Can you can endo tissue in the spine? How about the breasts and the brain?

Who thinks they have endo tissue that is in spots the doctor won't acknowledge? Where you dx'd with fibromyalgia as a result?

Do you feel little bumps under the skin all over the body, just like in the breast tissue?

I have been doing searches and seen alot here have had major gyno problems believed to be result of lyme and figure what better place to find the information?

Those with symptomatic endometriosis, what were you're symptoms in regard to type of pain, bowel function, bladder function, back pain, groin pain.

Endo is believed to travel in blood and lymph. Have you ever felt the fluid in your body was congested or thick and found out by testing it wasn't the blood?

Anything else that you think I would like to know.

My insides have been hurting for a long time and I believe I have endometriosis on top of all my problems. I have period problems since they started at 12 years of age.

Really appreciate it ladies.

Are you saying that lyme can cause endo? first I heard of that. I have interstitial cystits, bladder and bowel problems and somethig called PFD pelvic floor dysfunction--all my muscles are so tight with knots all the time I feel as if sopmething is going to fall out--heavy feeling and cramps and there is nothing left. no ovaries, no uterus only my cervix.

As far as the spine, I suppose it is possible--I did a case study when graduating ultrasound school for my term paper that was required. It took me 6 months of research--they have one case where endometiral tissue was found in the brain of a man so anything is possible

Cathy

The following article did catch my eye the other day.

This article was recently posted on a doctor's list I'm on, about the use of antibiotics for endometriosis.

".........After antimicrobial treatment, "significant reductions" occurred in
abnormal bleeding, mucopurulent cervicitis, uterine tenderness, and
histologic endometritis. Endometritis was reduced in all groups......."

Antimicrobial Therapy for Endometritis Appears Effective

NEW YORK (Reuters Health) Mar 26 - Results of a prospective study support the
antimicrobial treatment of subacute endometritis and indicate that prior
pelvic inflammatory disease (PID) as well as current cervical infection is a risk
factor for endometritis.

Dr. David A. Eschenbach from the University of Washington in Seattle and
colleagues analyzed endometrial biopsies from 207 women at risk for endometritis.
Thirty-seven (18%) had histologic evidence of the condition, the researchers
report in the February issue of the American Journal of Obstetrics and
Gynecology.

In this study, as in others, both Chlamydia trachomatis and Neisseria
gonorrhoeae were more common in women with (43% of 37) than without (25% of 170)
endometritis.

However, a "new finding," according to the team, is that histologic
endometritis was more common among women with prior PID, both in the group with (43%)
but also in those without (28%) cervical C. trachomatis or N. gonorrhoeae
infection. In women without prior PID, endometritis was present in 23% with and 12%
without current C. trachomatis or N. gonorrhoeae infection.

In the treatment trial, 153 of the women with histologic endometritis but
without clinical evidence of current PID received oral cefixime 400 mg,
azithromycin 1 g, and metronidazole 500 mg twice daily for 7 days

After antimicrobial treatment, "significant reductions" occurred in abnormal
bleeding, mucopurulent cervicitis, uterine tenderness, and histologic
endometritis. Endometritis was reduced in all groups.

Although the treatment results are "encouraging," the authors note that all
subjects received antimicrobial therapy. "It is possible," they conclude, "that
the histologic endometritis would clear after menses without antimicrobials."

Am J Obstet Gynecol 2004;190:305-313.

Reuters Health Information 2004. � 2004 Reuters Ltd.
Republication or redistribution of Reuters content, including by framing or
similar means, is expressly prohibited without the prior written consent of
Reuters. Reuters shall not be liable for any errors or delays in the content, or
for any actions taken in reliance thereon. Reuters and the Reuters sphere logo
are registered trademarks and trademarks of the Reuters group of companies
around the world.

I believe most of my pelvic problems are from endo, and have been dismissed by my doctor and after doing some research I am going to see a gyn, but have to wait a long time to get in.

I was reading that endo tissue travels in blood or lymph and can end up anywhere. When my period comes my eyes inflame and before i knew of lyme, wondered about white tissue that is beneath eye balls that is white and swells and thickens.

I also read that many women with auto immune problems get it and it is overlooked because many are diagnosed with fibromyalgia and the blame is placed on that. Like usual.

