All posts tagged endometriosis

Blogging for Endometriosis 2013

I am a wife, dog mommy, fitness lover, health and wellness enthusiast, and I also suffer from the chronic illness endometriosis!

With a whole world of socially conscious and vibrantly vigilant endo sisters out there spreading the word through their posts, tweets, and blogs I’ve learned that March is Endometriosis Awareness month. I’ll be participating here with bloggers like A New Kind of Normal to share my endo story and will include fitness, diet, and wellness solutions that have worked for me. In the past year I’ve learned SO much about this illness and just experienced my first cycle almost pain-free! I can’t wait to share with you how I did it. I’ll be doing so on my author site. Read more here.

If you too want to participate, here’s an idea for topics by week:

Week of March 5th: Physical impact that endometriosis has had on your life

Week of March 12th: Mental impact that endo has had on your life.

Week of March 19th: Fertility issues (if any) related to endo

Week of March 26th: Things that you have found helpful with endo or that have allow you to cope in spite of illness

Cheers to a productive, powerful, and prolific Endo Awareness Month!

 

 

Fertility Journey – Part 5 (Endometriosis sucks!)

Picturing this will help me let go of fertility stress!

Picturing this will help me let go of fertility stress!

It’s been a little over a month since my laparoscopy.

The first hardest part of the surgery wasn’t the days after or the tiny little incision wounds (modern surgery is art), but the harsh “coming out” of anesthesia. For me, it was similar to how I imagine being thawed out after a thousand years frozen might feel. Jolting awake to pain and intense nausea were no fun at all, but the Cedars Sinai staff were incredible. A nurse stayed by my bed to regulate pain medication,  bring me water, and assure me that no, I wasn’t dying (even though it felt like I was).

The second hardest part of it all, however, was getting the confirmation that I indeed have severe endometriosis. While I was in my drug induced coma, Dr. Collins was nice enough to visit my mom in the Cedars waiting room to give her an update. She brought pictures of the black grey growths that polluted my uterus and infiltrated my right ovary.  The growths resembled “Little cigarette burns,” my mom said. Awesome, I basically have black lung in my womb. She also had pictures of the two cysts that were blocking my left tub. Contrary to previous lab results, BOTH tubes are healthy! (Finally SOME good news).

Though I was almost 100% sure that years of suffering and an elevated blood test made an endometriosis diagnosis likely, the truth still hurt. Would I have to take Lupron to conceive? How much worse or better were my chances of natural conception after surgery? Should I pursue invitro fertilization immediately? As usual, I was determined to find the answers, but wasn’t exactly prepared for what I uncovered. You can’t always get what you want, unfortunately. Finding out that my tubes are healthy is the only silver lining I’ve seen in a long time.

Next Steps

Both Dr. Collins and Dr. Chang informed me that my best course of action would be to try naturally for the next two months (January and February). According to Dr. Chang the surgery “optimized” my chances of conceiving without the help of reproductive science (imagine that, a baby growing inside me, not put there by Dr. Chang!). But, the window is small. Though no one knows exactly how fast endometeriosis grows back, it usually does. It’s re-growth would interfere with my uterus’ ability to provide the optimum environment for a fetus. If February isn’t our lucky month, then our first (and hopefully our last) cycle of IVF begins in March.

With that said, hubby and I have been getting busy. I’ve learned how to check my cervical position for signs of fertility (high and wet). I’ve learned how to read my mucous like I’m a gosh darn fortune-teller (you will live a long and prosperous life full of babies!). I’ve gone through more ovulation predictor kits than is probably necessary (testing three times a day so I don’t miss the precious and very telling lutenizing hormone surge). January’s cycle is almost over and I’m pretty sure I’m not pregnant (unfortunately), but here’s what I learned THIS month about the baby making process, endometriosis, and how to stay sane through it all.

1. Statistics DO improve with surgery.

IVF.com has an interesting article on the pregnancy success rates for women. Yet they’re only kind of encouraging.

“Pregnancy rates following surgery generally range between 35-40% for severe endometriosis to 55-65% with milder disease. Of those who become pregnant, 30 percent conceive within three months, 50 percent within six months, and 86 percent within fifteen months. There appears to be no difference in pregnancy rates with laparoscopy or laparotomy with laser or electrosurgical techniques. While long-term pregnancy rates may approach 65%, surgical studies that look at fecundity show monthly pregnancy rates as low as 3-6% per month following surgical treatment of this disease (versus 20% per month in fertile women).”

I say kind of encouraging because the last sentence of that quote is the one that disturbs me most. “3-6%” chance of getting pregnant in each cycle! I have a higher chance of developing breast cancer in my lifetime than I do getting prego each month. Ugh. And waaaaah!

