I watched this with my fianc. It was really informative, and you already know I love anything CEC and Dr Redwine related!

I highly recommend others watch this as well and learn more about your disease and how to properly treat it, (i.e. excision, not ablation), education is the only way you can properly advocate for yourself.

Thanks for posting Kdeezy!

Thank you for posting. I wish I had seen this before my surgery last year. I'm trying to find a more experienced/better skilled surgeon than my first one who missed so much.

Hi Angeleyes,
I feel your pain. A lot of us are in the same boat. Out of all the GYN's in the US, it is estimated that only about 100 exists who are actually skilled enough to treat endo through surgery. I my self at only 6.5 weeks post op from my second am already looking into my 3rd (and hopefully last) with a more skilled surgeon (for possible invasive bowel disease).

I noticed from your profile that you live in Texas? I hope you don't mind me suggesting this, but there is a really skilled endo surgeon in Texas, I think in the Denton area. I know Texas is really big, so I have no idea how far that is from you. But unfortunately, with so few qualified endo surgeons many of us end up having to travel for care (I am currently looking into the CEC in Atlanta and Dr Koh in Wisconsin and I live in MA). The doctors name is Dr John F Dulemba. There are many women in 2 other support groups that I belong to that have gone to him and have really good things to say about him. He is also an active contributor in these 2 groups. If you are interested you could check those out too, I have learned so much helpful info from them. They are called EndoMetropolis and Nancy's Nook Endometriosis educations and discussion. They are both on facebook, but are closed groups, so no one on your friends list will be able to see that you belong there are when or what you post. Also in these groups are other experts that are active contributors (including Dr Redwine and Dr Sinervo). It is really great and I highly recommend these groups for those looking for more support and further, accurate education on our disease.

I hope you are doing well. I know you have been having a tough time with your eyes. Any improvement?

Oh, I forgot. Here is a link to where he practices. http://www.womenscentre.net/index.php?option=com_content&view=article&id=100&Itemid=545

I've only had 1 surgery almost a year ago, was found to have adhesions (colon pulled down over left ovary) but he said no endometriosis but he removed my ovary with a massive cyst thinking it was an endometrioma. My new gyn says she's sure I must have endo based on my symptoms and the pelvic floor spasms and that he must have missed it all because it was probably clear or white in appearance. Anyways, I have been practically begging for another surgery but she won't do one. Denton is about an hour or hour and a half away.
Thank you for asking about my eyes. I have "bilateral intermediate granulomatous uveitis". The fact that it is in the intermediate part of the iris means it's caused by some autoimmune disorder, possibly even MS. I will be getting steroid shots in my eyes on Thursday to help since they have been getting worse and my vision is getting worse. It's scary and a lot to deal with at once.

Angel, after my first surgery with my obgyn I was told that I had a ton of endo and a ton of adhesions along with bilateral endometriomas, but she didn't remove any of it (besides one cyst). After my second surgery I was told that I had a lot of adhesions and endometriomas, but hardly any endometriosis which I found kind of strange (this was only 5 months after the first surgery). I told this to Dr. Redwine and he vehemently disagreed. He said based on the findings with cysts and adhesions and bowel involvement that I almost certainly have severe infiltrating disease that my surgeon didn't see, probably because the lesions are not classically black or red. I did some follow-up reading and found that this happens ALL the time.

I'm sorry about your eyes. I had acute uveitis once...that's what I get for sleeping in my contacts. Anyway I know how hard it must be for you, and I hope the injections help!

Angel, Kdeezy is right as is your doctor. Endo can look different at different stages of the disease and has many different colors. Also, when adhesions are involved from what I understand endo can be hiding underneath, and a lot of doctors don't know how to recognize endo that isn't classic "powder burns". One of the lesions that thought to be on my ilium looks white. just looks like a white streak, but Dr Redwine believed it is invasive endo. That is really awesome that you are so close to Dr Dulemba, I hope you are able to consider him, from what I understand he is very skilled.
Im sorry to hear about your eyes, I hope it isn't MS, that is so scary! :-(

Here is something that was written by Nancy Peterson. She is the page owner of Nancy's Nook and work with Dr Redwine in his endo program in Bend Oregon. She has given permission for it to be shared as long as she is the known author. It is a little long, but really, really informative.

endometriosis and why things don't work.

