Verification

There are some parts of our bodies with a phenomenal amount of elasticity, if you think about it.  Our lungs, bladders and intestines, for example, can all stretch quite a bit in a short amount of time without repercussions.  But uteruses (uteri?) are not one of these organs.

Today was the hysterosalpingogram to make sure my Essure procedure took.  I had been warned that it would be painful before I went, so I took a Celebrex and Sam drove with me to Lebanon.  When we got there, I had to pee, but some diagnostic tests you are allowed to pee and some you are not, so I held it for half an hour until a receptionist was able to find out which it was.

My appointment was for 1:00, but the hospital staff had to get the x-ray room ready, so we didn’t get started until a little past 1:30.  I had to have a speculum so that the doctor could coat my cervix with Betadine and put a catheter in my uterus.  After everything was set up, the nurse called the radiologist to come down so we could start the actual test.

The doctor slowly injected dye into my uterus while the radiologist took photos.  The idea is that, if the Essure procedure worked, my Fallopian tubes would now be blocked with scar tissue and the dye would not be able to flow out from my uterus.  Of course, they have to push in enough dye to be sure, so the uterus swells a little during the test.

I’ve had some really awful menstrual cramps before–once I had to leave school halfway through first block.  Another time I threw up from them.  This was worse than any cramps I have had.  I can think of only two other times when I have experienced pain even close to this.  The tattoo on the top of my foot is one of those.  The other is so personal I will not write about it even in a “tell-all” type of blog like this.

I’ve been pierced 13 times; I have 3 tattoos; I have broken a finger, been bit by a cat and a 2.5′ monitor lizard, and had two surgeries.  I don’t generally think of myself as a wuss.  Today, I totally feel like a wuss.  I told Sam that if sex hurt that much, he would never get laid again.

After the test, the doctor said I looked really pale and asked if I was nauseous.  I told her no, just still very crampy.  I laid on the table for a few more minutes, then got up to use the bathroom.  Apparently, having my uterus filled with dye just sent my GI tract into a “oh, hell no” state.  I ended up having diarrhea and became extremely nauseous.  I have thrown up once in the last 16 years, only because of food poisoning, so for something to make me nauseous, it is extreme.  I managed to keep it down and felt much better once I got off the toilet.

Sam and I left the hospital and stopped at Panera for lunch.  They have a wonderful Mediterranean veggie sandwich that I get toasted and without onions or cheese.  I also had an enormous pecan roll that I felt like I deserved after that grueling experience.  Russty gets his blueberries after his meds, I get a pecan roll.  It’s only fair.

Edit (thanks Katie, I am a ditz today):  The procedure worked!  If it hadn’t, and I’d had to go back in three months for a second test, I would have been very, very sad.  Sam and I no longer have to worry about getting pregnant.  What a weight lifted from my shoulders.

Endometriosis Awareness Month

Since it is March, I feel obligated to post.  Good thing I have something to write about.

I started off my endometriosis awareness month by getting my IUD taken out.  I had stopped Lybrel almost two months ago, and the IUD was the next step.  No, I’m not trying to get pregnant.  I just want to get rid of the hormones.  It’s not healthy, and I don’t trust the FDA.  I am also curious if I am even really depressed.  I recently learned that birth control can cause depression, along with a myriad of other psychological symptoms.  I realized that, for the entire time I have been depressed, I have been on BC.

So I went to the doctor, and of course she and her nurse grilled me.  It made me a little uneasy to tell them my reasons for getting off of BC.  How do you tell your doctor that the drugs she prescribes are garbage?  I also told her about my abdominal pain, and she poked and prodded and finally said she’s not sure what it is.  Gave me a referral to consult with a surgeon.

I had heard that getting an IUD taken out is not painful compared to having one put in.  Well, I was knocked out when it was put in–I had it done during my surgery, three years ago.  So I didn’t really have anything to compare it to, but damn, it hurt.  After she left, I looked at it–it’s so tiny, and there wasn’t any tissue attached to it, so why did it hurt so much?  My body is so foreign at times.

