B-Jean
03-06-2003, 11:18 AM
Hi,
I have had endo for years. Had a hysterectomy last feb for it and just found out they did'nt get all of it. I am now checking into The Center for Endometriosis Care in Atlanta, Ga. Just wonder if you know of it? Just waiting to get ok from my insurance.
Thanks, B-Jean
I have had endo for years. Had a hysterectomy last feb for it and just found out they did'nt get all of it. I am now checking into The Center for Endometriosis Care in Atlanta, Ga. Just wonder if you know of it? Just waiting to get ok from my insurance.
Thanks, B-Jean
Sponsor
northernlights
03-06-2003, 01:22 PM
I live in Atlanta, and haven't heard of the place you mentioned....I also had a hysterectomy in Aug., but it was done for a different reason than yours.
I would assume it was a well thought of place, since they're sending you all the way down here. We have WONDERFUL doctors here in the area- I'd love to look into it for you if you would like....who is the doctor you are seeing here?
~northernlights~
I would assume it was a well thought of place, since they're sending you all the way down here. We have WONDERFUL doctors here in the area- I'd love to look into it for you if you would like....who is the doctor you are seeing here?
~northernlights~
RareEndo
03-07-2003, 09:34 AM
Hi B-Jean,
Sorry I didn't notice your post earlier.
As for the Institute I do not know of it first hand but have heard wonderful things about it. It looks as though you have someone to help you however.
Tell me more about your story if you want to. I'm considering a complete hyst. however a nurse friend of mine is adimant that I keep my ovaries. I don't see how this is really going to help because my Endo is Extrapelvic (out side the pelvis) not the "powder-burn" type lesions but Endometriomas imbedded in abdominal wall muscles.
The adhesions on the pelvic organs however may be enough for me to consider seriously (after failed treatment with Lupron and Continuous BCP) having at least removal of Uterus and tubes. Right now I'm dealing with muscle pain (from Endometriomas and previous surgery repairs and reconstruction in the abdominal wall) and having my small intestine NOT falling into place due to mass pelvic adhesions and scar tissue.
I also have spina bifida occulta (closed at birth) that I just found out about a couple weeks ago...The whole trunk on my body is like a women cut in two... :(
Unfortunately as well I'm dealing with the possibility of Multiple Sclerosis, Vascular problems (stroke etc) just unsure right now as my next Brain MRI in May will be with contrast and tell us much more.
Take Care B-Jean and God Bless
I hope everything works out for you. I don't prefer surgery (I was told I got my Endometriosis in 1995 from my first c-section) I can only imagin the problems I may have with a hysterectomy.
Jessica
Sorry I didn't notice your post earlier.
As for the Institute I do not know of it first hand but have heard wonderful things about it. It looks as though you have someone to help you however.
Tell me more about your story if you want to. I'm considering a complete hyst. however a nurse friend of mine is adimant that I keep my ovaries. I don't see how this is really going to help because my Endo is Extrapelvic (out side the pelvis) not the "powder-burn" type lesions but Endometriomas imbedded in abdominal wall muscles.
The adhesions on the pelvic organs however may be enough for me to consider seriously (after failed treatment with Lupron and Continuous BCP) having at least removal of Uterus and tubes. Right now I'm dealing with muscle pain (from Endometriomas and previous surgery repairs and reconstruction in the abdominal wall) and having my small intestine NOT falling into place due to mass pelvic adhesions and scar tissue.
I also have spina bifida occulta (closed at birth) that I just found out about a couple weeks ago...The whole trunk on my body is like a women cut in two... :(
Unfortunately as well I'm dealing with the possibility of Multiple Sclerosis, Vascular problems (stroke etc) just unsure right now as my next Brain MRI in May will be with contrast and tell us much more.
Take Care B-Jean and God Bless
I hope everything works out for you. I don't prefer surgery (I was told I got my Endometriosis in 1995 from my first c-section) I can only imagin the problems I may have with a hysterectomy.
Jessica
B-Jean
03-07-2003, 10:58 AM
To northernlights,
Thanks for your response! I found out about the center while I was doing research on the web. I asked the center some ?'s and got a reply from a Dr. Ken Sinervo,Center For Endometriosis Care. I just found out that my insurance will cover it. Am hoping to get in there the first week in July(my husband will be on vacation then). Will keep you posted and yes any information you could get would be so much appreciated!
Thanks, B-Jean
Thanks for your response! I found out about the center while I was doing research on the web. I asked the center some ?'s and got a reply from a Dr. Ken Sinervo,Center For Endometriosis Care. I just found out that my insurance will cover it. Am hoping to get in there the first week in July(my husband will be on vacation then). Will keep you posted and yes any information you could get would be so much appreciated!