I keep feeling like I have something spread through my body and it burns and I keep thinking it like I have cancer and it spread everywhere. I also noticed that when I stopped the flagyl a few weeks later my stomach started to swell again and also evening primrose oil has helped alot and I didn't understand why, and I have cut down on that alot lately and am having more problems again.

I always have some kind of burning pain, but this feels like scar tissue, not the nerves burning like I get as well.

I was doing some more reserch for anyone interested. Endo tissue can grow in back. It's called sciatica endo,and it affects the back, groin, and leg/hip area, just like I have.

Also can get skin endo, growths under the skin, and can go to the lungs and brain.

I'll bet the bactera, travel in the stuff if it likes the lymph. I get a feeling like in my back on my head, and feels like it is bleeding like the others spots.

Despite being around forever, being a womens problem, of course doctors don't know much about it. The websites say that whole hystertomy unnecessary as there is no cure and this just adds to problems. Special diets are used to keep inflammation down. They can''t find everywhere that it has implanted itself.

What I learned reminds me of cancer,except this isn't cancer, but disables lives with the pain and most women with bad cases can't work and they say the longer you have it the worst the pain gets.

I had no idea that endo was like this and I am probably not the only one either.
Wouldn't surprise me if the lesions showing up on mri are endo's in women, but who could know.

Answering my own post again so assuming not a major issue for others.

What is the website you found with info on sciatic and spinal endo?

The website is
www.endo-resolved.com/index.html this is a really good site and gives info about diet and what endo can do. Much like lyme it can go for scar tissue like from surguries in abdomen etc.

I would cut and copy, but haven't figured that out yet.

The means of diagnosis is very invasive, using laproscopy, which can leave scarring which increases the endometriosis.

Then, once you have the diagnosis, you can treat with dangerous drugs, or more surgery! Yow! Not a route I want to take, especially with Lyme.

I did find some info that connects endometriosis to iodine deficiency and xenoestrogens.

Check the following. The first link has further links on the page that go into more detail.

Iodine Insufficiency

This article on breast cancer mentions endometriosis benefitting from iodine supplementation.
Breast Cancer
"As such the iodine could be classed as a natural anti-estrogen a sort of natural tamoxifen. Incidentally, during treatment for fibrocystic breast disease, it was noted that some women experienced a marked improvement in their endometriosis. "

Natural Progesterone and Endometriosis
This site has lots of info on the interactions of progesterone, thyroid hormones, iodine, and xenoestrogens (hormone mimics.)

These pages all give me a little more hope, as the possible treatments look safer than most conventional ones. My last vist with my doctor he already talked about testing me for iodine deficiency, as I have many of the symptoms.

I have read that endo tissue can be anywhere in the body.

I have had 4 surgeries for endometriosis. I had it on the outside of my intestines and on the outside of my bladder. I had tons of adhesions and both of my ovaries were stuck.
I ended up losing my right ovary because it was too damanged from a cyst.

The pain is in the bowel area is feeling very swollen and also i got knife like pains there.

My bladder killed me at times. I have since been diagnosed with interstitial cystitis.

If you have any questions at all please feel free to e-mail me.

Jordan

I suspected I had a iodine problem and started taking kelp. I gave myself an overactive thryoid from taking too much.

I am sure that I have had a underative thyroid for a long time, avioding wheat has helped the weight issue bigtime.
Thanks for the sites I will check them out.

Hi JB,

I have bad bowel pain, actually have had some for a long time, just worse the last year. Same thing, knife like pains, and swelling. Can be constipated for days because of the swelling. I know it's not my diet. I actually thing if I have this it started in the bowel. I have groin, leg and back pain. Very difficult to know what is going on as lyme mimics so much.

Did the surgeries help you? As riversinger said, lyme and surgery don't mix.

My aunt had bad endo, they took everything and said, "they couldn't believe that she had 3 kids", considered them miracle children. Uterus was stuck to bowel, and other organs.

Since I lost a lot of weight, I can feel little bumps under my skin everywhere, but especially in the abdomen. Cysts everywhere. That started in the breasts as a teen. I have one child, and wonder if the lyme just went right there after I had him, and went crazy.

