I Will Not Suffer In Silence

I was couch-ridden for three days during the August cycle; Saturday, Sunday and Monday. What made it more convenient for me to not push my limits this time around was the fact that my husband was away at a game convention. Normally on Saturdays, we bum around town running errands or just being out of the house for fun. Because he wasn’t here, I not only lacked the desire to be out and about, but I had no one to drive me around while I was all medicated to the hilt.

Had my cycle fallen during the work week, I would likely have missed THREE days of work. Thankfully, it fell on the weekend again. So in the grand scheme of things, I’m still getting lucky so to speak.

I woke up Tuesday morning unsure of whether I could go in to work. The bleeding subsided overnight again for the second night in a row. Unlike Monday when I woke and the bleeding and pain resumed, on Tuesday there was no such mess. Figuring Tuesday was “Last Gasp” day, I thought that if I did go in to work, I’d maybe get two or three hours in before I’d have to go home in grave pain again. But I called work, cleared it with the director, and went in. I chanced it.

And you know what? The Last Gasp never happened! Or rather, perhaps it did, because a little bleeding did resume during the course of the day, but the pain level never got above a 4 the entire day! I did require 1,200mg of Ibuprofen in an 8-hour time frame to get through the work day, but I did NOT have to come home early in agony! This to me is simply amazing!!!

The bleeding tapered and stopped by late afternoon.

My husband took me out to sushi and ice cream last night. :)

This morning, I’m back to feeling uncertain again. I’m still spotting, and I had an uptick in hormonal hot flush and nausea again before breakfast. Because I feel like I got away with something yesterday (no ‘last gasp’), I am now worrying that today might be it, even though it’s not logical according to the ‘usual’ behaviour of my cycle. I should technically be home-free until August 31st.

We’ll see. If I make it through today, then I’m golden for sure.

On Sunday, July 31, I was driving with my husband when suddenly my lower back screamed in agony, leading me to cry out in a high-pitched wail mid-sentence. The stabbing pain lasted less than 30 seconds and was gone without a trace. What the hell!?

The very next day, PMS set in just over a week before I was due, in the form of Cleaning All The Things™Allie Brosh. The day after that, I got left side ovarian stabby pains, which lasted for two straight days. I ate a lot of Ibuprofen.
At this point, I knew the party uptime was over. I actually became quite depressed about this.

Befuddled by my depression, knowing I have dealt with this illness for almost 26 years now, I wrote the following:

Dear Steph:
You must acknowledge that you have entered Downtime. You are not lazy, you are not slacking - it is just time to go. You cannot fight this. You are Persephone. Just go to the Underworld quietly and do your time, as you have done for two and a half decades. You will emerge again - you always do. Stop thinking diet or depression or laziness might be bringing on the pain. It’s none of that. Just go under and do your time. Look out the window or go outside and enjoy the sunlight for one more day, but mark my words, by the end of today, you will either go of your own power or I will take you forcibly. Stop whining - you’ll be back by Monday. Sheesh. Be thankful that it’s only a cumulative of 3 months out of every year you spend in the Underworld. It could be consecutive. You don’t want that, do you?
-Hades

Still getting left side stabby ovarian pain, and having struggled through a hypoglycemic morning, I got my ass up off the couch and said, “FINE! I will go and enjoy the sunlight for one more day, you bastard!”
Well, I said a lot more cuss words than that, but you get the point.

I put on some sweats, a tee shirt, bicycle arm warmers, knee braces, bike helmet and off I went for a bicycle ride while my laundry was washing.

Here's me telling endo what it can do with itself.

Foeniculum vulgare (fennel), a pretty but invasive plant on our shoreline, along with Spartina alterniflora x foliosa (smooth cord grass), another horrible invasive, in the background.

My highest speed that day was actually 17 M.P.H. -pretty good for one on the verge of an endo flare.

After two days of stabbing pain, I then spent the next four days dealing with hypoglycemic attacks while my body went down the drain hormonally.
Despite all that, I still managed to exercise every day that week leading up to menses. I weight-lifted, I did aerobics, I bicycled, I cleaned house like a rabid meth fiend. After the bicycling, I got nauseous and weak in the way that only I know means it was pre-menstrually-related.

On Friday, August 5, the vaginal mucosa turned pink, and I knew the do0m was upon me.

So naturally I went dancing.

I wanted to go out to a club, but I could not predict how rapidly my body might go downhill, and besides, I’m flat broke financially after the traveling I did this summer, so I stayed in and held Club Steph:

Club Steph: A Gothic Nightclub Of One, held irregularly.

In short, I went to the underworld to do my downtime kicking and screaming, like I always do. After dancing, the nausea set back in. Nausea has been big during this menstrual cycle, making me think I have another ovarian cyst.

Regarding the kicking and screaming…before my second surgery even happened, I had regressed to a crying, sputtering three-year-old, throwing a fit every time I was about to go into downtime again. After 25 years, I’d just had enough of it. I was no longer stoic, I was no longer accepting of my fate, or even willing to work with what uptime I had each month.

