Also, Docs are recommending Lupron - anyone here use it?

My LLMD feels that lyme can definitely cause endo. It did for me. I don't know anything about Lupron, as I had a hysterectomy at the ripe old age of 32.

I definitely believe that there is a connection - my 18 year old daughter also has endometriosis. She has congenital lyme.

I feel there is a connection.

I have had 4 surgeries for endo. I would not try Lupron. It can cause major side effects.

Good luck to you,

Jordan

I was Diagnosed with Fibro. and CFS in 1993 after a bad fall and in ? 1994 -95 I believe it was, I was told I was full of adhesions, after having ruptured cysts on my ovary and had to have a hyterectomy sp? (in my mid 30's.)

I have now found out my LLMD believes I've had lyme disease long before 1993 and that fall triggered the symptoms and I got reinfected again. Along with another trama after that reinfection, I wonder how I'm even alive.

I was never an ill person before this fall. When I look back, my whole body fell apart after this trama and have never been the same.
I've been treating for 3 years now and have improved but not out of the woods yet.

Could you tell us more about the 4 surgerys you had.

I've only had one surgery,well two if you count the laproscopy, (they said they couldn't see anything I was too full of adhesions, they would have to cut me open) but often wondered if this could have come back.

What symptoms have you had? and what have the Drs. done for you? Was it worth going through?

Thanks so much, if you wouldn't mind sharing if you would rather my email me directly my address is [email protected]
Thanks,
Swiss

I'm new to lyme, but not to endo! My doc thinks I've had lyme basically my whole life, and that it caused my endo, but she is not an llmd, and I don't know the answer to that.

I have used Lupron - in '99 (after multiple surgeries, and traditional and alternative treatments).

My experience was not good. I had debilitating side effects - but I did stick out the entire 6 months of treatment, hoping for relief. Some of these side effects are still with me, unfortunately.

Immediately following my last month of treatment, my symptoms resumed worse than ever. I was almost bedridden for 5 mos, until I had another lap, and finally a hysterectomy (I was 28).

If I were you, I would research this thoroughly and weigh the pros and cons carefully. I would also monitor my progress closely, and stop treatment immediately if I felt it necessary.

I was diagnosed with endometriosis after a late term misscariage in 1994..long before my lyme diagnosis. My advice would be not to touch Lupron with a 10 foot pole...bad stuff. There's a class action lawsuit going on right now.

Due to taking Lupron for so many years, I developed osteoporosis. What really helped me was acupuncture, herbs and taking hormones my LLMD perscribed. After a very
comprehensive 24 hour urine panel I found out most of my hormones are low.

I've had 4 laparosscopies just like Jordan and I have less pain now then I've had since being diagnosed.

If the doc trys to talk you into doing a hysterectomy find a new doc. Many people I know have done hysterectomies only to have pain return.

Take care and best of luck!

Feel free to email me if you need more information.

Endometriosis is a terrible disease. My last surgery was a year and almost 3 months ago. I was pain FREE for 8 months, but, the endo is back. My periods are TERRIBLE again.

I saw a specialist in Atlanta who did "excision" surgery, which means the disease was "cut out", and not lasered off. He did a laparoscopy.

My first surgery was supposed to be just diagnostic, but my GYN "lasered off" the disease he saw when he opened me up. He said i was covered in it.

Believe it or not, i became worse after that surgery. It left me with a ton of adhesions which caused a lot of pain.

You need to be very careful and find a endometriosis specialist if you decided to have surgery.

If you have surgery with a specialist who knows how to excise endo, you have an 80% chance to be pain free for at least two years.

Your odds are either increased or decreased depending on your health and how much disease you have, and also its location.

I had/have endometriosis on my intestines. You have to remove all of the disease to get some kind of pain relief. I also had endo on my bladder and i lost one ovary because it was too damaged to keep.

I wish i had some good advice to give you.

As someone else wrote, STAY AWAY FROM LUPRON. Bad drug. I never took it but i have heard too many stories.

You can e-mail me anytime if you have any questions, or just want to talk.

Good luck to you,

Jordan

I finally had a complete hysterectomy when I was 39. I also had fibroid tumors. My abdomen was a mess. I saw the "video" from my laparoscopy.

I'm doing fine now....I'm hoping I don't have adhesions all over the place...but who knows?

Is Lupron one of those immune-suppressing drugs?

Did you have your ovaries taken out? If so, how did you handle menopause at such an early age?

