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.

I’m feeling bad for myself today.

I saw a new GYN today - his name is Dr. Hank Streitfeld and he was referred to me by two of my co-workers. We went over my surgery report, all the doctors I’ve seen for endo, my diet and herbal remedies, other specialists I’ve seen, my expectations, and what he does, can do and can’t do.

Basically, he thinks both cauterisation type laparoscopy and excision laparoscopy has its place. He prefers Lupron as his drug of choice for fighting endometriosis. He agrees with me that I can’t be on hormones or Lupron to treat the endometriosis; he is able to cite enough studies where women are as sensitive as me to drug therapies and went cuckoo. He agrees with me to steer clear of the Nezhat brothers. He had good things to say about Dr. Andrew Cook and Dr. David Redwine, and he also mentioned a Dr. David Adamson who also does excision surgery - said I should definitely see both him and Cook to get all my questions answered.

Then he told me that due to the lack of pain relief from surgery, I should consider that I might have a condition called adenomyosis. I’ve seen the word mentioned in the endo forums, but never researched it. According to the Mayo Clinic website, “Women who have had prior uterine surgery, such as a C-section or fibroid removal, are at greater risk of adenomyosis.” Well does laparoscopy count as prior uterine surgery? Did I have adenomyosis before the laparoscopy or do I have it as a result of it? Did it just come on naturally in addition to the endometriosis?
Dr. Streitfeld said that adenomyosis may be detectable on an MRI - so that’s something I can consider - cuz the only other ‘real’ diagnosis of adenomyosis comes through removal of the uterus and dissecting it to find whether adenomyosis is present.

Dr. Streitfeld was every bit the cool doctor my co-workers said he would be. I liked his no bullshit demeanor, his relaxed and calm style and his staff. I’ll totally recommend him to people. I’m just sad he couldn’t be the doctor for what I need.

I’m at T-minus 11 days until the next bedridden. Even though I got good referrals out of Dr. Streitfeld, it’s just the idea that I’m still going doctor to doctor, trying to find help for the debilitating endometriosis, and on top of it, now I’m told I should consider the idea that I might have adenomyosis on top of the endometriosis. And so the fighting spirit is drained. I’m crying like a scared child; “Mama, I don’t wanna go to that bad place again!!! Why can’t anybody help me mama?”

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.

Right, then, I’ve gone and had my little emotional meltdown, and now I’m feeling a little better.

I just remembered something I talked about with my husband yesterday while we were in Mendocino - I was very angry with my body for deciding to let the menses loose two days early, on our one-year anniversary no less.

I started to go on about all the things that I’d neglected to bring, if only I’d known that I’d be needing these things so soon.

I’d made some accommodation for myself with regards to the multiple chemical sensitivity issues I’ve been having since September, but I’d made no accommodation, outside of my pain medication, towards the endometriosis issue.

I simply did not expect to be two days early, because I was not exhibiting the usual round of pre-menstrual symptoms. I was taken by surprise. I had to use a sock as a pad, that’s how unprepared I was. I haven’t had to use socks as pads since I was in high school (we were too poor to buy maxi pads).

So my discussion with my husband was that from now on, I need to be prepared, in the event that george sneaks up on me.

On the way home last night, as I was tossed about on the rough seas of endometriosis pain, combined with too much Vicodin, I clung to what sanity I could. I made a list of things I need to have at the ready whenever I am away from home 5 days before menses begins:

• Back support cushion
• Medication - enough to last an entire month, because that’s what makes me feel at ease
• Travel heating pads (I have rice pads and corn pads.)
• Maxi pads (Always have fabric pads and disposable pads on hand).
• Portable toilet (I have a female urinal in with my camping gear, but it’s incredibly uncomfortable. Last night I began fantasizing about lugging around an actual toilet, instead).
• A change of clothes, such as pajamas or something loose and comfy.
• A blanket or sleeping bag.
• A favourite pillow (hugging a large pillow close to yourself makes being stuck in a moving car when experiencing a lot of pelvic pain a little more bearable. The pillow gives the feeling of support).
• Large elasticised bandage (again, for pelvic support when stuck in a moving vehicle) - Some people need the feeling of confinement when in that much pain, while others need to be in as loose-fitting clothing as possible. I could go either way - it just depends on the situation and the type of pain I’m in.
• Barf bags (Who here besides me has vomited from the pain and/or from the side effects of pain medication?)
• Respirator masks (unrelated to endometriosis; I also have Multiple Chemical Sensitivity (MCS))
• My wheelchair (either the pain or the pain meds, or both, can sometimes make it too difficult for me to even stand or walk. If I’m driving distance away from home but have the wheelchair in the trunk of our car, it makes my life SO much easier).
• Unscented travel soap (again related to MCS issues)
• Slippers or slipper socks.