I had a lot of hope that the second surgery would give me more uptime, and you know what, IT DID, but not enough so that an employer would notice. This is what keeps my stress level up - the fact that I know there was some benefit to both surgeries to my quality of life, but yet it didn’t make enough of a difference to employers. I had to call in sick today, and I wonder if I’ll be well enough to go in tomorrow. This of course makes my employer unhappy. She has stated to my face that she is concerned about putting me in a head teaching position because of my illness. Because she has not denied me of the position yet, I cannot take action. Because all of her discriminatory remarks as regards my illness have been verbal, I don’t have much solid proof of things to take action with, and so I am in a constant state of mental anguish and a feeling of gross job insecurity.

In order to feel a bit more justified and dignified, I went back through the past five years’ worth of data on my menstrual cycles. It looks like it wasn’t until December, 2008 that I caught on to the idea of trying to pinpoint when mittelschmerz was happening.
Though I had caught on to the idea of tracking my uptime between cycles in November, 2007, it remained an abstraction. It wasn’t actually until August, 2010 that I actively employed this tactic on my calendar.

We already know that my first surgery in 2007 barely helped me in the grand scheme of things. Sadly, I did not have the tracking discipline that I now have going on, and I use the term ‘discipline’ loosely.
All I remember from the 2007 surgery is that it felt like I gained a week of uptime back in my life each month. This means that instead of getting pain and other symptoms two weeks before menstruating, I was, after surgery, only experiencing pain a week to a few days before menstruating. This meant that my uptime between cycles had lengthened.
Once menses hit, however, I was still bedridden every month and missing work. That part hadn’t changed a bit.

I wanted to find out if my second surgery fared better, so I have spent the last two days going through my calendar and my blog posts to gather data. Again, record-keeping was crappy in 2008 and pretty much non-existent in 2007 going by calendar alone, so I just focused on the past two-and-a-half years’ worth of data.

You can see immediately that surgery provided benefit where job loss and uptime is concerned. The fact that I’m still missing one day of work per cycle is still troubling to my employer of course, but dammit, I’ll take what I can get. Check it out:

It’s not much, but it’s what I have to work with. And I did all this data compiling while stoned out of my head on Tylenol 3. Too bad I am completely useless in my current line of work when I’m on the Tylenol 3. Maybe I should just go back to tech work and find a job working from home full time.

One last thing that is very important to note for my morale:

I had my second surgery in December, 2010. Upon recovery, I was not bedridden from endometriosis in February, March, April, May or June. I was couch-ridden from the pain in July and August, but there has been moderate nausea with these last two cycles, and as I keep saying, I think there’s an ovarian cyst going on, on top of the endometriosis. But I have not spent 12+ hour days in bed in my pajamas with the heating pads on me at all hours of the day and night like I used to before surgery. This is a vast improvement over the first surgery I had in 2007.

There is still hope that my condition will improve. I just need to get back on track with the dietary restrictions. I lapsed from May onwards due to graduation, travel to see family, and general summertime fun. I need to cut sugar and alcohol again. It will be difficult. I will cry again. I will wail and gnash teeth over it like I did last time, but I’m doing this to further the benefit of surgery.

My husband had woken me up about two hours after my last journal entry, to say he was going to take off to game night, unless I needed him to stay with me. I pleaded with him to stay. He said he would, but that he just didn’t know what to do if I was going to spend the rest of the day sleeping.
I told him that made me feel guilty - that he should just go to game, then.

It was clear he didn’t want to leave me alone, but he didn’t want to not be with his friends. It took me about 20 minutes or so to rouse myself out of my pain and pain medication stupor, but I told him “why don’t I just go with you to game, then?”

He liked that idea.

We collected my heating pads, my meds, the laptop in case I wanted to blog or attempt any homework, and two books; one for school and one for pleasure.

We got to our friend’s house and to my dismay, it smelled like smoke. I have a smoke allergy/chemical sensitivity. I was grouchy at my friend C - “WHY DID YOU SMOKE IN YOUR HOUSE.”
C replied, “Yeah but that was hours ago.”

I resigned to my fate - I was stuck here. My husband was already setting up the kitchen table for game night.

I was told where I could make myself comfortable, and I was told that a friend J, who lives in that house, was downstairs with a burst ovarian cyst. I didn’t want to disturb her unless I heard her crying out in pain, so I stayed upstairs in my own little world of pain.

I tried to heat up my heating pads, only to be reminded that they do not have a microwave in that house. I was directed to a big heating pad and was allowed to use that.

The offending smoker friend also helped set me up on his wireless network, but the moment I was set up, I was suddenly exhausted again and so I put the laptop away. I couldn’t even keep my eyes open long enough to hold conversation with anyone, watch TV, or read a book.

A third friend, also named J, who lives in that house, was also not feeling well. He sat in the living room on his laptop the entire night. He’s had spinal cord injury and had surgery after surgery to cauterise nerves. He thinks nerves are growing back or something, and is in a lot of pain again. I gave him one of my Tylenol 3 because he did not have any Norco on him.