To start, endo has been know for thousands of years, but in the early 1900's a fellow named John Sampson decided that endo was black disease on the ovary, that it came from backed up menstrual blood, that is was caused by delayed child bearing, that pregnancy or castration would cure it. This plus other fallacies were taught in medical school until very recently when I have heard they are at least pointing out that endo has many colors. Of that original concept by Sampson, none of it is true as we understand endo today. However many doctors still embrace it.

Lets start with colors, a physician in Arizona Medicine by the name of Jansen in 1969 published that endo was in fact many colors and that in some patients you could see all the colors at once. In the 1980's Dr David Redwine expanded that understanding with a study that showed the endo goes thru an evolution of color appearance as it ages. So early disease may be clear papular, followed by orange, red, blue, or white plaquish fibrotic disease. Black disesae was very rare, in fact most biopsied black disease was found to be hemosiderin, the iron staining from bleeding caused by endo in the surrounding tissue. Primary endo does not have blood vessels on path report, so it does not directly bleed. It can be different for endometriomas or nodular disease that may have been infiltrated by micro blood supply.

White plaquish diease was originally thought to be and called "burned out " disease and often left in the pelvis. But if you remove it and send it off to the pathologist, you find fibrotic scarring and the glands and stroma of active endometriosis below.

Secondly in Redwines work, he mapped the location of disease, and instead of it being primarily on the ovary, it was in fact found in 7 & 9 other areas of the pelvis more frequently than the ovary. (don't recall which ovary was 8th and which was 10th, but you get the idea). The floor of the pelvis, pelvic sidewalls, bladder, ureters, bowel, ligaments both inside and outside of the pelvis, and other occult areas are all more frequently involved than the ovaries. This means if you are looking for black disease on the ovary, you are likely to miss 75% of the disease. Many still approach it this way.

Then we should address the idea of backed up menstrual blood as the cause. When you examine endometriosis and the lining of the uterus in the same patient (endometrium, ) you find they are very different in appearance, in physiology, in construction, and endometriosis lacks hormone receptor population like the lining of the uterus. This means it cannot pick up hormones in the same way that the lining of the uterus does, which could explain why endo pain occurs thru out the month and or erractically. It is not capable of being orderly. Likewise, when you transplant a tissue from one place to another there is the concept of initial attachment. This is best explained by looking at skin grafts after a burn. The new skin is laid down, gradually attaches and becomes partially incorporated but line of initial attachment never goes away. You can alway see where they came together. That is missing in endometriosis.

Also in the 1980's. Dr Redwine working with the Oregon medical examiners office, made arrangements to obtain tissue from the pelvis of infants undergoing autopsy from deaths unrelated to endometriosis. What he found in 11% of these tissue samples, glands fitting the description of endometriosis. Later a group in Italy found the same thing in 10% of infants, which is the rate of occurence in the general population. So endo is likely laid down during our fetal development.

Then he looked at does endo spread and what he found was women who had endo longer did not have more areas of tissue involved suggesting that it is a static disease. This plus the low recurrence rates following skilled excision suggested that conservative excision was a good tool for the treatment of endometriosis.

Then there were the 72 patients he saw in his first years of excision who had already been castrated with complete hyst who had active endo some as long as 20 + years post hyst. Some had no estrogen replacement in that time. They underwent excision as well with dramatic relief of pain. 75% of the patients we saw had been dismissed as neurotic, and they all had biopsy proven disease.

In the 1960's a surgeon taking a woman to surgery for a c-section, a woman who had no history of endometriosis or symptoms of endo, found a dark colored cyst on the ovary. He biopsied it on removal and found it to be a blood filled cyst without any evidence of endometriosis. His conclusion? She had endometriosis and her pregnancy cured it. That along with Sampsons belief that castration also cured endometriosis became the basis for an entire industry of drug therapy. (gnrh agonists to create a chemical menopause, and birth control to simulate pregnancy) without any foundation in science what so ever.

