I’m still convinced the horrible pain I was in last Saturday was a ruptured ovarian cyst, because the bleeding took so long to begin this cycle, and it’s very thick and dark. I slept for about nine hours and woke at 12:30pm yesterday. I was still barely spotting and was not experiencing a lot of pelvic pain. I should have been jumping for joy, right?

Instead, I began fretting over Time.
I was due on Friday. I’m usually on time. Descending to the underworld full speed ahead Friday morning would have meant that by Sunday night, most of the pain and despair would be over with, and I’d have a good chance of returning to work on Monday.

But no. The pain and bleeding ramped up late Saturday afternoon, so that means I have Saturday night and all day Sunday to get this endometriosis cycle out of the way before Monday 8am.

Fat chance.

I hate taking time off work every goddamned month for this illness.

I’ve been fired from two jobs because of this illness, and although I’m assured on the current job that I’m special, needed and wanted despite my illness, I still suffer the PTSD from those two other jobs. One harassed me for months before firing me. One harassed me for a couple of weeks - I quit 2 days before they were to fire me cuz someone leaked it to me.

I hate that I barely make enough money to even try pulling any financial weight around the house. Missing work gives me that much less money to work with. It may as well be babysitting money. I cannot cope with not being able to go halfsies like my husband and I used to do. He assures me it’s fine - that he’s so happy to see my sanity restored by working with kids again instead of in corporate hell. He keeps gushing about seeing all the kids that ran up to the fence Friday afternoon to say goodbye to me as I left work for the weekend. I call them my fan club. ;)

And those poor kids - I currently assist a class of mixed first and second graders. One of their teachers has been out sick for over a month - she’s got something serious and the staff’s not talking much about it. Could be cancer, could be lupus - it’s definitely taken out her immune system and she’s been having surgeries. I spent 3 weeks in that class with the co-teacher, and now I might be out sick for a day or two. The kids can’t take much more upheaval. Some of them were literally sobbing when their teacher came by for a visit Thursday afternoon, they miss her so much.

So it’s pretty obvious then - I don’t like letting people down - and having endometriosis means I will miss work, I will miss parties, I will miss appointments, I will miss out on life. I’ve been meaning to chronicle how many sunny days I lose to endometriosis in a year. It was in the 60s and mostly sunny today, and I couldn’t be out in it to walk around, bicycle, go hiking, because of the pain.
If I can make what I go through as concrete as possible to people, I think that might help quicken the pace towards a cure - more people will demand and fund more research to find a cure for endometriosis.
Education and awareness - it’s a small bit of hope I have.

Hoo boy. I need to do a sum-up. I’ve been noting all the details of my health in another diary that I keep. It hasn’t had anything to do with endometriosis, so I’ve not been spewing it, here. However, I’m in full on pity-party mode, so I’ll share some details here. The best way to get across how I’m feeling will be in visual format (click image to make bigger):

I’ve not had a day where I’ve felt alive and well since January 22 - a full month ago.

The red dashes through calendar dates means I missed work that day.
Anything in purple text denotes multiple chemical sensitivity reaction or danger of reaction. The oil spill remains a ‘danger of reaction’ since I have not had anything immediate happen. I went to the doctor’s office on Wednesday, February 17, because when I’d tried to go back to work that morning, it felt like my lung was collapsing. The chilly morning air and the thick fog made my lungs ache badly and it became hard for me to breathe. I looked pasty white. I barely fixed my hair to go to work, I was so sick. I turned right around and came back home because my lungs hurt so bad and I was having trouble breathing. I was able to get into the doctor’s office at noon that day, and saw a different doctor. She listened to my heart and lungs. She said I have ‘junk’ in my lungs, and that I was wheezing. She gave me my first ever albuterol treatment (nebulizer delivery).
Although it cleared my lungs and made for velvety smooth breathing for the next six and a half hours, the ingredients in the albuterol treatment also made me very light headed, gave me tremors, and removed my ability to concentrate. I darted my eyes and head around and had anxiety all day long. I told the doctor I can’t work in that state, and that the treatment is no better than the illness itself. I opted to stay home another day.

When I got back home, I found Alameda County Industries vehicles all over the intersection near my home. They were shoveling a sand like material onto a spill of some sort, which was all up and down two streets and filled the intersection. I saw a garbage or recycle truck with its hazard lights on. I went over to the working men and asked if it was hydraulic fluid that had spilled. They said it was. They assured me that the sand they were putting down was harmless, and was like ‘kitty litter’.

