I wanted to update you guys as to what has happened coz it looks like my lyme treatment is now PERMANENTLY on hold.

My endometriosis (pelvic pain, rupturing cysts, chronic vag yeast) symptoms just began overwhelming me this summer and so the first doc I saw here in the bay area was/is a GYN specialist for endo. He told me a few things from looking at my last surgery report- I have stage 4 endo (the worse possible) and I should have another surgery for it ASAP. But not by him.

He actually referred me out for surgery coz he said my endo was too much for him and that this other doc would be better. The bad news:

The "other doc" does not take any insurance!

Surprised? Not us lymies huh?

Thing is-endo is DIAGNOSABLE--I mean YOU CAN SEEEEEE the dang stuff during surgery. There is no disputing it. But it is a woman's disease and having pain in those parts is supposed to be a woman's duty or some crap like that....dont get me started....the endo doctor and medical scene is just as bad as the lyme, it truly is gals, you wouldnt believe it!

But the bad bad part is that SURGERY out of pocket is quite another story than office visits and orals. (it rivals IV out of pocket)

I have an appointment with this specialist GYN/surgeon---(the best in the country, and he trained with Dr. S and is now begining to treat lyme along with other chronic illnesses that hold hands with endo (CFS, Fibro---you know the song))---on wednesday and the surgery date will be the end of the month.

It will be a 3-5 hour long surgery and require a month of relative rest to recoop. If bowel resection is needed (sorry for those snacking right now) then it will be longer. Since bowel resection was done before...(now I really got you choking)it may be possible again.

The good news is that the endo community is very caring and together like some of the lyme communities. I may be able to stay close to the hospital with a woman who opens her house to those having this surgery--FOR FREEEEEEE!

HOPEFULLY after I spend my life savings on THIS surgery, I can begin to treat the lyme/babs/bart/HME and everything else under the sun.

I have had to push back my two lyme doc visits with Dr. H and Dr. J until further notice.

That is my new scoop from my new digs in northern crowdfornia.

Thought you should know. Hope to catch up with everyone soon. Sorry to post this in Medical- but it IS medical (endo and surgery and Lyme) and personal.

My heart goes out to you.

I have/had stage 4 endometriosis. My right ovary was so damaged by a cyst that it had to be removed.

For me, having surgery for endo is what made my dormant lyme disease become active.

I had TERRIBLE pain from the endo and adhesions.

I also had it on my intestines. My surgeon removed it and i did not need a resection.

There are only a handful of endometriosis specialists in the US.

I live in Miami and flew to Atlanta to have my surgery done. Make sure your surgeon does "excision" removal and not just lasering off the surface. I had a total of 4 surgeries because my doctor down here was not a specialist.

You are right, the online endometriosis community is wonderful. If you have any questions at all, please feel free to write.

I must tell you, that i had about 10 pain free months. However, the last 8 months, my periods have become very painful again. Im not as bad as i was before my last surgery, but its coming back. At least i dont have any adhesion pain.

Blessings,

Jordan

I am having excision surgery which,

to answer HIKER53 -

is why I have to pay out of network. I tried my HARDEST to stay in network and searched for weeks for a good doc and found the one I went to last week who said-yep-cant do that surgery, only these few guys can do it.

There are MANY unskilled Surgeons that can do a laporscopic surgery which just burns the surface of the disease and causes it to come back even worse sometimes. THere are not many who can actually excise the lesions and adhesions. It is much like the lyme scene as far as people having to fly to doctors to get the best care and pay out of pocket. It is sad and ridiculous and pathetic but true.

With endo it is even worse b/c it is almost exclusively a womans disease (there are documented men with endo) which makes it sit in the dark ages with advances and with insurance coverage. Most insurances say take out the parts---use them or lose them. The problem with that is that having a hysterectomy is NOT a cure and most continue to have endo for life. Just like with Lyme, The insurance has latched on to some crappy theories about endo treatment that are the least costly and said deal with it ladies, tuff luck for you.