I know there has to be more for my travel kit. I’ll think on it and check back on this post, later. The latest round of meds have kicked in and I need to go pass out.
Once I’ve refined my list, I’ll post it up on the main site. I need to also scour the Travels With Pain website again.

Back on September 16th, a day before my birthday, I wrote a wishful thinking post. I had resolved “to live the next 11 days as well as I can, and enjoy life the best that I can, until the darkness falls once more”.

The very next day, on my birthday, while at work, I was suddenly seized with severe bladder pain, which lasted a few minutes. This happened around 11:45am, during the lunch rush, where I’m supposed to be monitoring children aged 3-5 eating their lunches, keeping them in their seats, resolving fights, reminding them to wipe the table and sweep up after themselves, and help them open up their food packs. During the lunch rush is when I am needed by no less than three children at a time, for over an hour, for one thing or another. All told there are around 50 children at lunchtime, and there’s about five or six adults. It’s about 1 adult per 8-10 kids. For some reason, once you mix the age groups, the 1:4 or 1:6 ratio for the 3-year-olds no longer applies. So it’s constantly overwhelming at lunctime, and here I was getting unexplained knifing pain in my bladder. It wasn’t uterine. It wasn’t ovarian. It wasn’t cervical. I don’t normally get bladder pain.

Now, about a week prior, I’d had a yeast infection, which I promptly took care of with Diflucan. I got it because I didn’t shower before intercourse. Women with endometriosis are prone to yeast infections at the drop of a pin, and you and your partner both need to be clean before intercourse to spare you the chance of infection. I lagged in my duties.
Anyway, I wondered if Diflucan can cause a bladder infection, but in checking the side effects lists, I don’t see evidence of that. Perhaps the yeast infection had turned into a bladder infection? I’m still wondering about that.

So the bladder pain I had on September 16 only lasted a few minutes, then was gone. A few minutes of course feels like an eternity while it’s happening, but it did pass.

I did pretty good for the next two days - Friday and Saturday - though I did have some pelvic pain twinges on Saturday September 19. So perhaps I was good for only ONE day if you wanna get technical.

On Sunday, September 20, I woke with severe low back and pelvic pain.

As I was getting dressed, my back went out - my upper left scapula was pinched the most, and it was hard to breathe. I could feel the pain under the back of my ribs. I had no range of motion. I spent most of that day with intermittent back, pelvic and shoulder pain. I took half pills of Tylenol 3 and whole pills of Ibuprofen all day long. The pain would seriously disappear for minutes or an hour and then return again. It was crazy.

On Monday I had continued flank pain, and a cankre sore popped out around 11:30am. I went to the doctor right after work and was told I had swollen lymph nodes, that I was fighting something, but that I wasn’t contagious. The low back pain continued through the evening, and I went to bed with a heating pad that night.

Tuesday was more of the dame - low back pain, but get this - I awoke with shin splints. WTF!!!
I also had developed a sore throat, sores forming under the back of my tongue, moderate fatigue, and sore shoulders again. That day I also had some pelvic pain, and my left thumb broke open again. I had a nagging headache by 8pm that night. I napped when I got home, and my body temp dropped during the nap - I got goosebumps, I was so cold, and the house was 73°F.

I seriously started feeling like I was going crazy. But now, after reading the side effects for Diflucan, it all makes sense. I just wish I’d been more intuitive the last times I’d taken Diflucan, to establish whether this is always true - whether I always have these side effects - or if it’s something new because my body continues to grow weaker because of this stupid immune system disease called endometriosis.

Wednesday - sigh a breath of relief - I felt better.

But we’re not done, yet!