2. Changing diet may improve long-term prognosis for endometriosis.

One study draws a hypothetical link between endometriosis, the environment, and genetically modified foods.

“Although the pathophysiology of endometriosis remains unclear, a growing body of evidence points to the implication of environmental toxicants. Over the last decade, an increase in the incidence of endometriosis has been reported and coincides with the introduction of genetically modified foods in our diet.”

You mean all that fake genetically modified soy-meat really could have been contributing to the problem? What about all that healthy whole wheat bread? Just as bad, according to Dr. Collins and the bestselling book Wheat Belly. Dr. Collins strongly encouraged me to cut out all wheat containing products [they cause inflammation], other genetically modified grains, and any low quality, highly processed foods. A follow-up to my blog A Week Without Wheat is coming soon! Eating healthy is hard work!

3. Treating your husband like a stallion on a stud farm is counter-productive.

So this one is probably a no brainer. Picture me standing in my bathrobe mid afternoon with an ovulation predictor strip in hand, shaking it wildly in hubby’s face, while he wraps up a business call (I forced him to work from home for the entire fertility window so he was easily accessible). Awkward and a little bit scary. There are some things that respond to pressure, but male anatomy and baby dancing aren’t among them.  Next month I’m bringing sexy back ;).

4. Patience is the most important virtue.

This one is difficult, especially when you have a small 60 day window in which to conceive naturally. But, alas, inner-peace and Buddha and zen and stress-free might as well all be rolled into one word – patience. When you’re patient, you’re relaxed. You’re okay that things don’t always happen on your schedule. They happen when they’re supposed to happen, on a bed or on a fertility doctor’s table. Patience and babies belong together, now and when mini the Brooker finally arrives.

5. Mindset matters.

One of my favorite quotes is: “The highest fences we need to climb, are those we have built within our minds.” In that case, I’ve got several fences being erected at any given time. There might even be a moat with alligators in it, swimming around, gobbling up my most positive thoughts.

A British study of over 200 women reports that those with the highest levels of stress hormones in their system conceived 12% less than those with lower levels. While it’s pretty hard not to stress a little when the clock is ticking, I’m making a pact with you now to just let go. We’re doing all we can. I’m nurturing my body with healthy food. I’m getting the blood flowing every day at The Dailey Method. Hubby is taking his Proxceed religiously. So starting now, I’m letting go of the stress, the pressure, the doubts, and the angst. I will picture my friend the Skin Owl’s recent campaign, where she’s releasing a bunch of balloons into the sky, anytime I grip that which I cannot control too tightly. I will remember my most happy place, the Lanikai Pill Box hike on Oahu (pictured above). Goodbye balloons! Hello most beautiful beach in the world!

What have you learned on your fertility journey? How have you replaced stress with patience? To let go? I’d love to hear from you!

 

Fertility Journey – Part 4 (My Alien Baby)

Because you want the world to know that you just left the fertility clinic!

What I like most about Dr. Chang is that she doesn’t waste any time. The day we arrived for our consultation she was counting egg follicles and taking blood.

Of the tests she ran I was most curious about the CA-125. I hoped the blood test would confirm whether or not my years of suffering from painful menstruation were due to endometriosis. The scary thing about this test is that  “CA” stands for Cancer Antigen. Putting me and Cancer in the same sentence is an unsettling and uncomfortable combination, but a necessary evil all the same. This test is primarily used to determine the likelihood that a woman might have any of the following cancers: ovarian, endometrial, peritoneal and fallopian tube. But it’s also used to pre-diagnose uterine fibroids, endometriosis, pelvic inflammatory disease and cirrhosis.

Is the CA-125 test accurate?

There are confusing aspects of the CA-125, according to the Mayo Clinic.

“A CA 125 test isn’t accurate enough to use for cancer screening in all women — especially premenopausal women — because many benign conditions can increase the CA 125 level. What’s more, CA 125 levels are normal in many women with early-stage ovarian cancer.”

Furthermore, when used to diagnose endometriosis some studies claim that the test seems to be most accurate in identifying women with severe endometriosis rather than those with less advanced forms. CA level ranges vary as well. Some medical professionals set the limit at 20ml, some 30, and some 35. This is interesting because my level was 34.

“We can almost assume,” Dr. Chang said when reading me the results, “That you have endometriosis because a 34, combined with your history of severely painful periods, can lead us to that conclusion.”

There was more. Not only did Dr. Chang nearly corroborate my hunch that years of suffering and elevated Cancer Antigens almost guaranteed that I had endometeriosis, a condition that can contribute to, if not cause infertility, but she also found something growing inside me. I had landed on planet subfertility with a thud and it appeared that I wouldn’t be visiting baby country any time soon, at least not until these issues were addressed and resolved.