So the history of endometriosis and treatment lacks any science to support surgical castration, pregnancy, or pseudo pregnancy or pseudomenopause. Its all smoke and mirrors at the very dear expense of the patient. And one of the worse misogynist events in women's health ever, and it is outrageous.

Today there are less than 100 surgeons across the US and Canada doing effective endomtriosis surgery out of 55,000+ gyns. Yet they all think they can do effective endometriosis surgery, but when the surgery fails, they often dismiss the patient to psychiatric considerations. Many do not understand subtle appearances and statistical location of disease play an important part in effective surgery. Some do not even operate in the lower pelvis and recently when someone without experience tried to manipulate the uterus out of the way, the organ was punctured.
The patient was told this is common, up to 95% of the cases. This is not true, it takes experience and skill to locate, identify, and remove endo. Microscopic endo likely does not exist, instead the smallest of lesions are about the size of a human hair, visible at arms length. To be effective the surgeon has to bring all of the considerations of modern concepts (Dr Redwine's work) into play.

Very few refer patients for pelvic physical therapy or pain management, yet pain is peritoneal in quality with bloating, nausea, pallor, painful sex, painful bms, pain with full bladder, exercise, pelvic exams. By peritoneal, I mean, the disease creates peritoneal signs and symptoms which are highly respected in every other disease. and treated aggessively with pain meds or pain work. In women with endo , it is somehow dismissed as its just her period. If the surgeon lacks interest or skill in removing disease, why not refer her to someone who can? It would be a compassionate consideration, to say the least?

Sadly today if a woman is to get relief in most cases she wil have to travel, to find someone with extraordinary skill to deal effectively with her endometriosis. Otherwise she is stuck in the revolving OR door with one ineffective surgery after another, only to be finally dismissed as neurotic and left to her own devices.

There are good reasons to do a hysterectomy, but endo is not one of them. Endo must be completely excised if pain relief is to be achieved. Removing organs will not help if you leave endo behind. In cases of adenomyosis, when child bearing is done, some surgeons have found taking the uterus gives more complete relief of pelvic pain.

Once again, an Australian nurse, Sister Kenny's experience with polio patients comes to mind: She developed treatments that prevented frozen joints and severe pain with woolen hot packs and physical therapy. She was soundly trounced world wide for decades. Once they realized she was right polio treatment centers widely adopted her work. When asked why such simple changes in care with such dramatic outcomes was so slow to be adopted she replied: "When we speak with the voice of authority, we come to believe we are the authority." When I read that I thought despite evidence to the contrary. There is plenty of evidence that SKILLED EXCISION of endometriosis changes lives, well documented, and published, so where is the rest of the world? Why have we failed in compassionate understanding of these lives of quiet despair, and hopelessness? How is it that we cannot hear or comprehend their pain?

Angel,
I meant to ask. Did your doctor biopsy your ovarian cyst when it was removed?

Thank you so much for the information on the history of our disease. Very important info.

kDeezy, Thank you. It's difficult for sure. I don't wear contacts so finding the cause is becoming stressful.

Vally, the cyst was a hemorrhagic one. The size of an orange. My new gyn says there was no reason to remove the ovary which just upset me all over again.

Im sorry to hear you may have lost you ovary unnecessarily. :-( I hear things from other woman on other sites all the time about how their surgeons took things out and they may not have had to.

I almost lost my left ovary, and at my pre-op they said ok, you surgery is to remove the left ovary and the two (monster) cysts on it. I said, "ah, no! you only taking the ovary if necessary" and made them change the paperwork. My 1st surgeon was terrible, but she did save my ovary, so for that I am grateful.

The reason I asked about the cyst is because Dr Redwine has mentioned numerous times that it is highly unlikely that you have endo on the ovary but no where else. It can happen I guess, but it isn't common. It sounds like your new GYN knows more than the other, but finding a skilled surgeon I think will be key. I personally am keeping my R/E to follow me medically, but will had my 2nd surgery with a more skilled surgeon and will have my possible 3rd with someone else as well because the R/E although knowledgeable his skills for a stage 4 patient just isn't there (he even told me this). I wish you the best of luck with everything! I hope they find a solution to your eyes, I have visual issues in my left and I can only imagine how difficult is must be for both of your eyes to me giving you trouble.

