an overly lengthy update on my endometriosis

In response to lw's comment on my post regarding my endometriosis woes, I'd like to post a pointer to a great resource, as well as update you my own health.

where you can find support:

Anyone reading this who is searching for answers about endometriosis, please check out www.curetogether.com. You'll find all kinds of published material about many chronic illnesses, including endometriosis, and get first hand information about the types of treatments that are available and ideas about what's worked for people and what hasn't.

what I have/will be doing to treat myself:

As for me, I've come out of my initial depression about having a condition that causes me chronic pain. I still get down, but I don't feel now like I'll be a slave to endometriosis for the rest of my life. But like any illness, getting on with life requires a huge amount of initiative and positive thinking, and they're not always in abundance. In my search for an answer about managing my own symptoms I have decided on or received the following:

TCM (Traditional Chinese Medicine) - I am receiving at least one treatment a week which includes acupuncture, acupressure massage, and moxibustion. For the benefit of those of you who have no idea how treatment like this goes, I'll explain:
The practitioner lays me on a table and inserts needles (with very little pain) into various points on my body including my head and face (crown, brow, temples), arms (near elbows and wrists), legs (above knee, below knee, inside of shin), and one in my belly just below the navel. She is progressing the treatment, however, as my healing from surgery progresses. So, for instance, last week she inserted a needle into a point nearer the right end of my scar which made me jump with the pain. This, however, was the effect she wanted and she removed it instead of leaving it, explaining that the idea is to stimulate endorphins and the endocrine system balance around my ovaries. After she places the needles, she leaves me to relax with a gentle heating element over my exposed belly, which is moxibustion. I basically take a nap, and then I get a rather long acupressure massage which is vigorous and thorough, releasing pent up energy mostly along my spine, and introducing bloodflow back into the area. The whole point about the whole procedure seems basically to move blood into affected areas, effectively oxygenating my organs, thus maintaining circulation so that chemicals can move properly through my system instead of building up. An overabundance of oestrogen is directly related to the presence of endometriosis.
I have to say I don't know what it's doing for the insides that I can't see so cant report on how my endometriosis is responding, it's doing wonders for me otherwise. I feel fab, and maybe that's enough.

Yoga - I will be starting regular yoga classes this week now that my recovery period is over and I am considered to be physically healed. Yoga is also good for circulating hemoglobin throughout the body to help maintain chemical balance. It will also be good for my state of mind, as well as my muscular strength. I feel strongly that I need it.

General Exercise - I think this is the one thing I'm probably guilty of not doing enough of now. In my pre-endometriosis days I was incredibly active. I walked everywhere, I ran at least ten miles a week, cycled when I could, swam, hiked, snowboarded, etc. I porbably had endometriosis at the time, but would never have known it. I rarely do any of it anymore and that's got to change because it's obviously a problem for me. Again, one of the most definite ways of managing your symptoms of endometriosis that makes the most sense to me is to take regular, and sometimes vigorous, exercise because it's all about moving your blood so that concentrations of chemicals that can do your condition harm don't collect where they shouldn't. Oxygenating your system by building your haemoglobin count and the strength of your circulatory system seems like the easiest thing you can do abve all else to minimise your symptoms. I am trying to figure out the best way to push myself into getting more exercise. The environment I have moved to since emmigrating to Ireland has not been as conducive to taking advantage of the great outdoors as it was at home in Portland, Oregon. So I have to discover what will get me out there. Dance classes? Gym membership? A new bike? It all sounds like money, one way or another, so that's probably why I drag my feet.

Diet - Soya is a no-no, from what I can gather. I have begun steering away from soya-based foods (of which there is so much on the market... it's in nearly EVERYTHING) or foods that include soya by-products. It's emerging that soya was never really meant to be eaten by us in the quantities that it is, and that now vast swathes of the population are feeling the backlash of an industry that has made a fortune out of making food products out of food waste and byproduct that was never before considered safe or desireable for human consumption. If you have serious period pains, I would highly recommend that you have a look at your soya intake and think about cutting it back because soya mimics oestrogen, which is a main culprit in chronic pelvic problems. Studies have also found that high soya intake in males is decreasing their fertility due to an increased presence of oestrogen-like chemicals which mask testosterone. My diet overall has never been bad. I eat a lot of veggies, fruit, grains (quinoa is my favourite), and unprocessed meat. I don't really do fast food, and limit my take aways (Indian, occasionally Chinese), and I try not to eat a whole lot of refined cereals or sugars (although I don't always succeed). I think the key is to know what you're eating, so pre-prepped food is one to steer clear from. If you can diversify your diet (veg, fruit, pulses, legumes, proteins, grains) so that you're getting the broad range of vitamins and minerals that you need, you should have little need for expensive suppliments. Be as wholesome as you can about what you eat, stay away from snacky foods (crisps, choco bars, refined sugar and flour) and DON'T GO TO McDONALDS, etc. I am certain that eating there regularly will only aggrivate not only endometriosis but ANY illness. There's a hell of a lot that nutrition can affect.