I guess im not that young anymore, since im 37, to worry about getting one.

However, even if you do get a hyst, your endo can still come back.

For instance, i have endo on my bladder and intestines. If the surgeon does not get ALL of it, i can still have problems in the future.

Thanks,

Jordan

I finally went back on the real stuff. I realize there's some risk, but I got really tired of the constant hot flashes.

and yes, I realize the endometriosis can come back. So far, so good over here!

Since then, my periods have been short and painless. Leading up to that, I had incresed pain.

I think I had the beginnings of, or perhaps more advanced than I realize..endo or something similar.

Many other countries use this root as a reproductive tonic.

I had no idea I had this stuff in there..I haven't been keeping up with the gyno since Lyme..
but did have a distended uterus and pain around menstruation..and don't anymore.

Maybe I'll have the gyno have a looksee.
I dread being pryed open with that tool, tho.
I'm not always such a good patient

Mo

Bio-identical progesterone is commercially available either as Prometrium which is oral or Prochieve 4 % cream which is applied in the vagina. I use Prochieve 4% on days 1, 3, 5, 7, 9, and 11 of the month. IMO, it is best to use progesterone cyclically , every month, to mimic a natural menstrual cycle, not continously as some use it.

Also, IMO oral HRT is not advisable. Too many changes to the hormones in the gut. Also been shown to raise CRP levels, a risk factor for heart disease. Transdermal HRT does not raise CRP (C Reactive Protein). CRP is an indication of inflammation. It is a general indicator of inflammation as is the Sed Rate (ESR).

Bio-identical HRT is the "real" stuff.

I plan to use HRT in this manner for the rest of my life.

I am not a doctor and this is not medical advice.

Janet

Lupron puts you in menopause and this is supposed to help endo. Quite frankly the only thing it did for me was make me wacky going though menopause and having all the symptoms. My doc would no give me hormones because she said they will make endo pain worse so basically I suffered until it Lupron wore off.

Docs feel when you have your cycle this causes endo to be a problem. Several times I've had constant pain no where near my cycle which makes me wonder.

I don't know if Lupron suppresses the immune system but it can cause major bone loss and osteoporosis.

I had two chocolate cysts removed back in '91. After the surgery the doctor told me I have/had quite a prolific case of endo and was surprised that I had experienced little or no pain from it. He did mention taking Lupron, but had said that its side effects would be worse than my symptoms and didn't prescribe it.

Another friend of mine the same kind of surgery that I had and her doctor put her on Provera. Bad stuff. She has gained weight like there's no tomorrow and she still has period problems.

I would look into a therapy along the lines of what Janet described.

When my periods stopped abruptly at age 44 the endo symptoms subsided. For a while...

Then they came back full force and I ended up having a complete hysterectomy.

I have chronic Lyme but didn't know it when I had the endo.

I had the same experience with endo (got progressively worse/more frequent over the years), and also tried Lupron (didn't work). I had a hyst, which ended the constant pain (still have some, cyclically, because I kept my ovaries, but it's mostly gone, if I take hormone suppressants).

Have you had a lap or surgery? After one of mine, my doc said my uterus had the mottled appearance of adenomyosis - endometrial tissue embedded within the muscle wall of the uterus (mine could not be lasered or excised, and I think that's usual for adenomyosis, but not sure). I think this is why I experienced the constant pain.

So now I'm on the estrogen shots. I think it's Delestrogren. I also take oral prometrium and estriol troches. The estriol is supposed to be protective against breast cancer.

Yes I've had 4 laparoscopies and endo pain has come back. My LLMD has put me on hormones...all of mine were low. Right now endo pain I have once in a while but over all is pretty good.

Many times I've been told to have a hysterectomy and like Jordan, I've had it on the bowel which a hysterectomy will not cure in my opinion.

The docs in Atlanta Jordan used are supposed to be among the top and it's unfortunate your endo has returned Jordan.

Previously I've had four surgeries...the last one in 2000. Sometimes I have pain but it's very manageable.

The secret for me has been herbs, acupuncutre and the hormones my LLMD put me on. All of my hormones were so low.

Jordan, sorry to hear about your last surgery being unsuccessful. The docs in Atlanta are supposed to be really good.

Anyway I swear by my hysterectomy I wish I'd done it sooner. I still have one ovary left so I don't need to take hormones. And I sure don't miss the cramping and bleeding at all!

Is there any way to combine my thread with this one so as to not double up?