I Will Not Suffer In Silence

June 14, 2011: light cramping. Upper respiratory tract infection, thanks to a friend who attended a birthday party I went to. The coughing began on June 13 and worsened on the 14th.

June 15, 2011: moderate cramping. Went to work that day. Dealing with horrible upper respiratory tract infection.

June 16, 2011: george arrived. Went to work that day. Drugged on Tylenol 3 and Ibuprofen. It was setup week for Summer Session, so there were no children to have to look after. Since I’m supposed to be a head teacher for one week during the Summer Session, it was important that I be at work to help set up the classroom from the top down, and go over lesson plans and such so all the summer teachers would be on the same page. Dealing with horrible upper respiratory tract infection.

June 17, 2011: heaviest day. Went to work that day. Drugged on Tylenol 3 and Ibuprofen. Was pretty useless. Kept wanting to go home, but was too stubborn to do so. Dealing with horrible upper respiratory tract infection. Convinced at this point that it’s Whooping Cough. No health insurance to get looked at. They’d just tell me to ride it out, anyway.

June 18, 2011: Fed up with being ill and went out with husband to a monthly club night. It’s a low-key club to begin with, so it was no problem to be sitting and looking pretty with the others. I had some conversation with friends. It was alright, but I was severely exhausted from the pain and the meds. Dealing with horrible upper respiratory tract infection.

June 19, 2011: I felt well enough to go out to a Pirate Fair, which was happening by Mare Island. I knew that the ‘last gasp’ was going to happen, but I was so fed up with being in pain and being drugged, that when a break in the pain came, I went out for some fun.

The ‘last gasp’ occurred shortly after we arrived. We had walked probably one and a half blocks worth of shops at the fair, when I felt a trickle. I knew that once the bleeding resumed, the pain was not far behind. A few minutes after that, the nausea set in, and then the pain.
The other thing that sucked that day was the outside temperature. It was supposed to be in the low 80s, but ended up being over 90°F outside. I was in terrible pain, trying to pass huge clots, which elevated my body temperature, and so I was absolutely miserable. Here’s me sitting behind a jewelry booth in a spit of shade. Notice that I’m wearing a corset while trying to deal with this pain. Yeah yeah, I knew the pain would come and I still rebelled and wore a corset. How mean I am to myself, I know.

 
I took a half Tylenol 3 and Ibuprofen. Half an hour later, I took the other half Tylenol 3. I wandered around the fair in a daze. The heat was horrible - people of all ages were puking from heat exhaustion because there wasn’t enough water stations around and nobody thought it would get that hot outside.

Despite all of that hell, we came back from the fair, washed up, changed, and went out to dinner with my husband and his father for Father’s Day. The intense bleeding and pain had subsided, and I was spotting. The fatigue was still with me, and I was still dealing with the horrible upper respiratory tract infection.

I had residual coughing fits which lasted until around June 30th. There was bitter resentment at having gotten sick from a sick friend who attended a party or gathering - AGAIN - it happened twice within 12 months. I’m thinking too that it was the same person. There are two in our group who refuse to abstain from social events when they have a barking croupy cough. From now on I must remind myself that when they are sick, I will not go to the same events they are at, because they too easily give me their germs.

Oh - one last thing I just remembered: during the June cycle, I bled through every single one of my cloth pads. That has never happened before. Every last one of ‘em got bled through, even the thickest ones. I didn’t resume eating meat until towards the end of June, so I wonder if my anaemia was up because I hadn’t been eating meat. We’ll see, because I went back to eating chicken. Now I eat chicken and fish, but still no cow, pig, deer or other red meat per the geneva convention of endometriosis treatment.

My body wanted nothing more than to be bedridden on Saturday. My mind wanted nothing more than to be out with friends. And so I was. I’m just sad I didn’t get to all the events I’d planned to get to. It took three Tylenol 3 and 1,800mg Ibuprofen to get through the day. There’s no way in hell I’d be at work on that kind of medication - thankfully it wasn’t a work day.

As previously mentioned, this is the 5th cycle since surgery. I had three days of cramps leading up to george, who started on time on Friday, April 1st.

I was spotting by the end of the day on Thursday. It increased by Friday morning. I really didn’t want to go to work, but I pushed through the cramps, which were at a 4.5 on the pain scale. I loaded up on 600mg of Ibuprofen, looked up the bus schedule, walked to the corner, and waited for my bus.

The bus passed me, stopping three blocks up. I was so pissed off. I had relied on a local transit planning tool online, and also checked the schedule mounted at the bus stop. After the bus passed me, I looked up nextbus.com and found that there is no longer a stop where I stood. I then remembered that last year, there had been three different cuts to service routes, and I recalled that people were really upset over it. Proposition 22 passed in November, but it was too late by that time - AC Transit had suffered and made cuts before the prop passed.

