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.

What is it like to live with a chronic illness?

I recently came across two articles that explain perfectly what living with a chronic illness is like.  The first article is about endo specifically:

http://www.vitalhealth.com/blog/endometriosis/what-it-really-means-to-have-endometriosis/

The second was written by a woman with lupus, but it can really apply to any chronic illness:

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

I’m not copy/pasting them word for word in respect of copyright.  I’m not down to 12 spoons a day, but definitely not unlimited.

In other news, Sam has been on a Family Guy kick lately.  All this weekend and all last weekend he’s been watching it.  Watching how Bonnie & Joe interact on some episodes, it almost makes me feel like it’s me and Sam.  If I weren’t at a point where I could laugh about it, I’d probably be really upset.

My pain is gone, as long as I don’t eat things I shouldn’t.  I really encourage anyone who is having problems with endo to try a naturopath and try changing your diet.  It is not a cure, but it is a great treatment for the symptoms.  Despite the lack of pain, I am still wanting for energy.  I’ve been dealing with that for longer than the pain though, so I guess I’ll just continue to deal.

I thought about posting what other women have gone through, some of the horrible things that this disease has brought upon them.  Then I decided I don’t want to dwell on the future.  If those things happen to me, I will deal with them then.  For now, I am happy with what I have.

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

Don’t Ask, Don’t Tell

No, this entry is not about gay rights.  It’s about another taboo part of daily life–female sexuality.  In particular, it’s about my personal sex life.  If you’re related to me, or easily offended, you may not want to read this one.  It’s gonna make you uncomfortable, at the least, but if you can get through it, you will have a profound understanding of endometriosis that most women would never dream of telling you.

I started having sex at 17.  I always loved it, and when I met Sam, I loved it even more.  He was amazing–he made me orgasm almost every single time.  Then when I was 23, it started to hurt.  I ignored it for a while (a year and a half), hoping it would go away.  When I finally went to the doctor, I found out it was endometriosis.  Little did I know just how much that would impact my life.

At first, the pain wasn’t overbearing.  I could ignore it for the most part.  It did seem to get worse if I got close to orgasm, but I could handle it.  Over time, the pain became so bad that certain positions became impossible.  Anything from behind is just not happening, probably for the rest of my life.  Most days, it’s all I can do to handle missionary.  And that’s after doping myself up with Celebrex.

We can’t have sex more than once every 2-3 days, because I hurt afterwards.  And it’s not that good hurt like when I was younger.  It’s a “something is wrong with my body” hurt.  Sometimes I hurt so much right afterwards that I can’t get off the bed until I force my muscles to relax.

Starting about 3 months ago, it hurt so much when I orgasmed that I was afraid to even try.  Made for a lot of quickies, and a lot of frustration.  Sam is a giver, so he doesn’t like seeing me in pain or unable to enjoy myself.  I took some herbal stuff from my naturopath, and that has helped the orgasm pain.  I am still afraid to let myself go completely.

O, and about orgasm–I cannot do it from internal stimulation anymore.  It’s gotta be clitoral stimulation or nothing.  How’s that for aggravating?

The other night, we had “normal” sex for the first time in months.  It didn’t hurt at all.  I had a slight heavy feeling afterwards, but no pain.  I cried, I was so happy.

Despite all this, I’m one of the lucky ones.  I’ve heard of women who cannot have sex at all–can’t even have a pelvic exam–without excruciating pain.  I’m trying everything to make sure I don’t get to that point, but Sam tells me he’ll still be with me if we can’t ever have sex again.  And I believe him.

Sick Rant

Sometimes, I like to pretend that I’m completely normal–normal as in, that I don’t have a debilitating disease.  This helps me get through the day.  Then life bites me in the ass, and I can no longer pretend.

Last week, my husband was sick with a head cold.  He said he had it for 10 days.  I started getting symptoms this week.  By day 2, it had developed into an infection, apparent by the yellow mucus being flushed from my sinuses.  In all 10 days that Sam was sick, it never turned into an infection.  I guess that’s the empirical proof in the difference between our immune systems.

Sam does not take any multivitamins (or any daily supplement, for that matter).  He usually eats a healthy dinner, and sometimes lunch, but when I’m not feeding him he eats crap (McDonald’s, pizza, etc).  Sometimes he eats well on his own, but he is not the greatest at avoiding food temptation.  If I buy him a bag of chips, for example, it will be gone that night.  A pie I bought for him lasted 4 days, and that’s because he was trying to stretch it out.

I have a mineral drink every night, apple cider vinegar at bedtime, freshly ground flax seeds, vitamin C, I eat well 95% of the time, and I usually get enough sleep.  Yet my immune system could not keep up with something as small as a cold.  Since I started getting symptoms, I’ve been taking Three Spices Sinus Complex twice daily, Sudafed and Advil every 6 hours, and flushing my sinuses with a nasal rinse twice daily.    Screw you, immune system.

I have to be very careful whenever I want a new tattoo or piercing.  I have to make sure I am in the best state of health I can attain, and I can’t get more than one at a time.  I have to let the tattoo/piercing heal completely (some piercings take a year) before I can think about getting another.  Yeh, I don’t need tattoos or piercings, but you don’t need that leather jacket, or new sofa, or 20 pairs of shoes.

I’m just over being sick, and had to complain to someone.  So I felt this was a perfect opportunity to write in my blog!  I hope you’ve gotten some insight into what a woman with endometriosis goes through every day, at the very least.

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.