endometriosis? page

[TigerLily]

I just found out -- completely by accident, in the course of getting an MRI of my hip -- that I have endometriosis.

I know absolutely nothing about this. WTF is it? Is it something akin to PCOS? Is it hormonally driven? My periods are and have always been like clockwork and are very easy and short-lasting. I was out of whack hormonally when I first became Primal, but I thought I'd rectified all that by now.

Does anybody here have endometriosis (or know someone who has healed it)? I don't even know what type of healthcare practitioner to see to fix this up via natural means.

Is this something that can be healed via nutrition and exercise? Would fasting benefit?

What happens if I just let it be, as is? (It's early stage at this point.) I'm not having symptoms whatsoever. Am I in store for big, big problems further on down the line?

I will have to, as Stabby says, read until my eyes bleed. But I'd also like some wisdom from the tribe.

[Goldstar]

You are lucky to have discovered it, many women have it and don't know it because doctors just don't want to do the tests or the tests don't show it very well and often women who know they have it found out as a result of a surgical procedure in which the endo is then obvious to see. My S-I-L found out she had it when she was having cysts removed.

I don't believe it is akin to PCOS as it is not the result of a hormonal imbalance. Instead it is uterine tissue cells that escaped outside your uterus and continue to grow just the same as the ones that line your uterus during your cycle. That is why it can be more painful during menstruation, the excess blood has no where to shed.

Often menopause will alleviate the problem, but during the reproductive years it needs to be managed. Actually, Wikipedia has a good page on all the basic info and options. I went to 2 gynos when I was concerned I might have endo. Turned out I had IBS, but what I discovered is that you can have it surgically fixed by a fertility specialist using scopes. They often treat women with endo because it can effect fertility so it's a part of their area of expertise. I believe they are called "reproductive endocrinologists". The other route is typically HRT to control the cycles and discourage further growth. Good luck!

http://en.wikipedia.org/wiki/Endometriosis#Diagnosis

Quick question...endo can end up in some odd places in the body. Did yours end up in the hip itself?

[zoebird]

one of the best 'treatments' for endo that my clients have run across is doing the bikram sequence of postures.

i don't think it's necessary to practice in the heat (though you can if you want), but the sequence seems to work with and without heat for endo, so you might want to try it. you can check the book out of a library. it's 27 postures.

[Strozyk]

I'm an old pro at this, sadly. Where to start... First, are you saying an MRI turned it up? That's odd. A diagnosis requires a laparoscopic surgery, although sometimes the symptoms are screamingly obvious. It's ultra common, like Goldstar says - tons of women have it and NEVER have any issues. On the other hand, it's the leading cause of infertility, so if that's a concern for you, you should pay attention. It's usually treated with birth control pills or other hormonal BC. If it's gnarly or if a woman is trying to boost her fertility, it's common to take a shot(s) of Depot Lupron to go into medical menopause. Excision surgery can be very effective, but the Wisdom of the Collective is that lots of surgeons don't do this well, and that it's worth finding a GOOD endo cutter. I've had two surgeries and am going for a third, and that's in 8 years.

A lot of women find TCM (trad Chinese medicine) helpful; I was one of them, until my endo reached epic proportions. If I had the money, though, I'd still be keeping up with acupuncture and Chinese herbs - it helped and didn't hurt. Some more progressive docs and naturopath types would probably recommend an anti-inflammatory diet, Coenzyme Q10 (it's correlated with a heart condition, I forget which one), losing weight or otherwise taking steps to reduce estrogen production, optimizing hormones generally, etc. For me, my endo impacts the way I stand and move, due to pain and adhesions, so for women like me, I am a HUGE proponent of pilates and a good pelvic pain oriented physical therapist (they do exist!).

Endo appears to have a genetic component. Mom, daughter, so on. There's also a growing concern about environmental causes.

Endo is highly correlated with autoimmune disorders. Its cause is still unknown. It can occur anywhere in the body, but outlying endo tissue is rare - it usually just mucks up your pelvic floor, bladder, fallopian tubes, etc. It occasionally shows up in the bowel. It causes scar tissue and inflammation and that causes pain. It is microscopic, and the pain level is NOT necessarily tied to how much endo is visible under a microscope. But remember: some women have lots of endo lesions and no pain and NO problems at all. Some women don't find that it gets worse. Some do. Some of us have it as a full blown chronic pain condition (raises hand with a scowl on her face).

