Monday, July 6, 2009

Little Chances - Endometriosis and Fertility

I wasn't supposed to get pregnant. My last checkup was with Dr. X, the balding Italian with the Magnum P.I. mustache and thick gold necklace lain like a bird's treasure in the thatch of his chest hair on full exposure between the good 7 or 8 un-buttons. My sweet Mr. Curry looked at me out of the corner of his eye as I hoisted my legs into the foot rests, like pocketing them in animal traps set in forest snap snap. Later he told me he was thinking there was no doubt why this guy got into gynacology, and it wasn't for the miracle of childbirth.

When I told the doctor I had 'the endometriosis' which is like ' the cancer ' or ' the AIDS ' but much harder to say, less well known/understood, and not deadly, he raised his crazy eyebrows in surprise. ' So you got pregnant after surgeries? ' Yes, three, the last two with a specialist we flew to see. ' So then you can get pregnant again! ' Well, sure. That's what I want to believe.

Originally, my first surgeon, Dr. Y, told me I had little if any chance of getting pregnant. ' Stage Four Endometriosis, multiple sites of lesions, multiple sites of adhesions, large endometrioma on left ovary ( this is a large cyst, filled with disease ) ' and basically an enormous traffic accident of a pelvis, filled with pain, scars, blood and disease. I imagined my husband's sperm trying to swim through all this, little sperm tail wiggling terrifically, trying to make it up my damaged fallopian tube. I cried. I thought we would adopt. I put the idea of a baby to the side, in a crib, in a locked room, where I couldn't hear him crying. But he was there.

My second surgeon would give no firm opinion, just enough of a sympathetic look to underscore my first doctor's opinion. Little Chance. I had researched for a year straight to find this doctor, an M.D. who specialized in women's pelvic disorders, most intensely in endometriosis and polycycstic ovarian syndrome, both of which commonly result in infertility. Different doctors will try to give you different reasons for infertility springing from these diseases, but the truth is there is no definitive answers, but as with most issues of the body, a cluster of cause/effect that goes on in a body which have various reasons and outcomes, depending on the person. This doctor, whom I'm happy to recommend, believes in the autoimmune cluster, and in addition to being a top-notch surgeon who has created a new way of lessening adhesions (internal scars that cling to organs, binding them, creating pain), he also recognizes the other central forces in this disease, nutritional deficency and lifestyle choices. Without getting too clinical, these choices dramatically alter the hormonal state of your body, creating a snowball effect that can trigger or worsen disease, especially a hormonally based one.

My research led me to find that the newest information coming out is leading towards believing Endometriosis is an auto-immune disease, which often is accompanied by other problems, of which I had many. Chronic and at times debilitating pain, IBS, hypothyroidism, migranes, muscle spasms, fatigue and swelling ebbed and flowed, came and went, dramatically complicated and diminishing my life for my entire 20's- a time when I was also trying as a single mother to raise Dakota. Meanwhile I was sleeping at the wheel during red lights and weeping in pain, locked in the shower. After I had Lola, the pain ratcheted up unbearable degrees, and I was sick and fucking tired of being told it was depression, or ' just life '. Is this YOUR life? I wanted to scream at the doctors. Of course, it wasn't, and it was ultimately up to me to change things.

I believe I was able to get pregnant largely because I did not listen to Doctor One, or Doctor Two, or even absorb the sympathy of Doctor Three. Instead, I went about researching and dedicating myself to healing. I read so many books and internet sites and phamplets I could- and can- spout information about nutritional healing with the best of them. My mother, a long time health fanatic, whole foods eater and the bringer of health during my childhood, gave me many important leads and tips. Over a period of two years, including many crying jags and setbacks and hopeless feelings relayed to Mr. Curry, I changed my diet. Changing what I ate every day was a major emotional upheaval. I felt I deserved to eat what I wanted because damnit, life is hard, and my life, I felt, in particular, had been terrifically hard as a child, and so yes, Mocha Frap. for breakfast, and yes! Fries and Coke for lunch! and yes! the tomato and white lettuce counts as a veggie. I was addicted to carbs and sugar. I had chronic, systemic yeast and vaginal yeast infections. I had IBS. I had painful agonizing periods. I had horrific back pain, unexplained. I had migranes. My feet and hands and face swelled. I had chronic UTI. My vision was worsening. My tongue puckered and hurt. My throat swelled.