At one point, around 8pm, the stabbing right side ovarian pain returned. I ended up on the floor, moaning in pain, rocking to and fro, with the heating pad. I was on all fours, then on my back, and then I settled into an arm chair w/ ottoman for the rest of the night. Their crazy cat October decided to be nice for once, and curled up on my tummy and purred all night. I was told she only likes women, and likes women best when they are in pain - that is the ONLY time that cat is nice.
Crazy cat.

So, the pain I had on Sunday lasted through until after 10pm, despite the fact that the bleeding had subsided again. My abs and ribs still felt bruised all that day.

I got home, showered, changed into my bedclothes, and went to bed.

Woke up Monday morning pain-free and got ready for my first day back to work. I was still spotting a little. I decided to try riding my bike to work, but as I went out the door to go to work, the pain set back in, and so I abandoned the bicycling idea and drove the measly one mile to work, instead. Glad I did. I needed my energy at work to move stuff around and help set up for the new school year.
I required a total of 800mg Advil to get through the day.

Got home and was very tired, but went on to my psychology appointment. I’m seeing a shrink again ever since I had a major depressive episode at the end of July. I’m still trying to figure out if it was JUST all the stress I have been under from school and finances, or if the Cannabidiol I tried for pain management set off an even worse episode of pre-existing stress and depression.
I evened out by August 18, but that was three weeks of pure hell from one menstrual cycle right up into this next menstrual cycle, which started on August 19. I am still on anti-anxiety meds (ativan).

I spent the rest of Monday evening hanging out with my husband, making and eating dinner, and watching TV. No homework got done on Monday.

Today is a new day - I start the clock so to speak - I have 21 days til next bedridden. Today I will go to work (not sure if driving or biking yet - it’s supposed to be in the 90s today so I guess biking would be better on the ozone), and when I get home, I will force myself to do some more homework.

In about 8 days, I will have Mittelschmerz - so the middle of next week - the first week the children are back to school. Hopefully it will go easy on me while I navigate my first week in the classroom.

One last thing - about last week sometime, I developed a cough again. So this is the second virus / cough since July 18 that I have caught. And now I’m going to enter a new school year with preschoolers. I expect to be sick continually in one form or another until December. I am pounding Vitamin C and Zinc and all the rest of my supplements, and will be back in the gym by no later than Thursday this week, once the heat wave cools down. Today is Day 2 of the first heat wave of the Northern California Summer.

The pain and bleeding stopped overnight, so this morning I got up, made breakfast with my husband, ate, got dressed, and went to the weekly Alexander Technique pain management class today at the dispensary.

While in class, we are told to stand up, sit down, stand up again, sit down, etc. We are showed how to move our body in more natural alignment, rather than moving always in protective or preemptive mode because of the pain.

I had just sat back down, and I felt a trickle. I’d been in class for about 15 or 20 minutes at this point. I did not get up and rush to take any medication, however, because the instructor hates pills and the whole purpose of this class is to show us how to move in ways that lessen the pain. So I sat there, and the pain began to ramp up.

And well, I was sobbing within 10 minutes of the trickle.

No position the instructor could put me in would help. I laid on my back, and the instructor showed the whole class - they all (there were six of us plus the instructor today) had to lay on their backs.
What is interesting is that everything he was showing them, I was already doing on my own; open up the shoulders. Open up the pelvis. Put both legs down on the ground. Make the back touch the ground fully. Release those muscles.

The tears streamed down my face when the next pain flare hit. The instructor came over to me again and tried to help me by taking my left leg, bending it, and pushing it up towards my chest, very slowly. I told him that hurt a lot in the pelvic region. He then showed me how to put my right leg up, left leg back down, and roll over onto my left side. Then he had me get to all fours, then bring the left leg forward to use to push myself upright. I wailed and tears flew, and he helped pull me gently to my feet and let me sit in a chair for the rest of the session.

After the class, he said it is rare to have someone in that much pain coming to his class. I told him I’d been bedridden this weekend, and knew that today would be a respite for a few hours before the next pain wave hit. He told me ‘ahh so you took a chance’. He told me I was brave. He thanked me for coming out despite the pain, and said he hoped to see me again next week.
I thanked him for being nice and caring and helpful.

I got outside to my car and called my husband, but he was not answering his phone. I assumed he either left the house without his phone or was in the shower. Either way, though, it made me upset, because I needed him.

I stood there for a few minutes, gathering myself, and then slowly got into my car and slowly drove myself home. I experienced the usual burning sensation of pain in the pelvis, and occasional stabbing pain which made me grit my teeth all the way home. I sat hunched and to the right side because of the pain. Every time I tried to lean back in my chair and open up my shoulders and chest and straighten up, the pain was worse.

When I got within three blocks of home, my husband called me back and apologised; said he’d been in the shower. I asked him to meet me out front to help me get out of my car, and he did. He asked if the pain had come back during the class. I said yes, and he gave me a big hug.