I wasn’t personally affected by it at the time, because I still had a working car.

I walked back to the house and woke my husband, asking what I should do. I told him I was cramping, so I didn’t want to ride my bike to work. I told him my car is about to die, because it’s sputtering (spark plugs need changing), the exhaust is fubar, the rear brakes are leaking fluid and the drums are fubar, and the alignment is off due to a hit and run while parked last weekend when I was not paying attention to my car because we spent that weekend at the hospital visiting my husband’s father. Oh, and the “check engine” light had just come on this week on top of everything else.
I asked for advice - should I rent a car, take a cab, or did my husband want to drive me to work? And I could then have time to find a bus home later.

My husband said he’d drive me to work, much to my relief.

I got through the work day on only 600mg of Ibuprofen, simply because I was too busy to take more Ibuprofen throughout the day. The good news is that the pain did not ramp up enough for me to say, “Ok stop, I need medication NOW.”
The bad news is that since the pain was merely a 4.5 on the pain scale, that meant it was a continuous low drone of pain throughout the day that I neglected to properly manage. Thus, I made my day rougher than it should have been.

The pain started to ramp up by the end of my work day, and so I was pleased when a co-worker offered me a ride home. She also suffers with chronic pain (Interstitial cystitis) and multiple food and environmental allergies, so we’ve had many conversations, as misery loves company.

I cannot remember what I did when I got home, aside from taking half a Tylenol 3 and more ibuprofen. I think I just sat on the couch in a pain haze.

My husband got home from work a bit earlier than usual, so I thought we were going to the hospital to visit his dad again. Turns out he is just burnt out and wanted to leave work early. I get that. He whisked me off to grocery shopping for junk food, and we went to a friend’s house and hung out for the night.

During that time, I consumed another half Tylenol 3, some wine (yeah bad monkey, so sue me), lots of popcorn, cheese, strawberries and other sundries, and about 3 pints of water. I also had another bronchospasm - I’m still prone to those after getting bronchitis in February. What set me off was her husband having gone downstairs for a smoke and coming back into the house with smoke still on him and in his lungs. UGH. And my inhaler had been emptied the day before, so I had to push through that, too.

So that was Friday.

Saturday, we slept in, and then my husband dropped me off at the BART station, where I took the train to my long-awaited hair appointment (no sitting on the nasty seats this time - I stood and held onto the aluminum poles).

It’s been 3 months since I last saw my awesome hairdresser. It was right after surgery that I saw her, so I was excited to get something new done to my hair. It was my ME day and I wasn’t about to let the pain destroy it!! I popped 600mg Ibuprofen and half a Tylenol 3 and got on the train no problem.

Once I got into big scary San Francisco, however, things changed. Despite having GPS on the iPhone, as well as printed out street maps, I still could not get my bearings once I emerged from the subway BART station. I walked around in circles, trying to find the imaginary bus on California Street.
Within 10 minutes I realised the same thing that happened to me the day before in my hometown was also happening in The City - the buses are on tighter and changed schedules, now. Prop 22 didn’t do a damned thing to change that. GRRRRRRRR.
I called the hair studio and spoke to my hairdresser friend, who guided me to the next street over. I got to Sacramento Street and hopped on the 1. I got to my hair appointment 22 minutes late, but my friend still graciously accepted me and cut my hair exactly as I wanted it.

Before

After!

After :)

The pain had spiked when I sat down for my haircut, and I’d told my friend that I was at a 6 on the pain scale. I had popped another half Tylenol 3 by this time, too.

When my hair was done, my hairdresser instructed me on the best way to get back to the BART station. She suggested that since it was a lovely warm day, that I just walk the one mile back instead of dealing with the fubar bus system. I waffled at first, wondering if the just-recently managed pain would flare again. My hairdresser suggested I just hail a cab if the pain returned. I gave her a hug and set off into the unusually warm San Francisco day.
On the corner, I ducked inside the Out Of The Closet thrift store for a few minutes, before deciding I was far too distracted on the pain meds to pay any real attention to detail, so I set back off again, walking.

A half-mile into my walk, which was thankfully on a slight downhill step, I paused to get some photos of my hair (which you see above). After photoing myself, I felt a presence behind me, so I turned. There was this tall man, standing mere inches from me, and more to the point my backpack on my back. He turned away suddenly and began muttering to himself. He shifted on his feet, stumbled back a few steps, and lingered for a moment, looking at me out the corner of his eye.
I just glared at him, took a “I am going to KICK your ass” stance, and began swinging my very large, wide, heavy aluminum water bottle. He turned on his heel and disappeared around the corner.

This experience of course set off an adrenaline rush, which allowed me to walk the rest of the way to the BART station. When I got on the train, I was exhausted and drip-sweating. I refused to take off my hoodie, though. I stood the whole ride home, preferring to look like a speed freak, drip sweating and darting my eyes around, so people would leave me the hell alone.

