When Menopause Won't Come

TMI ALERT:  This will be a very long, roundabout post and will contain extreme TMI about lady parts and other such things.  You have been warned!  Seriously, if you're at all squeamish about the female anatomy (there might be drawings!  and pictures of needles!), you should just close this post now.  I mean it.  I'm just looking to complain, explain, share, and get stuff out of my brain again...  :)

LCIS cells - pretty in pink

My particular health sagas began in 2008 - after many years of routine, nothing-to-see-here visits, I had my first suspicious mammogram, then biopsies and surgical procedures.  Because my results showed LCIS, lobular carcinoma in situ (non-cancerous cells, but with areas of abnormal cell growth that increases a person's risk of developing invasive breast cancer later on in life), I was recommended to see a breast surgeon (Dr. Julie Halston) and an oncologist (Dr. Pay-in-Advance) to monitor me frequently.  I would see them every three months or so. 

Dr. Pay-in-Advance was always particularly aggressive in her ideas for my treatment.  It was her idea that I start on Tamoxifen, which is an estrogen-modulating drug, usually used by people already with breast cancer.  She thought I should take it for three years and it would significantly reduce my risk of developing breast cancer myself.  (She also thought I should give up caffeine and eat a vegan diet.  I tried, I promise.)  Tamoxifen has some mighty strong side effects, like extreme night sweats and sudden-onset menopause.  Actually, I wasn't too sad about the menopause thing.  I figured it was time.  After many years of unhappy times of the month, I was glad to be free.

NOT FUN

Fast-forward to 2011:  I have yet another suspicious mammogram, biopsy, and surgical procedure, only this time the diagnosis was DCIS, which is ductal carcinoma in situ, meaning those abnormal cells became cancerous, but hadn't invaded the rest of my breast tissue yet.  This is when I decided to have the double mastectomy (you can remind yourself of that saga HERE).  When I had that surgery, it was decided I should stop taking the Tamoxifen, since it obviously wasn't working on me.  And of course, after I did that, my happy menopause was over and my unhappy times of the month were back.  (Of course, I also decided to stop being a vegan and drink caffeine again, because hello.  They didn't work either.  Why suffer?)

Every year, I see my gynecologist (Dr. Disco, so named because of her choices in attire) and I tell her that my unhappy times of the month are getting worse.  Every year since 2011, she has been telling me to hang on 'one more year' and surely I would be starting menopause soon.  Yes, I had a hot flash here, and a longer cycle there, but basically, nothing was stopping.  Last year, it got to the point where I was basically in some part of my cycle every day of the month - extreme exhaustion (seriously extreme - some days, I couldn't get out of bed) during the first few days; extremely heavy flow for seven to ten days (I have to sleep sitting up to avoid accidents), then two or three days of vertigo (I was so dizzy, I couldn't get out of bed).  Once that was over, it would all start up again, with no break.  It got to the point where I would start to cry every time I saw that it was 'that time' again.  I was getting depressed, I was missing at least one day of work a month, I was anemic and on iron (which is gross) and I was experiencing what I called 'crime scene' moments, where the flow was so heavy, it would just pour out of me onto the floor of my bathroom, so the red on the black and white tiles looked like a Law and Order episode.  I know there are women who have it way worse than me, but I felt like my life was just seeping out of me.

yuck, right?

I've known for years that I've had fibroids, benign tumors in my uterus, which of course are a big part of all my problems.  All of the excess estrogen has wreaked havoc.  I've had a couple of sonograms over the years to monitor their growth.  With the ever-worsening of my cycle, I finally convinced Dr. Disco that something needed to be done.  I'm over 50 and I just can't do it anymore - her asking me to hang on 'one more year' was not working.  She gave me the names of a few doctors to talk to to discuss having my fibroids either embolized or removed.  All of the names on her list were men.  I said, "Can't you recommend any women doctors?"  She said, "You prefer a woman doctor?"  I thought, uh, duh.  My whole team is wonderful women doctors and why would I add a male doctor now?  It's pretty much always been my experience that male doctors are harder to convince that there's a problem (the last male doctor I had actually asked me if I was in therapy because he couldn't find anything wrong with me; this was in January).  Anyway, I did call one of the doctors on the list and he had retired.  A WOMAN had taken his place - woo hoo!  So off I went for a consultation with another doctor inside my current health network - it makes everything so much easier when all of my appointments can be tracked on that network's website.  