Once, I drove through Starbucks Drivethrough, crying. I wanted a Frappacino. I wanted health. I wanted a life. I got the Frappacino, and drank it. But I never gave up. Eventually, with the help of some blood sugar balancing supplements and yeast cleanses, I got my sugar problem under control, and tackled the bread. I did gluten free off and on for long periods. I exercised daily. I did yoga. I meditated. I took a laundry list of supplements.

Laundry List of Supplements For Feminine Healing


Fish Oil
Garlic
Vitex (chasteberry)
Grapeseed Fruit Extract
B Complex
C
D
Bone Health Mix
Green Tea
Rhodiola
Amino Acids
Probiotics

I spent money we didn't have on these things. As it all began to work, a great fog lifted. My depression and anxiety began to ease. My eyesight cleared some. My head stopped hurting. My periods normalized completely. I lost weight. My hands and feet and face stopped being puffy all the time. My energy began to seep back into this body. My jaw stopped hurting. My IBS went away, just poof. The chest pain? Gone. The rapid heartbeats? Gone. The irritability? Mostly gone. As one by one these physical restraints dropped, I took steps back and forth, back and forth, like riding some giant wave. I started seeing an acupunctarist, who we couldn't afford either, who saw me for very, very cheap at her home. My diet was largely fresh fish and chicken, veggies of all and any kinds, fruits the same, nuts (almonds walnuts), peanut butter, goat milk and organic cow milk, water, green tea, hummus, black beans, ( oh avacado!), dark chocolate, coffee, Gluten Free waffles and pancakes and eggs. I cheated a lot, but I ate this enough that it changed my life. I took the supplements daily, daily, daily.

Then I got pregnant.

Years after they said I wouldn't.

And I will Again. You hear me, Universe? I WILL.

ps
anyone interested in endo., i'd be happy to email a list of the books and websites i use in recovery.
krista said...

sometimes i wonder what is really going on in my "area 51" as i like to call it. i've had some serious female issues off and on since my early 20s. you've raised the idea that perhaps i should look a little more into this.
ugh.

Lydia said...

Heavens. I do understand. My period was hell from the time it began at age 13 until it thankfully stopped completely by age 49. I had VD in college, a gift from my lawyer boyfriend, such a bad case I was hospitalized. "They" said then I'd have trouble getting pregnant, but I continued the pill for some years more. "Most likely" had a miscarriage in my first marriage - per the doctor I visited after bleeding for a month.
Another severe case of PID in my early 30's (those lifestyle issues you mentioned...).
I had debilitating PMS that basically destroyed my life from age 35-43. Doctor put me on hormone replacement that didn't help. By then I'd long since stopped birth control as I sensed I didn't need it.
Pain, lots of it. X-rays indicated large mass on right ovary. Surgery to remove ovary and surprise! there was endometriosis on my ureter that the surgeon had to carefully carve away. "They" said the endometriosis would return within 15 years ago. It's been 20 years and holding.
I've been thinking of the ways I've changed my life since that time and certainly my diet has greatly improved, although I stopped eating red meat in 1976, stopped drinking in 1985, stopped smoking in 1993. I really think that for me menopause has been the big cure in my life. I wish I felt this healthy back in my 30s, 40s when I worked. I am sure that my career path would have been entirely different, who knows what else...

Mwa said...

What a post!

I used to live on Coke and pasta, combined with all kinds of other crap. I had the worst periods, IBS, depression - you name it.

Now I'm eating quite a lot more healthy stuff (having had kids), and I do feel a lot better. I thought it was all the therapy. I really should find out more about this.

Thank you very much.

chelle said...

Wow. That is dedication. And if you have had that dedication before and want this now, you will achieve it.

Vodka Mom said...

wow. That was quite a tale. You are a determined and amazing woman.


I had to have a COMPLETE hysterectomy due to adenomyosis. But that's a LONG story.

Mandy said...

What an amazing story...

Thank you for sharing.

Ms. Moon said...

Isn't it funny how we want to be able to just go to a doctor and get a medication, a pill, whatever, to cure things? Oh. And sometimes it works.
But mostly, WE have to change which is the hardest thing there is.
Maggie, I don't know if you'll ever get pregnant again. I have no crystal ball, but I know if anyone has a chance, you do. And on top of that- you'll be healthier, you'll be happier, you'll be nurturing your own life force.