When I got off the train, I waited for maybe 10 minutes before my husband arrived to pick me up. I thought I could go home at this point, but he reminded me that we were to visit his dad in the rehab center he’d just been moved to the previous day.

I ate a protein bar, got some hot lemon-ginger brew from the local free-trade coffee and tea house, and popped more ibuprofen, and we set off for the rehab center to visit dad.

Admiring a new iPad

His wife also came to visit him in the rehab center, but left after eating a meal in front of her husband that she knew he a) wanted and b) could not have due to his diabetes restrictions. Her total visit was about half an hour. I wanted to strangle her. But that’s another story for another time.

After a couple of hours, we told dad we’d hunt down his lost glasses at the dialysis center, and then we were off to dinner. The center was closed, so we’ll have to return again next week. We ate some sushi at the local hole-in-the-wall we love so much, and then returned home for the night, where I hung out on the couch with the heating pad, finally.

It was a rough night. I woke several times with gushing and pain. I stained my bed clothes, I am bleeding so heavily. I woke again this morning and had to take 600mg Ibuprofen and half a Tylenol 3 off the bat. I’ve been on the couch with a heating pad the entire time.

No idea what I’ll be able to accomplish today, though we do have to get our taxes done, so I guess I’ll start organising all my schooling receipts.

Today is Day 3 of george, Day 2 of pain at or above 6 on the pain scale, but most importantly, my third cycle where I have not (yet) been bedridden. Hope abounds.

I’m due for my 5th cycle since surgery 3 months ago. Why so many cycles, you may ask? I have a 25-day cycle. Sometimes I get my period twice in a 30-day stretch. I call these my ‘blue moon periods’. This month may end up as a blue moon period if it arrives today, cuz it certainly feels like it’s going to be a day early.

Whether it arrives today or tomorrow doesn’t matter - it’ll be crappy either way. Arriving today means I had two periods in the same month. Arriving tomorrow means it happens on April Fool’s Day. HAR HAR.

I’ve been experiencing moderate low back pain and intermittent sharp uterine cramps for the past three days. Starting a week ago, my ass decided to gush bright red. This is nothing new and has not changed despite surgery, and despite the surgeon saying she found no sign of endo on my bowels.

I have eaten like complete shit for the past three weeks, and moreso within the past week, because I have been stressed the hell out. I have subsisted on coffee and chocolate and cheetos. There is going to be a heavy price to pay for that. I woke at 3:30am with cramps so strong that I needed half a Tylenol 3.

We’ll see how this cycle goes…

I did go to work that next day on March 10, and I worked nearly the whole day before the pain decided to come back and bitch-slap me one last time. I left an hour early. So this month, I’ve only missed one day and one hour of work total on account of george, and once again I was never fully bedridden during this cycle. That’s two months in a row now!

This is really great post-op news!

Next period is April 1st (ha-ha). We’ll see how it goes. I remain hopeful.

The main complaint for this month is attack of the killer viruses.

February 28th I came down with the flu, and that was on a Monday. I went to the doctor, who listened to my lungs and remarked that he heard “crackles.” He listened again but I had a coughing fit, and that seemed to clear things up. I joked that he’d have to wait for the next build-up before determining “crackles” again.

The doctor asked if I’d had my flu shot. I said no, because I’m allergic to eggs (flu shots are created using chicken eggs, did you know?). He then suggested I try Tamiflu. I told him I have previously examined the drug and its side-effects, and decided that my sensitivity to meds, coupled with dealing with autoimmune disease, did not make it appealing to chance multiple side effects on the off chance that the flu might be lessened by one or two days.
The doctor asked what autoimmune disease I have, so I told him I have endometriosis. He looked annoyed, put down his pen, looked at me and said, “Endometriosis is not an autoimmune disease.”

My jaw dropped. I politely told him that the confirmation on this is fairly recent, so yeah, it’s actually an autoimmune disease. Meanwhile, his intern student doctor, standing to my left, murmured under his breath, “yes, it is an autoimmune disease.”

The doctor retorted angrily at me, “It is NOT an autoimmune disease!”

I thought for sure his next comments would be something about endometriosis MERELY being painful period, and why don’t I try some Midol to ease the cramps…he was at that level of condescension.

I told him “First of all, I’m the one with the disease, so I’ve done my homework, so yes, it IS an autoimmune disease, and secondly, there has been proven anomaly on chromosomes 1 & 7, WOULD YOU LIKE COPIES OF THE STUDIES, since I am subscribed to medical journals?”

The intern again quietly agreed, “it is an autoimmune disease.”

The head doctor wanted to hear none of it. Red-faced with rage, I informed him that I’d be inserting the studies into my medical file for his education.