The pain did it feel, fire like?. Like you have been burned and need to heal?

quote:

---

Originally posted by lymiecanuck:
I suspected I had a iodine problem and started taking kelp. I gave myself an overactive thryoid from taking too much.

---

I've never wanted to take iodine before, because it is not recommended for Hashimoto's Thyroid, which I have. But the iodine protocol is only done after carefully measuring whether or not you are deficient, and your thyroid is also carefully monitered while on iodine.

Doing that, they have had good luck with autoimmmune thyroid problems, and some people can stop taking thyroid hormone.

But I wouldn't recommend taking large quantities of kelp on your own.

Two yrs ago I began having severe pain in the sciatic nerve area. I was helped greatly by prolotherapy, but I still have some pain and can't do very much without aggravating it.

Now I'm having gall bladder problems and wonder if I have endometrial problems again/still? YUCK.

My IC problems are greatly improved since lengthy treatment for Lyme.

I was having terrible ovulation pain and my periods were unbearable. I had an ultrasound and they found a cyst and my CA-125 test was a little high. I wanted to know why i was in so much pain so i had surgery last April 03.

Ever since that surgery i have been having low grade fevers, terrible fatiuge and tons of pain. I developed a ton of adhesions from that surgery. I had two more surgeries in November (it was only supposed to be one but i had to have an emergency surgery for internal bleeding). By this time i was fed up and in so much pain and the fevers were not going away. The doctors told me my fevers were from the endo. I found one of the top specialist in the country to operate on me in Atlanta. The surgery was a major success but sad to say, i still have fevers and nasty fatigue.

So, i believe that the first surgery set something off in my body that brought out this lyme. In the past i had had sinus infections, costrocondritis in my early 20's and mono when i was 13. I went to the gym almost every day and did aerobics, weight training and pilates and was in fantastic shape. I am now 36.

My bowel symptoms were severe. I ended up going through a CT scan, sm bowel x-rays, sigmoidoscopy and a barium enema to see if there was something wrong with me GI related. Everything came back negative except i did have a shadow on my sigmoid colon (turns out to have been endo which was removed). My pain would be so bad that i could hardly even sit down. I didnt have a burning pain though. Mine was move like a stabbing, knife up tushy kinda pain. But all of this was endo related because after my surgery in February, the pain is GONE!

Sorry for the long post. But, if i do have lyme, i will agree that surgery and lyme do not work well together.

I really dont know what to think. I feel so terrible, my head is pounding for 12 days now and every fiber in my body aches with fatigue and low grade fevers. Im so miserable all i do is cry and wonder if im ever going to get better. And yes, i have a shrink and im taking Wellbutrin but im still miserable. I have had to cancel trips and we are supposed to go to NY for labor day weekend and i dont even know if i will be able to go there, especially if i start ABX treatement.

Good luck to you. Email me anytime.

I tried to do a search here on the connection, but the search feature is "ailing" right now. There was a recent discussion on this.

You may be able to find it by clicking on the page numbers at the bottom of this page.

I hope you are working on finding an LLMD!

This was when I was 23, I had terrible cramps, irregular periods,etc. from the time I started menstruating at age 13. It's only my opinion, but believe that there is a connection to Lyme disease.

I was only properly diagnosed with Lyme last year - but have most likely had it since I was 3 (sick with "mysterious" disease - red, swollen, painful knees, fever, round red rash, etc.)

Have had many, many physical problems all my life, was diagnosed with fibro, and depression, etc....

My daughter and son both have lyme, thanks to me not knowing what was wrong with me all these years.

As a result, my daughter has the same symptoms as I did with her menstrual cycle - endo symptoms (getting tests done, possibly laporoscopic surgery) she also has been diagnosed with Fibro, interstitial cystitis, has bladder problems...

All of which I believe is because of her Lyme.

As far as endo. spreading to other areas of your body - I think it can go anywhere it pleases. A few years ago, I felt like I had it in my hip joint - it felt like the same kind of pain. Sometimes now when I'm herxing that hip pain comes back.