Please google hydraulic fluid toxicity to learn more, and also check out a news story about a woman who died after a similar accident.

I have also uploaded photos here. My lips were stinging when I got back into the house last night after taking pictures. I should have worn a mask of course. Of course.

I shed all my clothes in the kitchen and put them in a garbage bag. I took a shower immediately. Thankfully I did not have any immediate chemical sensitivity reaction to the spill. Only time will tell if I will become sick from the spill.

On top of all the viruses and multiple chemical sensitivity crap, now my period is two days early after I’d declared to my husband that I was sure it would be late, since I was not feeling any premenstrual pain. Nothing - no warning cramps, no having to check myself because it ‘feels’ like I could be bleeding. No ovarian stabby. Just HELLO! an hour after I got home from the doctor’s office.

The thing is, I *did* have some premenstrual cramping last Thursday - after my acupuncture appointment. I’d seen the acupuncturist for the sinus infection, but while there, she did some lower back work on me, cuz she knew my period was coming. That night, I felt low, dull pain in the lower back and at the back of the uterus. It was barely registered on the pain scale though - just faint rustlings.
On Friday, I had some slightly more annoying rustlings, but still, I did not need medication. Then on Saturday and Sunday I had no pre-menstrual cramping at all, most likely because my body was busy dealing with a yeast infection, which I get every single time I take antibiotics.
Please don’t tell me to try eating yoghurt or probiotics when on antibiotics, I already do that. Please don’t tell me to keep hydrated when on antibiotics, I certainly do that. I still get yeast infections, every time.

I decided to get a one-day Monistat™ treatment. I did that Sunday night right before bed.

I woke in the early hours Monday morning to use the bathroom. I wiped and … something wasn’t right.
My inner labia were hanging way down past my outer labia, and they were thick; puffed out, and stiff as boards. My heart jumped. WTF is going on!?!?
I wiped again, and the labia let me know they weren’t happy. It stung - it burned. I could feel my pulse in my labia.

I phoned up my family doctor and my gynecologist and left messages. I decided to not outright openly panic, so I got ready for work. It hurt to wear slacks, or tights, or even underwear for that matter. It hurt to sit down of course.

I went to work anyway. The doctors offices called back - the gynecologist wholly misunderstood my voicemail and told me I should try Monistat or Diflucan for my yeast infection. The family doctor got me an appointment after work.

By the time I got out of work, the swelling in my labia had gone down considerably, but it still hurt and pulsed with discomfort, so I went to the doctor. He did an external exam - not a pelvic - to examine the labia. There’s nothing he can do - just have to wait for the swelling to go down. I told him I discontinued use of the antibiotics. He said that was fine.

I got home from the doctor, and before dinnertime, discovered that my period had arrived without warning.

So now that george is here, I will go to bed and see what tomorrow brings - will I be able to go to work, or will the pain leave me bedridden?

Stay tuned…

Back on January 21, I saw Dr. Streitfeld, who referred me to Dr. David Adamson, who is a reproductive endocrinologist.
I’ve been leaving messages for his office and for a regular endocrinologist named Dr. Grace Eng, who I tried to see in 2009 but for some reason never got to.

Anyway, today I finally got a live person on the phone at Dr. Adamson’s office, and within seconds my heart was broken, my hopes dashed.

“I’m so sorry, but Dr. Adamson is no longer seeing patients with endometriosis - he only sees patients with endometriosis who are trying to have children.”

I was shocked. I thought some sort of cruel joke was being played on me. I could hardly believe what I’d heard was real. I thought, he’s no longer giving endometriosis patients the time of day UNLESS they want babies?!?!?! What the hell kind of slap in the face is that?!

I kept my voice even and as sweet as the secretary’s voice. I asked if there are any other doctors that Dr. Adamson is referring endo patients to.
I was told he refers patients to Dr. Andrew Cook.
Well thankfully, Dr. Cook is on my short list, so I called his office, next.

I was all set to schedule a new patient visit, when the secretary gave me the lowdown:

They don’t DO insurance - they want prompt payment from my bank account or credit card. But they are happy to submit a claim to Aetna insurance company on my behalf for the rest of the money to maybe be returned to me. From their website, “We believe in health maintenance rather than just control of disease. This type of care is not accommodated in the billing contracts of insurance companies that require a rushed schedule. For this reason, Vital Health does not contract with insurance companies. Vital Health Institute specializes in excellence!”
The first visit is a $200 consultation fee, and if my insurance deductible has not been met, then it will be an additional $395 for the office visit. That’s a total of $595 out of pocket for a single office visit. Then there’s the idea of surgery with this guy, also out of pocket. My first laparoscopy was $19,000 and was covered in large part by Blue Shield, our old insurance plan. My out of pocket cost on that was $1,500.

