My brain is spinning

The right side ovarian pain has been intermittent and mild throughout today as well.
This morning I had my follow-up appointment with Dr. Giudice, my ‘new’ GYN. She had a new nurse who wanted to make sure she had my history correct, so we went over the notes. I love how the nurses and doctors prepare themselves before speaking with the patients, it’s pretty awesome. Even if they only just read my history a few minutes before entering the room, they do a great job of putting off like they’d spent lunch hour or the night before poring over my file. It makes me feel respected and valued – imagine that! So far, Dr. Giudice’s office is three and a half to four star in my book (Not five star? Communication issues sometimes are the problem).

This morning we caught up to the present pain, and the nurse typed up everything for Dr. Giudice:

“38 year old with history of endometriosis and chronic pelvic pain presents for follow-up. worried about growth of endometrioma. increasing pain on Right ovary intermittent, stabbing. walking, heating pad not work. severe dysmenorrhea is stable, but patient reports worsening debilitating pain 1 week before her period which is new (similar to pre-surgery 2007). tylenol #3 and ibuprofen not work. during menses – bedridden, around-the-clock (ATC) meds. pain currently Right side, but can be on both sides.

2 visits with UCSF pain management psychologist – insurance stopped covering. sees psychiatrist (new appt next week), psychologist, alexander technique pain management (less movement)

4/21/10 – patient referred for pelvic MRI to rule out adenomyosis. Referrals for chronic pain clinic and pelvic physical therapy were given. She declined Mirena IUD, Lupron, presacral neurectomy.

6/23/10 – patient returned to review MRI. MRI revealed 1.4cm Left ovary endometrioma vs. hemorrhagic cyst, no evidence of adenomyosis. patient declined GABA cream hormonal treatment, or antidepressants. Patient is interested in surgical resection of endometriosis. The decision was made to defer surgical intervention.

Since then, she has called the clinic several times regarding nausea (7/2), passage of thin grey tissue during menses (7/26), and a heavier than usual menses (8/20). Her pain is currently controlled with Tylenol with codeine and Ibuprofen.”

That’s a pretty good history – I didn’t expect them to have preserved notes on my calls to their office! So cool. The only thing I take issue with is the “GABA cream” – perhaps the nurse got it wrong, I dunno. But during my visit to the pain management director in May, and my visit to Dr. Giudice in June, the word “cream” was not used to describe Gabapentin. It was called Neurontin and Gabapentin interchangeably, and was told to me that it’s usually prescribed as a seizure medication.

That aside, everything was ok with the notes/history. Dr. Giudice came in and we talked about my current pain, went over the available treatments again, and it was suggested I try an aromatase inhibitor. Dr. Giudice was under the impression that I was offered and had refused this treatment before. I find no reference to it in this journal, and I knew in my head that I had not had the conversation with her, so I asked her to expound. She told me that a lower dose would be used for me than for breast cancer and ovarian cancer patients, and that she’d have to add a progestin sidecar so that my ovaries won’t go into overproduction or further estrogen dominance.
I might have been sold but for the fact that progestin was mentioned. I told her why I’m reluctant to even use the Mirena IUD, which contains progestin, and told her that on Levonorgestrel, I get severely depressed. Granted, the dosage is much higher in what I’ve taken (Plan B) than in the Mirena IUD (controlled release), but I don’t want to take the chance after what’s happened to me in the past.

I told Dr. Giudice that I’m seeing a psychologist who strongly suggests I be put on mood stabilisers, and I will be seeing a psychiatrist next week who will see if that’s really the case. After I’m put on psych meds, I told Dr. Giudice, then I might consider the aromatase therapy. She was totally satisfied with my idea/request.

Next, we went to the exam room, and I underwent my second transvaginal ultrasound of the year. I know the routine now so we got right to it. I prepared myself a little better this time by taking 1mg Ativan before my doctor visit, and even though I still experienced pain from the procedure, I was a bit more calm this time around, and not traumatised at all.

The ultrasound revealed bad news: I now have endometriomas on BOTH ovaries, and I still have the damned free fluid (which means it’s likely pools of blood from the endometriomas) around the ovaries. My left ovary has also become reattached to my uterus…all within five months, since my last ultrasound and MRI scans.

So begins the Twenty Questions:
Did the stress of going to school over the summer hasten my illness? Or is it just progressing this way on its own? Is it my diet? Is it not enough exercise? Or is it just the illness, no matter what I do or don’t do?

I suffer emotionally with the 20+ questions, and I suffer physically with the pain.

After the ultrasound, Dr. Giudice made her recommendation – she wants to schedule me for a laparoscopy.

I asked her what changed her mind between her decision a few months ago NOT to give me surgery, and today. She said that there’s obviously more growth going on, and she does not doubt for an instant the pain I am in, based upon what she saw on the ultrasound in April and then today. She’s seeing the growth in progress. She asked me how soon I could schedule surgery. I told her next summer would be best, since I could take part of the summer off to recover. She asked if I could do end of December. I told her I’d have to check with my school, but I’d need more than 10 days this time around for recovery, since I’m not at a desk job like last time around. This time around, I’m chasing after preschoolers all day.