There is still a LOT of old school (mis)information about endo kicking around the conventional medical community. Read up so you know if your doc is going to be useless, or so you can ask for the right referrals. For example, lots of docs still see this as fixable with a hysterectomy (that would be for severe cases). However, that's a correlative thing - it might help, but a speck of ovarian tissue will keep the hormones flowing and feeding any missed endo lesions. Cutting out your uterus and/or ovaries is not necessarily a cure all.

Here's a big organization - they have a good book. The Endometriosis Association Google the Witsendo listserv - that's a good one.

[TigerLily]

Thanks for all the info, ladies.

So, in the course of imaging my R hip, they got a real good look at my uterus and ovaries. There's a whole lot of endometrial fluid backed up in my uterus, and apparently it shouldn't be there. There is also a solitary small cyst in my R ovary, but that's pretty common and not a cause for concern, from what I understand.

I DO have an autoimmune disease (lupus) -- so that's interesting.

No, I ain't doing any kind of hormone treatment and definitely no one is going to cut on me. I'm much more inclined to go the natural route. I looked into fasting, as I'm a big proponent of the body's ability to heal itself once the botheration of digestion is out of the picture, and I'm not at all surprised to see that it responds beautifully. I will also check into the things you all have mentioned; I'm down with it all. I don't want to get pregnant and I am 42, so I don't care about the fertility aspect. My main concern was that this could perhaps be a precursor to uterine cancer, or something like that. Thanks and Namaste.

P.S. And I'm such a dork and so full of crap that I just have to laugh at myself. Ever since this morning, my perfectly symptomless uterus has been aching and feeling full and congested all day long. I dork.

[Momto3]

Tiger lily, how has the treatment of endo been going? I was diagnosed with level 1 back in 1996. I did Danazol for 6 months...wish I knew then what I know now. After gaining weight, acne, no periods I was diagnosed with PCOS. Thankfully, I 've been primal for almost two years and I just had my hormones checked and everything is normal. Yeah! But there is pain returning....like the pain from endo.... I've been looking into today's treatments and I really don't want those drugs! I am almost to my goal weight....
I just sent an email to the Dr. to see what the first step would be. I'm done having kids. I am feeling so done with my reproductive organs... I almost lean towards a hysterectomy....but that seems drastic for a 36.5 year old.

[jojohaligo]

. I went to 2 gynos when I was concerned I might have endo. Turned out I had IBS,...

Wow, you are the first person I have come across who has had the same experience!

I had this chronic low back pain, regular but heavy menstruation. Tests, tests and more tests, and then a laparoscopy (sp?) just to diagnose. Dr. said yup, there is a slight reddening behind the uterus...his diagnosis...endometriosis. Prescribed a drug that stops menstruation and was on it for 6 months. None of that helped. Finally saw someone who suggested that I had IBS and should do an elimination diet. Guess what? Not eating wheat completely alleviated my pain in about 6 weeks. So endometriosis? I doubt that was the issue at all. Soon it won't matter because I am now 50 so hopefully I will be free from Tom within a few years.

I don't know if that helps the original poster, but I am glad to hear your outcome was similar. Thanks for that.

J.

[jojohaligo]

I almost lean towards a hysterectomy....but that seems drastic for a 36.5 year old.

If you can avoid a hysterectomy... it is my understanding that often (I don't know how often - so it is rumor and unsubstantiated) years after a hysterectomy that the bladder begins to fall into the space where the uterus used to be. And then a further surgery is required to support the bladder.

[kitimandiri]

If you can avoid a hysterectomy... it is my understanding that often (I don't know how often - so it is rumor and unsubstantiated) years after a hysterectomy that the bladder begins to fall into the space where the uterus used to be. And then a further surgery is required to support the bladder.

I subbed to respond to this, as it is certainly true in some cases. My mother actually just underwent surgery two weeks ago to have a bladder-sling created to support her bladder. She had a hysterectomy due to fibroids about 8 years ago, and started have occasions of incontinence in her early 50s. If you can avoid having bits removed it's probably a good idea. =)

[Catherine]

oh man i really hope that's not common! I had a hysterectomy almost 4 yrs ago & quit eating grains 2 yrs ago. I have never felt better in my life! i hope i don't end up w/ bladder issues!

when i first considered the hysterectomy i was totally against it for many reasons, the "void" being one of them. But then another year of misery went by and the "void" wasn't even a consideration anymore. I had no life. I was a slave to a constantly hemorrhaging useless body part. Oh well, i better live it up before i have to get a bladder sling! jesus.