Vans: I find the history of our disease to be so interesting. It is crazy to me that most doctors are not on the same page when it comes to treatment. This is why I normally will look to what the experts are saying or doing because their opinions are usually pretty consistent with each other. It is even crazier to me that we have all this info out there about endo and how it looks and how it should be treated but there are still so much misinformation. How do doctors not know there are more colors to a lesion than the black "powder burn lesions"? Crazy!

@VallyWillis did you read Dr. Redwine's book Googling Endometriosis? If you like a historical take on the disease it's an interesting read.

Thanks, ladies for the links=) I DO HAVE A QUESTION, though it may sound stupid. I've basically given up on trying to get any "specialist" to research the "possibility" through diagnostic lap, that I STILL have active endometriosis 20+ years post hyst/both ovaries removed. They scoff at my suggestion that the disease remains active and is destroying my digestive system. They tell me "It's not possible" "You can't have endo post-hyst" "You've not taken HRT--You have no estrogen" "You're too old to still have the disease---It's more likely abdominal adhesions" "There's nothing we can do" BLAH BLAH BLAH. Please don't feel the need to dispute their statements to me. I am MORE THAN AWARE that they are full of shit and could care less if I die this slow, painful death.

While reading the article referenced by Vally, I identified with the woman 20+ years later with pain. Although I have FINALLY SURRENDERED to pain management and tried to make peace with my situation...I STILL QUESTION: Why will no doctor look and see---just "humor me" for Christ's sake. My history with this disease has always been an enigma, going against their theories of how it affects "most women". DAMN IT...I'm not most women. I'm a woman begging you for help!!!

I'm considering sending my records to one of the endocenters for evaluation. I don't know that I can afford treatment through any one of their facilities due to my less than stellar health insurance. My final question is this: Will they review your case (for a fee) to determine if you're even a candidate for their expertise? I just need answers, though I no longer expect to get them.

~~Pup

P.S. Angeleyes - - - I'm so sorry that you aren't feeling any better. I'm not familiar with your eye condition, but I feel your angst. Can it be cured?
Vally- - -I'm disappointed to hear that your surgery did not go as well as you had hoped.

Ladies...I'm out of the loop, so to speak, trying to just SURVIVE this trial period of pain meds through Pain Management. Thus far, NO RELIEF of pain, just the added AGONY of side effects from meds, with Morphine being the current "trial". I have digressed to the days of my lying in the bathroom floor, waiting to vomit again or die- - -whichever comes first.

I AM SO SORRY FOR ALL OF YOUR SUFFERING from this God awful disease. I know, as does anyone who does the research and has lived it, that MOST of our suffering is not necessary. MOST of it could be lessened, if not eradicated entirely IF we had competent doctors.

Pup, I think you could really benefit from seeing a top specialist. Dr. Sinervo at CEC in Atlanta will do a free review of your records. I think they could really help you out, and I'm sure they wouldn't dismiss you! They get it, and I'm sure they've seen a lot of women in your exact situation.

Apple: I have his book on 100 Q&A about endo. Haven't read through it yet since I am suppose to be studying for my nursing boards. But, I plan on reading it after. I thought about purchasing the Googling book by Dr Redwine, and I will be getting a book by Dr. Cook soon! If you like Dr Redwine he is a frequent contributor on the FB support site EndoMetropolis (it is a closed group). Also I love his site endopaedia!

I am so grateful to Dr Redwine, he was willing to look at my surgery pics and found what is likely invasive endo on the bowel in them. This would explain all of my GI symptoms and why I really didn't get any relief from this last surgery despite a lot of endo being excised. If it weren't for him I would sitting here going "ok, I guess it is IBS then. Ok give me more meds"...

Pup: I totally agree with Kdeezy. I think with the right Dr you can be helped! Nancy the site owner of Nancy's nook and the person who wrote the piece I posted had a hyst and was in pain for years and years after. She eventually had surgery with Dr Redwine (who is now retired) and had relief after that surgery. It isn't hopeless!
The CEC and a couple other experts will do a free consult on your file. I am currently in the process of getting everything together to have to CEC review mine. I hope you are able to find something that helps!