I asked her, if she has to take at least one ovary, what would that mean for me – what adjustments would my body have to make? She looked at me funny and said that apart from the endometriosis and a routine biopsy at time of surgery, she wouldn’t think of taking my ovaries. She said it’s always a risk to do so, since the ovaries, fallopian tubes and uterus are all so closely connected via ligaments and such to the bladder and bowels. It’s tricky stuff, she said.
Hah. That’s quite a change from my visit to Kate O’Hanlan a year ago!

Dr. Giudice told me to think about scheduling surgery soon, and said she’ll have her scheduler give me a call.

I got copies of the ultrasound and today’s notes, and then called my husband and told him the bad news.

We were JUST talking over the weekend about going to Yosemite for Christmas break, and now I am pressured to have surgery at that time. :(

I told my husband we’ll have to have a big talk about finances, and that likely we won’t be able to swing December, anyway, since we’re still clawing our way through debt incurred this summer when I went to a teacher training course.

If I have the surgery on summer break, then I can go to Yosemite in December, and I can fly to Michigan for my promised annual return in the summer, after I recover for a month and a half after surgery. That is, I can have my cake and eat it, too.

Then the doctor asked what most doctors have asked me, “How long are you willing to suffer with the pain?” i.e. “do you LIKE being in pain? Get in the surgery room now!”

It’s not that simple, dammit!! I can’t just drop everything and run to surgery. The last surgery, under a different insurance, still cost me $1,500 out of pocket in co-pay stuff, plus eleven days without a paycheck. I have a different insurance, and I make $8/hr LESS than I did last time I had surgery. I have to check with this insurance, and I have to pay back existing medical bills and other bills FIRST, and also talk to my husband to see how he’s catching up financially, before we jump into the whole surgery in December thing.

Blah.

When I got home, I reviewed the ultrasound paperwork, and compared today’s imaging and round of notes to the last ultrasound, as well as to the MRI.
I found that things got really spinny at that point – it seems that all of us – me and the doctors – have been referring casually to both ovaries as the one which has the endometrioma on it.

In January, March and April, 2010, I experienced debilitating RIGHT side ovarian pain, per my iCal. In mid-March and again in mid-April, it felt like I was experiencing an ovarian cyst rupture on the RIGHT side, I was in so much pain.

On April 21, 2010, the ultrasound revealed the following: Possible endometrioma on the RIGHT ovary, measuring 0.9cm. Nothing on the left ovary.

On May 27, 2010, I went for an MRI, which revealed the following: The RIGHT ovary is NORMAL.
The LEFT ovary has a 1.4cm mass, “which, given the clinical history, likely represents an endometrioma.”

I didn’t pay attention to left or right. I only thought OH MY GOD THE ENDOMETRIOMA IS CONFIRMED AND IT’S GROWING.

In reality, what happened was that Dr. Giudice found an endometrioma on my RIGHT ovary, and the MRI people found an endometrioma on my LEFT ovary. One didn’t just pop out overnight in time for today’s ultrasound.

So in reality, I have had two endometriomas – one on each ovary – for gods know how many months.

The endometrioma on the LEFT ovary was 1.4cm as of May 27, 2010 at the MRI visit, and on September 8, 2010, that endometrioma was visualised on the ultrasound to measure 1×1.1cm. So it is shrinking ever so slightly…possibly.

The endometrioma on the RIGHT ovary was 0.9cm on April 21, 2010 as visualised on the ultrasound, and on September 8, 2010, the endometrioma on the RIGHT ovary grew to 1x1cm, also as visualised on the ultrasound. The MRI did not find an endometrioma on the RIGHT ovary back on May 27, 2010.

I asked my GYN to confirm the size of each of my ovaries – I guessed 3cm. She said just under 3cm. So a 1cm endometrioma is eating a third of each of my ovaries. She didn’t see it that way – she said that the endometriomas are small. But in relation to the total size of the ovary, I’d say the endometriomas are BIG.

In either case, she had already made her suggestion that I get my ass into surgery ASAP.

You know I’m TOTALLY having a pity party right now. :(

Day 2 in the Underworld – medicinal experimentation

Yesterday was Day 1. George was a day late. I suspect he was a day late because I went swimming on Saturday and also drank two Sangrias. The swimming was fun, I treaded water and moved my arms back and forth a lot to get in an upper body workout. We were at our friend’s apartment that day.

Sunday morning, I began spotting, and it was dark brown with clots already present.

At Noon Sunday, I attended a free Alexander Technique pain management class through my local dispensary. I intend to go every Sunday. The instructor helps train us to make better choices with the way we move our bodies relative to our pain issues. Yesterday there were three of us in the class.

After that class, which lasts an hour, my husband took me and our friend G to the movie theatre to see Inception. The movie was a nice little mindtwister, I liked it. After the movie, I used the toilet, and discovered a greyish mass in the dark brown and maroon blood clots when I wiped myself.
GREY! Like I’d see on my surgery photos of what colour the endometriosis is INSIDE of me! I was not okay with this!

Twelve minutes ago, I ingested a zero sized veggie cap filled with medical grade cannabidiol. The dispensary had them in 00 capsules, but I thought that since I’m already so sensitive to everything on the planet, I should try a 0, instead. So here we are, Waiting For It.