NOT me

First I met with that doctor's lab assistant, who was, conservatively, twelve years old.  And a boy.  Sigh.  I will never forget the experience of trying to describe to him the different levels of feminine protection and what each color generally means.  He was looking at me as if I were telling him a short story instead of my symptoms.  I guess I'm a compelling storyteller.  Anyway, he did a couple of little tests to see if the embolization procedure was even a good fit for me.  Since it was, he went to get the doctor.  Who was, conservatively, fourteen years old.  But a girl.  I have dubbed her Dr. Mary Ingalls.  She came in and said I was a good candidate for the procedure, I just needed to get a pelvic MRI first, to confirm my problems were only fibroids and not something worse.  She also was telling me the potential risks or complications, one of which is menopause.  I just looked at her and gave her a thumbs up.  I mean, hello, that's the side effect I'm looking for!  The MRI, which I had a few days later, was a piece of cake and showed that yes, indeed, I needed the procedure.

not completely size-accurate, but still!

That ugly picture up there is of what fibroids apparently look like - I have nine and they are like that yellow one, intramural.  That means they're in my uterine wall, towards the back.  The largest one is 5 x 7 x 6 centimeters, which seems pretty huge to me!  No wonder they're giving me such problems!  My bathroom issues, my flow issues, are all explained.  So after discussing the results with Dr. Mary Ingalls and Dr. Disco, we set up the appointment for UFE, uterine fibroid embolization.  I was hoping to have the procedure during Tennis Week, since my mom would be here and I wouldn't have to take extra time off work, but we couldn't get our schedules to sync.  So I made the appointment for the Friday before Columbus Day, figuring I'd at least have one free day to play with.  Dr. Mary Ingalls told me that the recovery was around a week, so I planned to be back at work in six days because I was cocky and thought I could recover quickly.  Oh how wrong I was.  I ended up needing ten days to recuperate and I'm still a little achy, but at least it's getting better.

NOT me

My appointment was set up as the first of the day, which was nice, because the nurses all let my mom tag along to the tests and pre-op stuff.  I went into a room to have a major IV put into my hand - it needed to be able to deliver antibiotics, pain meds and a sedative.  So that was an ordeal, since it's historically a problem getting an IV into any of my veins, but the girl seemed to do ok.  This will come into play later.  My mom and I sat in the pre-op room for quite a while - suddenly, another nurse blew into the room, saying she couldn't find any saline bags for my IV.  She looked around and didn't find anything, then blew back out.  My mom and I exchanged looks.  She seemed a little excitable, but ok.  This will come into play later, too.  Finally, the time came to lead me into the operating room (my mom was taken back upstairs to the waiting room).

According to one of the websites about this procedure, "In a UFE procedure, physicians use an x-ray camera called a fluoroscope to guide the delivery of small particles to the uterus and fibroids. The small particles are injected through a thin, flexible tube called a catheter. These block the arteries that provide blood flow, causing the fibroids to shrink. Nearly 90 percent of women with fibroids experience relief of their symptoms.  The equipment typically used for this examination consists of a radiographic table, one or two x-ray tubes and a television-like monitor that is located in the examining room. Fluoroscopy, which converts x-rays into video images, is used to watch and guide progress of the procedure. The video is produced by the x-ray machine and a detector that is suspended over a table on which the patient lies."  Ahhhhhh, science.

radial artery catheter.  fun.  again, not me.

So, basically, I felt like I was in the middle of a video game for a couple of hours.  The radiologist, who had pink hair and many tattoos, was very pleasant and took her time setting everything up.  She briefly warned me that there would be some 'discomfort' during the nerve block, but I should be fine throughout.  Oh, and I warned them that I had a cold and they said it was no problem, if I had to blow my nose, just let them know.  Considering that one hand was attached to IVs with painkillers and the other hand was attached to the catheter thing that was inserted into my radial artery, there was no way I was going to be able to blow my nose.  Thankfully, my head stayed pretty clear.  The overly-excitable nurse put an oxygen thing in my nose, then came back and said "I'm not getting a reading."  I'm like, yeah, I have a cold, not breathing through my nose, thanks.  So she put another oxygen thing in my nose.  Same thing, no reading.  So then she put an oxygen mask OVER the nose thing.  That wasn't the most comfortable and it took her a few minutes to figure out that I only needed the mask, but whatever.  I was feeling drowsy, but not asleep, so I was awake for the whole procedure.