I told the secretary I’d have to talk it over with my husband and give her a call back.

When I got home, I also remembered that Dr. Streitfeld had said he thinks I could have adenomyosis, which could be detected on a MRI or a PET scan. If I want to skirt around seeing Dr. Cook in the short term, perhaps my current GYN can just send me for a MRI or a PET scan…so I logged into Aetna’s website and looked up the pricing. I did not see PET scans being offered, but MRI is. For in-network, a MRI will cost $1,772. Of that, I am unsure how much my co-pay will be. I had a echocardiogram in 2009, which cost over $4,000. There were two or three insurance adjustments made, and I ended up paying around $470, which is still a lot of money, and took me a year to pay off, because I only make $11/hr and my husband doesn’t like shelling out his own money, even after he assures me he will (but that’s a whole other can of worms).

I sulked.

Here I am, trying to do the best thing for my health; I am trying out alternative therapies, which are costly and out of pocket. I am trying to find a new gynecological surgeon so I can get surgery number two after the first one three years ago never gave me any pain relief, and now I find out that the type of surgery I am interested in (excision vs. cauterisation) is also going to be an out of pocket experience.

On top of that, I have been at my recent job for 10 months with only partial training for the job. This keeps me at assistant status, which keeps my pay low. I need to shell out $1,700 for classes THIS SUMMER, which will bump me up to head teacher, which will increase my salary.

The dilemma is this: stay on the job and take the courses, but continue to miss work each month due to the pain, OR start seeing Dr. Cook, save every penny I can, and get surgery number two, which will require me to take weeks off work to recover from the surgery. When I get back to work, I’ll be playing financial catchup for a year or more.

I even mentioned my financial frustration to my husband in chat when I got home from work.

Me: i’m beginning to feel the reality - i can EITHER start on a new path with a new surgeon and get that second surgery in hopes of long term pain relief, OR i can go to montessori teacher training.
Husband: at least for now?
Me: right
Me: this year
Me: those are my choices
Husband: well, there is the lottery…:/

This exchange left me feeling not only frustrated, but mad.

Before you even think to ask me about credit cards, yes, I have two, and they are already maxed out since our honeymoon in May, 2009, and my having to live off of them since that time because my husband doesn’t like to spend his money to support me. Even though he says he’s fine with it, the money is not there whenever I need it. I had an acupuncture appointment last week, and forgot about it til the last minute. I asked my husband for financial assistance ($50) the night before the appointment, and he got real upset with me. He grudgingly wrote out the check.
On Friday, I asked my husband if it would be possible for him to withdraw up to $100 in cash on Saturday so we could look at what the dispensaries had to offer me in the way of alternative medication. He said yes, and seemed to not have a problem with this. He patted himself on the shoulder that day for supporting Prop 215 “by putting my money where my mouth is”. We got inside the dispensary and I priced out a few items. I wanted to try the butter, the mocha mix and a tincture. The cost would come to just under $60.

My husband told me I could EITHER get the butter OR the tincture. His face went grey with how expensive each was (about $22 and $36 respectively).

So for a man “putting his money where his mouth is”, he withdrew $100 for me to get what I wanted to treat my pain, and then only permitted me to use $28 of it.

This is a man who makes $65,000 MORE than me each year, and he’s suggesting I try the lottery to cover basic needs of raising my income via schooling, and surgery to alleviate or minimise chronic pain.

We have a joint bank account. It has been empty since the honeymoon.

We’ve had several talks - or rather the same talk over and over. Nothing is changing.

He pays all of the rent on our apartment, and he often helps pay for my expensive groceries (see my list of allergies and whatnot). He has taken over the long distance phone bill and the land line bill.

I pay for my cell phone, my auto insurance, some groceries, my two credit card balances, the DSL connection, our renter’s insurance and earthquake insurance. That alone takes up most of my paycheck every two weeks.

My husband is on his way to band practice right now, and I will be asleep when he gets home, so I emailed him, requesting that we have yet another financial talk. If I could only get official confirmation that he will not support me financially, instead of this wishy washy bullshit, then I can formulate a plan to care for myself.

If I am on my own financially, I think it’s best that I just go back to pretending that this is what all women go through every month, and stop trying to treat something which ultimately probably can’t be treated, anyway. I won’t die from my condition. No matter what I’ve tried in the last 23 years, nothing has worked anyway, so why bother to continue trying to fight it. I don’t have anyone but myself to help me financially and emotionally, anyway. Same as it ever was.