I had to go grocery shopping afterwards, and that was not fun.  I was crampy all day, until I took a nap.  I woke up feeling better.  Then when I peed, there was blood, but I’m sure it was just from the trauma.

On another note, yellow is the endo awareness color.  Last night I realized, with frustration, that Sam and I do not own yellow clothing.  So I ordered these cute buttons from zazzle:  http://www.zazzle.com/fight_like_a_girl_endometriosis_16_5_button-145187249632068085

Modern Medicine

Sorry for my absence, but well… it’s Christmas!  Now that the year is over, I’m ready to get settled back into a routine.  Which will hopefully include posting every few days.

Tonight I’d like to cover the treatment options that modern medicine has to offer women with endo.  These include GnRH analogs, pain killers, birth control, surgery, hysterectomy, and pregnancy.  I personally find it sad and appalling that the last two are even considered treatment options, even though at one point I wanted a hyster.

GnRH (gonadotropin releasing hormone) analogs include drugs such as Buserelin, Goserelin, Leuprorelin, Naferelin, and Triptorelin.  The drug I was on, Lupron, is a brand name of Leuprorelin.  I was lucky in that I did not have many side effects.

GnRH analogs work by decreasing the production of estrogen by the body, which in theory “starves” the endometrial implants, as they are thought to be dependent on estrogen.  This also succeeds in putting the body into a menopausal state, complete with all of the menopausal symptoms.

Perhaps the most serious side effect of GnRH analogs is the bone loss.  Lupron’s website will have you believe that an average of only 3% bone loss occurs, according to a private study funded by Abbott Laboratories, the makers of Lupron.  In truth, Lupron causes closer to 48% bone loss on average.  Because of this, many health care professionals will only prescribe it for a 6 month period.  What good is 6 months compared to a lifetime of pain?

Pain killers, in the form of NSAIDs, analgesics, and opioids, are often prescribed to mask the pain.  For many women, this is the only thing that modern medicine can offer long term to help them.  These do not treat the disease, just one (or maybe two, in the case of NSAIDs) symptoms.

NSAID stands for non-steroidal anti-inflammatory drug, and includes drugs such as Ibuprofen, Naproxen, and Voltaren.  The problem many people have with painkillers (besides addiction), is that they wait too long to take them.  Painkillers should be taken when you first feel pain in order to block it.  The longer you wait, the less effective they are.  The big risks with pain killers are ulcers and gastrointestinal hemorrhaging.  For most people, this is not a problem when taken correctly.

Some women have even been instructed to begin taking NSAIDs before something painful is about to happen.  For many women, this equates to taking them a day before their period starts, and continuing through its duration.  For others, this means taking them an hour or two before sex.  So much for the element of surprise.

Birth control comes in many forms, and all of them purport to have beneficial effects for endometriosis sufferers.  These drugs work by increasing the level of progesterone, and decreasing the level of estrogen in the body, as would happen during pregnancy.  Because many women with endo have imbalanced levels of progesterone and estrogen, birth control has the effect of balancing (somewhat) these levels, and is thought to slow the growth of the lesions.

Some forms of birth control include Depo Provera shot, Nuvaring vaginal ring, Mirena IUD, Ortho Evra patch, Implanon implant, and numerous pills (Ortho Tricyclen, Lybrel, Seasonique, Yaz, Loestrin, etc).  All of these work essentially the same way, and have the same side effects.  They can cause blood clots, sometimes life threatening.  Since they effect hormones, they can also lead to mood swings and depression.

Surgery is the only definitive way for anyone to be diagnosed with endometriosis.  Usually it is through laparoscopy, but occasionally so much endometriosis is found that a laparotomy is needed to clean out the abdominal cavity.  Many doctors will try their best to excise or oblate any lesions they find, but most of them do not have the necessary skill, experience, or knowledge to get it all.  There are a few doctors who claim to have an 80% success rate in healing endo patients.  Most women end up having a recurrence of symptoms within the first year after surgery.