Twenty-three minutes have passed and I am now feeling a bit mentally cloudy, and I am burping up the taste of cannabis. I’ve always hated the taste and smell of this stuff.
The pain is still with me and has been hovering at about a 7 on the pain scale, with sharp twinges on the left ovary shooting me up to 8.5 on the pain scale every so often.

Thirty minutes in, and I’m feeling a bit nauseous. My stomach is gurgling a lot and I’m still burping up the icky taste.
I am drinking Hobee’s Cinnamon Orange tea, which contains black tea, orange peel, cloves, rose hips, and oddly, no cinnamon.

Forty-six minutes in, and I’m getting sharp uterine pains which radiate to my lower back. I don’t feel blitzed on the stuff like I would had I smoked it, but I am still waiting for pain relief. I am bleeding heavily today, and have already bled through a thick fabric pad to my underwear.

I am still sick and coughing up thick green mucous in the morning. My husband entered the bedroom after his morning shower and I began gagging on the scent of his shampoo again. He got all offended as he always does when I told him his shampoo is killing me. I told him it’s worse for me right now because not only am I on my period, I also have an upper respiratory tract infection going on, so my sense of smell is heightened, and along with that my chemical sensitivities. He promised tomorrow morning to use the unscented shampoo I bought weeks ago. I think he’s enjoyed not having my chemically sensitive self around while I’ve been at school. I spent all of last week in a motel, and I’ve been staying in a motel on and off for six weeks, so he’s not had to worry about chemicals and fragrances. I shocked him back to reality this morning.
We think we traced the source of the illness – the friend I suspected (M) says she suspects our other friend (P). The timing makes sense – we were both hanging out with P on Thursday, July 15th. M and her husband had given me and P a ride. That night, P had a cough. Then on Friday, M & P hung out again. M said P looked really bad by then. By Saturday, M was sick, and P had lost her voice, but still came out to another event – a friend’s birthday – which I also attended.
P showed up again for the AIDS Walk on Sunday, July 18th; we gave her a ride and hung out all day with her. M also showed up for the AIDS Walk. While P was not coughing so much, M was full on sick by now, coughing a lot.
By 7pm that night, I developed a cough. Four days later, I sounded like a barking sea lion in the evenings and mornings, and that’s where it is even today, another four days after that. My ears have been plugging up and my eyes have wanted to stick shut, they’ve been so gooey. My friend M says I have perhaps another week before I start to feel better, and her husband also caught the illness and has a full blown ear infection, now. UGH.
Despite all this, my husband keeps insisting on kissing on me, because he’s missed me so much. I warned him, and he doesn’t care. Boys.

We are at the hour mark now since I ingested the cannabis. As long as I don’t move around, the pain is about at a 4.5 at the moment. I am sitting with one leg crossed under the other on a hard wooden chair. I am uncomfortable and the foot tucked under my leg is falling asleep. So I will have to move. Let’s see if I can relocate to the bedroom and what that does to the pain level.

Okay, that was about 20 minutes of moving supplies and myself to the new location, from the kitchen table to the bed. I had to make the bed, set up the wooden bed desk, unplug and move the laptop to the beddesk, plug it back in, and move my homework 3-ring binders and supplies to the bed so that I can attempt some homework today.
At first, while doing all this, I noticed that there was a spike in pain, but I was happily dissociated from it. I could tell there was tightening in the pelvic region, down through my hips. I could feel a burning sensation, but it didn’t hurt. However, after nearly 20 minutes of movement, the pain screamed through the medication, and now here I am, sitting on the bed with a heating pad on my pelvis and a heating pad on my lower back, doing my breathing exercises.
All the movement required to transport things to the bedroom also kicked up the effects of the medication, and now I am even more fuzzy-headed than I was before. I think I may need to sleep, soon. Not moving is in my best interest.

My review of the edible cannabis so far is that although it takes an hour to kick in, I think it might be a viable alternative to the Tylenol 3, if I remember that I still should stay home from work and force bed rest. I accept the fact that there is nothing on the market that will both alleviate my pain and keep me alert and sober.

It’s been nearly an hour now since I moved location from kitchen to bedroom, and the sharp pains are still with me, dammit. I should not have poked the hornet’s nest. I am considering taking half a Tylenol 3 and some Ibuprofen at this point. The pain is at 7.5 on the pain scale, and burning.

Just over an hour since moving location, and two hours since I ingested the cannabidiol. I sat up instead of reclining back, and that helped the pain go down momentarily, but now it’s back again. The pain is still burning throughout the uterus and radiating to the lower back. Still 7.5 on the pain scale. The heating pads are not hot enough. I am going to rewarm them and also ingest 600mg ibuprofen and half a Tylenol 3.

This concludes today’s medicinal experiment.

Results: recommended alternative to Tylenol 3, as long as I do not move around. Experiment needs to be repeated when I have the emotional strength to try it again. Right now however, I have reached my emotional and physical breaking point with the pain, and I feel that I need the codeine, acetaminophen and ibuprofen cocktail.

4:52pm Update:
About four hours ago, I took a half a Tylenol 3 and 600mg of Ibuprofen, and I did that just over two hours after taking a dose of cannabidiol.

I slept for two hours.

