ENDO Messages for November, 2008: Re: Endometriosis Laparoscopy Surgery Reply to Monika & EVERYONE Read & give input/comments.Thanks

Re: Endometriosis Laparoscopy Surgery Reply to Monika & EVERYONE Read & give input/comments.Thanks

From: bren (anonymous@obgyn.net)
Sat Nov 29 16:47:29 2008

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Hi Monika-

The following is long since I don't post everyday, & u R the first one I've met on this forum who is in the same area as I am....I hope everyone could read this post and give their input/comment. Thanks!

I'm sorta in the same situation as you (sorry about your pain & symptoms as I know how debilitating it can be as w/ many of us...)...I was diagnosed w/ endo before a lap because 2 Drs. (1 w/ a male & 1 w/ female, both who is an obgyn specialist/surgeon) felt a lot of tenderness & nodules felt posterior my uterus along w/ having a retroverted/tilted uterus..I've posted my story a few times here already, but don't seem to get that many response when I post. This forum is the only thing I can run to in order to keep a level of sanity w/ the pain and frustrations faced w/ numerous doctors appts.

However, I learned that there are very few experienced endo specialists w/in the country (thanks to one wonderful lady who emailed me personally after one of my long posts)...All I know is of Dr. Cook in Los Gatos, CA up north (I also live in the Los Angeles Area)...However, I heard that although he is pretty good, there's many other specialists who are better. The next closest I was told was Dr.Redwine in Oregon, but I hear of everyone on this forum speaking of how great Dr.Sinervo is in Atlanta, Georgia (if I'm correct w/ the location). I have Kaiser & since there is no "credidation" of an actual "endometriosis specialist", I guess these wonderful specialists I've heard of from this forum are those who are all specialists in the obgyn field w/ more experience and expertise in endometriosis.

My obgyn who did my lap surgery said that he would refer me to a Dr.Kip Taylor who "focuses on endometriosis" & w/in Kaiser even though he say he didn't find any obvious appearances of endo. However, my surgery was relatively short & he did find scar tissues & adhesions spread from my appendectomy back in 2003, which I still question my "appendicitis" as being endometriosis back then since it was stated that it was close to bursting, yet I had a normal White Blood Cell count, which usually should've been extremely elevated in that sort of situation.

My symptoms w/ my menstrual cycle & pain got worse ever since & I just thought I was unlucky to suffer from bad menstrual pains & symptoms & was fooled into thinking it was normal. It wasn't until I started sufferring from debilitating cramps & sciatic pain that worsened during ovulation, before my period & on the onset of my period that I went for help. At first I was misdiagnosed w/ UTIs (I suffer the bladder symptoms/pain as well) & Restless Leg Syndrome, etc. Even my photos from the lap has areas that just "don't look right" especially after my roommate scanned them for me so that I am able to view it on the computer zoomed up.

My RBC is continually low for more than a year that I know of (could've been longer) & blood is always traced in my urine whether or not I am on my period. I have GI issues & used to alter from constipation to diarrhea w/ the onset of my menstrual period,...However, now I have more constipation & if I do get a bowel movement, it is very painful especially around the time of the month (sorry if this is tmi). My point is, that not all doctors know everything & it's amazing of how much they don't know especially about this horrible disease. My obgyn is a great-wonderful doctor (very caring, etc), & I respect him for admitting that he is perplexed by the symptoms & pain that endo causes & how he didn't even know all the manifistations & appearances of endo.

He also even stated once that he did not think that my GI issues could be related to endometriosis (just to show even the best obgyns may not know it all-because research even states that bowel, GI is most commonly affected for women w/ endo). The female obgyn I went to for a "2nd opinion" never even heard of sciatic endometriosis when my regular obgyn who did my lap has heard of it (although not completely familar w/ all about it) & even one of my neurologist heard of it. I believe that endo can be just as painful as cancer pain although cancer is of course more difficult to deal w/ as many times it is fatal whereas endo is not.

>From my knowledge, endo can spread anywhere from the pelvis-ovaries, cul
de sac, sciatic nerve/notch, piriformis muscle, pouch of douglas, bladder, etc; abdominal area-bowels,intestines, colon, etc. & even spread through your lymphatic system & can be found in your lungs (thoratic endo) & even the brain (although rare-it can happen)..I even watched on TLC on "medical mysteries" & they actually had a story on a woman who had a broad range of symptoms & eventually found that it was endometriosis & she even had it deep inside the ear (causing vertigo).