Sadly, hysterectomy is often suggested to women for whom doctors feel they can do nothing more to help.  Unfortunately for these women, up to 1/3rd of them will have a recurrence of symptoms.  Since endo is thought to stem from the reproductive system, usually occurs on the outside of the uterus, ovaries, and pouch of Douglas, and is “fed” by the ovaries, many doctors are at a loss when these symptoms reappear.  Hysterectomy results in early menopause and bone loss, so should not be undertaken lightly.

Pregnancy is recommended by some doctors as a treatment.  Women usually have a lessening of symptoms during pregnancy and breastfeeding, but once the child is weaned, the symptoms return.  It is appalling to me that any doctor would suggest a woman bring a life into the world just to lessen her symptoms for 2 years, especially if that woman never wanted children.

We are still in the dark ages with regards to understanding and treatment of this disease, but I hope that something definitive comes along soon.

Timeline of My Battle

For as long as I have had a period, it has not been normal.  I had cramps so bad with the first one that I threw up.  After that, I had no cramps for years, but always very irregular bleeding.  Once I bled for 5 weeks.  I also skipped months pretty frequently.  I went on Loestrin (birth control pills) to regulate my cycles, and when I came off of them, I started having horrible cramps again.

These cramps were not as bad as the first one, but I still needed post-surgical pain meds to combat them.  Even those barely took the edge off.  Most of the time, I had to lay in bed, on my stomach, with one knee up to my chest and the opposite hand pressed against my lower abdomen.  I think the combination of the heat and pressure helped.  I remember having to come home early one day in high school because I was bleeding so much that I was dizzy, and had awful pain.

I went back on BC, and these helped, but I still had to take heavy drugs for cramps.  When I was 17, I started getting IBS symptoms.  I was too embarrassed to say anything about them for years, so I didn’t actually see a GI doctor until I was 25.  He was pretty useless, and rude… the only thing he could tell me was that it wasn’t serious, because if it was, I wouldn’t have made it 8 years.

When I was 23 I started having dyspareunia–pain with sex.  Talk about a relationship killer.  I have the most wonderful husband in the world though, as he still married me and still tries every day to make me comfortable and happy.

At 25, after having dyspareunia for a year and a half, I decided to see a doctor about it.  My GP referred me to a gyno.  My gyno tried a few things–first she said to take 800 mg Advil an hour or two before sex.  That didn’t really work.  Then she put me on Lexapro 10 mg once a day.  I was really wary of this, as I had already been on Lexapro for depression and really didn’t want to go back on it, but I didn’t know what my options were.  This didn’t help either.  She suggested physical therapy, but I never went as I didn’t think whatever I had was really that serious.

February 7, 2008 is when I had my laparoscopy.  It started out being diagnostic and ended up trying to remove as much of the endo as possible.  We got to the surgery center at 8:30 and were back home by 12:30.  My surgery only lasted an hour, and I had to eat four crackers before I could leave–which took another hour.  My doctor told Sam that I had endometriosis, but that’s all I would really learn until my followup 3 weeks later.  I went home and slept.

The first day, I was so tired that I didn’t even care enough to take off my hospital bracelet until the 5th time I woke up.  I remember sitting on the toilet and pounding the wall so Sam would bring me scissors.  Things like that normally bother me a lot, and I have to get rid of them immediately.  I think the first day I was awake for a few hours at most.

The second day I still slept a lot, but I managed to stay awake for five hours.  I pretty much ate, played on the computer a little and went back to bed.  Sam was a wonderful nursemaid the whole time.  I kept the phone by my bed so that I could call him whenever I needed anything.  Being intubated makes it very hard to talk.