Roughly 45 minutes ago, I took a second dose of the Tylenol 3 – only half a pill, because the pain started ramping up again.
Just over the half-hour mark, I was suddenly supremely stoned. Holy shit. I’m never this freaking high on one half of a Tylenol 3. I know this is the remnants of the cannabidiol, because of the way the high feels. I feel like I just keep ramping up and up, I feel like I’m being launched into outer space.

I uh… I’m gonna go lay down again.

Catching up

Saturday, July 3, 2010 – Woke up at 4 on the scale, ate breakfast w/ coffee. The bleeding resumed – I hit a 6 on the pain scale.

Sunday, July 4, 2010 – Pelvic pain if I was standing – I spent most of the morning sitting and watching the town parade. Tried hula hooping in the afternoon – which set off more pain – about a 4 on the scale. Better by evening but I was quite fatigued.

Monday, July 5, 2010 – Begin teacher training class, which is an hour and ten minutes commute. I had to be up at 5:30am. Ugh. Got about 4-5 hours of sleep. VERY fatigued all day. Light spotting. Rented a hotel room with a classmate to avoid the hour-plus commute to and from school all week.

Tuesday, July 6, 2010 – Already under a lot of stress from the class and homework expectations. I was told upon enrolling months ago that I’d have all summer to get my coursework done. Now I’m being told everything for each class is due within 7 days of each class!!

Wednesday, July 7, 2010 – Students are having emotional breakdowns. I’m near breaking point. Pelvic pain kicking back up again as a result. Came home late Wednesday night.

Today, July 8, 2010 – I took the day off school to go to my first pain management clinic as prescribed by my GYN Dr. Giudice, and the pain mgmt program director, Dr. Thoha Pham. Good thing, too, cuz the pelvic pain is still with me, today. Yesterday and today it’s kicked up to about a 4 on the scale.
The person I saw today is a pain management psychologist. Her name is Dr. Katherine Bowman, and she’s going to teach me to be more disciplined in progressive relaxation, as well as introduce me to mindful meditation. My next appointment with her is July 29th, and she wants to see me every two weeks.

This evening, I have acupuncture, and I will talk to my practitioner about the herbal remedy (discontinuing it again because THREE fingers broke out completely from top to bottom, cracked open, bled, and shed skin for an entire week – started within 24 hours of ingesting the tea), and I will see if it’s possible to see her weekly.

My next appointment with the pain management program director is August 4th – to just check in and see how things are going. I’ve had quite a bit of confusion as to some Dr. Priscilla Abercrombie in the Women’s Health bulding – I thought my GYN wanted me to see her, but no one has been sure if I’m supposed to or not? So I’ll get that sussed out with Dr. Pham.

SO many doctors! Ugh. It is a sad commentary that I actually feel at home and comfortable in the presence of doctors and specialists. :(
And at the same time, the guy in the parking garage today asked me why I come around so much, and I told him I have an autoimmune illness that causes a lot of pain, so I’m on the medical campus a couple times a month. He looked me up and down and said, “You look like happy sunshine to me – not sick!” I beamed back at him and thanked him, and said I could be a full time invalid and patient, or I can live life when I can, and I choose to live life when I can. He smiled big and praised me. :)

For lunch today, I bicycled to pick up Thai food. It was a one mile trip on the bicycle, and now my knees are killing and my entire body is fatigued and feels like lead. This makes me mad at my body. It makes me feel like any exercise I do will always lead to more pain. I feel like I can’t win.

And yet, every single time, I get back up on that bike. I get back out of the house and go out somewhere. I keep fighting. It’s so weird. I get so mad, so frustrated, want to give up, but I can’t. Something just won’t let me. I’m off to do laundry, now. The laundry basket with all the dirty clothes weighs 24.4 lbs (11kg). I note this because I can carry it – normally. We’ll see how it goes today. Probably will be okay. Just noting how I keep getting back up on that horse, is all…one activity to the next, despite the pain.

3:40pm update: Note to self: bell peppers are in the nightshade family. You’ve had digestive problems with bell peppers for many years. It is getting worse. Now you are getting diarrhea after eating bell peppers. These are nightshades and also inflammatory foods and thus on your No Fly List.

ADHERE!

The calm before the storm

This evening, just after 6pm, the pain ceased. This happened after I took the half Tylenol 3 and after I had repositioned myself in a kneeling position over the side of the bed, instead of sitting on the bed.

The bleeding continued, although it eased up a bit. When my husband got home from work, I still told him I wasn’t up for going out tonight. I spent the evening continuing my studies for school.

By 7pm, my knees hurt from kneeling, even though I got up frequently or changed position a bit to ease the weight off the knees, and so I stopped sitting on my knees altogether. I got back on the bed to continue my reading, and stretched out my legs.

Sitting on the bed or the couch this time around does no good for my pelvic pain – it kicks it back up again. So I laid on my side until my arm and shoulder became painful, then I switched sides until the other side became painful.

By 9pm, I grew restless and stood up as I read my homework. I carried the book around, marching, stretching my leg out behind me, in front of me, one at a time. I leaned forward with my butt out and back as straight as I could. All of this stretching felt good.

The restlessness happens every month after I’ve been bedridden for a couple of days. It’s normal, of course. When the lull in bleeding and/or pain happens, the restlessness increases, and I get impatient.

I know that this is the calm before the storm. I know that The Last Gasp is coming. I know that I will be pain free with little to no bleeding for up to 24 hours before the pain and bleeding return again full force for half a day and then winks out until the next menstrual cycle. This is how it is with my period.

