This sounds fabulous! Doesn't it help to put your mind at ease to know that there ARE doctors out ther who take our disease very seriously and have devoted their practices to helping us?! It sounds like you've found an amazing clinic!

I agree it should have its own topic. I have stage 4 endo in my tissue. I am seeing a doc in Baltimore MD that uses a scope to shine a blue light on your tissue to find the endo.Although when you look at my pic with out the light it looks like i have stage 1 if any endo visible!
I am actually excited to find out that someone else has endo they call "invisible" because I thought I was the only one!!!

Here is a link so you can check out my doc I love him
http://www.mdmercy.com/womens/gynecologyCenter/endoscopy.html

luprongirl, I checked out your gyno's site, very professional and seems to really know what he's doing. I'm very happy for you! It makes a world of difference when you have a doctor with a lot of experience and thinks outside the box rather than just patting you on the head and sending you on your way until you are seen by them a year or so later.

Thank you for sharing, perhaps anyone in your state will see this and can finally get the care they deserve. My gyno ( Dr. Olive ) will be getting my support and I will refer him to everyone I can! Plus, he will be coming to my city to speak and I told him to tell me when and I will have the place packed with others like me and the trail of doctors I fired! :)

Stay Gold!

Thank you for this post. My Doc has also talked to me about the invisible endo. He has gone through pics of endo that normal Doc's would never recognize as endo buried in the tissue.... He sees it, I don't know how- he didn't mention the blue dye but he can see it and remove it.

Best Doc EVER - Annapolis MD, Center for Pelvic Pain. Dr. Marvel

great information here about the invisible endo !!

This thread makes me so sad that I only have state-based insurance! :(

Does anyone know of anyone in Indiana that does something similar? Is it common enough I could (essentially) ask for a blue-dye procedure (to really see what is in there), or is it more of a specialist-type thing?

Speaking of- SSWarning. Is Dr. Olive an endometriosis specialist; I mean, what is his official title (so I can look for something similar here)?

Thanks so much for sharing! :)

Actually Ombre, he's a fertility specialist. I've looked for an "endometriosis specialist" in the past and I only found one in Wisconsin. ( At least by using the internet and literally using "endometriosis specialist" in the search engine ) I ended up finding out that the 1 and a half to 2 two years I spent with him was a big waste of time as he was all about the money. ( I also have state funded insurance and during my last appointment with him he explained with a lot of disgust about how my HMO pays the smallest percentage!!) It's no wonder why he wouldn't perform ANYthing on me! Not even a pap test!!! My 1st appointment with him was full of promise and enthusiasm. I traveled 2 hours ONE way to see him!!!!

...Anyway, I got Dr Olive by way of referral. It wasn't easy though! I had to talk the nurse that I was dealing with into at least ASKING the doctor if there was a specialist!! MAN! The crap we go through just to get the attention we desperately need!!! So I suggest asking your current gyno and/or doctor and don't take "no" for an answer. You need to be extremely tenacious and when you come up dry, ask again and/or try a search on your own. And if you find someone that looks promising, pick up the phone and talk to someone that can answer your questions. Create a list of requirements, i.e., Does he/she excise the endo? Does he/she adopt a certain theory outside textbook, etc. It's fine to just talk with a nurse or even the receptionist as they should be "in the know". If they seem confused by your questions, that particular doctor/specialist isn't right for you and you could ask if THEY know of anyone that may meet your requirements. Keep it up until you find what you are looking for. And if you start to feel down from rejection, you come to Daily Strength and we will lift you back up again!!!
Is it possible that your state will allow you to see a doctor outside of Indiana? I've talked with someone here that had her son seen by a doctor @ Mayo clinic which isn't in Wisconsin. It would totally be worth a phone call and ask about approval for something like this.

Good Luck! And if you need anything, we are all here for you!!

Stay Gold!!

Oh! I forgot about telling you about Dr Olive! OOPS!

As I said, he's a fertility specialist BUT, he specializes in endo and is certified through Yale in reproductive endocrinology

The blue dye procedure was created by some sort of colleague of his and now Dr. Olive also does this procedure.