Last night I went to bed around 9:30pm. Tonight I’m doing the same. I’ve been thoroughly exhausted for the past two days. I’m bloating like crazy. My lower legs and ankles are swollen. I get worn out and breathe laboriously just by walking or having to get up.

I take my vitamins and I’ve upped my Chinese herbal supplements to 2 pills twice daily. I got anxiety so bad around 3:30pm today that I thought I’d have a panic attack at work. I had to do my breathing exercises and it almost didn’t help. I had to fight through it with anxiety, racing heart and feeling of being suffocated. I left work at 4pm. I wonder if it’s PMS and I’m just stressed out by the data collecting I have to do on the job - I’m just an assistant - my head teacher should be doing all of this. She should have the long day, not me. Ugh. Give me the damned title and pay already, people.
So perhaps it was just that. But part of me is now wondering if it’s the herbs. I’ll talk to my acupuncturist tomorrow. I’ve got to ask her questions about how to deal with bloating and fatigue, as well.

I’ve been feeling low dull pain with the bloating since Monday. On Saturday and Sunday is when the right side ovarian stabby started - at least that abated by Monday.

I took 400mg Advil gel caps before bed last night - doing the same thing tonight.

On a bright note, my husband’s gym is offering a special so I signed up today after work. Half of what he pays per month, plus a month free, plus a free session with a fitness trainer. I told the trainer what my physical restrictions are, about my illness and what my goals are - we are to meet after this upcoming round of doom is over.
We are also experiencing a break in the rain - I think it’s rained constantly for a week and a half, I forget. Today there was no rain. Tomorrow is supposed to be dry, too, and then the rain returns on Friday. Imagine my mixed feelings at this - it’s bad timing for my health, cuz I’m winded just getting up out of a chair right now, and my body feels like lead. I want to bicycle but if I bicycle the one mile to work in the morning, I’ll have used up too many spoons to get through the workday, which involves literally running after children on the playground, both to entertain them and to get to them before or right after injury happens. There’s also the lunchtime cleanup, which involves sweeping around and under 3 picnic tables. It may sound easy to some but operating a broomstick really hurts my back and sides and abdomen a few days before menses. Then I’d have to bicycle back home - if I made it back at all without collapsing, I’d surely collapse for the night as soon as I got home from work. So bicycling this week is out of the question - not enough spoons.

I’ve been doing slow stretches of my arms up as far as I can reach and holding it, then tilting to one side, then the other - very slowly. My back feels like I’ve pulled the muscles. This is ‘normal’ and happens every single month, right before menses, as my body tries to fold in on itself like a pillbug. I’ve also been doing the large hip circles I always do to try to manage the pain. Sometimes it’s really painful to begin working the hips, but after awhile things loosen up and I really do feel better. So it is part of my pain management process.

Gah. It’s nearly 10pm now. I really need to be sleeping but I really needed to provide an update on the premenstrual madness.

Goodnight!

On December 5, I developed a mild cough. Two days later, I had the flu. I found out later from a doctor that it was likely H1N1.

A week after getting the flu, I fell ill with endometriosis pain and was bedridden for a few days. I was on a lot of Tylenol 3, which was good not only for the cramps, but also for managing the fever (acetaminophen) and the cough from flu (codeine is great for supressing coughs).

The moment I came off the Tylenol 3, the cough and flu-symptoms returned. And then my husband fell ill with the flu. And then my symptoms turned into a sinus infection. This was the week of December 20. By the end of that same week, I was experiencing Mittelschmerz.

I have all the flu stuff detailed on another journal here and here.

My husband and I began to feel better by December 29, and on NYE we were able to go hang with friends.
On Friday and Saturday (Jan 1 and Jan 2), I went out dancing with my husband, because we were screwed out of our vacation and because it’s the last dancing I’ll likely get to do before falling ill with endometriosis pain again…it’s due by January 7…which is two days before my husband’s birthday.

So I missed work on account of flu, then on account of endo pain right before Christmas/Winter break, and now I’m going to return to work and immediately miss more work on account of endo pain.
Good times. The fear of not having job security continues.

Today is Day 8 or 9 in the new cycle, which means I am likely ovulating. It explains why I was receptive to intimacy last night, for sure. That’s one very sad fact about women with endometriosis - interest in intimacy becomes dull or nil over time because of how much pain we’re always in. So I take advantage when the moment strikes.