And so after two days of heavy pain and bleeding, here we are at that moment – the calm.

In my impatience to hurry up The Last Gasp, I stretched so much that I have the post-exercise feeling in my legs. The pelvic pain has kicked up to about a 2 on the scale.

But it seems no matter what I do, daring The Last Gasp to just get it over with already, just doesn’t work – it won’t happen on command. I swear to [insert deity here], I have in the past willingly in a dare routine, ingested corn-syrup-ladden beverages to try to provoke the pain and bleeding again, just to get it all out, done and over with. And it didn’t work.
I have jumped up and down to try to shake loose the debris inside my uterus. I have run in place. I have stretched as I did tonight. Nothing works. I’m in The Calm before the storm.

It’s SO bizzare.

George is in there, snickering at me, biding his time, and he’ll unleash The Last Gasp only on his time.

What a bastard.

And so here I remain in the Underworld. In Limbo. I’m not free to go, yet.

12:32am edit:
Around midnight, as I was telling my husband about the bizzare dream from last night, the bleeding, nausea and pain ramped up again. It had been six hours of relative calm before the next wave.

I wonder – me laying on my back around 10:30pm, bent over the side of the bed, performing fascia manipulation on my abdomen – did that help restore the flow and thus the pain and nausea?

I wonder – did the stretching I’d done earlier help to restore the flow and pain and nausea?

I wonder – me getting nervous and scared during the retelling of my bizzaro dream – did that stimulate a hormonal release and set the flow and pain back into motion, and with it, the nausea?

I wonder if it was all of the above.

I wonder if it was none of the above, and just that bastard george saying It’s Time…

Either way, now I have taken another half of a Tylenol 3 and 400mg Advil gel-caps.

As I wait for the meds to kick in, my stomach has started growling to let me know ooops, you took the meds on an empty stomach!

Wonderful. Please don’t let me also get a stomach ache. I’m gonna go eat something right now.

The Waiting Game (or, How Ovarian Cysts Mess With One’s Menstrual Cycle)

George is two days late. He was due Sunday. Because I always count the due date as Day 1, I’m going to say he’s actually three days late.

Last month, I was diagnosed with a .9cm chocolate cyst (endometrioma) on the right ovary.

A month before that, I was sure I’d had an ovarian cyst which ruptured.

Either that cyst did not rupture and continued to grow from March to April, and then from April to May, or I’ve developed a new ovarian cyst since April.

In either case, my reality is that I do have an ovarian cyst, which I can tell you about with my own authority and experience, and I can back it up with the ultrasound I had on April 21.

Before March 2010, the last ovarian cyst that I really felt and had complications with was in November/December, 2008. I suspected an ovarian cyst in October 2009, but I didn’t follow up on it in my journal, so I dunno if I had a cyst or not.

So my own authority and experience this time around matches up with my symptoms in November/December 2008 as well as my symptoms in March, 2010: during the current cycle, I was supposed to begin menstruating on Sunday, May 9, but george is nowhere to be seen. Instead, I began experiencing stabby right side ovarian pain on April 30, which has lasted to the present day.

Going back through my calender, I noted:

Monday, May 3 – left side ovarian pain started.

Tuesday, May 4, – sharp low uterine, upper vaginal pain – intermittent. Heavy fatigue throughout the day. Full uterine and ovarian (both sides) pain at a dull constant level throughout the day, rising to 4 at times on the pain scale. Took 400mg Ibuprofen at 8pm, took 400mg more at 9:30pm.

Wednesday, May 5 – Fatigue, achey, intermittent uterine pain

Thursday, May 6 – sharp pelvic pain – stabbing left ovarian, sharp intermittent low uterine pain. Uterine pain became constant by 2pm. Large hip circles earlier that morning to manage the pain were not successful.

Friday, May 7 – Constant low uterine cramps. Highly emotional all day, turning to high irritability by nightfall. Had food reaction – I suspect either the ‘smoked’ cheddar/mozz cheese or the marinara sauce on my gluten-free pizza.

Saturday, May 8 – Constant low grade uterine and ovarian pain. On ibu all day – consumed over 2,000mg. Still quite irritable.

Sunday, May 9 – George is a no-show. Moderate low back pain, on ibuprofen again but only took 800mg total and toughed out the pain. intermittent continued uterine and ovarian cramps.

Monday, May 10 – I didn’t record anything that day because I was out of the house running lots of errands after work til nearly bedtime to prepare for upcoming Michigan trip.

Tuesday (today) May 11 – Pinching/stabbing right side ovarian pain. Took 600mg ibu first thing in the morning, 600mg ibu around 2pm. Heavy fatigue all day. Mild to moderate intermittent uterine and right side only ovarian pain all day.

(side note: I’ve tried my gluten-free pizzas several times since May 7 and the only constant is the tomato sauce – all other ingredients have been changed up – so I bet my tomato allergy has caught up with me again after being dormant for years…just like my citrus allergy caught up with me again last October).