Even if I had been asleep, the injection of the nerve block would've awakened me.  I consider myself a person with a pretty high pain threshold, but holy mother of hell.  That was the most painful thing I've ever experienced.  It was supposedly going to be a 'prick' just below my belly button, but it was agonizingly painful.  I don't know if it was because it was directly into a fibroid, or what, but oh my god.  I kept moaning in my stupid oxygen mask and the Tattooed Tech kept saying "I know, I'm sorry, I'm almost done," but then she would press it again, like some crazy button that needed to be pressed, or like pumping air into a flat tire.  I almost passed out from that, but thankfully it finally ended.  Then I could notice and marvel at the fact that it seemed like Dr. Mary Ingalls was playing Space Invaders.  See that picture up there on the left with the big video screen?  Apparently, as the Tattooed Tech was pumping the nerve block, Dr. Mary Ingalls was nuking my fibroids!  She kept moving things around, hitting buttons, moving things around, hitting buttons.  The sound of it just reminded me of my nephew playing video games.  So that's what I imaged was happening.

About this time, though, the overly-excitable nurse exclaimed that my hand IV wasn't working.  Uh, wait, what??  Did that mean my pain killer and my buzz were going to wear off too soon?  I don't know, but she had to come over and give me another IV into my wrist instead.  By now, I had so many needles and bruises, I looked like an addict.  The overly-excitable nurse was also quite disturbed by the fact that she had to keep monitoring me instead of writing things down on the chart.  She was flustered that she was getting behind and she needed help.  It was a bit nerve-wracking for me.  I'm just lying there, but I felt like it was somehow my fault she couldn't get her work done.  When the procedure was finally over and they took the radial artery catheter out, the Tattooed Tech tried to calm the overly-excitable nurse down.  She finally called in another nurse, Mallory, who just wasn't having it.  She and the Tattooed Tech kept rolling their eyes at each other every time the overly-excitable nurse complained that she didn't have time to do anything.  So Mallory wheeled me into recovery, to get me away from the overly-excitable one, who I never saw again.  It was like a video game AND a performance of Mean Girls!  What a trip!

I was freezing in the recovery room, so Mallory brought me one of those wonderful heated blankets.  That helped me doze off.  Though I kept feeling as if I had to go to the bathroom.  Mallory said it was pain from the nerve block, but I finally convinced her that if I went to the bathroom, my brain would stop telling me that I needed to if I really didn't.  So I gingerly got up - yay, pretty easy!  Then I went to the bathroom and proceeded to use that bathroom sort of like that scene in A League of Their Own.  You know, when Tom Hanks comes into the dugout and uses the bathroom so long, they time him?  Yeah, like that.  When I came out, I said to Mallory "Told you I had to go!"  Thankfully, she laughed.  Dr. Mary Ingalls dropped by to tell me that everything went fine and that I might be in a lot of discomfort the next day, after all the drugs wore off, but I was a little too cocky, remember, and I'm like, oh it's fine.  I have cramps, but they're ok.  I would be sorry about that later.

They had put a huge pressurized cuff on my radial artery and every few minutes, Mallory would come to release some of the pressure.  That probably lasted about an hour in total.  And then everyone forgot about me.  I was just lying there, dozing, but no one came to speak to me for quite some time.  After everyone around me was released, and then I started to get cramps in my legs and back, I finally stopped someone and said "Can you get bed sores after only a few hours?"  She sent Mallory over.  "You think you're ready to go?"  Uh, yes.  I know I was lying there for at least two hours, if not more, and I'm sure my mom was going nuts upstairs!  I would rather have been lying on my couch than in that freezing recovery room.  Mallory asked me about my pain and I SHOULD'VE SAID IT WAS A 7.  That way, she would've given me something and I would've been ok until I got home and it was time for another dose.  But, no.  I said it was a four.  I am dumb.  Everyone always says, "Don't be a martyr, if you're in pain, do something about it," but I didn't really understand that until now.

