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Re: I'm in the gang!
From: Alyson (anonymous@obgyn.net)
Thu Jan 4 08:42:03 2007
I'm not sure from the article I read how significant the blood supply
issue is to removal. I got the feeling it was a source of connection,
but not something as "networked" as say a tumor with blood supply. More
of a link to nerve pathways that link to larger nerve bundles. So,
hopefully that won't be an issue when you do find someone to get in
there and take this stuff out! I also find it interesting that your
doctor says he was unable to look further down into your pelvic cavity.
Its seems like a basic part of the procedure. I'd be interested to hear
the reasoning behind that whenever you get to talk to him again. What
you've described sounds exactly like the pain I get when I've been
sitting or curled up on the couch and stand up too quickly. It feels
like that "rubber band" is stuck to my ovaries and the back side of my
stomach wall. I can imagine how uncomfortable you must be. The pelvic
specialist is probably your best bet no matter what. I read a little of
your thread with D and I think it was really smart of you to wait to
find a specialist to actually remove the endo. I've often wondered what
damage may have been done by my previous doctors who are not very
experienced with this. I'll certainly not do it again until I can get
in with a specialist. I think so many of us get so desperate for an
answer that when we finally find a doc that says "I think you have this,
lets go in and see and I'll zap it while I'm there" we jump at the idea.
I wish I had had all of the resources and information I have now back
then.
Good luck to you.
Alyson
At Thu, 4 Jan 2007, Debbie wrote:
>
>Hi Alyson, and thanks for your reply. I think you are correct about
>there being adhesions. This definitely feels consistent with something
>being stuck or adhered. It feels like a tight rubber band that tears
>the tissue and structures every time I try to move. I don't know why he
>couldn't see it during the lap and I haven't been able to ask him as he
>himself has been off sick since I had my surgery and I've not been able
>to see him. I saw another doctor who recommended that I go see this
>pelvic specialist, so hopefully he will have the skills and knowledge to
>know where to look. I really hope that if there is Endo down there,
>that it is accessible and can be removed. If it is tied up with the
>blood supply that would be very tricky and complicated. This disease is
>so evil and sneaky!
>
>--
>Debbie
>
>At Wed, 3 Jan 2007, Alyson wrote:
>>
>>Debbie,
>>My thoughts on the risks are purely conjecture. From what I know of
>>those nerves, there would be no connection to your motor function. I am
>>not positive about the bladder/sexual/bowel connection. That is
>>something I was assured by my doctor was not an issue, but I haven't
>>done the research myself.
>>I think the interesting thing about what you have described is that your
>>doctor said he was unable to look deep enough to determine if there is
>>endo in that area. It is actually a pretty common area to find
>>endo...on the sacral ligament, and in the cul de sac (that little area
>>b/w your uterus and bowels at the bottom). In my case I had it in those
>>areas along with an orange sized lesion deep in my lower right hip area.
>>You mentioned that your ovary was bound with scar tissue. It is
>>absolutely possible that you have endo in the areas your doctor didn't
>>look and that it is also bound with adhesions. If adhesions are binding
>>that area it could explain that sensation when you bend down. Sciatic
>>nerve pain typically feels more like pain radiating from the outside of
>>your hip joint straight down the outside of your legs and from the hip
>>up through the back along side the spine. I've done some reading about
>>nerve involvement that suggests that the blood supply to endo lesions
>>can be tied in with the blood supply to tissues in regions of certain
>>nerves essentially establishing a sort of connection to that nerve
>>without growing directly on it. The thought is that might explain why
>>some women can have severe endo and no pain while others may have very
>>little endo an severe pain.
>>Just a thought.