(another side note: I’ve only been to the gym twice this month, and I bicycled five times this month, with the last time being a week ago – May 4)

The ovarian pain, the low back pain, the fatigue – all of that is part of my usual pre-menstrual pain, but I also had vaginal pain and really tender/painful breasts and nipples this cycle, and THAT for me smacks of ovarian cyst.
Given that I knew I had a cyst in March, and a cyst was found via ultrasound in April, it’s pretty much confirmed for me that the reason why my period is late is that the cyst is still growing and causing problems.
I think the longest my period has been late during an ovarian cyst flare has been three days. So george should therefore be here by tonight or tomorrow.

Knowing that helps me not to freak out so much, cuz by last night I was freaking out in the most irrational ways:

  • OMG what did my acupuncturist do to me last Thursday – she did so good that not only do I not have massive pain, I am not bleeding at all!
  • OMG I’M PREGNANT!
  • OMG MY WEEKEND IN MICHIGAN IS RUINED – I’LL BE BLEEDING AND IN HORRIBLE PAIN ON THE PLANE AND IN MICHIGAN DURING THE PLANNED PARTIES AND CLUB NIGHTS!
  • OMG IS THIS WHAT ADENOMYOSIS DOES?
  • OMG I HAVE CANCER!
  • OMG I HAVE NO IDEA WHAT IS WRONG WITH ME!

 
I’m much calmer today after reading up on ovarian cysts again, and going back through my journal entries on my previous cysts. I’m falling more into acceptance with what is happening, and adopting the ‘This too shall pass’ mentality.
I’m still pissed off that my weekend plans are likely ruined, but the truth is that these things can easily be rescheduled before I fly back to California.

I’ve never flown on an airplane during a my period, and my period is ALWAYS a nightmare of pain, so this should be interesting. :(

T-minus 6 days…

The pain began on Friday, April 30 and has been a thorn in my side ever since. It’s ovarian pain, and until today it was centered on the right side. Now it’s both sides. The pain has been intermittent and stabby for the past four days.

What really ticks me off is that for the past week, I had been trying to omit sugar from my diet again. I had gotten down to one small serving of something sugary per day, but this only lasted for four days before the PMS set in.

Once the PMS sets in, I am no longer in control of my body. Seriously, it’s like this giant alien bores into my skull and directs me to eat and drink as much junk food as possible.

I had been working out in the gym – I started going to the gym again on April 27 for the first time in 41 days. I went to the gym again on April 29, and I also biked to work that day. I took Friday off from the gym, but bicycled 10 miles around the island on Sunday with my friend. The weather has been sunny and warm, and so bicycling has been a priority for me again.

Despite all this exercise, the massive sugar cravings set in on Friday, April 30, AFTER the ovarian pain set in. I need to note that for myself, so I don’t go off on one of my guilt-ridden tirades against myself again, saying that eating this or that CAUSED the pain. It didn’t. I gave in to the sugar cravings by nightfall, and had three scoops of sugar in a giant mug of caffeinated tea.

Oh yeah – the caffeine cravings – those set in a day or two earlier than the sugar cravings did last week.

I spent the entire weekend drinking sweet coffee drinks – mocha being the drink of choice. I used my almond milk on one out of three occasions, instead of cow’s milk.

The worst offense possible to myself is when I willingly cracked open a can of Coca-Cola we still had in the house from a long-ago house party. I drank half of it, and savoured every moment of it, before forcing myself to dump the rest down the sink drain.

Today I even failed the sugar restriction at work. I was thirsty and had neglected to bring my water bottle with me, so one of the kids offered me a Capri Sun juice pack, which was left over from snack. It was wild cherry flavour, which thankfully no longer contains high fructose corn syrup. It has lots of juice concentrates and sugars, which are still bad for me.

When I got home from work, I gorged on the last bit of chocolate I could find in the house, and ate it with a bag of pop-chips.

I could be in denial about PMS with all the coffee I had drank this weekend. I could be in denial with the ovarian pain. I could be in denial about feeling like I’m out of breath even by simply bending forward to pick something up or walk more than half a block down the street.

But once I’m sitting there eating chocolate and salty potato chips together in the same mouthful, there’s no way I can remain in denial. Well, that and drinking the Coke yesterday…yeah. I’m fully aware that I’m severely premenstrual.

George is due no Sunday, May 9. He was a day late last month. At the rate I’m going this month, my bet is that he’ll be up to 3 days early.

That means I have to have my house in order and my meals laid out before Friday of this week.

I’d like to also note that the inner-thigh-based nerve inflammation pain has just started – right now.

I just looked up a list of inflammatory foods I should be avoiding. Of course, it’s stuff I already know I should be avoiding. ;)

Living With Rheumatoid Arthritis has an article on inflammatory foods.

The Conscious Life has an article on inflammatory foods.

Here is the rundown:

No Sugar

No Cooking Oil

No Trans Fats

No Dairy Products

No Feedlot-Raised Meat

No Red Meat

No Alcohol

No Refined Grains

No Artificial Food Additives

No Chemical Sugar Sweeteners

No Table Salt

No Nightshade Vegetables (egg plant, potatoes, tomatoes, peppers)

I just added the italicised no-nos to my No Fly List (since I already have the others on my list).

