Re: Pain in area of 'tail-bone'--> to Erica
From: Erica (anonymous@obgyn.net)
Wed Jan 17 16:50:26 2007
D,
I hear what your saying about endo being behind the peritoneum on or
near the nerves because my doctor initially explained that to me as well
so I wonder if that is also at work. I will be interested to see if as
my other joint pain hopefully resolves itself (although as many have
atested on this forum, it could take months!) if my back/tailbone pain
improves or stays the same. I will try to update everyone in the next
few months. I also wanted to say thanks for sharing the LupronVictims
support group-I will definitely check that out!
--
Erica
At Wed, 17 Jan 2007, D wrote:
>
>I agree, it could be a side-effect from the Lupron, but it also isn't
>uncommon for women with endo to have pain in that area. I get pain in
>the back of my thighs/butt that runs down my legs, and also down the
>inside front of my thigh, and aches in my lower back (I never took
>Lupron). What I've read is that the endo can be "retroperitoneal" or
>behind the peritoneum on or near nerves, and/or ligaments, etc. Most
>doctors don't look there - I know my old doc didn't when she did my lap.
>
>There's a "LupronVictims" support group on yahoo - maybe they would have
>some insight?
>
>http://groups.yahoo.com/group/LupronVictims/
>
>But (in case it isn't completely obvious) I know some people don't want
>to hear negative stuff about Lupron, so if you don't, don't join that
>group! Personally, the risks of long-term negative effects are too much
>for me to try Lupron, but just about every doctor I've seen has
>suggested it - even after I tell them I won't take it, which I think is
>rude for them to keep pushing it when I've said NO.
>
>Anyway, hope this helps.
>
>At Wed, 17 Jan 2007, Tara wrote:
>>
>>That is too strange... and it just seems to me a little unlikely that
>>so many women with endo seem to experience the same pain... I have
>>taken Lupron but that was almost two years ago... (though I must say
>>that I do beleive I havent ever gotten over some of the side effects,
>>maybe I sound paranoid... but I just havent really ever felt the same
>>since taking it!)I don't know but you raise a good point, could this
>>maybe be a long term side effect of Lupron????
>>
>>At Tue, 16 Jan 2007, Erica wrote:
>>>
>>>Tara,
>>>
>>>For about the past two months I have been having back pain. It
>>>originally began as tailbone pain. My doctor told me that it was likely
>>>that the endometriosis could be affecting many of the nerves near the
>>>tailbone and therefore the body is perceiving it as tailbone pain.
>>>However, the pain for me changed and I started having more right sided
>>>tailbone pain and I went to a neurosurgeon who thought it may be my
>>>sacroiliac joint (where pelvis connects to tailbone). However I hadn't
>>>had any accidents or anything. I had a cortisone injection and it
>>>didn't help. Now the pain is more generalized in my lower back but also
>>>near my tailbone to where I have to sit on cushions and after a long
>>>time it really starts to hurt. Its interesting because I've also
>>>developed alot of other joint and bone pain as a side effect of having
>>>Lupron injections. I have started to question whether my tailbone pain
>>>was joint pain that was related to side effects of the Lupron and maybe
>>>I twisted the wrong way or lifted something and it made the pain worse.
>>>I've been on pain pills and rested and the back pain persists. To
>>>answer your question in a word, no I have not had anything prove my pain
>>>is related to endo. One of my questions for you and others out there is
>>>that for those who are having this pain, have you all been on Lupron
>>>around the same time? One of the side effects listed in some of the
>>>Lupron studies is "spine compression" but this is not elaborated on and
>>>so I am confused as to what that means.
>>>
>>>--
>>>Erica
>>>
>>>At Tue, 16 Jan 2007, Tara wrote:
>>>>
>>>>I know many of you have stated that you also experience pain in the area
>>>>of your tailbone. I was wondering though, how likely it is that this is
>>>>linked ot Endo? My mom has had a bad back for as long as I can remember
>>>>and always said that it originated around her tailbone. I'm set to have
>>>>LAPEX surgery in March, and I'm sure my mind will be set at ease then,
>>>>but I'm just contemplating whether or not I should have this checked out
>>>>as maybe not being related to my Endo...
>>>>
>>>>The pain recently has become worse, sitting for long periods is not a
>>>>piercing pain but a numbing one that is just so irritating...its gotten
>>>>to the point where even laying down on my back hurts... I now sleep on
>>>>my right side because my endo pain acts up when i sleep on my stomach or
>>>>my left side!
>>>>
>>>>Has anyone had anything to prove this could be directly linked with my
>>>>endo?
>>>
>>>--
>>>Erica
>>>
>--
>Find an endo specialist in the ERC's EndoDocs group:
>http://groups.yahoo.com/group/EndoDocs/
>
>Try an excellent endo support group:
>http://groups.yahoo.com/group/erc/
>
--
Erica
![[ endo@obgyn.net ]](../../images/endo_at_obgyn.gif)