On Thursday, September 24th, I felt quick knifing very low uterine/bladder pain 2-3 hours after consuming 1.5 cups of Sierra Mist pop, which I was craving. I never crave pop anymore, so this must be a serious bout of PMS coming on. Of course, pop contains corn syrup, which ALWAYS causes pelvic pain whenever I consume it.

I didn’t bike to work at all that entire week.

On Friday, September 25th, I experienced intermittent dull uterine pain all day. However, after work, I decided to bike to my therapy appointment and from there bike over to the company BBQ. I was tired but I did it, in a show of stubbornness.

That night, around 10 or 11pm, I became very dizzy as I was leaving my friend’s house. The pelvic pain had ramped up while I was hanging out with my friends, and so I’d taken 600mg Ibuprofen. I don’t think the dizziness was from that, since I take Ibuprofen so frequently.

On Saturday - yesterday - our town was experiencing another heat wave. Despite being 87°F outside, my husband and I shopped at some local Halloween stores. Yesterday I consumed a white chocolate raspberry blended mocha (with cow’s milk) because I was really fatigued and craving the caffeine (HELLO PMS!).
Last night my husband and I were intimate and right afterwards, I felt nauseated, and then the cramps started. I checked myself and there was brown blood. I thought for sure I’d started my period. I went to bed wearing a pad but the bleeding stopped, never touching the pad.

Today I’ve been seriously tired. I slept for about 10 hours and haven’t wanted to get up all day. The low level nausea has been with me all day. I’ve had the feeling that my period is starting but every time I check, it’s not there. I’ve had annoying low back and pelvic pain all day.

It’s nearing 5pm and I’ve been on the couch the entire day. I had planned to attend a birthday party for a friend, a parking lot sale, and then see another friend play with his band tonight.

I’ve missed everything so far but the band, and I’m not sure I’m up for that, either.

So let’s recap - where did those 11 days go that I was so excited to live for?

Of those 11 days, I got to enjoy 2 days pain-free.

2 days.

Out of the past 27 days, I have enjoyed roughly 8 days pain-free.

I have not gone back to yoga class, and I’ve been in too much pain to do the yoga video that I own.

I have continually doing slow stretches and fighting through the pain. I often do the wide hip circles when not out in public (cuz doing those makes one look like a pole dancer, heh) in an attempt to ease the low back and pelvic pain.

To anyone who doesn’t suffer from chronic pain, I hope this gives you an educated visual, and I hope you understand it a bit better when I tell you just how tired and depressed I am.
Just because I have high hopes, doesn’t mean my body wishes to cooperate.

Oh and to those of you who still think wishful thinking and being positive will end my pain, you can go to hell.

The clock has already reset. I didn’t want to blog about this at first because it’s embarrassing, but for my own historical record, I really NEED to record this.

My husband and I were not careful enough during intimacy on our anniversary, and as a result, I was afraid of an unwanted pregnancy.

I know, it may seem as strange when the media feeds everyone’s brains with the lie that endometriosis always results in infertility. Furthermore, I’ve not seen anyone in the endometriosis forums bravely declaring that they don’t want children. No, instead the forums and media are filled with stories of women with endo who are also having a hard time trying to conceive, and are distraught over it.
Their situation is real and I feel bad for them. I have stage III endometriosis but I am unfortunately still quite fertile, yet I do not want children. If there were only a way to switch that with someone who wanted kids…

Because of my anxiety that I could become pregnant, I sought out emergency contraceptive (in the U.S. it is known as Plan B, and it is over the counter at the pharmacy to women 18 and older).
I have taken Plan B before, many years ago. I knew that it would make me depressed, and I have established that my body cannot tolerate synthetic hormones. But due to our carelessness, I needed peace of mind, and it was only a one-dose hormonal treatment, so I took the Plan B.

