 |
 |
 |
|
|
|||
|
|
||||
|
||||
|
|
PLEAE HELP! need reccomendation of Endo Spec. in SOUTHERN CA ... if u have Kaiser, read this, found out new info.From: bren (anonymous@obgyn.net)Wed Nov 26 00:01:29 2008
Hello everyone, If you don't want to read the long post ahead, here is what I need advice/input/comment on as soon as possible and am sincerely grateful to anyone who reads this and replies...so before explaining all my frustrations, here is just the question & purpose of this post...Also, for those who have Kaiser, you can get a referral sent outside of Kaiser by your doctor & if it gets approved, then you are covered w/o any difference in copay or deductible, etc....So here is my question *******ANYONE WHO HAS INFORMATION/RECOMMENDATIONS OF AN EXPERIENCED ENDOMETRIOSIS EXCISION SPECIALIST/SURGEON in Southern CA, mainly in the Los Angeles or Orange County area or wherever around here, PLEASE REPLY ASAP OR EMAIL ME DIRECTLY AT brendarhee@yahoo.com *********** Thank YOU! I haven't posted for awhile because I have just been feeling worse overall-pelvic pain, bladder pain & burning, stress @ work, fatigue, Sciatic Pain-low back, hip, tailbone, leg pain, malaise,weird spotting, cramping, etc. etc...all managed ("MASKED") w/ medications that make my pain tolerable, yet my body KNOWS it's sufferring & I am losing my patience w/ when I will have definite answers and treatment. I was diagnosed w/ endo in May or June through a rectal-vaginal examination (lots of tenderness & nodules felt posterior my uterus-retroverted uterus)...My first treatment options were drug therapy such as Lupron, Danazol, Depo Provera, & Birth Control & my obgyn "specialist/surgeon" wanted to first put me on Lupron, but suddenly changed his mind (either from what I said about infertility issues or my pain issues or both) & decided to start me on a higher dose of Yasmin Birth Control instead...However, I didn't even last a week w/ this because I couldn't tolerate it & just made my symptoms worse-especially fatigue & moodiness. Then he decided to put me on Medroxyprogesterone (Progesterone/Provera?) 5mg BC instead & try to schedule me for a Lap, which eventually, after seeing a woman ob for a 2nd opinion, he did. I had my lap this past September & all he said was that I had a lot of scar tissue & adhesions from my appendectomy (which was done in 2003), but no endo was found...This really left me clueless & I strongly feel that the neg lap is inaccurate. I even think my appendicitis was actually endo on my appendix because I lived years and years sufferring from period pain & heavy long bleeding thinking it was normal & everything just got worse after my appendectomy and it wasn't til I started having sciatic pain that I shouted out.. I read previous posts of those women who had numerous laps by regular obgyn specialists or pelvic pain specialists or other & was also told that there was no endo found....yet when they actually got to the right experienced Endo Specialist, endo was found everywhere, excised, & their symptoms improved drastically. Well, I feel like I'm at a dead end at the moment. I was referred to the chronic pain management program @ Kaiser, which pretty much feels like a "dead end" route for me as for more further testing or anything to find & treat the source of my incapacitating pain. I already met w/ the pain psychologist twice & just had my first meeting w/ the pain doctor today (he's only there part time since he works for physical medicine & rehabilitation)....I originally had another doctor I was supposed to see 2 weeks ago, but it got canceled because he had a family emergency & wasn't returning until Dec. 4th. So I was given an option to see someone else, so I requested one who "listens"....I was told that the doctor the nurse/receptionist booked me with "listens well". However, this did NOT seem like the case. He didn't seem interested in anything I had to say except for answers to HIS questions. He went through my records stating that no herniated disc or abnormalities were found & my MRIs and CT Scans were all "remarkable" when one of them states that I have lumbar levoscoliosis, distended bladder, something on the right of my abdomen (I'm thinking this was my scar tissue from my "appendectomy"), & mastoidistis from the brain mri...He was like "I don't even know WHY you had a brain MRI done...& I told him that it was to rule out MS or other & how my brain MRI wasn't even clear to read because of my braces interferring & "well-that's how the Mastoiditis was found" & he just gave a look like "chuh!----whatever!" Then he starts babbling about what the whole program is about (something I know) & Right when I stated I'm looking for Physical Therapy, He was all "well, they also do behavioral psychological therapy such as breathing exercises, imagery, relaxation methods, etc. to help the pain naturally w/o the use of medication"-I just wanted to say "I WISH IT WAS THAT EASY!" I've done accupuncture out of my own pocket, drank that nasty eastern all natural medcation containing deer horn, bark, herbs, etc that taste like dirt, done the imagery & relaxation methods on the kaiser website (works only if you are at rest & not doing anything, but once you stop, the pain returns)....I pretty much implied that it is difficult when you have something on or pressing against OR growing your nerve such as endo (WHICH OF COURSE IS UNDERRESEARCHED & HE WOULDN'T KNOW ANYTHING ABOUT)..