Healing gifts - I have been lucky enough to be surrounded by people who want to see me better, and who have offered me a chance to consider my healing from several different points of view. One gift my family gave me was a session with a healer who works with archangels to help clear your chakras. I was also in the lucky position to have a personal healing with some Tibetan monks who performed a ritual, symbolic clearing of the damaging energies around me and helped me to visualise them banished far away from me. Whether you believe in these sorts of things or not, I find it incredibly helpful to stay open to these experiences and interpret them in a way which makes sense to me. I don't know if I believe in angels, but maybe its just the word "angel" that is hard for me to reckon with, so I have had to think about the healer's offering to me in terms that I understand and appreciate. I'm not a Buddhist, but there is something about Buddhism that draws me more than any other organised practice, and so it was easy to recieve a healing from the monks. It did not, however, produce the results that I was expecting. Maybe I was hoping it would be like throwing a switch, but both of my healing experiences have worked more slowly and more deeply than I expected. What came up for me was not always directly related to my physical worries, and I was reminded again that what ails our physical bodies are usually manifestations of our psychic power over our whole physical selves; our pasts, our memories, our lessons, and our paths all contribute to our well being. So while it seems like misdirection if you look at it from a mere western medical point of view, pursuing meditative healing or therapy as a suppliment isn't a bad choice. The power of the mind is endless and finding out you have a chronic problem can put a serious dent in your psyche and drag you down, turning you into a sick person when you really aren't. You'll find out, while attempting to hammer out the dent you can see made by the sickness, that there are many dents to be hammered out. You could choose this time of upheaveal to re-evaluate all of the dents in your psyche because what better time would there be? You wouldn't dream of doing it when everything's going your way, would you? You might not fix them all, I certainly haven't, but you can certainly make a start.

my experience and prognosis:

What I couldn't reconcile in the two months since my last surgery was how my endometriosis had advanced so dramatically in a period of 8 months, between one laparotomy to the next, and until last week I had been waiting to see my doctor for my post-surgical followup to finally find out what he really saw inside my abdomen.

I had been, incorrectly, under the impression that the surgery I had in July had to do directly with scarring due to advancing endometriosis, and that it had advanced in a radical way since last November when I had my first surgery to remove an endometriotic cyst on my left ovary. The cyst they had operated on in November had proved very diffcult to manipulate, and because I was losing blood at a rate faster than the rate at which they could finish the surgery, they opened my abdomen to get at it faster, leaving me with a long, c-section-type incision. The conclusion of that surgical procedure was that my left ovary would recover from the 8 cm cyst they had removed and we had hoped that all would be well. There was little to no mention about endometriosis, and no treatment for it was offered because it was considered treated.

Eight months later, last July, I underwent surgery again. It was again supposed to be minimal access and exploratory, and endometriosis was sited as the suspected culprit. We knew that my left ovary was in trouble of some sort, but ultrasound wasn't giving the problem away. After breaking down before entering the operating room, deeply afraid and certain that I would wake up again with a full laparotomy, I woke with c-section-type incision number two and went into deep grieving, thinking that every 8 months of my life was going to be punctuated by surgical intervention of this sort. Suddenly I was a woman with a chronic disease.

I want to mention now that I have read the laments of women with endometriosis far more advanced than my own (I suspect) and I cannot imagine the pain that they have to put up with. I personally deal with plenty of it on a weekly, if not daily basis and needless to say no matter how bearable the pain is most of the time, chronic pain works on an individual in really insidious ways. I find myself unwilling to do much sometimes. I find my libido diminished. I find I lose sight of myself, my reason for living, and my will far too often. It's a really difficult thing to explain to anyone without chronic pain and my case, as I've found out this last week, isn't even that severe.

It turns out that while I am unlucky enough to have endometriosis, mine has been thus far effectively treated. What caused me such grief in the end of last June and landed me subsequently in the OR in July was post-surgical scarring from my surgery in November. It seems that some people are prone to scar badly due to surgical procedure and I am one of those lucky people. So while there was endometriosis to burn off, there was mostly surgical scar tissue to correct. It makes one wonder if they should bother at all, if the correcting might only promote more scarring.

When they used the laprascope to look inside my abdomen what they found was a mass of scar tissue enveloping my left ovary, my left fallopian tube, the tube from my kidney to bladder, and a section of my bowel. It was all one big lump. So the procedure was upgraded to a full laparotomy to deal with the mass. Everything but bowel and urinary tract was cut away, and the doctor told me this week that there had been a very real danger about operating around the bowel. He did what he had to do to free the bowel as carefully as possible so as not to leave me with a colostomy bag for 3 months proceeded by another surgery to put everything right again after healing.

So this is one of the great dangers of treating everything so invasively. If I am one of those who scars so badly and easily, it is in everyone's interest that I don't get cut open again. Should any more trouble with endometriosis arise again my doc will endeavour to treat it chemically by tricking my body into menopause... while not a permanent state, not a state I want to experience in my thirties.

So because os this I am doing everything I can to mitigate the symptoms and minimise my need for surgical intervention. I do not, under any circumstances, wish to end up on the operating table again and I will, unquestionably, do everything I can to keep it from happening.

My best to you, lw, and anyone else reading this who might be afflicted with the same crappiness. Just know that there are a lot of women out there with this problem and what really needs to happen is an acknowledgement in western medicine that endometriosis, or any other physical problem that causes chronic pain, is worthy of research, the sufferers are worthy of respect and it really, truly, can be debilitating for those who suffer it in both their bodies and their spirits.