I got in the house and was medicating with 1.5 Tylenol 3 and 600mg Advil, when the next wave of pain hit. It was knifing and in the right ovary. I nearly dropped the bottle of Tylenol 3 into the sink. I clutched the bottle and the sink and sobbed. Tears poured from my eyes. My husband stood there over me to support me. He took the medication from me and steadied me. He opened up the Advil so I could take that medication.

After several minutes of sobbing, the pain eased off, and I said I needed a moment alone in the bathroom. I knew I was passing something. Sure enough, several thick, dark clots had come through. The colouration was nearly brown, the red was so dark.

After that, I got the heating pads and sat in the hard kitchen chair. My husband was close to me the whole time, hugging on me, braiding my hair, talking with me.

In all, the horrible pain lasted roughly an hour and 45 minutes.

I’m doing better now that meds kicked in and I have two heating pads on me. I am still bleeding moderately and passing clots.

I was in less pain bleeding profusely on Friday and Saturday. Today is easily the worst of the pain - I definitely hit 9 on the pain scale today.

And now the meds are taking me under. I must sleep.

Yesterday’s running thought was, “I cannot for the life of me believe that this much blood can keep coming out of me.”

The flow is usually heavy for several hours, then it dies down.

It never died down yesterday.

I turned in for the night after midnight and was still bleeding heavily and whimpering in pain and had nausea. My abdomen and stomach muscles all feel like I’ve been doing situps.

Actually, that may be true…yesterday was the first day I forced bedrest for much of the day, rather than continue sitting in the hard chair in the kitchen. Although it was easier on the pelvic pain to sit in that hard chair, I wanted badly to be under warm blankets and SLEEPING. So I forced the bedrest. Once in bed, I was restless and could not sleep for very long - due to the pain - so I kept sitting up.
Going from prone to sitting up uses the abdominal muscles. Perhaps I strained myself.

Or perhaps I’m bleeding so much that it’s “normal” for my abs to feel all bruised like this. I don’t know which scenario is true, and whether I should be concerned/scared…but the emotional truth is that I am really scared.

I woke up a few times during the night to go to the toilet, and even in the wee hours, I was still filling the bowl with blood - and also big clots. I kept saying to myself, “It’s never this heavy for this long. What is wrong?”

Both my gynecologist office and my local doctor herself called me back yesterday to tell me that all this bleeding is NOT caused by the endometrioma on my left ovary - that the ovary itself does not produce blood - that the bleeding is caused by the shedding lining of the uterus - that it must have just been extra thick lining this month.

And yet, every woman I’ve talked to who has dealt with ovarian cysts and/or endometriomas has said that they have encountered super heavy bleeding. My online friend V said she went through FOUR pads in one hour a few days ago!!! She also has an endometrioma.

Also, Mayo Clinic, the U.S. governmental Women’s Health page, and wikipedia all tell me that abnormal bleeding can be the result of having an ovarian cyst and/or endometrioma. These sites even mention the ‘bruised ribs’ / ‘worked out abs’ feeling I am experiencing - as being ‘normal’ for one who has an ovarian cyst or endometrioma.

So my endo sisters and the Internet ease my panic and fears over all this heavy bleeding, while once again, my doctors dismiss my experience.

I woke in pain at 7am, after emotional dreams. My best friend from high school and my best friend from back in 2002 - both who left me - was morphed into one person in the dream, and she was re-establishing contact with me to introduce me to her wife and show me her toddler son. She had been uneasy about this little reunion, because she thought I’d be mad at her for coming out of the closet, since I’d had a crush on her and she’d spurned me. I just wanted everything to be okay between us again. It was very awkward and emotional.

Anyway, I got out of bed and went and stood in the kitchen eating some food so that I could take more medication without running the risk of a stomach ache. I took an entire Tylenol 3, 600mg Ibuprofen, and .5mg Ativan.

I cannot remember how much medication I consumed yesterday. I think it was a total of three Tylenol 3 pills in a 14 hour period, and 1,200mg Ibuprofen, and .5mg Ativan.

My pain yesterday never got below a 7 on the pain scale, and was often hovering near 8. I need to also note that I’ve had annoying ‘growing pain’ type pain in the left leg all throughout this cycle.

In graphic terms, it would look like this on the Allie Brosh pain scale:

But when I woke at 7am this morning, still bleeding heavily and passing big clots, I became even more scared. I kept saying to myself, “The bleeding is supposed to have tapered off by now.” This put me in the Allie Brosh pain scale graphic of:

The drugs have kicked in, so I’m going back to bed. I lose another productive morning to the pain. I hope I do not lose the entire day like I did yesterday. There’s so much homework still to be done. I return to work on Monday. I had completely hoped I would have all of my homework done by the time I returned to work. Because of my emotional meltdown at the end of July and into the first three weeks of August, and because of the endometriosis pain last cycle and this cycle, I have lost MANY DAYS of productive homework time.

I hate this illness. I hate it. HATE. IT.

At 10:40am, I bled through a super thick fabric pad, super thick fabric liner, my underwear, down to my pajama bottoms.

This has never happened before - not with the doubled up super thick pads.