Oh, and I forgot to mention:  while I was lying in recovery, there was a contretemps happening between another nurse (not my Mallory) and doctor (not Dr. Mary Ingalls) about the patient next to me.  From what I could overhear (and, of course, I was on drugs at the time), the gent in the bed next to me had something removed from his arm, or around his arm, or something, and he needed to keep his arm flat and still.  It was making the gent uncomfortable, so the young-sounding (male) doctor said he'd give him a little something to relax him.  After a while, the doctor came back and asked if the medication had helped.  The patient said he hadn't received any medication yet.  The doctor then proceeded to yell at the nurse, "Why hasn't he received the medication?!"  The nurse calmly replied, "Because you didn't order it."  The doctor said, "You heard me talk about it."  The nurse replied, "If you don't order it, I can't give it."  The doctor retorted, "Yes, I did order it!"  The nurse replied, "Please show me where you ordered it, because it's not in the chart or the computer."  The doctor stomped away.  I heard all the nurses whispering and then I'm pretty sure I heard the nurse in question say, "He said he's going to report me."  If that contretemps wasn't a microcosm of what's happening in the world right now, I don't know what was.  Of course, I WAS on drugs at the time.  But still.

Anyway.  Mom and I slowly walked outside after getting all my discharge papers and information and found a cab.  Of course, this was the worst cab and cabbie in NY.  He drove way too fast and the car had no shocks.  At least it didn't feel like there were any shocks - we bumped and shook all the way to Queens.  This ride did not help my cramps in any way, shape, or form.  I was feeling very unhappy by the time we got to my apartment and I was so ready for a pain pill, but I had to wait for my mom to go get the prescription filled.  By the time she got back, I was really agitated - in pain and nauseated, so I was afraid to take a pill (even the one for nausea).  I finally started taking pills right after I threw up, figuring I had a few minutes grace time before something else would happen.  

My paranoia about taking opiates is real.  The pain pills would wear off well before it was time to take the next one and I would be in real agony.  My mom kept telling me to just take the pill, but I was afraid to take them off-schedule.  I kept saying "I DON'T WANT TO GET ADDICTED OR BE LIKE KAREN ANN QUINLAN!"  I can be a little over-dramatic.  But the first few days were bad - the pain was much worse than I expected; it wasn't just the cramps, but there was a strong, searing, continual pain in my side that extended into my leg that made me nervous.  After my sister's blood clot misadventures, that fear is always on my mind.  Two days after the procedure, when I thought the pain should be tapering, that strong pain in my side was still going strong, so I called the after-hours doctor for a little advice.  In the three hours it took someone to call me back, I had already taken another pain pill, but I was glad to finally be reassured that the pain in my side and leg was normal with the nerve block wearing off.  Even if the (male) doctor on the phone seemed less than interested in speaking with me.   

So my recovery was much rougher than I thought it would be.  After my surgeries in 2011, I stopped taking pain pills really quickly, but that didn't happen this time.  I guess I'm older and less able to handle pain.  I had thought I would be back to work in under a week, but ha ha, I ended up being off ten days.  I wanted to wait until I had stopped the pain pills completely, even overnight.  I finally just had to tell myself to get over it, I wasn't going to become addicted to opiates.  My mom was a trouper throughout, even when my internet and cable went out.  I guess I should be glad that the water was never turned off while she was there.  But we had fun regardless - we played Golden Girls Trivial Pursuit, I made her listen to The Band's Visit cast album, and then I suddenly remembered that you don't need cable to watch DVDs.  So we watched quite a few of my rather neglected DVDs (gosh, The French Lieutenant's Woman holds up beautifully!) and I just reclined and took it easy for those ten days.  Sitting up was uncomfortable, but reclining on my couch and bed was fine.  As long as I kept up with my medications.

My first day back at work was also rough - of course, there was a subway problem and I had to stand for about an hour while we were trapped in the tunnel.  I started to panic that I needed a pain pill and I didn't bring any (yes, I left some in the bottle, it helps with my paranoia), then I started to feel really nauseated.  But by the time I finally got to work, I felt ok and made it through the day, though I felt pretty week and wobbly.  I've been feeling incrementally better the last few days.  I have a follow-up with Dr. Mary Ingalls in a couple of weeks, but it will probably take four to six months before I know if the procedure worked in the way I wanted it to - I'll keep you posted, though I'm sure everyone has been grossed out enough by this post that you don't need to hear anything else.  But I'm hoping it might be time for me to have a little women's-health-good-fortune.  Fingers crossed!  I don't want to have to tell any more of these stories!