Hi Duck,

I was not even sure what it was so I googled it...this is what I have found:

What is Frozen Pelvis?

Frozen Pelvis is the most extensive form of advanced endometriosis, encompassing the most ultimate forms of deeply infiltrative endometriosis (DIE). This aggressive disease form is inclusive of all extreme endometriosis presentations plus unusual deep infiltrative attachments to outer limits of pelvic ligaments, nerves and muscle tissues. It could be partial or total frozen pelvis.
Deep fibrotic nodules and deeply infiltrative endometriosis replace pelvic soft tissues with high-density fibrosis. Pelvic organs become firmly fixed to pelvic bones, feeling frozen and immobile, comparable to the way ice feels. 

http://www.drseckin.com/frozen...vanced-endometriosis

They say that the only way to deal with it is surgery, usually laparoscopic. 

They say that you need an experienced team.

I am wondering (and I highly doubt this but you never know) if deep tissue massage could do anything? They say that it breaks up adhesions but it sounds like you are way past that...

I know of no other 'cure' for this sort of thing...endometriosis is sort of like adhesions, you cut and burn but if you are not careful, they can come back...make sure that you trust your surgeon and team and that you ask all of the questions before you make your decision.

Good luck

Sharon

Thanks Sharon.  I guess I was just wondering if it could be caused by bowel adhesions alone, since I have never had any true confirmation of endometriosis (due to them not wanting to do a diagnostic laparoscopy from the bowel surgeries!).  I have responded moderately to the endo-drugs, so Dr. thinks it's most likely endometriosis, or a combination of both.  I wish our pouchy-pelvises weren't so complicated, sigh....On top of it all I have recently been diagnosed with some kind of connective tissue disease attacking my lungs, skin and joints--apparently this is quite common and related to inflammatory bowel disease. When  it rains it pours! 

Hi Duck, 

Is the connective tissue disease Ehler's-Danlos but some remote chance? 

It seems to be more and more commonly diagnosed among people like us. There is some sort of link.

I have Ehler's-Danlos (a connective tissue disease implicated in a lack of collagen production resulting in overly lax joints, severe musculoskeletal pain, vascular fragility, delayed healing post-op...) , I was diagnosed in my 40's after years of unexplained complications. Various symptoms kept popping up along numerous post-op complications. 

There is no cure or treatment for it (that was the good news!) but there are various maintenance routines. I am on high doses of collagen, take B6 & B12, biotin as well as a lot of other supplements. I feel like a puppet with loose strings. 

The good news was that my body did not (up until very recently) build adhesions so surgery was less complicated than in a 'normal' poly-operated person'...

The frozen pelvis may be part of the connective tissue disease and not endometriosis. At one point they told me that I had it but there was never any visual confirmation. When they finally operated (I had salpingitis in the right tube and a fallen pouch) they found no evidence of it...

Have they done the MRI yet? They may give you more information.

Have you seen a chiropractor? Osteopath? Ethiopath? (I sort of have all 3 by now!) He may be able to improve your mobility (it may take some time and a few treatments)...certain exercises can help too especially yoga, pilates... 

For the connective tissue disease, they suggest weight or resistance training and not stretching...you need to reinforce the muscles and ligaments and not make them longer than they already are (sort of anti-intuitive for the pain management part but a fact)...the stronger that they are the better that they can support the joints.

I have found that the best place to exercise is in the water...I do at least 1.5-2hrs/day in the summer when I am back home where I have a pool...I regain a lot of mobility, especially in the sacroiliac/pelvic region. I am practically pain-free by the end of the summer (except for this summer when I slipped and fell and destroyed 2 solid months worth or hard work!).

In the winter I work with light weights, elastics, stairs etc...

Keep me posted on what is going on and let me know what they see in the MRI.

Sharon

Hi- just reading this post- I have been diagnosed with frozen pelvis but have no history of endo and cycle totally regular. I get desperate burning pain in my lower back at ovulation and also at period time. It gets so bad no pain medication over the counter will get rid of it. I don't want to go down the route of heavy pain medication. Wud love to talk to u if u can pm me? Xx

Hi,

I just read your response...there are a lot of different possibilities...have you had your kidneys checked? Are you drinking enough fluids? While still active I had ovarian cysts, sapingitis, kidney stones ( sort of got those under control with filtered water instead of mineral water, kicked up my intake and cut out soft drinks and other liquids other than homemade lemonade...it rebalaces the acid/alkali balance)....

Lots of possibilities including stenosis, misalignment and cramping.

PM me if you like...

Sharon