Forty minutes later, I checked myself again and I’ve already bled through the second thick pad and thick liner.

I’m on the line calling my GYN now.

…dammit…voicemail again. It’s always voicemail.

Called the local doctor and also left a message.

I’m getting faster, better advice from my endo sisters on facebook! As usual!

The answer is basically, “DON’T PANIC”, and also, big shocker, the doctors are full of crap when they say increased nausea and bleeding are not due to the endometrioma or any ovarian cyst.

Thank you, sisters. I don’t know what I’d do without you.

… just made it past the hour mark without bleeding through a third pad, so I think things are settling down.

I had it in my head that I have been experiencing nausea for the past month, even when I am not on my menstrual cycle, and that this must somehow be a new development.

Then I got word of the MRI results, saying I have cysts in my liver, kidney, cervix, and I have an endometrioma on my left ovary. I thought for sure the nausea had to be tied to one or more of those, but fixated on the endometrioma, because I recalled being pretty nauseated in the past when dealing with ‘regular’ ovarian cysts.

So yesterday I’d had enough of the nausea - it got so debilitating that I could not read my homework anymore. Friends on facebook asked if I’d contacted a doctor about this. Uh..no, I haven’t, heh! So I did.

My local doctor’s office - the on-call doctor of the day - called me back after 9pm last night, and I asked him if he could prescribe Cesamet, which I heard about through a Canadian endometriosis buddy a couple of years ago.
He said no, his office doesn’t touch the stuff. He went on to say he did not think my nausea is being caused by the endometrioma or the liver or kidney cysts. He said he has never heard of nausea being brought on by an ovarian cyst, and says he’s been practicing medicine for many years. He was condescending and talked down to me and was authoritative, and suggested something else is going on that I should get checked out for. He said I should come in for a checkup. In the meantime, he suggested I try taking peppermint tea or ginger tea for the nausea. I told him I’ve already done that to no avail. He then sent in a prescription for Phenergan. I looked it up and decided the side effects were once again worse than the problem, and so I will not chance taking the stuff. Remember that I am the person who hallucinates on Tagamet and could only handle 6-8mg of any SSRI medication at a time without severe side effects, and over the long term, I am *still* trying to recover from the two years I spent on SSRIs.

ANYWAY, so Phenergan is out.

This morning, one of my gynecologist’s minions assistants called me back, and I talked to him about the nausea. He was MUCH more diplomatic than the local asshat doctor. He said that their office does not have experience with prescribing Cesamet, and so he unfortunately could not help me with that. He also said it seemed unusual that I should be experiencing nausea with an ovarian cyst. He told me that he felt the endometrioma was way too small to be causing problems for me at this stage. He also doubted that the liver and kidney cysts could be stirring up nausea, but he suggested I speak with a gastroenterologist if I am still concerned. I thanked him for his time and we hung up.

Gastroenterology, eh? Well I’ve already ordered the liver and kidney detox supplements, and they’re on their way. So I’ll try that first, before hiring on yet another specialist.

Today, just to say I have covered all my bases, I contacted one of the two Cannabis dispensaries I am registered with under Prop 215, but they would not speak to me by phone, and said I’d have to visit in person or send an email. So I emailed both dispensaries to ask if they carry or can get Cesamet. No one is available to take me to the dispensaries today, and I’m in no shape to go out on my own.

I do not have confidence that the dispensaries can get Cesamet.

This leaves me wondering about the nausea. So I searched my own blog, and was frustrated to find that I had posted about this 98 times throughout the life of my journal! I went back and made a category for this one keyword, to make it easier for me to search next time. Ugh.

So what does this mean?

This means that the nausea is nothing to be alarmed by, whether it’s on cycle or off. I usually had this only on cycle, but apparently having nausea between cycles - it’s just part of living with endometriosis.

Go me.

I am truly frustrated and feeling at my wits’ end by having to continue residing in this meatsack. I feel I am reaching the bottom of the emotional pit this month. I hope that means that after today, the pain and bleeding will ease up, and I will be able to emerge once again from the Underworld.

Each month that I must pass through the Underworld, I grow weary of ever making it back out alive again. I fear that one of these days, I’m just going to give up and make it my permanent home out of sheer exhaustion with having to battle this illness.

First the catchup stuff:

June 20 was the worst pain day for shoulder, back and neck strain, then it became at least bearable for the rest of the week in through today.

June 22 - I was at Costco around 8pm when suddenly I was doubled over with right side stabbing ovarian pain. The intermittent stabbing lasted for over an hour and made me double over several times. It took the breath away from me. I did not medicate though. Also, I had low back pain all day - I felt very stiff.

I’d like to mention that I’ve also been having diarrhea after meals, lately. Even and especially with safe foods. It could be stress from everything. I dunno. I just need to note it, because normally I’m a very constipated person. I wish I could remember when it started, but it’s been going on for at least two weeks - usually one or two episodes a day.

Within the past five days, I have resumed taking two to four calcium/magnesium pills per day. This of course is not helping with the diarrhea.