Wed. July 15 - anniversary - unprotected sex.
Thur. July 16 - first dose Plan B at 1:58pm. Within 30 minutes, I developed a gurgly stomach, which turned into stomach cramps and intermittent uterine pain for the rest of the day. I also experienced mild nausea. Heavy fatigue took over by 5pm - I could barely keep my eyes open. Later, I had a poor appetite - I did not want dinner. I forced myself to eat a banana before bed. I took a shower, forced myself to do some mild housework, and went to bed by 9:30pm.
Fri. July 17, 2009 - took last dose at 1:58am. I had crazy dreams all night involving tornadoes, floods, murderous gypsy types and a world of magick and sorcery.
Friday - Sunday was hugely emotional, depressive, moody, and angry for me. I spent much of the time not wanting to interact with my husband or anyone, because I was in such a bad head space to even try saying anything polite. I mean, even my husband was concerned about me, and at times got his feelings hurt, and would react by saying, “hormones.” I seriously agree - I also attribute the moods and anger to the Levonorgestrel.
Tue. July 21 - I had an unexpected sugar crash around noon. I only ever get hypoglycemia right before menses begins, because my hormones are out of whack. Ever since adhering to a gluten and yeast free diet since 2006, I don’t get the hypoglycemic attacks with regularity - ONLY within a few days of menses. So having a sudden sugar crash on July 21 concerned me.
Wed. July 22 - 12:20pm I had another hypoglycemic attack, AND began spotting. It was dark red “dirty blood” and looked a bit coffee ground-like sometimes. There were tiny clots. Shortly after going to the bathroom, the cramps started.

I checked rxlist.com for info:

“Some women may experience spotting a few days after taking Plan B™”.

“The effects of Plan B™ on carbohydrate metabolism are unknown. Some users of progestin-only oral contraceptives (POPs) may experience slight deterioration in glucose tolerance, with increases in plasma insulin…”

I took 600mg Ibuprofen, called my GYN and ordered a refill for Tylenol 3 (I don’t normally let myself run completely out but accidentally did so this time), and took off to the grocery store to get some ready-made foods in case I would be bedridden again.

The spotting lasted all day, and so did the cramps. On the pain scale, I’d rate the cramps as a 4 on the Mankoski Pain Scale. Over the course of the day, I also developed low back pain, but I mostly attributed that to having moved stuff around all day (and yes, I did wear a protection belt for lifting).

Thur. July 23 - I awoke around 5:39am from the pain. I went to the bathroom and found to my dismay that I’m full on bleeding - I filled the bowl with blood. The pain in my lower back became very strong, and I started to get a bit nauseous. The pain level was at 7.5. I took my temperature but it was ‘normal’ (normal for me being around 97.5°F, but I don’t have thyroid issues, so say all the blood tests I’ve gotten for the past ten years… riiiiiight).
I called the makers of Plan B and told them about my experience. They said it was all normal. They said some women spot and others get what looks like a full on period. She even said the level of low back pain and the cramping were normal. Still, she took a basic medical history from me to put it on file so they can have a log of adverse reactions up to date.
By 7pm I was severely depressed with suicidal ideation. I called the Plan B hotline again. They have no studies and no records of anyone ever experiencing depression as a side effect to Levonorgestrel.
Fri. July 24 - I bled through my pad, underwear and bedclothes, and went through a pad an hour since I woke up. The cramps were still persistent, ranging from 4-7 on the scale, and mostly centered in the lower back and vagina, or lowest part of the uterus if anything.
I endured a pelvic exam w/ speculum, which made the cramps worse. I did a pee test. Negative as expected for pregnancy. I was told that I am obviously having a reaction to the hormone from the Plan B, and there’s nothing to do at this point but to ride it out, taking Ibuprofen 3x/day, as it is supposed to help ease up the blood flow. The doc also is supposed to send in a script for some Tylenol 3 - not my usual supply - just a sampling as it were, to get me through this. I am referred back to my GYN, who has not returned any of my phone calls this week.
Had another hypoglycemic attack - at 12:43pm. The third in as many days, around the same time of day.
My GYN office finally called back to tell me that my doctor has sent in my Tylenol 3 prescription, which should be ready today. The office seemed indifferent to my Plan B story, but did say the pain with the bleeding seemed unusual.

