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Re: CEC ?
From: heavenlygarcia (anonymous@obgyn.net)
Sun Jun 29 14:48:46 2008
HI, first, it did say I had a LUNA on the operative report. No, it
wasn't discussed with me that it was even a possibility before the
surgery. I don't know that I had endo on them, it didn't say I did on
the report. I can't have a hysterectomy, well I guess I could but no
one is willing b/c I"m only 22. I don't know that I would want one
since it doesn't cure endo and I really feel like the pain is mostly in
the ovaries. I would be more than willing to get the right one removed,
it hurts like the devil. I have gone on IC meds, not the diet, and
never went to the urologist for diagnosis, it was a "try this medicine,
if it helps go to the urologist" It didn't help and I don't pee
frequently. I don't think that's it, I've looked into it and I just
don't have any symptoms except pelvic pain and I have endo and adeno so
that's the pain. I am on the pill, continueously. I have been freaking
bleeding for a little over 2 months straight. I have tried depo it
didn't work, just gave me a big indent in my tummy where I recieved the
shot. I won't try Lupron I rather deal with the problems I have not
take the chance of adding to them. Dr. Sinvero said I have adeno based
on that my uterus is boggy. I also have alot of bloating, and almost
lumpy feeling lower abdomen which it don't know if its just my muscles
or crazy things in my uterus. I haven't had a sonogram since about a
year ago when everything flared up and I got diagnosed. I don't have a
dr, I moved to SC about 9 months ago and have had consultaions with drs
and they all suck and the general prac. i had gone to once decided not
to tell me he didnt except my insurace so I got stuck with a big bill. I
have just lost all hope in drs, so I take herbal remedies that will
hopefully help over time. I know I need to go to the dr but I'm stuborn
and I'm scared. I don't have the money to waste going to drs that wont
help me. I also have a very limited amount that except my insurance
here since it's based out of St. Louis MO. It's some out of network in
network crap. I think I would like to go to a pain management
specialist but I don't know if they would really help or put me on some
anti depressants that are supposed to help with pain, I won't take
something that alters chemicals in my brain if Im not depressed I think
that would make a not depressed person messed up in some way, if it's
not broken don't mess with it. I hope I answered everything, if not you
know what to do.
At Sun, 29 Jun 2008, summer wrote:
>
>I am very sorry to read of your pain and problems. Yes, Dr S told me
>that if you need to have surgery again, they just charge your insurance,
>and you don't pay a co-pay. That is the way I understand things, maybe
>I misheard - I don't think so ???? :)
>
>Did you ok the LUNA before? If not, why did they do it, I wonder? Is
>that supposed to help with adeno? Adeno is not easy to diagnose without
>a hyst, and then you've lost the uterus...so...they can sometimes tell
>from pictures, how enlarged the uterus is...
>
>If you're still in pain (as you are), I am sure he'd offer some
>suggestions at this point...Would you want a hyst? I wouldn't, and it's
>hard when it's mentioned, because I still do have pain.
>
>I forget, did you mention if you have IC? i read somewhere that a woman
>wanted a hyst, but the doctor (not the CEC) suggested she first try an
>IC diet and IC medication. Along with excision. It helped!
>
>Have you had a sonogram lately? Can your local doctor prescribe one? You
>might find out if you have ovarian cysts again, or maybe even endo has
>returned in that location? Are you on the pill?
>
>take care, keep working on the pain, I feel very bad for women with this
>(and me!)
>
>Oh, one more thing. Have you considerd pelvic physical therapy?
>
>At Sun, 29 Jun 2008, heavenlygarcia wrote:
>>
>>I had my surgery with dr. Sinvero. I haven't heard about the policy
>>about getting surgery again if needed. I'll have to look into that.
>>They removed endo, took a poylp out of my uterus, took out my apendix,
>>did a LUNA (cutting of utero sacral ligaments), Took a cyst off my
>>ovary. I don't think they will still perscribe meds after 3 months,
>>they did up to then, then dr. sinvero called me to see if I was feeling
>>better yet since he knew I was not having good results he then told me i
>>have adeno, I don't know why he waited so long to tell me but whatever.
>>I think he would be willing to email me back if i emailed him. But, i
>>don't know how he could help from a state away. After they get your
>>info they will send you a packet with everything you need to know. I
>>don't know that all this pain is from adeno, it's more on either side of
>>my lower abdomen, not in the middle so much, i feel like my ovaries are
>>trying to escape. I hope I answered all your questions if not write
>>again.
>>
>>At Fri, 27 Jun 2008, summer wrote:
>>>
>>>Hi, which doctor did your surgery? Can I ask what they did during
>>>surgery? Also, I thought their policy was to allow you to have surgery
>>>again if you needed it, and they would only charge your insurance
>>>company, and not any co-pay for you?
>>>
>>>Have you ever had any relief? HUGS!
>>>
>>>At Fri, 27 Jun 2008, heavenlygarcia wrote:
>>>>
>>>>I had surgery with the CEC in December 07'. The drs are very very nice
>>>>and make you feel more comfortable than any others I have met. They
>>>>listen to you and really care. My only problem was that after my
>>>>surgery (which was the second one in five months) I have not felt better
>>>>and in the last 2 weeks have felt so incredibly bad I have no life. But,
>>>>this is not thier fault at all. They did the surgery needed and did it
>>>>properly. Though I wish they would of told me they were going to
>>>>preform a LUNA, I would of said no, it's not covered by my insurance and
>>>>it's not medically proven that it really does help all that much. I'm
>>>>just one of the unlucky small percent that don't get relief from a
>>>>surgery. I do wish they would agree to treat you longer than 3 months
>>>>post surgery b/c I am too scared to go to another dr. I don't think I
>>>>trust any other dr. to give me proper treatment. they are all lupron
>>>>pushers. There are nothing but good things said by everyone about them,
>>>>and good experiences, I'm just unlucky. Even the receptionist is really
>>>>nice. I would recommend them. Good luck, and after you send your info
>>>>to them the dr. calls you personally and is more than happy to email
>>>>you back and forth with any questions or concerns you may have.
>>>>
>>>>At Fri, 27 Jun 2008, Octfire wrote:
>>>>>
>>>>>Ok so I was sent to the Center for Ednometriosis Care website. It was
>>>>>very interesting! I learned a lot about endo that I never knew. I am
>>>>>curious though. Has anyone gone there? And were you happy with the
>>>>>doctors? I'm looking for a doctor who won't give up and will continue to
>>>>>try to figure outt the problem. Or at least get me out of this extreme
>>>>>pain. If any one has a view point of CEC I would love to hear it. Thank
>>>>>You
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