June 23 - Yesterday - I was still experiencing left and right side ovarian stabby pain. It was still intermittent. My lower back was hurting a lot. It was hard to straighten after sitting or bending. Still having diarrhea. Also, I had my followup appointment with my new GYN (Giudice), and we went over the MRI results.

The appointment was about a half hour and was rushed because my GYN needed to be on a plane to some conference. I was originally scheduled to come in at 11am, then the day before, it was moved to 10am, then to 9am.

She quickly went over the MRI results with me and hit the big point - adenomyosis. She told me that based on the image, there is not any thickening of the inner uterine walls, so that rules out adenomyosis. YAY!

She told me I still have the chocolate cyst on my ovary, and said it is indeed an endometrioma, but she totally acted nonchalant about it, and said we’d continue to just watch it. She said she has no intention of going in and doing surgery just to remove that chocolate cyst, and she doesn’t see why I need another endometriosis surgery, either. She urged me to keep trying physical therapy and alternative health remedies and pain management instead of going the other three routes: hormone therapy, seizure medication, surgery. She referred me to the Osher Center for Integrative Medicine, across the street from her UCSF campus. I went and checked it out - they have a bunch of services I can get where I live and not stress the hell out by being stuck in traffic across the Bay Bridge, and then navigating the crazed lunatic streets of San Francisco. Thanks, I’ll pass on your lovely center.

I got home yesterday afternoon and before scanning my MRI results into the computer, I read over the report.

This is where the emotional wall collapsed.

The GYN didn’t think it necessary to mention that the chocolate cyst on my ovary GREW by .5cm within 36 days. I wasn’t sure how fast or slow endometriomas can grow, so I looked it up and it seems that endometriomas can grow very fast within a short period of time. In that regard, I think .5cm might be considered slow growth.

Fast or slow - it doesn’t matter - the sucker is growing.

I’m not used to dealing with an endometrioma. I have experience with ovarian cysts. This is new territory for me. It’s scary.

The GYN also didn’t find it necessary to tell me that while I don’t have adenomyosis, I DO have several small cysts in the liver, one small cyst in the right kidney, and several cysts covering my cervix.

WELL. I had a brush with high liver enzymes in 2008, and all the Tylenol 3 I consume takes a toll on my liver and kidneys, doesn’t it? I have been experiencing nausea and left flank pain well above the ovary ongoing throughout this month. I have been having diarrhea. I have had ongoing elevated temperature, reaching as high as 99.9°F.
All this time I attributed it to the ovarian cyst, but could it be from the liver cysts?

On top of all that, I have a recent history of cervicitis, and well, my cervix is everted, so why not add some cysts?

I looked it up and found that cysts in the liver and kidneys are not caused by Tylenol or medication, but in fact are often congenital and coincide with autoimmune disease.

Guess who has autoimmune disease?

I called the GYN office back and asked for clarification of the MRI report. Then I called up the Qigong practitioner I thought I wasn’t going to see anymore, and left a message for her. Then I called my local doctor’s office and got an appointment for today.

The GYN office called back after hours, bless their hearts, and the GYN’s assistant told me that the cysts are all nothing to worry about. She told me to follow up with my primary care doctor if I wanted to, though.

Today I did just that, and the primary doctor (Fredian) called up UCSF and spoke with a hepatologist in radiology, who looked at my MRI report, and told my doctor that the cysts in the liver and kidney are nothing to worry about, that they’re so small they won’t cause trouble or show up on a regular ultrasound.

However, Dr. Fredian wanted me to stop referring to the thing on my ovary as an ovarian cyst. She told me it’s much more than that - it has some solidity to it. Despite the common name ‘chocolate cyst’, this is actually a growing MASS on my ovary, and it should be closely watched. She told me the difference between this mass and a ‘regular’ ovarian cyst is that this cannot reabsorb.

This of course did not help my emotional state to make the conscious switch from the idea of a benign cyst to a nefarious growth.

The doctor concluded our appointment, congratulated me on not having adenomyosis, and sent me on my way.

My Qigong practitioner called me back today, and I went over the MRI report with her. She got quiet and pondered her words. She sounded cautious. She said I need to do a cleanse ASAP. She encouraged me to keep seeing the acupuncturist, but to try to go every week. She sounded urgent in addressing my health. This added to my anxiety. I got all apologetic and confessional by saying I hadn’t been eating right for a long time. Her voice still soft, she told me something like, “it’s much more than diet, you can’t feel bad about that.” Again my anxiety. Ugh.

But I came home and resumed my homework - I took another teacher training class last week and I’m still trying to finish the binder from that class this week. Yet another class begins this coming Monday.