Lola said...

You WILL!

Poor diet is such a huge problem. Even if you eat junk your whole life and think you're just fine, once you hit your late thirties and then forties, your body will turn on you, especially women, if you don't make some dramatic changes. I found out the hard way, too.

Fix your diet, add the right supplements, some exercise, and the changes can be incredibly dramatic. Oh, and get enough sleep. That's the hardest one really.

hayley said...

Yes, you WILL Maggie. And god, I'm embarrassed complaining about my stupid back problems. But taking better care of yourself is the key, you are totally right. I made a smoothie this morning with green powder. Making a toast to you!

Sandi said...

I BElIEVE you CAN and you WILL!

Infertility Demons said...

I just found your blog and love it already! I, too, have stage 4 endo. I would love your list of books / supplements to heal. I have been trying to research such topics and it it totally overwhelming. Many of my symptoms are the same ones you had. My email is bd4life@comcast.net

Thanks!

Evangeline said...

The woman troubles. Yup. I actually just blogged a little about my own yesterday (not endo for me, different stuff). Last year the best OB/GYN in the city recommended total hysterectomy...I am 34 years old. I said "no".
I go through periods where I am vigilant about diet and supplements, but then always eventually fall off the wagon. I really admire your fortitude for sticking with it. (I am about to get back on that wagon again myself, and will check out the supplements on your list that I am unfamiliar with.)
The universe is listening...it just has to be.

Blicious said...

great post! love your blog. hope it all works out! :)

Barrie said...

You're certainly getting your own body on your side! Bravo!

copiaverborum said...

You've been through quite the process. So glad you were able to find something that worked, even though doctors couldn't. I suppose that's why it's called "practicing" medicine. Your diet sounds much like what mine during my marathon training.

~carpeviam

copiaverborum said...

Oh, and I didn't see a place to comment on Phil Collins, but I LOVE that guy! Easy Lover is easily one of my favorites. I'm still flummoxed about the chorus, deciding which is the melody and which is the harmony.

But, One More Night, Against All Odds, and You'll Be In My Heart, are stellar as well. He is the king of sad, meloncholy, and amazing songs that are just full of awesome.

~cv

michelle said...

I do believe you will.
It's so much about the food.
You cut out wheat (gluten) and your IBS resolved? Did anyone ever test you for celiac? Do your kids get bellyaches? Just a thought. Forgive me if I'm overstepping.

That one girl said...

I am all about the power of foods. I mean, REALLY you ARE what you eat and though you hear it all the time, it's true! My eyes watered reading the first few paragraphs, I'm still really sad and pissed you had to go through what you did recently. You WILL get prego again!!!!

Steph said...

You are one tough cookie.

Laura said...

It's amazing what our bodies are capable of when we take the time to learn them and take good care of them. You should be so proud of yourself... you are amazing.

Maggie May said...

Hi everyone, good morning, i'm here with my Starbucks Soy Doubleshot :) proving everyone has weaknesses. That, and Milk Duds.

I was tested for celiac at one point and it came back negative, so from there I assumed based on evidence that I have an intolerance, which has been proven as I go back and forth from no/little gluten to sometimes a lot, and then I pay for it.

The supplements on my list are ALL links. Click on them and the link will tell you about some of the healing uses for that supplement.

I reccomend Life Extension at lef.org for all supplements and for research. They are my Bible.

Lissa said...

I loved taking vitex! My obgyn doesn't have a clue about vitex, and I would desperately like to know if will help me get (and stay) pregnant, or if I shouldn't take it during pregnancy like the label says. I've read that you have to ween off during the first trimester because stopping suddenly can cause miscarriage.

Amber said...

I hear you on this..I am just embarking into the gluten free diet because Archer is sensistive to wheat, but I noticed that when I cheat, my feet swell and my belly bloats. My period this time (the first month on the diet) was lighter and less painful (last check I had stage 3 endo) I am trying to find more variety, but I feel so much better. Also, this past weekend I cheated the whole time and had a migraine everyday, my ulcer gave me pain, and I am bloated up.

I believe you, you will get pregnant again.

Also, when I was having fertility issues, I did acupuncture and I truly believe in that, so keep it up if you can.