After the second day, my schedule started getting back to normal.  I tried to go back to work after about a week and a half, but ended up having to get Sam to take me home.  I had to stumble through a pharmacy after about a week for more pain meds–I didn’t think to ask what over the counter medicine I could take until I needed more.  The 100 ft. walk from the front door to the pharmacy counter at a Rite Aid seems like nothing, until every step makes you feel ill.

I became increasingly dizzy after the surgery, and no one could tell me why for a long time.  I think I went back to work full time after 3 weeks, but I still would get horribly light headed.  I would be sitting in my chair not moving, yet my head would be swimming uncontrollably.  Or I would walk around Target and get disoriented, not even remembering what I went there to get, and ultimately leave empty handed.

At my 3 week followup, my doctor explained a little more about the disease to me.  She said that birth control pills are thought to slow the growth of any endometrial implants, so I went on Lybrel.  I have no idea if it has worked, but I’m still on it.  I’m almost afraid to know how bad my endo is now, and the only way to find out is to have another surgery (which I can’t afford).

January 31, 2009 we moved to Vermont.  I started seeing new doctors, and my new gyno wanted to try Lupron.  All I had read about Lupron is that it is the only drug engineered specifically to treat endo.  It worked for about two weeks, then the pain returned.  Lucky for me, I had taken a 3 month shot, so I got to deal with hot flashes for another 10 weeks.

Gradually, I started having pain sporadically where my ovaries are, and not just during sex.  It didn’t happen every day at first.  When I decided to see a naturopath, it had gotten to every day, and some days all day.  Most days it would come and go, and it was never severe pain, but pain that lasts that long is still obnoxious and frustrating.

After the Lupron stopped working, my gyno referred me to a pain management specialist.  I call her my pain doctor.  First she tried Celebrex, then Topamax, then Neurontin.  They all did the same thing as Lupron.  After the Neurontin stopped working, she suggested Celebrex again, but taking two pills a couple hours before sex instead of daily.  As much as I hate doing this, it has worked so far.

About the time I started Topamax (December 2009), I also started the special diet.  Topamax is supposed to make you lose weight, and I have shed 46 lbs. since starting the diet.  I personally think it is more because of the diet than the drug.

A month ago I started going to a naturopath, and he has helped me more than anyone else.  I am now on 4 Ease Pearls in the morning plus 1 alpha lipoic acid/acetyl l-carnitine gel cap, and a tablespoon of calcium-magnesium-zinc-phosphorus-vitamin D3 powder mixed in water.  At night I take 4 Moon Pearls, 2 cod liver oil/butter oil caps, 1 vitamin C pill, 1 alpha lipoic acid/acetyl l-carnitine cap, Pristiq, Lybrel, 2 tablespoons of ground flax seeds, a teaspoon of apple cider vinegar, and the mineral powder.  I also have to take 4-5 tiny little lozenges that dissolve under my tongue once a day for 5 days (starting yesterday).

It seems like a lot of pills, but if it makes me feel better, I don’t mind.

A Day In the Life

Now that I’ve introduced myself, I’d like to go over a typical day for me.  I think it’s important for people to see just how much of my daily life this disease affects.  I’ll get to the more serious parts at a later date.

I usually wake up after at least 10 hours, still very groggy.  I’m not sure if it is the disease taking so much out of me, or adrenal hypofunction right now, but it really sucks to sleep so much of my life away.  I take a shower, and at the end of my shower I have to turn it on cold for hydrotherapy, as per my naturopath.  I can’t stand it on all the way cold, so I just turn the cold up all the way, and turn the hot down as far as I can stand.  It still makes it hard to breathe, and I have to stand in it for 30 seconds.

