Re: Anyone with hip associated with endo?
From: Pam (anonymous@obgyn.net)
Sun Apr 6 12:02:08 2003
Anita,
It's nice to find someone who can relate to what I am going through also. I
am so sorry that you have had to go through all of this and you are still in
pain. I know that talking about it helps me and knowing I am not alone or
crazy if also a great relief. I am still in pain myself, and would do just
about anything to be out of it right now. Please email me and let me know
how you are doing. Maybe we can help each other. I haven't had a
hysterectomy and still trying to make up my mind. I stopped the Lupron
because it was making me and my family crazy!! I couldn't stand the night
sweats either and I am still bleeding anyway and in more pain now than ever.
Every situation is different though. I hope the Lupron works for you. Why
did the doctor decide to put you on Lupron?? It's supposed to suppress your
ovaries and stop you from having a period. I'm curious to know, if you no
longer have your ovaries why he/she would put you on this particular drug?
I, too suffer from the back/hip pain and can't sleep at night either. I
almost dread going to sleep at night because I know the pain that will
follow. We need to come up with a bed that provides heat so we aren't
killing ourselves wrapped up in a heating pad all night!! I feel like the
biggest pill popper ever!!. I take 800mg of Advil almost daily, my body
couldn't tolerate narcotics!! I also take a calcium/magnesium supplement,
it's supposed to help with inflammation. So far it hasn't!! I also take
ambien to help me sleep at night. I hate taking anything to sleep, but was
desperate and it has helped me some!! Do you ever use an ice-pack?
Sometimes ice works better for me than the heat. Not sure why, but I do
find more relief with cold when all else has failed I also have trouble
just sitting for any length of time. My back really starts to hurt when
working on the computer. I also worked on my feet, in heels, for almost 10
years and I know that probably hasn't helped my situation. Please write me
back if you can and let me know what helps best for your back/hip pain. Our
stories almost sound identical. I have a year on you though!! My son is 6
years old, how old are you children?? We are so fortunate after all we've
been though to have children at all!! It's a miracle, I'd say!!
Write me anytime, Pamwaters@earthlink.net
Pam
>----- Original Message -----
From: "Anita" <anonymous@obgyn.net>
To: "Multiple recipients of list ENDO" <anonymous@obgyn.net>
Sent: Saturday, April 05, 2003 8:08 PM
Subject: Re: Anyone with hip associated with endo?
> Hi all, I am 42 and have had endo for 22 years. I first found out when
> I was 20 and went to gyno for infertility. I had a huge cyst that had
> to be removed and my left tube and ovavy with it. I was told to have my
> family right away. I had 2 children and 5 years later was in for a
> histerectomy. For years I would still have mentral pain and I would
> spot every month. Yes I had no uterus but I did spot for 3 days every
> month. The doctors just said as long as it wasn't too bothersom not to
> worry. Than it stoped for a few years until last Nov. I spotted again
> and had the pain. About 5 weeks ago on a Sat. I had severe pain on my
> right side into my back and hip and even down by my ankle. That Mon I
> had an ultra sound and I had 5 cysts on my ovary. After 2 weeks of pain
> and waiting to see if they would go away and didn't I had laposcopic
> surgery she took my right tube and most of my ovary but couldn't get it
> all because it and the endo was enhered to my pelvic wall and bladder. I
> still have bad hip and back pain. I started the lupron shots 2 weeks
> ago. I have not experienced any menopousal syptoms yet. The pain still
> remains. At my job I am on my feet and with alot of ibpro. I do all
> right but the nights are bad for me also. I can't sit or lay down with
> out the pain worsening. I sleep on a heating pad most of the night. I
> am hoping the lupron injection will work. Has anyone out there had the
> full 6 months of injections with sucess? I doubt if a hysterrectomy will
> end your endo problems. I have only a small portion of one ovary left
> and still have pain. If you do decide on a hysterectomy make sure they
> take the overies that is what keeps endo alive! i hope we all find
> releif soon! I am glad i found this site I was beginning to think I had
> something other then endo wrong with me. Anita
>
> At Mon, 10 Mar 2003, kdrury wrote:
> >
> >Pam it is so weird, I also have had endo for several years and have
severe back & hip pain. When I went to my doctor he thought since I had
wreck that was what was wrong. So after several months of physical therapy
TWICE! I'm still in pain. And now he wants to do a hysterectomy.
> >
> >Hope we can get relief soon.
> >Kim
> >
>> >> ----- Original Message -----
> > From: Pam Waters
> > To: Multiple recipients of list ENDO
> > Sent: Sunday, March 09, 2003 9:40 PM
> > Subject: Anyone with hip associated with endo?
> >
> > Thur March 7,
> >
> > Amy, I have spent the last 3 years with back/hip pain. I was diagnosed
with
> > endometriosis in my twenties. I've had a D&C, three or four
> > laparoscope's(I've lost count) and many years of infertility
treatments,
> > including, three articificial inseminations., GIFT and two Invitro
> > Fertilizations. I am now 43years old. When my pain started it felt
like
> > bruises on my hips. I can't even sleep on my sides at night anymore.
I
> > have been sent to Physical therapists, who couldn't figure out why I
had
> > pain in hip/back area. Yet they still had me doing six months worth of
> > therapy which left me in more pain than I started out with. Next I was
seen
> > by a round of Orthopedic surgeons, one of which was at Bethesda in
Maryland.
> > The President is seen there for goodness sake!! Not one of these
doctors
> > could find anything other than a little degenerative disc problem.
Finally
> > I went to my gyn and asked him if my back /hip pain could be associated
with
> > my Endo? He said it was a possibility, that perhaps the endo had
attached
> > itself to the some nerve endings in my back. He did another
laparoscopy and
> > removed what he could of my endo. We were hoping this surgery would
help
> > with the back /hip pain. I was hopeful after the surgery because I
wasn't
> > in pain anymore. Unfortunately the pain slowly came back after several
> > weeks. After that he suggested I go to a Pain Clinic, which I did. The
> > doctor there put me on narcotics my body cannot tolerate. Because my
> > husband is in the Navy, I am seeing Navy doctors here at Balboa in San
> > Diego. We moved here this past July,2002. Since then I have been sent
to
> > another orthopedic surgeon who, by some miracle was a woman.She is
convinced
> > the endo and back pain are related. She then sent me to see a Gyn who
> > promptly did an endo biopsy and tried to put me on Lupron injections.
By the
> > time I left his office I was drained and felt as if he thought this
> > medication would make it all go away. Unfortunately for me I've been
down
> > the Lupron road before (hotflashes, night sweats, mood swings). I
refuse to
> > put myself into medically induced menopause. Also, I know this will
not
> > help with my back/hip pain. As an aside to this I have been seeing a
pain
> > specialist who has done three Epidural back injections and they have
done
> > nothing to ease my agony. I have lived in pain far too long. I want
my
> > life back. I am at the point where I am willing to undergo a complete
> > hysterectomy if it will relieve my suffering. I know this doesn't help
your
> > pain, but I wanted you to know that you are not alone. You are not
crazy
> > and there are other woman out there who will listen. To me that is a
> > comfort. Today I have this letter with me in hopes my new doctor, a
woman,
> > who will understand what I've gone through and help me.
> >
> > Pam Waters
>
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