I had 12 pain-free days in October, and miraculously 5 of them were consecutive. However, that was mitigated by the fact that I was sick throughout October, leaving me with a total of 4 days total in the month of October where I felt healthy and fit, and sure that I would not pass any sort of virus to my husband, since I work in a school, where children are natural germ factories.

So in dealing with being sick all month, I had zero interest in being intimate. I forced myself to be in the mood on the eve of our one year wedding anniversary. No penetration actually took place, either, but at least I made my husband happy. So unless I forgot to record it on my calendar, we were only intimate ONCE in all of October, our anniversary month.

Both of us were emotionally crushed when george showed up ON our anniversary, but I think actually my husband was mad and disappointed. In a depressed voice with shoulders and head bent forward, he asked quietly if he could get a rain check as soon as I was feeling better. GUYS, I AM HERE TO TELL YOU THAT ASKING SUCH A THING IS THE ABSOLUTE WORST POSSIBLE THING YOU CAN SAY TO A WOMAN WHO IS ALREADY SUFFERING EMOTIONALLY AND PHYSICALLY. DON’T EVER DO THAT AGAIN.

And so I was the one who was crushed - traumatised even - that I allowed all the stress and chocolate-eating to catch up with me on such an important day to us, because I felt for sure that my husband would stray, ESPECIALLY in light of his fecking “rain check” comment.
Even though we’ve been together for eight years, it was the first thought in my head; “Now that we’re married, it’s different, we didn’t want for it to be different but there are in fact different expectations, now, and he won’t be able to handle me in this new role of culturally-defined expectations.”

An acquaintance, who was having marital troubles from the start, once told me that once we got married, “Everything changes. It will be different, you’ll see.” And she was not saying this with a smiling congratulatory face. She kept saying, “I’m serious. It all changes.”

Well now I see one way in which she was right.

I was suicidally depressed for the week following menses, and part of it had to do with having taken a lot of vicoprofen. Part of it had to do with being overwhelmed by all the homework I’ve had for one class for work, part of it had to do with the amount of light in the day being drastically reduced throughout the month of October (stupid earth rotation), and part of it had to do with my husband CONTINUING TO ASK ABOUT THAT RAIN CHECK every couple of days.

The “rain check” was cashed in last night - a full week after menses stopped, because of the major depression and the homework and full time work schedule…and well because my body was ready for intimacy again.

So far, six days into November, we’ve been intimate once. I have to try to find ways to kick up the intimacy again, and remember to record it more diligently for posterity. It looks like March was a record month, as we were intimate five times.

I need an aphrodisiac I can take like a supplement. Too bad anything on the market right now billed as aphrodisiac is actually a scam.

The most sexually charged I’d ever been on a continual basis was when I was taking anti-depressants.

However, I also went even more insane while on anti-depressants back in 2000.

Zoloft made me clinically schizophrenic inside of 11 days, so I was put on Paxil, which dulled all emotions except the desire to hump anything that moved.

The problem with Paxil is that it also gave me akathisia, which in turn led to further suicidal ideation - the very thing I went on anti-depressants to stop.
While on Paxil, the emotional part to the suicidal ideation was removed. That means I was now TOTALLY FINE with going ahead with various ways of killing myself, because I no longer felt conflicted over it!

I had enough wits about me to realise this, and got off Paxil and onto Celexa.
But Celexa didn’t do much for me and I got off of that, too, finally firing anti-depressants for good a year or so later.

The gym remains the only viable solution that I can think of for the intimacy thing, except that I’m only pain-free enough to get into the gym a few precious days a month. But it’s worth a try, isn’t it?

Everything’s worth a try, to convince myself and others that I’ve at least tried, before the full weight of insanity bears down on me and I wink out.

November 9, 2009 Edit:
My husband and I had a record weekend of intimacy - Friday, Saturday and Sunday! Things got off to a rough start on Saturday when he once again asked to cash in that “rain check”, and I had to put him in his place, reminding him we’d already been intimate on Friday, so THAT was his damned rain check. He now knows never to use those words again, and why. I dressed up for him anyway, though - that is the part of the “rain check” he’d wanted - all because he’d seen some nice shoes I’d brought with me back on our anniversary weekend, and got some fanciful ideas in his head as to what I would be wearing to bed. When in reality, I just threw a bunch of clothes and nighties together along with the shoes, to go with whatever mood would strike me.