I feed the cats, feed the dog, and make myself breakfast.  I cannot have wheat, refined sugar, caffeine, red meat, dairy or eggs, so breakfast is a real challenge.  Lately I have found a cereal made with corn called Barbara’s Cinnamon Puffins.  I don’t really like corn, or putting it in my system, but I don’t have many alternatives.  I use Rice Dream rice milk on it, since I can’t have cow’s milk.  The cereal is actually pretty tasty.  I have a container (4 oz.) of Activia yogurt.  This is the only dairy I am allowed, ever, as it has probiotics, so it is thought that the benefits outweigh the drawbacks.  I have a glass of water with my mineral powder mixed in (containing Magnesium, Calcium, Zinc, Phosphorus and D3), and take my morning pills.  The pills include one gelcap of alpha lipoic acid/acetyl l-carnitine, and 4 gelcaps of something called “Ease Pearls”, an herbal mixture to help with the pain, from my naturopath.

I come out to the living room and feed the bunnies, eat my breakfast while browsing on the computer, and check on the snakes.  I spend a lot of time on a forum for women with endo, contributing where I can, and just looking for clues as to how to manage this stupid disease.  At some point I’ll get dressed and take Alee out to pee.

Some days I have errands to run, some days I don’t.  On the days I have errands to run, I generally get hungry and have to break my diet because, quite honestly, there is nothing at a convenience store I am allowed to eat.  I try not to drink anything out of a plastic container, as I don’t know if the container has been in the sun or otherwise exposed to heat, causing dioxins to leach into the liquid.  I drink Nantucket Nectars (apple juice if I can find it, as it’s got no extra sugar), or Snapple.  For food I really have not got much of a choice.  I generally have a Kit Kat or Twix, because at least they are not made with high fructose corn syrup.

Almost every afternoon I am tired.  Some days I take a nap, some days I try to push through it.  On the days I take a nap, it is really hard to get back up even if I have slept for 2-3 hours.  After Sam gets home I start making dinner.  This is where it gets really interesting because of my dietary restrictions.  In addition to everything I listed above, I cannot have soy, alcohol, fried foods, or synthetic preservatives/colorings/flavorings.  I also have to eat organic whenever possible.  I have a recipe book made specifically for women with endo that I purchased online last December.  I am almost done with the book now (averaging 3 recipes per week).  Half of the stuff is not good, but I make everything once because if I only picked what I liked without trying it, I’d only try about 5 recipes.  I recently found out that I’m allergic to bananas, pineapples, asparagus, eggs, and oysters, so that makes my diet even more difficult.

My wonderful husband usually does the dishes for me if I have cooked that night, and we watch a movie.  I feed the cats, dog, and bunnies, and take the dog out to pee.  Right before bed, I have another glass of water with my mineral powder and 1 tsp. of apple cider vinegar.  I was also taking about 2 tbsp. of ground flax seed with it, but I think that was giving me diarrhea, so I’ve stopped taking it.  I take the rest of my pills–vitamin C, another alpha lipoic acid/acetyl l-carnitine gelcap, 4 “Moon Pearls” (which are similar to the Ease Pearls), a Pristiq tablet and a Lybrel tablet.  Lybrel is a form of birth control, and while I have an IUD, I have to take the BC to slow the growth of the endo lesions.

I have to brush my teeth with all-natural toothpaste because regular toothpaste contains horrible chemicals, and the same with all the soaps, shampoo, and cleaning products in the house.  I save money on cleaning products by using mostly vinegar, water, and hydrogen peroxide, but the special soaps I have to buy eat up all of the savings and then some.  I have to make my own mouth wash, floor cleaner, and glass cleaner.  When I do go to bed, it always takes me at least half an hour to fall asleep, usually longer.  After I do finally fall asleep, I get to get up the next day and do it all over again.

I make the best of it, and have made some drastic changes in my life over the past year.  On the plus side, I am eating healthier and have lost 46 lbs.  On the negative, my diet and other aspects of my life have gotten much more expensive.  It is impossible to find coupons for produce, and Shaw’s doesn’t carry much in the way of organic.  I love my local health food store, but they don’t do much in the way of sales.  The supplements I have to take, as prescribed by my naturopath, are not covered by insurance.  There are so many other topics in this post that I would like to cover more in-depth, but I’m afraid I’ll have to do that at another time.  Perhaps tomorrow.