Later this evening, I had my first acupuncture visit since about May 6th, and I showed my acupuncturist the MRI report, too. I told her of my fears of the liver and kidney cysts, despite what my GYN and primary care doctor are saying. I have all these symptoms - what if it’s connected?
My acupuncturist says it all IS connected, and that she will continue working on me to keep the blood moving (or as I choose to describe it, to keep flushing the lymphatic system). She’d like to see me every 2 weeks if I can swing it, but says every week is not necessary.
She also seemed to get very quiet after reading my MRI report, and also seemed very careful in choosing her words. I’m just a ball of anxiety over this.
The acupuncturist left the room and I closed my eyes to rest while the needles did their thing. The first visual image I got upon closing my eyes was a rectangular hole in the ground, decorated on the outside edges with a beautiful rectangular autumn leaf arrangement. My eyes welled with tears and I threw open my eyes and stared at the ceiling to try to get ahold of myself.

Funerals! Are you serious? Get a grip, woman!!!

The tears were perhaps a release of pent up emotions, and the acupuncture opening channels.
I’d spent the day matter of fact, blunt, even aggressive at times in demeanor. By early afternoon, I likened myself to Starbuck from the 2004 remake of Battlestar Galactica.

But by the time I was in acupuncture session, I was ready to sob.

I got home and tried to resume my homework, but the tears came. I sat there working at the desk as the tears just streamed down my face. I couldn’t stop them, and I refused to allow myself the time to just cry like a baby, because my husband was home, and I hate crying in front of anyone, even him.

I made myself a horrible vodka drink and sipped at it. It was so bitter, it helped stop the crying, heh.

I told you I wouldn’t be handling things well if the MRI report contained anything other than my usual endo issues.

So I was right on Friday - I was about to start any second. I began spotting by around 9:30am, and was surprised to see george two days ahead of schedule. I hadn’t had some of the other warning signs, such as change in mucosa or increased cramping.

The spotting was thick, sticky, and really dark reddish brown. Could be a by-product of the ovarian cyst, or it could be due to all the sugar and caffeine I’ve ingested since my trip to Michigan on May 14 - 23. The caffeine addiction was rekindled during the trip, as is often the case when I’m traveling, and so it was hard to break when I got back to California. I was able to transition from coffee to tea within a week, but I was still consuming caffeine. I had also been eating a lot of chocolate again, and my forehead and temples are paying the price as they always do; I look like a teenager again with all the zits. :(

Friday was unusually sunny - I thought it was supposed to rain, but the sun kept poking through the clouds and fog in large doses - enough so that I got sunburned on the face and neck again. I’ve been refusing to wear sunblock because the only tube I can find in the house has been some Neutrogena stuff that dries and flakes within minutes and makes me look nasty. I just read today that sunblock is pretty much useless, anyway.

I thought for sure that once the spotting started, the pain would begin ramping up, but it didn’t. I made it a goal to finish the entire work day, since I’d left early twice this week already (on Tuesday it was because a co-worker’s perfume put me into respiratory distress, and I went to ER, and on Thursday it was because I was running a 99.9°F temp and feeling really severely tired). I had to pop 600mg of Advil on my lunch break when the cramps ramped up to about a 4 on the scale, but I held fast to my goal and made it through the entire day, even working a half hour later than usual because they were short-staffed by one person.

When I got home from work, my husband, who had been home sick all week with some kind of chest cold, indicated he’d like to get out of the house for a bit. I suggested we take a trip to Costco. I was disappointed to see that they’re still not up on the gluten-free foods thing, yet.
Upon our return home from Costco, we grabbed some dinner at Everett & Jones (eh). When we got home, we were both worn out. I declared crippling fatigue, took a shower, swallowed 600mg of Advil and went to bed by 9pm (1,200mg consumed on Friday).

I woke around 5am with cramps, then went back to sleep til sometime after 7am, until I could sleep no longer. I’d had enough sleep and the pain was ramping up.

I suffered with nausea again this morning. I force fed myself a bowl of cereal with bananas, and the nausea increased.
I didn’t eat again until about 3 hours later.

Today I was able to load the dishwasher and manually wash some dishes that can’t go in the washer, and I was able to reassemble one box fan that I’d taken apart yesterday to clean. I drove us to Berkeley to get my sweetie some gluten-free cupcakes, but before we even got to the freeway, the cramps set in and ramped up. We made it to the bakery and back again, but I had to take half a Tylenol 3 and 600mg of Advil on the road for the pain, and I felt every damned bump in the road. I clenched my fists and gritted my teeth a lot.

When we got back home, I found out that the reason the pain ramped up is because the spotting finally turned into flow. It was still dark reddish brown, with lots of clots.
I took a full Tylenol 3 and spent the rest of the afternoon on the couch. I spent a bit of time today folded over a big pillow and the arm of the couch, as that was the best position for me. Same thing this evening, with heating pads added. Today’s rule has been; Sitting Good, Walking Bad.

I have ingested 2.5 Tylenol 3 pills today and I think 1,600mg Advil. Either 1,200 or 1,600, I’m not sure. I should always remember to write each dose down as I take it.

The pain has been at a 7 for much of today.

My brain is antsy but I’m forced to sit in one place. My joints are aching like hell, possibly from all the ice cream I’ve been consuming. I wonder if that’s contributed to my pain level today. I’m not normally so bad to myself, but the cow’s milk ice cream craving has been out of control this week. I have lactaid pills I take with it. Sure, the lactose intolerance is helped by the pills, but the overall damage done to my body by continuing to consume cow’s milk products is not worth it. By this afternoon, I finally convinced myself to stop eating the ice cream I’d bought.