I've provided the link to Dr. Olive and the link to Dr. Lessey on my original post.

very interesting.
I have a hard time believing that 22 out 24 were pain free after a lap surgery, do you?

Honor,
I think that some women have some releif for a breif couple months after surgery until the pain comes back. That is how it has always worked for me. I had surgery jan '11 and was pain free until june '11(which was the longest time in the 4 years I have been sick that I felt good!). I feel like no matter what we do the pain will come back its just a matter of time!!

I'm new to this group and just wanted to share my experience with endo. I was diagnosed in 2005 through laparoscopy when a very small amount of endo was found on my right ovary. In 2009, after the birth of my 3rd child, I had a tubal ligation with filshie clips. In sept. 2010 I had the clips removed due to the discomfort they were causing me. During that surgery the dr. said he did not find any endo and without my permission, he cauterized my tubes in 3 places on each side. I found this out at my 2 wk check up. That's when things really started to go downhill. I was in pain all the time and just felt ill in general. I went from running 4 miles a day to barely being able to get off the couch. On April 1, 2011, I had a tubal reversal surgery, thinking this would fix all my problems. The surgery went fine. My tubes were reconnected and he removed some endo from the left side of my uterus. Surgery was at 10am and I was released at 3pm. By 7 that evening, I knew something was wrong. I was in so much pain I couldn't move the lower half of my body. My ears were ringing and my teeth were chattering so hard I thought they might crack. I was taken to the E.R. where my vitals were dropping rapidly. I had to be rushed in for a SECOND surgery b/c I was bleeding internally and very rapidly. I lost over 3.5 liters of blood where my left fallopian tube had come unattached from my uterus. The dr. said I was in acute DIC, which I still don't really know what that means. I do know that she saved my life. I had 4 blood transfusions and spent a few days in the hosptial. 2 weeks later I was diagnosed with a blood clot in my arm. (caused by the I.V.) Anyway, what I'm getting at now is the surgery that I thought would fix everything....didn't. I'm in awful pain almost every day of my life and having terrible digestion problems. I've had every test under the sun and just this last friday, my gyn referred me to a pain management specialist for injections into my abdomen. She says that my reproductive organs looked healthy during the surgery (she also said she didn't get a GREAT look, b/c her main concern was to stop the bleeding.) She says now adhesions are probably the cause of my pain. I'm wondering if I have "invisible endo". When I ovulate, it's like I'm sick. My lymph nodes swell, the pain is crippling, and even my throat swells and turns red. Does anyone else experience this? My mother thinks I need a TAH, but I'm just not ready to do that at 31 yrs old. I don't know what to do anymore...any input would be appreciated.

Omg Sarsax I am sorry to hear this is happening to you. I would research endometriosis specialists in your area... If you care close to the DC, VA, MD area I know of 2 great docs you could go to. Let me know if there is anything I can help you with..

Stay strong
Luprongirl

Thank you. I am actually in KC, MO and do not know of ANY endo specialists in the area. One of the reasons I had the reversal was to hopefully have another baby a little later down the road. I'm thinking maybe we should try sooner rather than later! Pregnancy does make the pain go away and when I give birth it generally takes a couple months at least for the pain to come back. Do any of you have thin, black stools? I have been alternating with diarrhea and semi-constipation for MONTHS now and my stools are either BLACK, or an orangish color. I've had a small bowel series and a colonoscopy that came back normal. If there was endo in my bowel, would the colonoscopy have seen it? I'm also going to call my gp to do the fecal sample test to make sure it's not blood I'm seeing in my stool. I also have a patch to the right of my belly button that actually swells up and is tender to the touch. My scans are all NORMAL though! I did have a 4cm x4cm cyst on my right ovary a couple weeks ago that has shrunk to 2cm, so they are not concerned about it. Surely a tiny 2cm cyst is not causing me all this agony!??? (also, it's fluid filled, not solid.) Thank you for your reply! It's nice to hear from other people who suffer from the same problems.