THIS IS THE TWENTY-FIRST CENTURY, AND YOU ARE IN A SUPPOSEDLY DEVELOPED NATION, IN A SUPPOSEDLY HIGH-TECH DOCTOR’S OFFICE, TELLING ME WITH YOUR IGNORANCE THAT YOU ARE NOT UP ON THE LATEST MEDICAL RESEARCH?!?!?!?!

This is the second doctor’s office I have chosen in this city. I see I may have to fire this office, too. Sadly, I’m certain that all local doctor’s offices are this stupid. When I was leaving the exam room, the intern held the door for me. I smiled and quietly thanked him for backing me up. He grinned and replied that he was looking forward to the heated debate on the topic. It seemed like he was trying to tell me that he’d be in trouble for agreeing with the patient, and that it wasn’t his first run-in with the doctor. Ugh, poor intern. I sincerely hope he makes it out of med school in one piece.

When I got home from the doctor’s appointment, I called the office and told them to put it in my file that I will never see Dr. James E. Eichel again. As a matter of fact, my husband reminded me that the reason he left that doctor’s office the first time around in search of another family practice was because of Dr. Eichel’s condescending attitude.
I did a background check on him, nothing comes up. But take it from me and my husband, the guy’s a total asshole. Also, check out doctor reviews on the web - numerous people have found him to be condescending and rude.

I was so angered by this doctor telling me that my debilitating chronic illness is not in as valid a category as he feels it should be, that it has taken me 24 DAYS to write about it, and even now, this is the best verbiage I can find without using a string of expletives and then throwing something across the room.

So that was Monday, February 28. I took the whole week off of work to get better. However, by that Friday, the flu had turned into bronchitis. I was back in the doctor’s office, and again a doctor listened to my chest. By now I was seriously wheezing, too. The doctor said she heard “crackles”. Hm, this is the second time in a week that word was used, so I asked what it meant to detect “crackles.” She said it means pneumonia at worst. I asked if Dr. Eichel had put it down in my chart that he’d heard crackles back on Monday.

GUESS WHAT.

He made no mention whatsoever!

ASSHOOOLLLLLLLLLLLE!

So I was sent to the hospital for a chest x-ray. Thankfully, it came back normal. However, I was diagnosed with bronchitis and put on an inhaler.

The following Monday is when I got my period. I went to work that week, and only missed one day of work, and took it as easily as I could given the bronchitis and menstruation. I hacked a lung every day, and alarmed the students some of the time with my coughing fits. Being outside for a couple of hours each day didn’t help either, what with the cold, wet weather we’re having.

Ten days later, just as the bronchitis was clearing, I felt well enough to go dancing. We got home late, and I got about three hours of sleep, got up and went to work.

By the end of the day, I had a sinus infection. Go me. :(
Three days later, I had an ear infection.

Friday, March 18 I was back in the doctor’s office. The doctor, thankfully my preferred doctor this time (April Fredian), walked into the exam room, took one look at me, and sighed, “you got it, didn’t you.” She told me that this flu-turned-bronchitis-turned-sinus-infection is a really nasty thing she’s seeing in a third of her patients, and even she did not escape it. She estimated that I will be sick for another month and a half.
Dr. Fredian examined my lungs (clear) and my ears (left eardrum inflamed, could rupture), and my nose (more allergenic than viral). I was told all I could really do was take anti-inflammatory meds and hope my eardrum didn’t burst. She gave me codeine cough syrup and suggested I try Afrin for the allergy-ridden nose. I asked if antibiotics would help with the ear infection - she said if by Sunday my ear still hurt a lot, to get on antibiotics. I asked what kind, cuz I still had a z-pack at home. She said the z-pack would do, and then amended her prescription, saying if my ear still hurt by Saturday, that I had her permission to take the antibiotics.

So on Saturday, the ear still hurt, and I started the antibiotics.

Today was Day 5 of the z-pack - the last day - and dammit if the sinus infection and ear inflammation didn’t get worse. WTF.

So I’ll be back in the doctor’s office again tomorrow for further advice. I’ll be demanding ear drops or something. UGH, I just want to be well again.

March 17 was 90 days post-op, and I had promised myself by March 1st I’d be back in the gym again, toning up after all that downtime from surgery. And BAM instead I get a month of wheezing and staggering amounts of lung and sinus butter. I cannot believe the head and chest can produce so much phlegm. It’s disturbing.

Oh, to go back to endo for a moment - my husband and I were intimate on March 20 and I did experience dyspareunia afterwards, but it didn’t last more than a couple of hours. It was sharp, intermittent pain - the type I thought would get worse and last for days as usual. But it didn’t! YAY!