Anyway…

Yesterday after our intimacy, the cervical and pelvic pain began. It’s still with me today. I have moderate low back pain as well. I feel like I’m getting another infection. I hate this. THIS is a big reason why I avoid sex - if I’m going to constantly get infections, why bother being intimate? It’s not the condoms - they’re latex-free now, and I even get this same pain if I pleasure myself.

Time to Wait And See if the pain goes away or gets worse.

I’m bedridden right now, waiting for the Tylenol 3 to kick in, enduring nausea, ragey feelings, sharp stabbing pain in my left pelvic quadrant, and a low body buzz of inflamation.

Today was Day 5 of spotting which rolled into Day 1 of actual flow, around 10:30am.

I had minor pain from the time I woke up this morning, and decided to go in to work. I had stayed home yesterday, expecting the worst, and it didn’t happen. At the moment I had called in sick to work though, the pain and nausea was bad. It just dissipated is all. I was a mental basket case all day yesterday though, so it’s best I stayed home, anyway.

I did a bunch of slow large hip circles before going to work and lamented that I couldn’t do them while on the job cuz it looks too risqué ;)

I wasn’t much better emotionally this morning, cuz when I got to work, both the school director and the financial director said they needed to see me, and the school director offered to take over for my start-of-shift duties. I told her I’d be fine, and went. But of course I fretted to the point of near panic attack, fearing that I was going to be fired for missing work. Hello PTSD!

It turns out that the school director just wanted to know more of how I get through each moment with the pain, and the financial director wanted to go over the purchase request forms I’d submitted for my classroom, to be sure she understood everything before making a store run for the school today. *big sigh of relief*

Today I fluctuated between a 1 and a 3 on the pain scale until 1:15pm.

Just as I was going to my lunch break, my legs felt weak and the pain ramped up to 7.5. I shoved 600mg Advil liqui-gels down my throat while eating watermelon and dried mango, because 5 minutes was too long to wait before my lunch was done cooking in the microwave. I sat through my 45-minute lunch break hunched over the table, my hands trembling as I tried to eat. I seriously considered going home.
I made chit-chat with the school secretary, who was also on her lunch break. We talked about Michigan cuz I finally got plane tickets for my husband and I to visit between Christmas and New Year’s. Her family is from Troy, Michigan. We talked about the seasons and where we’ve traveled within the state.
About 8 minutes before the end of my break, the pain cleared, and I sat up straight, and felt alright. I slowly stood up and the pain didn’t return, nor was there any gush. How excited I was!
I went back to my outdoor classroom and finished out the day, tremendously proud of myself. The pain fluctuated between 1 to 4.5 for the rest of the work day.

As the parents arrived at 3pm to pick up their children, the director of the school came outside and asked me how I fared today. I told her how the day had gone well until my lunch break, and that I toughed it out waiting for the meds to kick in, and they did! No opiates! Just the liqui-gels, and I was ok by the time my break was over.

The director smiled broadly and I told her ‘what luck!’ that I’d had the pain come and go again in-between the time I was around the children. She was happy for me and remarked that she’s watching me in order to gain more understanding of what her own daughter goes through and how she might help her through it. Awww, isn’t that sweet? Seriously! I am happy to tell her whatever she needs to know about endometriosis and how I personally get through each day.

I got home and immediately changed into my pajamas and resumed the slow large hip circles to manage the pain. I tried to get some homework done but couldn’t concentrate and was literally falling asleep at the computer. Around 6:30pm I forced myself to get dressed and went for a 3½ block walk to my favourite sushi joint and got some take-away dinner. I was able to walk briskly and surprisingly, I had energy to burn. The pain fluctuated between 1 and 3 over the half-mile round trip.

Around 8pm I was trying to do homework again when I was seized by fatigue once more. I fought it a second time and decided to make a grocery run. I noticed that walking had become more laborious. But still, I was alright when I walked into Safeway. The pain was about a 4 on the scale. However, while shopping I became nervous and felt like a panic attack may occur. I felt a low full body buzz beginning. Then my legs started to get weak. I finished up and got the hell out of there to make it to Trader Joe’s next door before closing time.
It was just after 8:30pm, and as I stepped out of Safeway, it felt like every foot forward was leaden. I felt like I was walking in slow motion. My body just didn’t want to carry on. I forced myself to keep walking, despite the heaviness and fatigue I felt.

The pain reached a 7 on the pain scale by the time I got to the checkout lane. I thought I was maintaining outwardly pretty well, until the clerk looked at me to greet me and worry crossed his brow. He asked how I was doing in that “are you alright?” sort of tone. I quietly and nervously replied ‘okay, how are you”. :/

By the time I got back to my car, the pain had reached an 8 on the pain scale. I was able to drive the half mile back home, but could barely get out of my car. I literally had to sit there for a minute to steel myself and force myself out of my car.

