe pain, is extremely swollen and
>>black & blue. Are you still experiencing sacral pain? I
>>I looked on your website (love the name) and truly found a lot of
>>helpful information. I have already had one laprascopy and am now
>>thinking that I should not have another. I also dont think depo lupron
>>is going to be a wise choice for me. I hated the pill and at least you
>>can stop taking that, with the shot it seems rather permanent. I was
>>going to see an Endocriniologist(sp?), and the only expert on
>>Endometriosis in New Mexico , do you think that is a bad idea? My first
>>laproscopy was performed by a resident (the one below attending?) obgyn
>>and now I am regretting that. I just started seeing a regular obgyn and
>>she is the one who said depo-lupron before another laprascopy.
>>I am going to tell her no and ask about having the endo excised. Tell
>>me if I'm wrong, when it is excised the surgery is a lot more
>>complicated, but the results are better because you have a higher chance
>>of removing all the endo? Again, thanks for your help. Have a good
>>night!
>>>Hi Marci,
>>>
>>>I had to respond to you because last month my partner noticed a huge
>>>black bruise on my sacrum and I just didn't understand where it came
>>>from as I hadn't hit myself or fallen. I've been having a ton of sacral
>>>pain too, and had Endo excised from both utero-sacral ligaments also.
>>>It's a weird coincidence.
>>>
>>>If your doctor thinks you have deep Endo on your sacrum then you need it
>>>excised. Lupron does NOT cure Endo. It may mask symptoms for a while,
>>>while giving you a ton of other, more unpleasant, symptoms. It's like
>>>exploding a nuclear bomb to kill a colony of ants. Nasty stuff. Do not
>>>let any old doctor operate on you....go to an Endo specialist. This can
>>>make a BIG difference in your treatment and outcome. Please go to my
>>>website and have a look around as you might find the infomration on it
>>>useful.
>>>
>>>--
>>>Debbie
>>>http://www.angryuterus.com
>>>
>>>At Tue, 27 Nov 2007, Marci wrote:
>>>>
>>>>Greetings! I have found much peace in reading stories like my own. It
>>>>helps to know that other young women are in as much turmoil over this
>>>>debilitating disease (endo) as I am. I had a laprascopy last April, and
>>>>I have not found much relief. I am stage 3 and a large mass (endo
>>>>tumor) was removed from my sacral -uteral ligaments. Most of my pain
>>>>comes from my sacrum... it is always swollen and tender. During my
>>>>cycle the area even bruises from the swelling. Has anyone else
>>>>experienced this? My gyno thinks I have deep endo directly on my sacrum
>>>>and wants me to take depo lupron. I am very scared. I reacted very
>>>>badly to the pill a year ago (migraines/increased heart rate). She also
>>>>wants me to have another laprascopy after the depo treatments. She said
>>>>they can remove layers of skin to get to where the endo is on my sarum.
>>>>Help! Don't know what I should do and hoping that someone else might
>>>>have the same pain. The pain is so severe I cant function! - Marci/28
>>>>yrs
>>>>
>>>>--
>>>>Marci
>>>>
>>--
>>Marci
>>
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