Good luck, we're all here praying with you for a baby for your family.

Court said...

You will. I can feel it.

I just want to reach out and hug you so tight!

Starlene said...

I nearly lost my mother to multiple sclerosis, but like you, she said "no...I'm not listening to dr. 1,2, or 3...I'm doing my own thing." And she did. With no medication. And now she doesn't have it anymore. Modern medicine says curing ms is impossible. But she did. And you will get pregnant again, because you've decided to. I think you're awesome Maggie May.

Sarcastic Bastard said...

Thanks for sharing this, Maggie. I really struggle with depression, and I have a terrible diet (I don't like vegetables). I'm sure the poor diet really aggravates the depression. I was also a very skinny young adult, and now I am on the chubby side. I hate it and feel terrible about myself, but I don't have the energy to exercise. Maybe if I would eat better, it would help.

SB

Bee said...

I was really fascinated by this, Maggie. (Finally was able to open your blog, thanks be!)

I have a good friend who has just been diagnosed with combo collitis/IBS. She is MISERABLE with many of the symptoms that you describe. Her doctor just prescribes meds (which have their own backlash) and says that diet has nothing to do with it. I'm convinced that diet is EVERYTHING.

Bee said...

And good luck, my friend, with your quest to get pregnant again. xx

esther lee said...

There is so much that I want to say.

But for now, thank you.

Thank you for writing this and sharing it for all to see and learn and feel.

Thank you.

Laura Lee said...
This comment has been removed by the author.
a mouthy irish woman? ridiculous! said...

"HELL YES YOU ILL!!!!!!!!!!!!"
said she who had to give up her ovaries and uterus WAY before she wanted too.

yes.you.will.

Jeanne said...

As long as you have a uterus, ovaries, fallopian tubes and a willing partner, you still have the potential to get pregnant.

Go for it!

(I found a wheat-free, yeast-free millet bread that's really good and satisfies my craving for toast. Let me know if you're interested.)

Collin Kelley said...

Yes, you can and you will!

Bobbie Leigh said...

I was told I couldn't get pregnant- was scheduled for a hysterectomy, then became pregnant with Boo one week before surgery. Anything is possible, fuck Dr. Know It All.

Jason, as himself said...

Wow, I love hearing success stories like this with diet modifications.

Reinvent Dad said...

I so admire your "never give up" attitude. You do what so few others are willing to do. You take control of your own health, do research, and take action.

My wife, an ob/gyn says that if more people simply took better care of themselves (i.e. eating right and exercising) most of their ills would go away.

Good thoughts from me to you.

Jenn said...

I am in awe that you were able to transition into such a different lifestyle. You are going to be my inspiration for sure as I am strongly considering going down a similar path for health reasons as well. Not the same reasons but everyone has their own circumstances that cause them to shift to a new way of thinking right? It is so time to get myself healthy. Tired and fat are so not me. Thanks for the inspiring words!

adrienne said...

of course i knew it before i read this post, but i simply MUST say, you are an extraordinary woman, maggie may.

the medical industry and it's proponents are not in the business of cultivating health, i think especially women's health. trying to traverse the acceptable theorem of the allopathic world is beyond daunting.

take courage in the truth that you have found ariadne's thread, and continue to let it guide you.

many blessings

Woman in a Window said...

It all makes sense to me, what you put into the body makes the body, but in my lazy 2009 way I do nothing to fix it. Why is that?

You are sheer determination
and goddess ripe.

PurestGreen said...

Yes! Yes yes yes. I've got polycystic ovaries and since I've changed my diet to one heavy in raw foods I just know things are going to improve for me. Do me a big favour and read some more about wheatgrass, raw food and fertility. All doctors have ever wanted to do for me is put me on pills, which just makes me worse. But this is the first time I really feel hopeful. I'm hopeful for you, too. Well done.

Maggie Madison said...

Sorry to keep bringing this up, but you really need to publish a book! You live an amazing life and have amazing writing abilities. I would like a signed copy, por favor = )

Kate Hanke said...

Congratulations and best luck on getting pregnant again when you are ready!

Magpie said...

this is fascinating. i never knew that i had endo, until i started trying to get pregnant. the first infertility doc didn't think it was worth really investigating or treating, but the second one wanted to do a lap. he cleaned out stage II endo, and i got pregnant via IVF a couple of months later.

good luck.

koe whitton-williams said...

an amazing story of perseverance told with a whole lot of wit and serious jolts of reality. wow.