I spent all last night into today digging through every diary entry I’ve ever made, be it handwritten or typed to myself in an email or filed somehow or another on my computer, because I know I detailed Plan B side effects before. I just can’t remember anything past a general sense of ‘I got depressed on it’.
With all my searching, I found three instances in the past ten years where I took Plan B, prior to the current run:

July 2001
S M Tu W Th F S
1 2 3 4 5 6 7
8 9 10 11 12 13 14
15 16 17 18 19 20 21
22 23 24 25 26 27 28
29 30 31

July 11 - got my normal period
July 13 - drove to Tahoe w/ my hubby (who was then my bf)
July 14 and/or 15, 2001: unprotected sex
July 16 - Period ended but I took Plan B anyway. Depressed from having spent money I didn’t really have that weekend, from getting sunburnt, from being careless w/ sex.
July 17 - continued deepening depression.
July 19 - feeling happier emotionally
July 20 - started spotting, then bleeding
July 21 - very heavy bleeding
July 22 - heavy bleeding
July 25 - stopped bleeding
July 26 - severely depressed and angry
Aug 15 - got my normal period late; bedridden from the pain.

December 2001
S M Tu W Th F S
1
2 3 4 5 6 7 8
9 10 11 12 13 14 15
16 17 18 19 20 21 22
23 24 25 26 27 28 29
30 31

Sun. Dec. 9 - Took Plan B (forgot to take 2nd pill). But one pill was enough to depress my central nervous system and I noticed the depression within a day.
Mon. Dec. 10 - took Flexeril to ease the back pain - I’d thrown out my back the week prior.
Mon. Dec. 17 - severely depressed. 3 hour mental breakdown. Convinced I was still riding the depression from the Plan B. My back was better by the 17th, however.

Did not mention bleeding as side effect in my long journal entry on Dec. 17, 2001. However, I had a phone conversation with my ma, who was still going through menopause at the time. I had asked if she could see a doctor to ease the menopause side effects. She said she can’t take hormone pills - they mess with her - make her angry, very bitchy and depressed. She said her older sister, my Aunt J, gets the same way. I told my mom that was VERY good family info to have on record.
It’s already been noted by my mom that several of her sisters had painful periods like I do. Adding sensitivity to hormone pills, and depressions locks it down to a known family history.

Well, you know how people are stupid and history repeats itself…

October 2002
S M Tu W Th F S
1 2 3 4 5
6 7 8 9 10 11 12
13 14 15 16 17 18 19
20 21 22 23 24 25 26
27 28 29 30 31

Tues, Sept. 17 Got my period, which was quite painful
Monday Sept. 23 Had a severe emotional breakdown
Tues, Sept. 24 Sister called and told me she’s pregnant
Sun, Sept. 29 Hubby (then bf) and I fooled around
Tues, Oct 1 Took Plan B, paranoid from fooling around
Fri, Oct 4 My sister arrived from Michigan to visit
Thurs, Oct 10 I became sick; strep
Sun, Oct 13 Sister departed for Mich, I called in sick
Mon, Oct 14 off work sick, went to doctor
Tues, Oct 15 off work sick, got my regular period
Wed, Oct 16 returned to work, still very depressed

Did not mention bleeding as side effect in my journal entry on Oct. 17, 2002. Still trying to find any emails or journal entries from that time frame to see if I talked about bleeding at all.

I’ll be adding the full text of those diary entries at some point, just so I have the history on this site.

I’d like to note for the record that Plan B has the same ingredient that is found in the Mirena IUD, which my gynecologists have been begging me to try since 2006.
Since I cannot even handle low doses of drospirenone and ethinyl estradiol synthetic hormones (as found in birth control pills), and now I know that Levonorgestrel also sets off the depression and rage, there is no way in hell I want a continuous dose of it through the Mirena IUD. I do not want a repeat of 2007, when I became suicidal on Yasmin, thanks.

My husband said he is going to look into getting a vasectomy.

In the meantime, I have to ride the rest of this nightmare out, and then in the next two to three weeks, endure more pain and suffering when my actual period reappears.
I hope that I can once and for all remember two things: be super careful if I don’t want to worry about pregnancy, and never, ever, EVER take Plan B or any synthetic hormone ever again. My husband said he is happy to remind me to never go near hormones again after seeing me get severely depressed from them twice, now.