>>Alyson
>>
>>At Wed, 3 Jan 2007, Debbie wrote:
>>>
>>>Hi Alyson. I have read a lot about it and to be honest the pain is so
>>>widespread that it's hard to put my finger on exactly where it's coming
>>>from. It very likely could be sacral but it's also in my pelvis on the
>>>inside of my hip joint. I wouldn't say it goes down my legs but it
>>>feels like a knife is being plunged between my legs into the insie of my
>>>hip and through my sacral/lower back area. I'm not sure what sciatica
>>>would feel like. I don't have any pain going down the back of my leg or
>>>hamstring area. It's more like deep iside my pelvis and it feels like
>>>my organs are ripping apart everytime I bend over or try to put my socks
>>>on. It is so severe it makes me cry out in pain and people look at me
>>>weirdly. I've heard about the sacral nerve ablation but it makes me
>>>nervous. Is there any risk of paralysis or bladder/bowel/sex issues
>>>with this procedure? I also think that I have Endo actually on the
>>>nerves or I wouldn't be getting this kind of pain.
>>>
>>>At Wed, 3 Jan 2007, Alyson wrote:
>>>>
>>>>Back pain is pretty common with endometriosis. It is usually discussed
>>>>with reference to the sacral ligament. Endo can invade the ligament
>>>>(which attaches your uterus to your back) causing aggravation of those
>>>>nerves which in turn translates to the back pain. Some surgeons will
>>>>perform a sacral nerve ablation where they cut the nerves in the
>>>>ligament to prevent them from transmitting that pain signal to the back.
>>>>I had it done during my last laproscopy and it really helped. I'm not
>>>>pain free, but the back pain is significantly better.
>>>>
>>>>As far as the pelvic pain, do you mean in your hips? Alot of us describe
>>>>having sciatic pain. It feels like pains shooting through your hips,
>>>>down your legs, etc. I think many of us have had a hard time getting
>>>>that diagnosed, but feel that it does have something to do with the
>>>>endo. There is such a thing as sciatic endo (endo growing on the
>>>>sciatic nerves) but, doctors feel that it is pretty rare. I am
>>>>currently dealing with that and don't know if the endo is just growing
>>>>near there and causing problems, or is actually on the nerves.
>>>>
>>>>--
>>>>Alyson
>>>>
>>>>At Tue, 2 Jan 2007, Debbie wrote:
>>>>>
>>>>>I had my first lap in December and finally Endo was diagnosed.
>>>>>Yippee...welcome me to the gang! (Much sarcasm). The doc took pics and
>>>>>I can clearly see Endo on my uterus and ovaries. My right ovary was
>>>>>adhered to my pelvic wall so that was released. I was told that my Endo
>>>>>is stage 1 on my uterus and stage 2 on my ovaries. The thing is, is
>>>>>that my pain is in my pelvis and lower back and it's now pretty much
>>>>>constant and quite debilitating. I'm having trouble bending down and
>>>>>sitting in certain chairs and the doc said he couldn't see down far
>>>>>enough to see that area of my pelvis and has referred me to an Endo
>>>>>pelvic specialist. Has anyone experienced really bad back and/or pelvic
>>>>>pain with this disease? I do have uterine pain but it's worse after sex
>>>>>or near to my period. The other pain is there all the time, although it
>>>>>started off as cyclical. I've had an MRI and am pretty confident this
>>>>>is Endo related.
>>>>>
>>>>>Also, the worst part of this disease for me is the PMS symptoms. I get
>>>>>extreme fatigue round about day 14 of my cycle and also depression,
>>>>>irritability, aggession and basically everything in my life falls apart.
>>>>>I feel so out of control during this time I can barely function, and yet
>>>>>right after my period I feel full of energy and am happy and productive.
>>>>>I have changed my diet and am using Progesterone cream which has helped
>>>>>knocked the edge off, but this aspect of Endo is driving me nuts. Life
>>>>>feels like a battle during the last 14 days of my cycle and half of each
>>>>>month is a washout. I am against taking any hormones and want to battle
>>>>>this naturally. Do any of you have any suggestions of have any tips
>>>>>that have helped you?
>>>>
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