Going back to the ear infection - yesterday I was so depressed by not being able to get back into the gym that I literally cried.
The ear pain got so bad today that I had to plug my left ear for the last hour at work, and I felt like crying from the resonating noise (I work in a preschool in daycare mode this week, so you know it’s anything but quiet).

I got home and took Tylenol 3. I’ve been in a stupor ever since, but at least I’m dissociated from the screaming tinnitus (both high and low drone pitch simultaneously in both ears, plus the pounding eardrum pain in the left ear).

That’s all I’ve got. Great news on the endometriosis - keeping that in mind through this depressing flu season crap.

My husband dropped me off at the surgeon’s office for my second post-op appointment yesterday on his way to work. I was already on Tylenol 3, as the pain had woken me around 5am.

I was very early to my appointment, so I had brought my laptop and was attempting to do homework. However, the pain ramped up, and it was very difficult to concentrate. As a result, I kept running into technical difficulties, which frustrated me, and likely didn’t help with the pain level. I estimated my pain got to 7.5 again at the surgeon’s office.

Around 10:30am, I made the judgement call to not go in to work. I phoned my workplace and made the arrangements for an afternoon substitute to cover the rest of my shift.

When my appointment time arrived, I was barely able to stand. I was shaking from the pain. I had just taken 600mg of Ibuprofen and half of a Tylenol 3 because I wanted to be coherent throughout the appointment. While my vitals were being taken, the director from where I work phoned and wanted to know what was going on. She said what I expected her and anyone who does not suffer with endo to say:

“But I just saw you yesterday and you were fine!”

Yes. But that was yesterday. The pain hits when it wants to. I was woken from my sleep with the pain.

The director asked me if this was Day 1 of my period. I told her, “Nope, it’s actually Day 3!”

I assured her I had no idea why the pain is now delayed after surgery, why I’m still getting pain at all, and that I was already at my post-op appointment and would be discussing it with my surgeon.

I appreciated that the director said she was concerned, and had wanted to check in with me herself, and that she was thinking of me. Most workplaces wouldn’t do such a thing. I did thank her for calling me like that.

My surgeon’s assistant and surgeon could see immediately how much pain I was in. They both catered to me sincerely, and made sure to bend down and look me in the eyes before speaking. Then they situated themselves in their chairs in the surgeon assistant’s office and we discussed how I’ve been doing since the January post-op appointment.

I noted how my January period had been shorter, but the pain and heavy bleeding was the same.
I noted how my February period had not left me bedridden, and how I did not have debilitating pain until Day 4 of my cycle, but that when the pain did hit, it still was 7.5 on the pain scale, and had it not been for the weekend, I’d have missed work the same as I always have before surgery.
I noted that my March period had also not left me bedridden until Day 3 (the day of this post-op appointment), when the pain reached 8 on the pain scale and woke me from sleep and caused me to cry.

My surgeon went over my surgery results again, saying there wasn’t much endo found this time around (stage I), and that she suspects neuropathy for the lingering pain. She went over the available options again, and said she knows most of them are out of the question for me, but wants to let me know that from current medicine’s standpoint, this is all that is available for me:

• Danazol
• Lupron
• The Pill
• Mirena IUD
• Presacral Neurectomy
• Hysterectomy
• Pain management classes

Out of all of that, the only thing I’m willing consider is the IUD and further pain management classes.
I actually broke down and started crying at this point. I told them that I had seriously tried to do the UCSF campus pain management, but my insurance would not cover it.

I further lamented that our insurance runs out at the end of April, because my husband was laid off in December. I said my workplace offers Kaiser, and I had no idea what to expect with Kaiser.

My surgeon and her assistant comforted me, and assured me they know people in the Kaiser system, and would do some homework for me to help get me transitioned over there in their pain management program.

I am SO fortunate to have these awesome doctors! I do not want to lose them because of insurance limitations!!!!

And now for the rejection list of treatment options:

The Pill has already made me clinically insane on two occasions in my lifetime.

I refuse to go on any hormone, GnRH agonist or male cancer drug to try to treat the endometriosis, because of the side effects of bone loss, male hair growth and lowering of voice, worsening depression and suicidal ideation (if not outright psychosis for me).

My surgeon herself said hysterectomy was useless unless she takes my ovaries, which are the main things that the endo is attacking. But if she takes my ovaries, I have to go on HRT, and that puts me back into the infinite loop of insanity.

Presacral neurectomy had never been mentioned before, and I was told it’s not recommended often at all - it has to be a special case - and my surgeon is starting to think I fit the bill for the special case.
I was told of the most common side effects and I asked smart questions, and I probably won’t go with the neurectomy. I will post more about that in a separate entry.

So again, the only thing I’m willing to consider is the Mirena IUD.

I got the prescription and referral in case I decide to go with the IUD.

When the appointment was over, I phoned my husband and told him I’d be hanging out at a friend’s house until the pain passed, and maybe I’d try public transit to go home.