6:49pm Edit I am literally waddling. I feel like I weigh 250 lbs (113 kg). I am SO tired after doing one thing, such as putting the dishes away or wiping the counter down. I have to keep resting. I’m out of breath. My legs feel like lead. Ugh. :(

Sunday was both painful and productive

Sunday upon waking, my entire back down through the pelvic region was in so much pain that by the time I crawled out of bed, I was nauseous.
There had not been any bleeding overnight – it was completely gone, even upon waking, so all I was dealing with were cramps, but I knew better.

Normally, I need to eat right when I wake up, but because of the pain and nausea, I went right into the bathroom, cleaned out the tub (which ironically helped to loosen my lower back a bit), and filled it with hot water, epsom salt and lavender bubble bath.

I didn’t eat until two hours after waking, and only when prompted by my husband, who made me a yummy cheese and mushroom quesadilla.

Within an hour after eating, I got nauseous again, my body felt like a hot flash had come on and I stripped off my sweatshirt. When I got up out of bed, I felt a gush. I had something big to pass – I could feel it (which is a mighty gross feeling, lemme tell ya).
I began doing the slow large hip circles to get the pelvic region moving, until of course the pain became too much to bear and I stopped. I took half a Tylenol 3 and 600mg Ibuprofen, and went and sat out in the backyard to get some sun, because I was feeling so gloomy.

I stayed in limbo with moderate bleeding for just over two hours, and then another huge surge of pain swept over me just before 3pm. Now, I was already on half a Tylenol 3 for the bad lower back pain and the first surge of pelvic pain that day, but I scrambled to the bathroom and took an entire Tylenol 3 to add to the armaments needed for the big fight.

I basically spent most of the day in bed, drugged to the gills once again.

Sometime in the early evening – my husband suggested we go for a walk around the block, since I was being so bitter about missing sunny days to the pain every month. We shuffled on for .8 of a mile, but by the .6 mile mark, my legs were ready to give out from under me, because of how weak and tired I still was from the endo. My husband wondered if my adrenal glands are considered to be under attack each time the endo hits, because of a discussion someone had at work – saying that when the adrenal glands are suffering, a person can feel really weak and tired. I told him I’m sure my adrenals are under attack, as I’m pretty sure they’re part of the endocrine system, which the ovaries are also a part of. I told him it is an interesting thought, and that I shall have to see what research studies and medical papers are out there discussing the adrenals and endo.

When we got back from our walk, I had to get right back into bed I was so exhausted. I spent the rest of the evening finishing up a site redesign I promised myself I would do during this endo downtime. The result is a new look for my Living With Endometriosis main site. Hopefully more navigable and less cluttered!

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Today I was hesitant but I went in to work anyway. I was in a lot of low back pain for much of the day – it began easing up the more I moved around, thankfully. So I got through today on 600mg Ibuprofen alone, and I’m back to spotting. Barring no further bloody cylon attacks tonight, I’ll declare tomorrow the official setting of the clock for next cycle countdown.
Tonight I have some laundry and dishes to do, so I can’t just crawl back into bed, much as I want to. I’m so exhausted.

I had 10 good days!!

I’m so excited! I went TEN WHOLE DAYS WITHOUT PAIN!!!

I didn’t even feel mittelschmerz this month!

Here’s what I did with the healthy uptime:

March 28-31 – I got stuff done around the house, and went to work and ran errands – just the usual.

Thursday April 1 –       I saw Assemblage 23 in concert.

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Friday April 2 – I went dancing.

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Saturday April 3 – I went dancing again!

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Sunday April 4 – I rested, ate gluten-free pizza and watched the street flood from a rainstorm.

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Monday April 5 – I went dancing *again* but by this time, my knees were mad at me and my body in general was really starting to get fatigued.
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Tuesday April 6 – I didn’t have to work until 11am because it’s spring break week, and a lot of us aren’t on a full schedule this week. Our landlady was having our windows replaced, however, so the first part of my morning consisted of me walking around in a dust mask because it had become too hard to breathe with all the construction dust.
Health-wise, I realised I was beginning the downward slide – I began to feel bloated, and experienced mild, intermittent cramping. My knees continued to hurt from all the exercise I’ve been getting. ;)

 
Wednesday April 7 – I didn’t have to work, so I spent half the day hunting down dark humour comics to put on my website.

I then went to another concert – I saw Faith & The Muse and Sunshine Blind – two bands from the 1990s that I adored, and still do!

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Faith & The Muse
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Sunshine Blind

 
I finally remembered to wear my knee braces, and that helped a bit with the knee pain, but within a couple of hours at the club, my lower back got angry with me. I popped a half of a Tylenol 3.
Halfway through the Faith & The Muse set, I was near tears from low back pain and mounting pelvic pain, but I stubbornly refused to walk off the floor.
During one of the brief exits by the band, I popped a whole Tylenol 3.
By the time Sunshine Blind took the stage as the special guest band, the drugs were starting to kick in, which allowed me to enjoy the show and dance a bit.
The dancing of course made the cramps angrier, and by the time we left the club, I was grunting in pain again.

This morning I woke groggy and went to work – another 11am start time, thankfully. I have been super tired for most of the day, and I have had intermittent stabbing uterine pain. I have not taken any more medication, but I will do so before bed.