Anyways, thought I'd share because I have the same symptoms as you and all your pain & symptoms can most definitely be related and not separate issues. Endo can pretty much get anywhere & hide even in the most delicate & hard to examine places that leave many women sufferring even after lap surgery. The only ones I've heard of "success stories" are those who actually went out of their way and even traveled to see the most experienced excision endo specialists because these doctors were able to find all the different appearances of endo in all the right areas and excise it, which is the best way to get treatment. My pain is so debilitating & incapacitating at times because I suffer the sciatic pain & the bladder is also horrid (IC is known to be Endo's evil twin). I recently started a pain patch that has been working wonders because now I am able to get up myself in the morning & feed myself my medication rather than having to always rely on someone to do it for me.,,but I don't want to speak to soon as it has only been 2 days w/ the patch.

For now, I have an upcoming appt w/ an obgyn who specializes in urology to have a cystocopy to check my bladder due to painful burning bladder or IC symptoms. I'm also getting a referral w/ another obgyn who "focuses" more on endometriosis (which doesn't mean that she/he will be able to help if not experienced enough)....& if not, then I am asking for a referral outside of Kaiser & am willing to travel to see these great endo specialists everyone has been speaking of. I'm glad to meet someone in the same area (although not glad to know that someone else is sufferring)....if you can't get any help & continue to suffer, maybe we can plan a trip together to one of these experienced specialists such as Dr. Redwine in Oregon or Dr.Sinervo (who seems like the best from everyone's comment) in Atlanta, Georgia. What do you think? It's always easier to go through this w/ someone who knows what it feels like and truly understands.

Hopefully we can keep in touch and work together to find treatment of ourselves to end our battle of sufferring? Although I have some great support from a very few people (ironically-mostly guys are more supportive & understanding), it's a lot easier to know someone who is going through the same thing as you. Through all this, I realized who my true friends really are & it's sad that out of the many friends I thought I had, just do not understand or make me feel like I'm just making a big deal out of nothing. When I did try to explain, it was just too many medical terms that they couldn't understand or the response I'd get is something like they get cramps too during their period or one even had the nerve to ask isn't it just "bad pms?" Can be very frustrating. So, I like to look on the bright side and think of it as a blessing because I now know how to have true compassionship for others & had the opportunity to meet many wonderful woman on this forum & even have the opportunity to be a part of getting this horrible disease more recognized & taken more seriously & get more research out there.

All doctors need to be more up to date on research & educated on this debilitating disease & I think all chronic pain doctors should be required to get more knowledge on the pain this causes because it's disturbing that they are aware of the pain that cancer causes or the pain from injuries such as herniated or bulging discs, etc, but not w/ something that causes excruciating pain such as endo in which the adhesions, lesions, or scar tissue, etc can grow deep into the muscle, press or grow directly on the sciatic nerve/notch/spine & piriformis muscle, etc, & even travel through the lymphatic systems to other parts of the body including the liver, lungs, brain, etc. Why is it that this is a fact, yet majority of doctors do no know this & even worse not even the best obgyns know all the shapes, forms, appearances, locations, & manfistations of such a common disease? I want to get an article out there & even ask my friend who is a news reporter for kcal 9 and cbs 2 to help me get some media on this.

One thing I would suggest while going through your pain & symptoms until you find the right doctor to treat you is to get a doctor to manage your pain & symptoms properly. Luckily, I have a great primary doctor who has been keeping me off disability by managing my pain as best as he good w/o ever doubting my pain. If it is endo & you do suffer from the pain & symptoms (as some women do not have any pain or symptoms & only find that they have endo during a procedure for something else or due to fertility issues) & you don't get treatment, as most diagnosis for many women take months to years, then the pain & symptoms will only worsen w/ each menstrual cycle, as w/ my case.I hope this won't be the case w/ you as it has been a long emotional-physical-&mental rollercoaster for me. Hope this helps & hope we can keep in touch w/ each other & work together to get help & proper treatment since we are close by to each other. Take care & keep me posted! =) *HUGS****

*Bren

At Sat, 29 Nov 2008, Monika wrote: >
>I've been having all the symptoms of endometriosis for over a 1 yr. &
>1/2, no antibiotics worked for bladder, right side intercourse, etc.
>pain. I've been having intestenal problems too, fever, back pain, low
>energy level, etc. How is the bladder connected to all this
>endometriosis problem? My Dr. said it's all a separate problem but it
>doesn't seem to go away. After many different Dr. visits and constent
>pain, I was suggested to have a laparoscopy surgery for diagnosis. After
>seeing many specialists, none of them had the real expertise for
>laparoscopic endometriosis surgery, they have done some but they're not
>experts. I live in Los Angeles, can anyone refer me an endometriosis
>EXPERT specialist in the Los Angeles area? Someone who has done this
>surgery with a high success rate. Thank you
>
>--
>Monika
>

Next message: Niki: "Re: Heading down to CEC."
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In reply to: Monika: "Endometriosis Laparoscopy Surgery"

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