Dana's Brain said...

Thank you for sharing so much of your life.

I have a strong belief that you will get what you are after!!

Babe in Babeland said...

Wow. What a strong and beautiful woman you are!

I really enjoy your blog. Thanks for sharing everything. I'm going to follow you.

Heather said...

Thanks so much for stopping by...wondering or not! :)

I am so glad to hear that you were able to take charge of your healing. And that you had a baby too! Our health care system is not based on educated patients and that is something I am only learning as an adult. Being pregnant with our little guy forced me to get educated about birth, which led to lots of questions and more education. I'm a work in progress, but we are working towards being educated and in control of our health and not just placing all our trust in Drs.

Thanks again for stopping by!
Heather

Jennifer said...

You have quite a story -- and I will be thinking good pregnancy thoughts for you, too. Your body can do it, you can do it.

I also have to say that the first paragraph of this post is wonderful. I especially like the "thick gold necklace lain like a bird's treasure in the thatch of his chest hair."

Meghan Elaine said...

What a strong woman you are. I echo the others...you will!
Thank you for your encouragement on our blog :)

Miss Grace said...

I believe in you :)

Heidi said...

So much good information here and hope. Lots of hope.

Sugar is a tough habit to break. I force myself to take sugar breaks. I can have a little during the day and then nothing after dinner. That is the worst time for me and I always pay for it the next day with headaches and irritability. But, I can't stick with it for too long. So, it's a sugar break. Then back to sugar. Then another break...

Captain Dumbass said...

I should be drinking something from Starbucks right now, but the one right beside where I dropped off my car for service was closed. CLOSED!

I'm so glad I was born with boy parts.

starrlife said...

You are something else, in a very good way!

raining sheep said...

Just completely proves to me that doctors do not know everything! Sometimes one has to do the healing on one's own. And now there will be a most beautiful baby born....

...love Maegan said...

i started sobbing at ...and then I got pregnant. ...and still am. I have a very similar story. I think I've taken my health for granted and am slowly started taking care of myself again. I never really thought it could actually cure the endo/ibs/pain ...etc.etc.etc. ...although, my mom was a health nut too so it's possible I do know but I'm just still rebelling. Thank you for this. You are a great writer.

this wheel's on fire said...

Thank you so much for sharing this! I love how honest and open you are on this blog xoxoxo

Hey Harriet said...

Wow! That's an amazing story! I have no doubt that you will get pregnant again! :)

Not So Glamorous Housewife said...

You know my first OB was very similar to your Magnum PI....frightening. I kind of wonder if they should screen these guys a little better than they do.

phd in yogurtry said...

You are an amazing inspiration.

Shaista said...

Dear Maggie,
This post of yours feels like a key that is turning in me - but how did you know what combination of supplements to treat yourself with? How did you have the confidence to know this or that is better than the other? Trial and error? Lupus is such a web of individual mess, but then I'm sure all auto-immune illnesses are.
Anyway, shall I just jump in anywhere? I could work my way down your list :)
Fish oil sounds a good place to start. Can I ask your advice along the way if I get stuck? And I'll use the links you have included to study up xxxshaista

Starlene said...

I left an award for you over at my blog. Feel free to leave it where it is and not pass it on because that wasn't the point anyway. You just deserve some recognition and validation for everything you've been doing lately. : )

anymommy said...

You are one amazing, determined lady and I believe you will with all my heart.

Patois said...

YES. YOU WILL!

Zip n Tizzy said...

Fantastic.
All good choices. All hard but so beneficial.
Determination moves us through.

Emm said...

Oh wow. I guess there is hope fo rme yet. I need to read this post again and again.

Amy + Michael said...

I just stumbled on to your blog and I am glad I did. :) Like you, I have tried MANY things. I've gotten discouraged, given up and am now trying again with the diet changes. Today was a really, really hard day for me (just feeling like I will never get pregnant and being uber-jealous of everyone I know who is--or has been in the past), and reading your story helped give me some courage and some hope. I would love any info you can give on recipes. Did you cut out ALL carbs? I have been living on brown rice the past few days . . .
Anyway, thank you for brightening my day. And for lending me some of your spunky determination. :)

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