One thing I realised that might have set off my pelvic pain is that since I’ve been going out to the clubs so much, I’ve been ordering Shirley Temples to drink. I wanted to have SOMETHING to drink because I have omitted alcohol from my diet – I’ve been dry for 98 days! :)
But that something has corn syrup in it. I knew that and drank it anyway. Either it’s just downtime again or the corn syrup in all those Shirley Temples over the past week have instigated early cramping. So now I go back to only water, or finding some other beverage to drink at the clubs. I learn from it and move on.

So that’s my update – overall it’s been awesome and my only regret is the poor choice of beverage with all my recent outings. I’m SO glad to have had a combination of good health and later starting hours at work to allow me to go out as often as I have been. :)

Oh! And my weight is down to 159lbs!

Set the clock: 19-22 days

So it’s official – I have re-emerged from the underworld to enjoy life once more, for about 19 to 22 days, hopefully consecutively.

After whining about missing two parties Saturday night, I ended up attending yet another party via Skype. My friends in Michigan were having a party and so I chatted with them first on IRC and then on Skype so we could do video/voice instead of chat. :)

And then after that, my husband decided he was going to head over to one of our local friends’ parties, so I said ‘hang on’ and quickly changed out of my pajamas. I was still on Tylenol 3 Saturday night for the pain, though the bleeding was subsiding again. I took it easy at the party, which appeared to be winding down by the time we got there, anyway.

On Sunday, my husband did not have band practice or game night scheduled, so we decided to hang out together and do something other than housework, which we hate. I was feeling much better, so we decided to go for a hike. The walk we’d taken on Friday had struck something in me – I was determined to really get the ball rolling on taking back my body this year – so having lived after going for a walk during the throes of endometriosis, I decided that coming off of all that pain, we’d go hiking. I wanted to be near the ocean, since it was still brimming with energy after the horrific earthquake in Chile had triggered tsunami advisories and warnings.

My husband mapped out Muir Beach, and we headed out.

Of course, that’s when the bleeding and cramps decided to return.

Determined, I loaded up on 600mg ibuprofen gel-caps, extra pads and water, and off we went.

Once there, I was super relieved to know there were portable toilets on site, cuz I really had to go. I wondered if this might ruin my hiking experience if my body was going to keep bleeding and cramping and doing the “i really gotta pee” thing every half hour or less.

Still determined, I used the bathroom and we set off on our hike, no turning back.

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I walked reeeeeeally slow and was out of breath almost immediately. I was afraid I wouldn’t even make it to the top of the first hill off the beach, much less try to complete the entire hiking path. People of all ages, including the elderly, passed me as though I were a turtle.

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I remarked to my husband that I wished I’d worn my yellow shirt for endometriosis awareness, or a shirt that reads, “I have an incurable debilitating illness”. I felt like I owed people an excuse for why I was so slow. I felt like every person who passed me was judging me. In fact, one yuppie couple did judge us as they passed us. They were talking about fat people and not being in shape and all that, and as they passed us, they stopped talking about the subject. I wanted to yell out HONEY! I SURE AM IN A LOT OF PAIN FROM MY INCURABLE AUTOIMMUNE DISORDER, BUT I COULD GO FOR A HOT FUDGE SUNDAE RIGHT NOW!

heh…maybe next time I’ll be openly snarky.

Throughout the hike, my husband asked me if I needed to stop and rest. He was very patient with me and did not get too far ahead of me at any time. He encouraged me the whole time, despite my fears and insecurities about being able to go very far.

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When we got to the top of the next hill, we got an amazing view of the cliffs and the ocean. That’s when I got my courage and strength.

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I think we went two to two and a half miles all told, and as the sun was really beginning to set, I told my husband we should turn back around. We had been looking for Pirate’s Cove, but hadn’t found it. I was sad about that, but at the same time I was so proud of myself for how far I had come. On the way back, I had bursts of energy that had me nearly running down the path. Then I tried to leap over a muddy spot, and jarred my pelvis at just the wrong angle, and it set off intense cramps.

The rest of the hike back to the car was painful – I had to urinate, my pelvis hurt, my legs were beginning to shake nearly uncontrollably, and I was getting very cold.

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But we made it back! We did it!

We were both so happy to get back to the car – even my husband said he’d gotten quite a workout. I had to pop 600mg more of ibuprofen gel-caps and a half of a Tylenol 3.
To celebrate my awesome trek after having been bedridden 24 hours prior, my husband took us to The Melting Pot, where we ate ourselves into a coma.

TAKE THAT, YUPPIE HIKERS FROM HELL. :)

Small victories where they can be had

I just went for a slow 1.5 mile walk with my husband! I haven’t been out of bed due to the pain in 2.5 days, so this is a HUGE accomplishment! We were talking about what to do after dinner, and my legs were restless and twitchy. I began doing slow stretches and my husband said he’d be up for a walk if I was.
It took awhile to get some street clothes on, since I’ve been in pajamas for the past two and a half days. I was winded just putting clothes on, so I felt a bit nervous about venturing out. I took my water bottle with me, and my medication.

We walked down to the beach and stood looking out at the water and the San Francisco skyline. We watched planes coming in for a landing at Oakland airport. After standing for a bit, we walked along the recreational trail just off the beach, and then cut through the shopping center to come back home again. I’m seriously exhausted, some of the pain returned on the walk and I had to take a Tylenol 3 (plus, it was time for my next dose), and my legs wanted to stop moving one in front of the other for the last half mile, but I did it!

Now I go to bed. :)