Hello Everyone,
I am completely frustrated and so unsure what to do next.
Was hoping some fellow pain suffers maybe able to help.
Here is a brief bio of me so you can understand.
I have been dealing with pain for 17 years, Last 5 years turned
dibilatating.I am completely disabled with pain from upper and lower
abdomen, hips,pelvis,bladder, bowels,chronic head neck and face pain,
disc problems in both my neck and back, intercystial cystis,Hiatial
hernia,ulcers gerd,severe IBS,Fibro,MPS,Osteo Arthritis,Bursitis, Frozen
shoulder and sadly more.
I have had 12 abdominal surgeries already. I had a full TAH 4 1/2 years
ago for stage 5 endo,adhesions,fibroids cyst,infections the works.
I am 33 years old, after going from doctor to doctor in hopes of what to
do next with the chronic pain I am suffering with, I went back to my old
gyn doctor even though i have no gyn organs left. At his office
yesterday he decided it was time to go back in clean up the adhesions
and see what else is going on. But since I have no gyn organs left he
sent me a general surgeon today for a second opinion. Now first off I
was so thrilled that my old gyn doctor wanted to do surgery, first
doctor who wanted to do something for me other than medicate and test.
Well the first words out of this surgeons mouth was.ADHESIONS DON"T
CAUSE PAIN>> OK SCREAM WITH ME....GRRRRRRRR.. ok the last 17 years have
just been fun, knew i was going to be in trouble.
He said there is no doubt that the adhesions were there but would not
recommend surgery, he would rather do more test and do the wait and see
thing again..been waiting and seeing 5 years, have done this route over
and over again.
Lets wait and see if I have a full bowel obstruction, I have an appendix
still imagine that after 12 surgeries, that appendix has been covered
with adhesions has had the ovary removed from it twice they retacked it
to put it in place again, lets wait and see if it ruptures.He would
rather wait to see if something life threatening happens than open me up
to clean up adhesions,endo and or other things that don't seem life
threatening at the moment.
He wants to take another inovassive approach. He is almost positive
that the endometriosis is back, and has invaded probably all of the
abdomen,bowels bladder ect.. been there before why not.His coarse of
treatment would be to remove me from my Estrogen, and see if any of it
dies off. Well considering I am 33 years old and already have bone
loss,and arthritis, keeping me on the estrogen gyn doctor said is a
must. Besides all the abdominal problems I suffer with many other
medical conditions which cause pain. I am in pain 24 hours aday, even
though I am on large dose of demerol,Muscle relaxers and Neurotin,along
with other meds to help control some of my problems. The medications
are not working no matter how high they keep upping them. GI doctor
agreed surgery would be a good thing. Urologist said it would be a good
thing, but surgeon said lets wait and see. I am in complete tears with
pain and frustration.
Where do I go what do I do next?
I even told GYN that I know its possible for more adhesions and endo to
come back,but would rather have a little bit of relief than no relief at
all. Shouldn't the surgeon want to do whats best for the patient,whats
best for me is to be out of pain even for a minute. I finally had some
hope yesterday when GYN wanted to take a peak and then it was crushed
again by someone else who wants to pass the buck to another doctor.
I figured if anyone could understand my frustration it would be you all.
thanks for listening
Kimmi