Re: CEC ? pelvic pain - Heavenly Garcia
From: summer (anonymous@obgyn.net)
Sun Jun 29 18:48:05 2008
I do ANY little thing that can help me in any way - cutting out some of
these things has helped me some, I wanted to pass this on. By the way,
my ob/gyn thought I was off my rocker when I told her about this. Shows
you how much she knows. If it helps, it helps what does she care
http://www.continencenurse.net/pelvic_health/articles/oxalate.html
''
Oxalate Content of Foods
Women who experience vulvar pain due to CPP and vulvodynia may benefit
from a low oxalate diet. Oxalate is a chemical substance found in foods
of plant origin. (See Table 4 for listing of foods with low, moderate
and high oxalate content.) These women have been shown to have higher
levels of calcium oxalate in their urine that peaks in relation to
intensity of pain along with symptoms of urinary urgency, frequency,
muscle and joint pain, and rectal itching and burning. Foods containing
little or no oxalate include meat, fish, eggs, and dairy products and
foods with high oxalate levels are nuts; citrus fruits; wheat products;
tea; cocoa products; spices such as ginger, pepper, and cinnamon; soy
and peanut products; and tomatoes. Several women who tried a
low-oxalate diet as their first course of action experienced significant
pain reduction, however, a low-oxalate diet alone is not always
sufficient to reduce symptoms. It usually is necessary to combine the
diet with additional treatment in order to achieve optimal recovery.''
http://www.vulvodynia.com/links.htmOxalate Content of Foods
At Sun, 29 Jun 2008, heavenlygarcia wrote:
>
>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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