& he was like well all these patients in the chronic pain program have lower back pain, herniated disc causing such pain as nerve pain...but he just COULD NOT get my point... I do NOT want to be in this CHRONIC PAIN FOREVER when I KNOW that I can get treatment to remove the cause so the pain can just go away.....these patients w/ herniated disc and other injuries have chronic pain that obviously cannot be treated completely since nothing is normal after it "breaks"....once you fix it, it's still fragile....of course I know cancer pain is bad & lots of times fatal, so although endo is not as serious as cancer or fatal, it sure the heck could be just as painful...as w/ cancer, a tumor pressing on or on the nerve, spine, etc, endo can do the same thing except have adhesions directly on your nerve just like if someone is touching the nerves in your teeth...well, w/ endo, I believe that if the RIGHT DOCTOR KNOWS ALL THE MANIFISTATIONS AND APPEARANCES of ENDO and treats/remove/excise all of it, there's a less chance of it growing back & higher success rate of being back to your normal self. Then he had the nerve to ask "what if no one can find anything wrong w/ you and no one can find endo since u already had a lap, what are YOU going to do?!? what are YOU GOING TO DO THEN??????" ()@(*$&#*($!!!! I had to take a deep breath before saying something back @ him...a moment of silence as he stared at me waiting for an answer...1 second felt like 1 minute..I replied "I KNOW THAT IT'S ENDO OR SOME OTHER MENSTRUAL DISORDER OR WHATEVER IN MY PELVIS that's causing all my pain! so it's the matter of finding the right doctor!" WHEW Was I proud to say that instead of looking stupid and sitting there saying "I don't know". Oh, and he wants me to try the Fentanyl Patch, which is supposed to be super strong because he said it has killed people before (GREAT! Something I WANT to try~~Sarcasm) UGH! Can't he have respected the fact that altho' I still have to take narcotic pain meds to make the pain tolerable, that I didn't ever want to go as far as being given something stronger? especially something that could "kill" me or make me "pass out"..."Since it's the holiday, I'll be out, so try it On Thursday when you're around family/people, let them know you are trying a new med just in case you pass out or something...if you have difficulty breathing, etc etc-go to the ER..If this doesn't happen, but you feel that it's a bit too strong or sedating then call your primary care on Friday since we are closed Thurs & Friday here @ the pain clinic"... ??????? Am I overreacting w/ this pain doc???? & then he says, "w/ this type of medication, I monitor my patients VERY carefully, so that they don't get an early fill, etc"...Buddy, I don't even WANT THIS MEDICATION....why put me in danger of either making me sick or giving me something that is a stronger narcotic that later will cause more problems in the long run? ERRRRR....... I WANT TREATMENT! Well, I was so frustrated at this point and this is where I need some recommendations (as well as input from above, if you have comments) of an EXPERIENCED ENDO SPECIALIST who does excision surgery in the Southern California Region....I live on the border of Orange County and Los Angeles County, so any recommendations will GRATELY be SO SO SO MUCH APPRECIATED....yes, I have Kaiser Permanente and there is NO endo specialist w/in Kaiser....I called memership services after the appt w/ the pain doc cuz he just made me more determined to prove every doctor who ever even doubted anything about the severity of my pain VERY VERY WRONG & once I do, I want to get this research going and be as proactivce as possible to get more publicity on this HORRIBLE DISEASE....it's like a disease that isn't fatal, but doesn't have a cure, yet is on TOP of the list of INCAPACIATING pain that is UNNECCESSARY, but only the ones who suffer the horrible symptoms from it TRULY KNOW how painful & debilitating it can be...too bad MAJORITY of doctors do NOT know this... Anyways, sorry got off topic,...well, the membership services @ Kaiser said that there is no endo specialist out anywhere because there is no "creditation" for a doctor to have a title as an "ENDOMETRIOSIS SPECIALIST"...is this true???? then that means any doctor in obgyn can Diagnose you w/ endo and then say you don't have it at lap for the lack of knowledge and research he/she knows...hence, the continuous sufferring of many women....cuz she said that a referral can be made outside of Kaiser by your doctor if there is no specialist of this kind w/in Kaiser (which brought up my issue/questions of the "diagnosing" by obgyn/pelvic pain specialist & how that basically would mean that I can keep getting sent to these doctors unexperienced in endo-my obgyn surgeon even said he doesn't know all the manifistations & appearances of endo & the pain & other symptoms it causes)...Well, the lady at membership services said that there's no limit of how many referrals are made by your doctor...so this is what I said to her & asked: "if I get declined to see an experienced endo speicalist outside of Kaiser because they send me to a doctor w/in Kaiser who "focuses" more on endo or can diagnose, & I'm still not happy each time w/ whatever doctor they send me to,..I can still get another try at getting a referral by my doctor to an experienced endo specialist outside of Kaiser recommended by my friends here on the forum???? and she said "YES! you can get as many referrals as you need"..so basically, it might take a while since Kaiser will probably try to send me to someone w/in Kaiser first unless I get lucky and get approved the first try..If not, I'm not giving up until I get to see an experienced endo specialist (I say "EXPERIENCED" a LOT for obvious reasons) outside of Kaiser.. I'm just thankful that I have a great primary care physician who's been helping me w/ managing my pain w/o any problems whatsoever & giving me referrals and tests w/o any problems either....VERY THANKFUL..my obgyn is also really good, but he just doesn't know everything about endo... So please please PLEASE...ANYONE WHO HAS INFORMATION/RECOMMENDATIONS OF AN EXPERIENCED ENDOMETRIOSIS EXCISION SPECIALIST/SURGEON, PLEASE REPLY ASAP OR EMAIL ME DIRECTLY AT brendarhee@yahoo.com ........... I TRULY TRULY thank you for any HELP.....wishing all a pain free and energy full day & a wonderful Thanksgiving.......
-- Bren
|
|
Return to ![[ endo@obgyn.net ]](../../images/endo_at_obgyn.gif)
Technical Problems: webmaster@obgyn.net
Last Updated: Mon Nov 2 04:04:18 2009
Women's Insurance Checklist from Auto Insurance Quote
home | medical professionals | women | industry | forums | international