I began spotting yesterday at work but ignored it as much as I could. I got through the workday without being in pain. I was actually too hungover to be in pain because I’d gone out for tiki drinks the night before and went overboard again. I slogged through the day as best I could. Working with children doesn’t allow you to take it easy in the least. I still had to run across a playground to get to fighting children before bodily harm could take place. I still had to leap over things in the classroom to get to hurt or frightened children quickly. Some young children just spontaneously erupt into tears before lunchtime - they have such a long day and just can’t take it sometimes.

When I got home from work, my endorphins from work were still going, but I was happy to sit and just zone out on the Internet for a bit. My husband got home from work and we proceeded to get ready to go out to dinner. Suddenly my energy dropped to zero and I thought I might have to go to bed right then and there, but I pushed on.
We had a tasty sushi dinner (yay payday!) and went to see friends for game night. Throughout dinner and game though, I sighed or yawned and was generally not completely there. I wanted to be, but my body just refused to cooperate.

I went to bed as soon as we got home from our friends’ house - just before midnight.

I woke early this morning in pain and confirmed that yes indeed everything was officially flowing and ramping up. Tried to go back to sleep but tossed and turned. Finally got up around 8:30am. Finally gave in to the pain around 10:30am and took a Tylenol 3.
It’s after 11am and I am envious that my hubby is still sleeping in like any sane person would do on a Saturday morning.

I already feel trapped. It’s a sunny beautiful day outside - supposed to be a lovely 70°F, and I can’t enjoy it without the pain and the pain goggles. Vision really does look muted because of chronic pain. It’s totally not crisp and vivid. Even when one is not on pain medication, the world through the eyes of someone in really bad pain is a bit matte and fuzzy, if not surreal, and it sucks.

I’m bitterly jealous that I don’t get a weekend mini-vacation before having to return to work on Monday.
Maybe my hubby will have a cunning plan for us today - we’ll see. I certainly can’t go anywhere on my own. I can barely decide what to feed myself when in this painful state.

The nanny job ended on March 6 and since that time I’ve been looking for a new job. I’ve applied to daycares, schools, and private families who are looking for a nanny.

I had two interviews with private families and both fell through because of my endometriosis being a deal-breaker (time off each month). I had a third person reject me by phone. This hurt me a lot, morale-wise. But I kept plugging along.

On Tuesday, March 31, I interviewed with a Montessori school. I was told to come back today, April 2nd for second round interviewing, and it was then that I nailed the job. But I almost lost it when I announced I’d be on honeymoon for most of May. They want me in there so badly that they made accommodation for me!

So… TODAY I GOT A JOB AS A TEACHER AGAIN!!!!

Because of this victory, george just couldn’t pass up a deal of his own. Call it a late April Fool’s joke if you will.

He showed up a day early - today - while I was at the school for second round interview and observation of students and teachers.

I did the grin and bear it routine. The pain never got too bad today, thankfully. But tomorrow I’m expected back to do observation again, and I’m expected to attend classes next week under the tutelage of the school owner herself, to officially earn my California Early Childhood Education (ECE) units.

I didn’t have to have this schooling when I got the daycare agency job last spring, because they accepted my university transcripts in lieu of.

This school however only approved one class from my transcripts. This is not unusual - every school and agency has their own idea of what coursework is acceptable - that’s why I had a hard time finding childcare work in California when I first moved here in 1997, and said screw it, and went to work in the dotcom industry, instead.

I’m excited that I got this job. I do want it. This will further my career and resume. It’s a golden opportunity, what with the ECE coursework being thrown in with the job offer.
But we’ll see if george behaves. We’ll see if I don’t lose this job the moment I’ve won it.

This of course made me very depressed.

After spending four hours in the school, when I had budgeted up to an hour originally, I went home starving and made lunch. I had to scarf down my food because I’d promised I’d take my father-in-law to the hospital to get his wound checked. He’d just had a fistula installed on Tuesday so that he can start kidney dialysis in a few months (he has diabetes and end stage renal failure as a result. His kidneys are only at 10% functionality right now).

Got FIL to the doctor in time but his wife, who was supposed to pick him up after his appointment, was nowhere to be found. She wasn’t answering her cell phone. I had to be at my own doctor (gyn) appointment in Berkeley, 21 miles away, at 4:30pm.
At 3:30pm, my FIL told me it was okay to go, so I left him at the hospital. I called his wife three more times. She never returned my calls. I called my husband to let him know this. He was pissed at his father’s wife as usual. I don’t blame him.