As Jordan said only a few good docs are scattered across the country. Jordan, You probably know my surgeon, as he is the Famous Dr. C in the bay area--many fly to see him and have their surgery with him. Are you feeling better since excision? Endo wise? Lyme wise?

Lyme etc- Endo is another one of those diseases that can have non specific symptoms. But it is unlike fibro and CFS and Lyme b/c you can SEE it during surgery so there is a definite diagnosis available. Most women have pain, pelvic pain and bowel and bladder pain as their most usual symptoms. But it can vary greatly as it did for me. Here are some websites for you to check out if you want to know more:

http://www.endometriosisassn.org/
http://www.endocenter.org/

Also your local library or bookstore will have books on the disease that should be helpful.

Also stage 4 endo is like stage 4 lyme--it is the worst case. For me it means that I have endo lesions scattered on every organ in my lower abdominal cavity and that I have adhesions that have bound up other organs and pulled things in my abdomen out of place (like my bowels). Not a pretty picture book, is it?

best to all,
Trails

quote:

---

Originally posted by jbgoth:
.

For me, having surgery for endo is what made my dormant lyme disease become active.

---

Me too.

I'm really sorry you are going thru this. After my recent escapade with surgery, I REALLY feel for you!

Can you take abx NOW so that your Lyme doesn't come back triple-fold following the surgery?? I wish I had followed my surgery with abx. Maybe I wouldn't have gotten the infection. ARRGGH!

I hope you can maybe find another surgeon???? But I do understand that you need someone with expertise for your condition.

Every surgery I have had, 12, I have gotten worse but that is also BEFORE I knew I'd been misdx for 34 years with chronic lyme...now it makes sense.

Had a hysterectomy done, and my endo pain is still really bad. Nice not having periods anymore, but did not relieve any pain.

Glad you've been checking with your insurance company to see WHO is covered & not!

Right now i have terrible ovulation and period pain again. It is not as bad as before my last, 4th surgery. Probably because everything is not all stuck together.

After i had my first surgery i was MUCH worse. I was full of adhesions because the surgeon just lasered off the surface trying to "treat" me. I was FULL of adhesions from that sugery and in horrific pain. When i went into surgery, i didnt know i HAD endo, i just knew that i had a cyst that needed to be checked out.

I had endo everywhere, including my bladder and intestines, just like you, stage 4.

I guess you could say im getting on my feet again. There isint too much i can do about my endo, except, to have another surgery. But, there is no way my body can handle it now. Besides, my pain is not to the point of horrific, every day pain. Its just terrible ovulation/period pain.

Overall, im feeling better, but im now dealing with candida,food allergies and leaky gut from the ABX. However, i truly wonder, if i had candida BEFORE i took the ABX? Somehow, i feel, it all kinda goes together.

I know about Dr. C in California. Dr. R in Oregon is amazing. I saw Dr. A in Atlanta who has had major success. Dr. A was out of network for me, but i have a PPO, so i have a maxium out of pocket. After that, they pay for everything.

I am happy i had the surgery. I not happy about having to deal with all of this now.

Jordan

I coming back recovering from a move too, and am so sorry to see this post! Welcome to CA! What a welcome.

I'm glad you decided to see the guy you are, I hear good things about him. Even if it is expensive, everything else is more expensive in the long run.

Take care.

I hope it all goes smmmooooothly.
-s.

quote:

---

Originally posted by trails:
Hi everyone---I am sorta back now from having to move my heiny over here to CROWDED California from SPACIOUS New Mexico.

I wanted to update you guys as to what has happened coz it looks like my lyme treatment is now PERMANENTLY on hold.

My endometriosis (pelvic pain, rupturing cysts, chronic vag yeast) symptoms just began overwhelming me this summer and so the first doc I saw here in the bay area was/is a GYN specialist for endo. He told me a few things from looking at my last surgery report- I have stage 4 endo (the worse possible) and I should have another surgery for it ASAP. But not by him.

He actually referred me out for surgery coz he said my endo was too much for him and that this other doc would be better. The bad news:

The "other doc" does not take any insurance!