Please keep us updated on how you are doing, and if you don't have a LLMD, you need to do this!

quote:

---

Originally posted by jbgoth:
Lymie,

I was having terrible ovulation pain and my periods were unbearable. I had an ultrasound and they found a cyst and my CA-125 test was a little high. I wanted to know why i was in so much pain so i had surgery last April 03.

Ever since that surgery i have been having low grade fevers, terrible fatiuge and tons of pain. I developed a ton of adhesions from that surgery. I had two more surgeries in November (it was only supposed to be one but i had to have an emergency surgery for internal bleeding). By this time i was fed up and in so much pain and the fevers were not going away. The doctors told me my fevers were from the endo. I found one of the top specialist in the country to operate on me in Atlanta. The surgery was a major success but sad to say, i still have fevers and nasty fatigue.

So, i believe that the first surgery set something off in my body that brought out this lyme. In the past i had had sinus infections, costrocondritis in my early 20's and mono when i was 13. I went to the gym almost every day and did aerobics, weight training and pilates and was in fantastic shape. I am now 36.

My bowel symptoms were severe. I ended up going through a CT scan, sm bowel x-rays, sigmoidoscopy and a barium enema to see if there was something wrong with me GI related. Everything came back negative except i did have a shadow on my sigmoid colon (turns out to have been endo which was removed). My pain would be so bad that i could hardly even sit down. I didnt have a burning pain though. Mine was move like a stabbing, knife up tushy kinda pain. But all of this was endo related because after my surgery in February, the pain is GONE!

Sorry for the long post. But, if i do have lyme, i will agree that surgery and lyme do not work well together.

I really dont know what to think. I feel so terrible, my head is pounding for 12 days now and every fiber in my body aches with fatigue and low grade fevers. Im so miserable all i do is cry and wonder if im ever going to get better. And yes, i have a shrink and im taking Wellbutrin but im still miserable. I have had to cancel trips and we are supposed to go to NY for labor day weekend and i dont even know if i will be able to go there, especially if i start ABX treatement.

Good luck to you. Email me anytime.

JB

---

It's almost eerie how simmilar your symptoms and illnesses are to mine, I also had mono at age 16 - I was very sick, it also attacked my liver and I developed hepatitis from the mono.

I've had so many GI tract tests as well, barium enema, cat scans... and they could never really find much.

Sorry you are having such a rough time. The stabbing in the "tussy" is occasional for me, but the swelling on the insides is pretty regular, especially if I am not careful what I eat.

The doc gave me slip for a barium enema and I didn't go. Polyps run in the family so I should, but was afraid because the inflamation gets so bad I am afraid they will hurt me.

Do you have white spots on the body? Is endo white?

You mentioned fevers. That is common with lyme and I have had a low grade fever almost everytime I check for a very long time. Even before crashing badly with lyme, my energy was limited, even though I did aerobics, I didn't have much stamina for a long day of constant activity and worked parttime.

The burning I get calms down at times when feeling better, but always comes back, and acts up. So hard to know what's up.

ArtnSoul, I live in Canada and communicate with LLMD over the phone. As we don't have one here where I live and doctors won't treat without a positive lyme test.

I did a search on endo and seen a lot of people here have had this problem. I could be wrong, but seems universal with lyme.

Originally, when I first came on site, I thought I had lyme from when I had bulleye almost 3 years ago. Now I realise I have had it since at least 16 was bitten by many ticks and fleas from cat I had for a month. And also beleive I have had it longer cause I played in the woods a lot as a kid, and sometimes think I may have been born with it. I have had health problems and chronic infections since birth. Eyes, ears, sinuses, tonsils, periods always messed up and for last 10 years have been getting it every 21 days and last 8 days and this is suspose to be common feature of endo.

Was considered lazy kid, but was just had no energy and was bummed out all the time.

But anways I am rambling.

My insides have calmed down, have been using senna tea, which is helping. My family physician told me to fast 2 days and then take "golytich"(sp), you know the stuff they use to clean your system out before the colonoscopy, like feedback on that one as never used it before.

JB< if you had your time back would you get your surgeries done? I know the bowel one you said helped, what about the others?

I'll email soon, but have to get off now.

ArtnSoul.....if Jordan's story sounds like yours, then mine does too....because mine is VERY similar to hers! We've already chatted by email.

I'll send you the link to my story.