Tonight, my friends Chase and Jason stopped by to say hello. We’ve not hung out in awhile, so it was good to see them, and they were the first visitors I had right after my laparoscopy, so they know what I look like when drugged and in pain. Plus, their sister suffers with endo (and maybe worse), so we talked about what she’s going through and her upcoming surgery this September. I hope my body cooperates so I can be there for her recovery. I feel terrible that I wasn’t there for my friend Patricia’s last endo surgery, because my body wasn’t cooperating. I was bedridden the week she went to surgery.

We also talked about neurontin, which my new surgeon Dr. Giudice wants to put me on. Jason has been on neurontin for the nerve damage in his neck, and it made him a total zombie. Another ‘NO’ vote. So far it’s been a resounding NO from everyone I’ve talked to. It’s the whole “treatment is worse than the condition” thing again.

I’m stupidly tired from all the medication, and well I’ve been up for 17 hours, so I’m going to bed again. I say ‘again’ because although I’ve been up all day, I haven’t been mobile enough to feel ready to go back to bed. I’m a medicated tired, not a ‘had a full day’ tired. So frustrating. Hence, the ‘wasted weekend’ feeling.

Tomorrow is already Sunday, but it will only be Day 2 of actual flow, and I’ve not even had a heavy flow, yet. I’m assuming I’ll miss Monday and possibly Tuesday unless I bleed like a stuck pig from dawn til 11pm tomorrow. Missing work this week is Not Good™, because it’s the last week of school, which basically is an all hands on deck sort of thing. I want the opportunity to see all my kids go through graduation (there’s one to two class/grade graduations per day this week). I’ve now worked with every single class; the 3-year-old room, the 4-year-old room, the 5-year-old room, the Kindergarteners, the 1st/2nd grade class, and the 3rd/4th/5th grade class.

My body needs to cooperate, dammit.

Yesterday and today I’ve been experiencing mild uterine and vaginal cramping. I’ve been “checking” a lot.
I came home from work around 2:30pm with a 99.9°F fever, and it hovered around 99.7 for the rest of the day. I was not able to get a last minute appointment with my acupuncturist.

Despite the low grade fever and cramps, and being a bit sunburned from lunchtime recess at work (I’d forgotten my hat and sunblock again), I still got a burst of energy yesterday evening, as my body went into what I call XXTREME NESTING mode.

My body does this every month right before I bleed. Sometimes I have the energy to act upon the XXTREME NESTING pull, and sometimes I just spin my brain meats and go stir crazy because I’m in too much pain to act on said pull.

Last night I took out recyclables, composting, did a load of laundry, loaded up and ran the dishwasher, got some more grocery shopping done to prepare for being homebound, mailed some bills, and scrubbed the bathtub twice. To my horror, neither the Borax nor the straight vinegar could fully clean the tub. We’d been using novelty Halloween soaps given to us for our wedding, and I’m convinced the soaps contained permanent black dye and wax. Ugh! On top of that, my husband has dyed his hair black twice in the past month and a half, and has not bothered to rinse the residue after his showers. So the tub is to me a horror story. But then, it’s nowhere near my mother’s bathtub. I went to visit my mother a few weeks ago in Michigan - it was my first trip home in six years. She has really let her house go down hill. It made me figuratively and literally sick to be in that house for more than a few minutes. My allergies exploded after 8 minutes in the place.

*shudder*

ANYWAY, after my attempts at cleaning the tub, I was sickened by the vinegar smell and just rinsed the damned tub and called it a night. I took 600mg Advil and went to bed.

I had even more crazy dreams. The dreams this morning entailed not being able to find a cab ride out of Detroit after a night at Cityclub, because the cabbies were taking furlough days on Sundays. We ended up walking all over the city around 4am trying to find a cab before we found out about the furlough issue. Then we ended up at our friend Bronica and Monkey’s place (but in real life, they live in Oakland, CA, not Detroit, MI. I guess it’s similar enough though). Then we took off for food at daylight, and I stopped at a street vendor who was selling broccoli cheese soup in a bread bowl. I convinced her to put the soup in a to-go bowl and put that bowl into the bread bowl so I could enjoy the soup without the gluten, and my husband could share the soup and also eat the glutenous bread. I was also trying to reach a friend or a cousin on my cell phone. I think I was trying to reach my childhood friend Rain, and I told her we were near the intersection of Aricka and Martin Luther King Jr Boulevard.
There is no Aricka street - Aricka is my cousin’s daughter.

Why all these strange dreams?

This morning, I’m registering at 99.4°F temp, and I’m uncomfortably nauseous after one bowl of cereal.

The nausea really pisses me off and usually means I still have an ovarian cyst going on. I’m convinced I’m either going to puke or start bleeding or both before I can get out the door to work. Part of me wants to call in sick, but I’ve already left work early twice this week, and it’s only been a four day work week.

We’ll see what happens next…