Surprised? Not us lymies huh?

Thing is-endo is DIAGNOSABLE--I mean YOU CAN SEEEEEE the dang stuff during surgery. There is no disputing it. But it is a woman's disease and having pain in those parts is supposed to be a woman's duty or some crap like that....dont get me started....the endo doctor and medical scene is just as bad as the lyme, it truly is gals, you wouldnt believe it!

But the bad bad part is that SURGERY out of pocket is quite another story than office visits and orals. (it rivals IV out of pocket)

I have an appointment with this specialist GYN/surgeon---(the best in the country, and he trained with Dr. S and is now begining to treat lyme along with other chronic illnesses that hold hands with endo (CFS, Fibro---you know the song))---on wednesday and the surgery date will be the end of the month.

It will be a 3-5 hour long surgery and require a month of relative rest to recoop. If bowel resection is needed (sorry for those snacking right now) then it will be longer. Since bowel resection was done before...(now I really got you choking)it may be possible again.

The good news is that the endo community is very caring and together like some of the lyme communities. I may be able to stay close to the hospital with a woman who opens her house to those having this surgery--FOR FREEEEEEE!

HOPEFULLY after I spend my life savings on THIS surgery, I can begin to treat the lyme/babs/bart/HME and everything else under the sun.

I have had to push back my two lyme doc visits with Dr. H and Dr. J until further notice.

That is my new scoop from my new digs in northern crowdfornia.

Thought you should know. Hope to catch up with everyone soon. Sorry to post this in Medical- but it IS medical (endo and surgery and Lyme) and personal.

Hope everyone's doing okay around here,
Trails

---

I've been having many problems but b/c my ultrasounds are clean (except for small ovarian cyst), I'm not getting much help. Dealing with this on top of lyme is scary and beyond frustrating. thanks for the links.

Surgery date is set for August 25th. The day after I fly back from the east coast to see my long lost family.

There is MUCH I need to discuss with folks but I am very tired now.

To answer a few-
Lymetoo----Glad to see you back in the saddle here! I was sorta not in my saddle when things got so rough for you, so while I am recovering I intend to go back and read what hell I missed in your life.

Also, I shouldnt be on ABX BEFORE major surgery as a resistant staff infection could KILL me (and you know that would be TOOOOO damn easy), but I will be going to 2 of the famous docs out here after I am all healed up in sept or oct and begin back on the babs treatment.

Also this doc has worked with dr. S and he is presenting a paper at the endo Assoc conference about lyme and endo. He is studying igenex testing on the emdo lesions and finding that the spirochetes are loving the endo to live in. hmmmmm....

Bettyg---I am so sorry to hear your story! Yours is one told oh so often and it is very tragic! Do you know about the support available to you thru different orgs? You may be able to find out things that might help you with your pain and even find a good surgeon who can go back and get the REAL stuff out for you! My heart is going out to you.

Hi river! Havent been over to sonama site in AGES maybe do that during recovery too? THe mold overtook you? You actaully had to move? crap! Sorry to hear it! Hope things are calming down.

Thanks earthgirl, Dr N was recommended too, but Dr C's work with Dr S is what made that decision for me. Soooooo glad to hear things are going okay with you!

Janet- that website is actually the doc who is doing the surgery--how ironic you put it here.....was that on purpose?

SunRa- my ultrasounds were normal except for repeated ovarian cysts that were not "simple." They were hemoragic or blood filled. They are actually endometriomas. That and fibroids were the only things ever out of the ordinary. Endo can ONLY be difinitively diagnosed by surgery--laproscopy.

Hiker- no offense, I know you mean well- just wanted to clear it up and let you and others see the similarities...coz there is a LOT to be learned by the overlap between these two diseases and the treatment (non)options we get. you know? And how are you---still herxing? still hiking?

Much more later!
Trails

I'm so sorry you're going through all this.

Welcome to our fair state and all of that!

I hope that your recuperation will be fast and you'll be glad you had the surgery done and feel much, much better. Please let us know how you are, 'k?