When I got in the house, I took a Tylenol 3, got back into my pajamas, and crawled into bed with the laptop. Screw the Ibuprofen, I needed immediate whacking of the pain. Still, it took roughly 25 minutes for the meds to take effect, and the nausea almost won out.

But here I am, pleasantly stoned, laying in bed with heating pad and laptop. I made it through the pain and chronicling said pain.

Where is my husband, you may ask?

Band practice.

Sometimes I’m bitter at his absense during my intense pain in which I am left to fend for myself.

Other times I am okay with it because honestly, there’s nothing he can do aside from fetch things for me. I didn’t NEED to go to the grocery store tonight. I was stubborn and went, because I’d rather have done that than have gone to bed at 8pm like my body wanted to do.

Tonight was a mixed bag. I’m still emotionally a bit of a basket case.
I hate the hormonal whack that comes with menses.

On Monday September 28, I woke with very very slight spotting, but feeling like a mack truck had run over me. I attempted to call in sick an hour before the start of my shift, but couldn’t reach anyone. After talking with the director, I agreed to come in for a half day, which for me is 3 hours.
I got to work and immediately popped 400mg of Advil liqui-gels. The low back pain and occasional stabbing uterine pain had me walking like a little old lady all morning. As I was cleaning up my classroom at 11am, I slowly picked up a full bucket of water and cried out in pain from the stress it put on my pelvic muscles. My eyes welled with tears and I set the bucket down, whimpering.
I let the bucket sit and told my co-teacher I could not lift it. I went about closing up other parts of the classroom, which entails putting plastic sheeting over the shelves to keep dust and dirt off of the classroom materials, since we’re an outdoor classroom. As I neared one of the shelves with a plastic sheet, I tripped over it. The act of me trying to catch myself mid-stumble set off my pelvic pain anew. I about started crying, and declared out loud that I was definitely done for the day, and that my previous guilt and doubts could now shut the hell up.
I went home and spent the rest of the day on the couch medicated on Tylenol 3 and Ibuprofen. I went to bed that night freezing cold, so I put the heating pad on and rotated it from my feet to my thighs to my pelvis and back to feet again until I warmed up. I think the house was 68°F to 70°F but of course my hormones thwack my core temp regulation.

On Tuesday, September 29, I woke feeling fine. I got ready for work, ate my breakfast, and marveled that I was not in pain, though I was still spotting. I was pleased that I didn’t have to call in sick.
However, just as I was about to go out the door, I was seized with full body hot flash, hypoglycemic attack, and nausea. The spotting increased and was dark brown in colour, whereas on Monday it had been brownish/pink.

I tried to call substitute teachers to fill in for me but since it was half an hour before the start of my shift, I could not reach anyone in that short of time. I left messages and went to work, anyway, taking a wait-and-see attitude, thinking maybe the pain would not get too bad. I popped 400mg of Advil liqui-gels as soon as I got to work. The director was shocked to see me after I’d gone home in such pain the day before. She talked to me about her daughter, who also suffers from bad menstrual cramps. She told me how her daughter says she gets a numb like feeling in her upper thighs/tops of legs, and that’s how she knows the pain will be bad. I explained to my director that there’s a whole mess of nerves in the pelvic region, and that when pain flares up, these nerves become irritated - these are the same nerves that also travel down the legs, and so the pain travels, too:

She said her daughter often vomits from the pain, and that it lasts only the first day of her cycle, and then she’s alright. My director further added that she too used to vomit from the pain and only had it really bad on the first day.

The pain for me abated, and I was able to get through an entire morning just fine! However, when the last students left my room at 11am, I realised I was very hungry. I began snacking before the lunch rush - three classes of children come outside to have lunch around 11:30am, and I turn into part of the lunch crew. So I snacked a bit and then the nausea started. Oh no, I thought, the pain can’t be far behind. A hot flash followed the nausea, and the spotting increased with some pain, but I stuck it out, and the pain again subsided. I made it through an entire day of work. I came home and still had good energy, which lasted into the evening. I picked my husband up from the BART station and we went to dinner, even. I felt energetic and cheerful and enjoyed every minute. The pain didn’t return again until around 9:30pm, at which point I put myself to bed.

I got up this morning and wanted to cry. The pelvic pain has so far been dull, achey and minimal, but my emotions are seriously fubar, so if anything, today was needed off work as a mental health day, anyway.