I then walked to my friend’s apartment nearby and we hung out all day. By hanging out, I mean that we sat at her kitchen table, and spent a lot of time hacking up our lungs (I am still getting over the flu, she is still getting over whooping cough and yes I am immunized).

The pain did pass, and after awhile we left the apartment and got on a bus to go four blocks up hill to a coffee house. The bus ride set off a new round of pain. I thought that standing on the bus would be better than sitting, but nope - doesn’t matter. The muscles used in keeping oneself balanced and upright on a moving bus is enough to aggravate endometriosis pain. This is the second time it has proven true for me.
After we hung out in the coffee house, and my pain was only worsening, I asked if we could go back to my friend’s place. We walked back, since it was downhill, and actually the walking did help the pain a bit!

It wasn’t long after that that my friend had to go to work herself. I thanked her repeatedly for letting me spend the day with her. I spent an hour more at her place, trying to do homework again, and then my husband got off work and came and picked me up.
I thanked my husband profusely for dropping me off and picking me up.

I am very fortunate to have such emotional and physical support right now in my life. I wish all of my endo sisters had this level of support. I do not take it for granted because I have not always had this kind of support myself.

It’s a basic right to be treated humanely when you have a chronic, painful, incurable autoimmune disease, and yet so many are not treated humanely with dignity and respect.

Today is a new day, my pain level is low, and I will try to go in to work.

Today is Day 82 post-op and Day 3 of my period. The quaking pain woke me just before 5am.
I finally crawled out of bed just before 5:30am because the heating pad was not touching the pain. I ate a protein bar and took a Tylenol 3 as I sat on the couch. Sitting upright helped ease the pain, but my left leg went numb. I sincerely think the nerve bundles in my pelvis, which travel down the back of my legs, get compressed when I am sitting, and therefore ease the pain a bit. I have the most benefit when I sit on a hard wooden chair when in menstrual pain. It’s weird that the nerve in my left leg got so compressed that blood flow was cut off - I was just sitting on the couch with my legs up. I’ll take the pins and needles feeling any day over the white hot knife plunging and twisting feeling. Alas, I’m still experiencing the knifing, too.

Let’s see…good news…I had only minor premenstrual pain. My worst pain day was while I did a three mile walk, and I was smack in between menstrual cycles. The day after the walk, I experienced the feeling of surgical adhesions being pulled, especially when I stretched upwards. It’s just a tight feeling, not searing pain or anything, but still concerning. I want things to be loosened up. Gotta remember to start the castor oil packs like my naturopath recommended.

The actual premenstrual pain started two days after the 3 mile walk I did. I had mild, intermittent cramping on March 1, 2 & 3. I began spotting on March 7 in the early afternoon. Later that afternoon, I took 600mg Ibuprofen for mild cramps. The spotting turned to flow the next day, and I required a total of 1,200mg Ibuprofen within an 8-hour span. That was yesterday.

Then I woke this morning just before 5am with the searing pain.

6:30am Update:
My cat Kiki is being a good nurse to me again - he’s laying on my belly, which adds to the weight of the heating pad, which helps ease my pain. Bonus, he’s purring.

6:54am Update:
Mischief Managed. The pain is dissociated enough from the drugs, now. It feels like a fingernail is poking into my pelvis but I’ll take that over the white hot knife stabbing and turning feeling.

7am Update:
Kiki is still crashed out on me - and still purring. It’s disgustingly cute.

7:20am Update:
It’s been an hour and my cat is still purring, still laying on me! Unfortunately, I need to disturb him so I can get ready for the day ahead. I know, call me crazy, but I told work I would be in after my post-op appointment. I refuse to concede defeat, so I will proceed according to plan until my body tells me no effing way. That and if I need additional doses of Tylenol 3, there’s no way I’ll go in to work and be around children on narcotics.

Kiki seems to sense I need to get up, and so he yawned and gently walked off of me. Love my kitteh.

The last day of george was February 13. There had been nearly no bleeding overnight from the 12th to the 13th, and then the cramps and bleeding ramped up by 9:30am.
I still went out of the house despite the pain, and an acquaintance helped me return the rental car I’d gotten for the weekend seminar. I came home and took a whole Tylenol 3. The pain radiated down the inner side of my thighs almost to my knees. I was nauseous. The pain reached 7.5 on the pain scale.

This of course proved to be the “last gasp” as we call it - the bleeding and pain abated by late afternoon and then I spotted on the 14th and 15th.

The good news of the February menstrual cycle is that I was not bedridden at all!
The bad news of the February menstrual cycle is that had the pain struck me on a week day as opposed to the weekend, I still would have missed two days of work, because the pain was above a 6 on the pain scale and required narcotic medication to treat.