Thanks, B-Jean
B-Jean
03-07-2003, 11:20 AM
Hi again RareEndo,
Thanks for your quick response. Will try to make this short. I had problems ever since I was a teen. I missed lots of school becuz of my periods. It was'nt until I was 25 that my endo was diagnosed. I did end up having 2 beautiful daughters after they told me I had a 50/50 chance of getting pregnant(not without difficulty). After many laps and depo shots it just got worse. In the meantime I was diagnosed with Grave's Disease, angina, gallbladder polyps, and a hemangioma on my liver. I just had another ultrasound on tuesday(they are still concerned) so I will be having an MRI on monday. Back to the endo-they decided that my only chance to rid me of the endo was a hysterectomy. When the surgeon got it there it was a mess-so she took everything including my cervix. One of my tubes was attached to my colon, a nodule about the size of a peanut m&m(blue) was on my pelvic side wall. My pain started again about 7 months after my surgery. i went to Mayo Clinic and they said I have residual endo. So am looking for the best doctor I can to finally rid me of this! It is a miracle that my husband and I are still married(poor guy). But he has been mostly understanding about it.
Well gonna go have coffee with the girls-will check later on posts.
Wishing you well, B-Jean
Thanks for your quick response. Will try to make this short. I had problems ever since I was a teen. I missed lots of school becuz of my periods. It was'nt until I was 25 that my endo was diagnosed. I did end up having 2 beautiful daughters after they told me I had a 50/50 chance of getting pregnant(not without difficulty). After many laps and depo shots it just got worse. In the meantime I was diagnosed with Grave's Disease, angina, gallbladder polyps, and a hemangioma on my liver. I just had another ultrasound on tuesday(they are still concerned) so I will be having an MRI on monday. Back to the endo-they decided that my only chance to rid me of the endo was a hysterectomy. When the surgeon got it there it was a mess-so she took everything including my cervix. One of my tubes was attached to my colon, a nodule about the size of a peanut m&m(blue) was on my pelvic side wall. My pain started again about 7 months after my surgery. i went to Mayo Clinic and they said I have residual endo. So am looking for the best doctor I can to finally rid me of this! It is a miracle that my husband and I are still married(poor guy). But he has been mostly understanding about it.
Well gonna go have coffee with the girls-will check later on posts.
Wishing you well, B-Jean
B-Jean
03-07-2003, 02:47 PM
Hi,
Forgot to mention that my eye doctor said my eyes are suspicious for glaucoma-had tests for that and it showed I have nerve damage but the pressure in my eyes is normal. I also had a DEXA scan and was told I have osteopenia(numbers are close to osteoporosis)in the spine along with mild scoliosis. I'm a mess :(
I try to find some kind of sense in all this but is very hard to do!
B-Jean
Forgot to mention that my eye doctor said my eyes are suspicious for glaucoma-had tests for that and it showed I have nerve damage but the pressure in my eyes is normal. I also had a DEXA scan and was told I have osteopenia(numbers are close to osteoporosis)in the spine along with mild scoliosis. I'm a mess :(
I try to find some kind of sense in all this but is very hard to do!
B-Jean
RareEndo
03-08-2003, 01:25 PM
B-Jean you sound just like me, and like you I'm fortunate to have a great husband that didn't run at the first sight of trouble.
I wish you the best, It's my understanding there is no cure for endometriosis allthough a hysterectomy or menopause will certainly better the chances.
Sounds like the problems you have abdominally are due to endo/adhesions/scar tissue.
Anytime you have these things it's difficult at best for most (even skilled) surgeons to get it all. I would be weary of bowel or bladder surgery, I tend to be pessimistic because of previous complications.
This disease is truly a catch-22. I wish I had the answers for you, trial an error really sucks when your dealing with your body and physical well being.
Wish you the best Take Care and God Bless
Jessica
I wish you the best, It's my understanding there is no cure for endometriosis allthough a hysterectomy or menopause will certainly better the chances.
Sounds like the problems you have abdominally are due to endo/adhesions/scar tissue.
Anytime you have these things it's difficult at best for most (even skilled) surgeons to get it all. I would be weary of bowel or bladder surgery, I tend to be pessimistic because of previous complications.
This disease is truly a catch-22. I wish I had the answers for you, trial an error really sucks when your dealing with your body and physical well being.
Wish you the best Take Care and God Bless
Jessica