For the past several days, I’ve been doing the large hip circles I mentioned last month, because it helps me stave off the pain.

I got back in touch with my Qigong practitioner to see if she’s teaching Qigong class again - she’s not. Says no one is showing enough interest to justify it. But what about one-on-one sessions? Meh.
She wants to perform Chi Nei Tsang on me again, though. I will do that and another Liver/Gallbladder cleanse, which is a dietary program which lasts for a month.

I’ve also gotten back in touch with my masseuse, and requested regular sessions with her, citing that the muscle memory in regards to the chronic pain is getting beyond my control to manage, and I need her help. She’s more than happy to see me. She wrestled with endo for years before finally giving in and getting a hysterectomy. She found that the pain didn’t stop, and realised her muscles still held the memory of the pain. She had to train her muscles to let go of that. It took years, but she succeeded.

So that’s where it’s at.

I was at work on my birthday (Thursday, September 17) monitoring the children at lunchtime, when suddenly I was doubled over in sharp shooting pains in my bladder region.

The pains continued intermittently for several minutes, and then disappeared for the rest of the work day.

Three days earlier, I’d had some bladder pain, too. The pain was about six days following the end of my last period, and I had said it was either due to trying to do yoga first thing in the morning, or perhaps it was mid-cycle pain already.

After the severe pain had passed on September 17, I went to the bathroom to check on myself and found lots of milky-coloured, sticky discharge. My first thought was that the cervicitis was back. But the pain felt lower and definitely more frontal - in the bladder.

It is possible with how hot it’s been outside, and all the running around I do when working with children, that I’ve given myself a bladder infection because I let myself go for too long before rehydrating, before using the bathroom, and well on top of it all, I’ve been sweating through my cotton underwear and forgetting to bring an extra clean, dry pair to work with me.

On Friday, I brought extra undies and changed into them by lunchtime, but still, the damage is done and I’m not sure yet if I caused whatever infection is happening, or if it’s just manifested on its own.

Then, this morning I woke up feeling like a mack truck ran over me. I had low back pain so severe that I wanted to cry. I got out of bed and sat on the couch with a pillow behind my back. The pain dissipated between that and then taking a nice, hot shower.
However, as I was putting my clothes on, I experienced pain in my left scapula, which radiated to under the back of my ribs. It was hard to breathe. At one point I sneezed and thought I would cry. The pain lasted for the better part of the day, with the severe low back pain returning on top of the shoulder/rib pain. Around 4:30pm, the shoulder/rib pain was gone again and it was mostly low back pain. By the time I got home from a birthday outing for a friend - around 6pm - it was back to shoulder pain AND low back pain again, and that’s where it’s been ever since.

I’m mad because as of September 16, I thought I had around 11 good days left before bedridden time again. And then the next day, POW, pain that made me double over. Three days later - today - POW, alternating pain from low back to upper left shoulder to low back to pelvis… lather, rinse, repeat.

I would say welcome to Living With Endometriosis - women are more prone to bladder infections and a condition known as Interstitial cystitis (IC). But the thing is, I’m NOT having the main problem associated with bladder infections or IC - painful urination.

I looked up Urinary Tract Infection, Candidiasis, Cervicitis and Interstitial Cystitis - what I’m experiencing doesn’t fit any of those conditions.
I even looked up kidney infection - nope, not what I’m going through aside from the flank pain.

The only thing left which has more than one symptoms similarity for me would be Mittelschmerz - which I first proposed back on September 14.

Other than that…if the pain persists, the next ‘only other’ could be ovarian cancer. Whatever. I already have a prescription to go get a CA 125 test and I’m prepared emotionally WHEN it comes back as elevated level.

I’ve had many numerous ant invasions this summer - seriously determined ant invasions this year where no matter what you do, they won’t go away.

This morning I woke up to another ant invasion, and this is after we had Omega exterminator spray INSIDE the f@#$&!* house on Tuesday. I broke down immediately. I’m seriously about to be committed after all the ant invasions. They got in under the sink, and didn’t even touch the garbage can. They just bee-lined straight on top and into the sink for teeny scraps of food left in the garbage disposal after I ran it last night.

I spent half an hour first thing out of bed performing an ant massacre, when I needed to be eating right as soon as I woke up. Needless to say, another hypoglycemic attack hit me, as happens when george is near.

And then george himself showed up.

Now I do the ’should I go in to work or just stay home’ routine. The pain will be here. I just don’t know when.