Eight days later, like clockwork, mittelschmerz (mid-cycle pain, a.k.a. ovulation) occurred and lasted for two days. The symptoms consisted of sharp, intermittent stabbing pain in the uterus and left ovary (that damned left ovary!!!), which lasted for hours. On February 22, I took half a Tylenol 3 before bed. On February 23, I took 600mg of Ibuprofen before bed. The pain lessened but was still present (less stabby) on February 24 (today). It’s difficult for me to know if the pain would have been less sharp, because on February 21 and 22, I was intimate with my husband (funny how ovulation and an increase in libido happen at the same time, huh? ;). It could be the dyspareunia OR the mittelschmerz OR both. I’m special that way.

So the bad news is:

• The pain still got to 7.5 on the pain scale, which is unacceptable.
• I continue to have mittelschmerz.
• I continue to have dyspareunia.

Still, I am excited about what promise the March menstrual cycle holds. Each month my body recovers from surgery means hope that the really bad pain has been ameliorated by surgery. Hope is strong. Only at six months post-op am I allowed to throw in the towel with the hope that surgery worked. I am fully aware of the statistics of actual pain relief amongst endometriosis sufferers with surgery, and by that I mean I know full well that our numbers are low. But I am not one to give up so easily.

I am hoping with this next paycheck on February 26th that I can start up the acupuncture and massage treatments again. My masseuse also has endometriosis. She got a hysterectomy and had no relief even after that! She went to massage school and also had massage therapy on herself. What ultimately helped to relieve her pain was PUSH therapy. My masseuse is certified in Swedish massage, acupressure, Shiatsu, sports massage, deep tissue massage, reflexology, Dynamic Reposturing, and PUSH Therapy.

I also need to get back on the bicycle again. I’ve been a weather wuss, which is hilarious because when I lived in Michigan, I bicycled in 48°F weather all the time. The rain is another issue, I have never liked to bicycle in the rain.

Challenges to continue working on: omit alcohol, sugar and chocolate intake entirely.

Friday when I woke up, I debated staying home from work. My whole body was seized up from the pain. I did light, gentle stretches to work out the kinks. I ate breakfast. The pain hovered around 6.5 on the pain scale.

I waited til the absolute last minute, then said ’screw it’, got dressed, took 600mg Ibuprofen, and went to work. While walking from my car, I saw the director, still sitting in her car. She rolled down the window and with a jaw-dropping grin said, “HEY! YOU’RE HERE!!!” I stopped and smiled back. I said, “I’m doin it! I’m gonna do this!” And she gave me the thumbs up.

Friday was the heavy flow day, but I did it, dammit. I worked a full day. It took 1,000mg of ibuprofen to get through the day, and the pain was much worse after lunch again (sitting on the hard floor, rubbing backs for naptime. I need a zafu because the flat chair cushions we have aren’t cutting it for me).

But I did it. I went to work on the first, second and third days of my cycle. This is unheard of pre-surgery. So there HAS been benefit. It is showing.

After work on Friday, my husband took me to get a rental car, because my car is on its last leg and I needed to get to a teacher seminar over the weekend.

On Saturday, I woke up before dawn and prepared for the teacher seminar (second Saturday of every month, until June 2011, during my internship). The bleeding was still heavy, but the cramps were not so bad. To my dismay, I discovered I was already out of Ibuprofen, or at least I thought I was. I just couldn’t find the spare bottles anywhere at that moment (I have since found not one but three spare bottles, LOL). I drove off to pick up a classmate and fellow endo sister, and watched the sun rise from the Bay Bridge. We made it to class on time and got the seats I needed (right by the door in case someone’s fragrance is overpowering for me).

I have to say, Saturday and today have been my worst pain days this cycle, and if it would have fallen on a weekday, I would have missed two days of work just like usual. :(
However, that said, the pain did not get really bad until Day 4 of my cycle.

I consumed four half Tylenol 3s throughout the day, and 1,000mg Ibuprofen as well yesterday, but I made it through the teacher seminar, got my friend safely back home, and I came home and I drove my husband and I to get Indian food for dinner. The pain ramped up again during dinner, and I was antsy to leave and just be in bed. I really did go to bed right after dinner. The bleeding subsided that afternoon, even though I was still experiencing pain. The flow stopped overnight, only to return heavy and painful this morning around 9:30am. I got to about a 7.5 on the pain scale, complete with nausea this morning.

I have consumed a whole Tylenol 3 so far today, and now I’m off to visit my father-in-law in physical rehab while he works on trying to walk again after having his second big toe amputated due to complications of diabetes.

Day 53
Tuesday, February 8, 2011
Woke at 4:30am again and spent the rest of the night in twilight sleep again.
High burst of social anxiety while at work; had lots of vocal tics at lunch time, which was embarrassing, though thankfully no co-workers were around to hear it. Going for a walk did not calm me down. I took 1mg of Lorazepam, and still was not calmed down. Not surprisingly, the children did not nap for me. My energy was probably keeping them awake.