Sonohysterography & That thing growing inside me

After reviewing the slides from my HSG, Dr. Chang noticed what might be a polyp or fibroid in my uterus. To be sure she decided that a Sonohysterography could help her get a better view. This would also help her determine whether or not we could proceed with egg stimulation and IVF.  Additionally, she planned to conduct an endometrial biopsy for two reasons, 1. to determine whether or not my endometrial lining was developed enough to support embryo implantation and 2. To stimulate new cell growth in the uterus which improves IVF success rates.

While I was interested in the sono results, I was, and still am, terrified of the endometrial biopsy. I waited for Dr. Chang and poked around the office for clues of what to expect. I saw a bevy of torture tools laid out (pictured here). As a result, I began praying that I indeed had a polyp. If so I’d need surgery instead and would be sparred the biopsy. Surgery meant I’d be asleep in dreamland when any slicing and dicing of my uterus occurred.

 

The Results

Not only is my tube blocked and it’s likely that I have endometriosis, but we did indeed confirm the presence of a rather large polyp, or my very own alien baby, growing inside me right where a fetus should be.

During the ultrasound I remarked, “It looks huge!”

At first Dr. Chang disagreed. “It’s not THAT big” she said, until capturing more angles of the weird looking growth, “Oh wait. Maybe you’re right. It is pretty big.”

She proceeded to ask if she could use the aforementioned images at an upcoming medical conference. The bad news is that my alien is acting as an Inter Uterine Device (IUD), another obstacle on the road of our fertility journey. The good news is that my uterus is a perfectly shaped specimen as if drawn by an artist. Dr. Chang was pretty impressed. There is nothing like a female anatomy compliment when you’re stirrup-ed in and half-naked with a wand up your cooch. I might start telling people that I’m a uterus model.

What next?

I was then  instructed to schedule a surgery with Dr. Collins to remove the pesky polyp. Dr. Chang also prescribed birth control pills. This seemed weird. Wasn’t I trying to HAVE a baby, not stop one before it started? I learned that birth control pills are used to prevent hyperstimulation of the ovaries during an IVF cycle. Also, according to Science Daily, birth control can help time egg retrieval.

Additionally, Dr. Chang said that I might be a good candidate for a two month cycle of Lupron which increases IVF success rates for women with endometriosis. She gave me a run down of the side affects and they didn’t sound good. Lupron would shut down my reproductive system sending me into a temporary menopausal state. A glimpse into menopause at 32 didn’t sound like an exciting way to spend the beginning of 2013.

I went home that night and read the numerous Lupron horror stories out there. Weight gain, acne, and anxiety to the point of needing a sedative, were listed by people who had used it for just a short amount of time. I could hardly imagine what longer term use could do. There had to be another way.

Endometriosis & Laparoscopy

I’ve been told by many doctors over the years that the only positive way to diagnose endometriosis is though laparoscopic surgery. So, after speaking with Dr. Chang about my polyp and the possibility of Lupron, a light went on. What if Dr. Collins could perform a laparoscopy while she was removing the polyp? I’d already be under anyway I surmised. And after years of suffering I wanted to know for sure.

Dr. Collins agreed she could use the surgery to further explore my abdomen and remove any adhesions. She cautioned, however, that Dr. Chang might still recommend Lupron depending on the severity and prevalence of the adhesions or endometriomas.

I then discussed my Dr. Collins conversation with Dr. Chang. She too liked the idea. In fact, she asked to assist Dr. Collins so that she could get a first hand look at the inner workings of my reproductive system. I would have two gorgeous and brilliant female doctors working together to help heal me. I felt and feel lucky, especially because my husband and I have insurance that will cover most of the costs of all of these procedures. I can’t imagine what we’d do otherwise. Save up for a laparoscopy? IVF? Pray for a miracle?

Surgery Countdown

As my surgery countdown begins (7 days!), my heart goes out to the women all over the world who suffer from painful periods every month, the kind that leave them vomiting and moaning in pain. Endometriosis can be a debilitating and life altering condition and I wish more funds were allocated to researching its causes and cures. My heart also goes out to the women who can’t afford fertility treatments, but desperately want children. When treatable medical conditions prevent one from realizing the dream of motherhood, insurance companies should do their part and pony up the funds.

Luckily my heart is gigantic (because of all the cardio) and so I have one more very large piece to give away… for my husband, family, and friends who have been amazing through all of this. I’d tear out the rest of my heart and let you eat it if you really wanted to, because without you I’d be a manic mess (without my heart I’d be even worse off, but you get my point). Thank you for being there with encouragement and kind words, for listening and loving me. Baby or no baby, pain or no pain, you make life worth living and then some :).