When I got home from work, the exhaustion set in. I took an hour nap, woke and did not feel refreshed. In fact, my whole body felt like it was seizing up. I went to bathroom and discovered my vaginal mucosa had changed colour. That means two things: 1) george will be early, and 2) nothing has changed with this second surgery with regards to my body wanting to become a pillbug right before menstruation each month.
My mid and upper back kept trying to seize up on me, so around 8:30pm, I took half a Tylenol 3. I could have taken Ibuprofen, but I also did not want to chance becoming wound up again, and did the ‘whack-a-mole’ or ’shotgun’ approach by taking the Tylenol 3 to keep me down. I went to bed at 9:30pm after I was falling asleep trying to catch up on all these damned journal entries.

Day 54
Wednesday, February 9, 2011
I woke at 5am and spent the rest of the night in twilight sleep…again.
When I got out of bed for the day, my body was still feeling seized up, and I was experiencing pelvic pain at about a 4 on the pain scale.
Took 400mg Ibuprofen, did stretches, loosened up a bit. Went to work.

During music and movement with the preschoolers, I pulled my abdominal muscles too taut and it stung inside. :(
By mid-morning, I felt something wasn’t right, so I went to the bathroom to check, and sure enough, I was spotting. It was dark brown and stringy. I was officially 2 days early. >:(

I wanted to see how bad the pelvic pain might get, if it came on at all, so I did not take Ibuprofen. The pain never happened! My entire back kept wanting to seize up on me all day, though. I toughed/stretched it out. When I got home, I meant to take 600mg Ibuprofen, but forgot, because it took all my energy to focus on getting internship practicum paperwork done, getting a load of laundry done, and making myself something to eat for dinner. I was in total zombie mode.
The spotting I had experienced earlier seemed to be a spurt, rather than anything continual, so I hoped I would make it to Friday before actual flow began. Still, being that exhausted did not bode well.
I slept on the couch between 8:30 and 9:30pm, waiting for my laundry to finish, and once it was done, went right to bed at 10pm.

Day 55 - TODAY.
Thursday, February 10, 2011
I woke at 5:30am and spent the rest of the night in twilight sleep again. :(
I was aware of the fact that I had pelvic pain, but I kept pushing it to the back of my mind. I was also aware of the fact that the knee pillow had actually made my knee pain worse overnight. The knee pain was sharper than the dull, gnawing pelvic pain.

When I finally did get out of bed for the day, I discovered that the spotting had turned to bright red flow. The moment I saw the blood, I began a mantra for today: “But it’s okay, because I’ve had the surgery.” On a deeper conscious level: “I will not let fear win out. I will be fine.”

I have two more days of work to get through, and a weekend to enjoy. I had sugery. I will be fine. No room for ‘but’ and other side thoughts. I will breathe. I will live. I will be fine. I had the surgery, after all.

The pain was managed on 600mg Advil for the morning! I got through an assembly and a work period - lots of kneeling & bending - I was ok!

Then the pain ramped up after lunch. :(

This was the EASY part of the day, and yet the pain ramped up. The director used triggering words with me; “I thought surgery was supposed to stop all the pain?” Even though I told her before surgery that it’s a HOPE, never a guarantee that the pain will stop.
The last job that uttered those words fired me.

Will I be fired from a second job because of Endo?

This is my 3rd menstrual cycle since surgery. I have reduced pain, but not enough - I still had to come home from work. I’m trying not to have a PTSD freakout over this.

When will pain relief start? 3 months post op? 4 months post op? Ever?

And then the anger sets in. I AM SO EFFING MAD!!!! I have spent the evening wavering between wanting to sob inconsolably and wanting to throw heavy things through the windows. I ended up sobbing for a bit.

To add insult to injury, one of my high school friends took over a thread on my facebook account, telling me I “should just have them remove the shit” so I won’t be in pain anymore. Then she went on and on about how grand life would be and that I won’t have to go on HRT at all and that I’d be totally pain free. She then literally said, “if you like the pain then keep your ovaries. I don’t have to have endometriosis to understand long term chronic pain.”

Seething with rage (which set off more pain), I publicly declared I was unfriended her, and followed through immediately so she would not have a chance to comment again. Then I wrote, “if anyone else wants to insinuate that I like being in pain, you can just remove yourselves now and spare me the fucking effort!!!”

She didn’t stop attacking me, however. She wrote me a facebook email with expletives, so I reported and blocked her.

I am so hurt and angry.

This led me to post a video from Kill Bill, which contains my favourite line: “…Now if any of you sons of bitches got anything else to say, NOW’S THE FUCKING TIME!”