My husband ordered me to take the rest of the day off and just try to be still and relax so that the pain doesn’t ramp up.

No can do I told him - was on my way to my own doctor appt at that very minute (I’ll make an entirely new post about that, next).

I got to my appointment in time, despite rush hour and construction, because I sped like the devil. Still unable to reach the FIL’s wife, I called him instead. He said he was fine and that they were now on their way home. This means his wife made him wait nearly an hour past the time she said she’d be there!!! This is so typical of her. UGH.

My appointment was fine but nothing much new was able to be told to me regarding my illness (endo) or complications from it, because the test results from the primary care doctor visit on Saturday haven’t come in yet. More UGH.

Endured more shitty traffic on the way home, got home and met husband there. He was home early cuz his car had been in the shop, was all fixed, and so he came home early on the bus to get his car. Once again, he told me to relax and destress.

That’s when the power winked out and back on again, rebooting my computers.

This is the second time since last night that the power has done this. The power only goes out in the computer room, hallway and bedroom. It is not a tripped switch. We can’t figure it out. I called the landlady and left a message.
Because of the quick outage, the computers rebooted as I said, but the DSL router didn’t come back up. I power cycled it twice. I called tech support and left a message. I logged into my linux box and checked out the ip masquerading and network settings to make sure it was all fine.

I then decided that since I didn’t have Internet, I may as well take that time to offload the phone pix I took at the doctor’s office. While sending the files from my phone to my mail account, the phone spontaneously rebooted.

WTF.

And no, we are not in a Mercury Retrograde. I do still keep up on astrology stuff, even though I’m no longer maintaining my old website for that. Well…not maintaining for now. I hope to take up that torch again in the future.

After an hour, the DSL router automagically came back up and I was able to get my Internet fix before acute shock set in.

We’re all fine here now, thank you. How are you?

…Just in time now that I’m settled in bed with the laptop all cozy…for the cramps to set in.

Today started out so good. Whisky Tango Foxtrot.

I forgot to follow up on the disability thing. I tried to file for state and federal (Social Security) disability on March 16 and 17 respectively. I was turned down over the phone by state and got a rejection letter in the mail from federal after being grilled for an hour and a half by phone by them.

I am not shocked, nor surprised.

Today was the New Moon. I spent the day cleaning house (cuz even housecleaning stopped happening in the past month) and only putting healthy food in my body. I moved about calmly and deliberately and tried to remember to breathe and not feel so overwhelmed by life in general.

In general, I’m really bitter right now that I’m having pain again, not just pain mind you but continual pain. Before my surgery, I experienced moderate pain and fatigue up to two weeks before menses every month. Surgery brought that down to a few days before menses. This gave me back a week and a half of my life every month for two years until November 7, 2008, when complications from a bad ovarian cyst took hold, which left me debilitated for all of November. I experienced nine good days in December (not consecutive), then had a much better month both in January and February.

Now, something’s up again. Something is wrong. It’s not ovarian pain. It’s not a cyst.

At time of surgery, some endo was found right near the bladder. It was cauterised instead of cut out because the surgeon was afraid she’d puncture my bladder. Cauterising the surface tissue does nothing for the disease that’s deeper in. I know the endometriosis is growing and spreading again.
On top of getting pain two weeks before menses again, I’m now getting lots of bladder issues (frequent need to urinate but can’t, feeling of urinary tract infection (UTI) coming on). I’ve only had six good days this month (not consecutive). If a UTI were coming on, I’d have had it already. I used to get them all the time as a child (now known by endo experts as a possible early warning sign of endometriosis).

My annual gyn visit is in one month. I’m sick of doctors telling me I’m too pre-emptive with stuff, even though it turns out I’m usually right. But I’m going to wait on this one. I’m going to keep gathering evidence over on ReliefInsite.com and through my calendar and journal, and present it at my appointment, and demand my urine be checked for blood to rule out endo perforating the bladder. I’m going to get it definitively on paper how far my uterus is tipped (an ultrasound tech in December told me I have a tipped uterus but didn’t note it). I’m going to get it ruled out if possible if either A) endo pulled my uterus that way like it had done to my ovaries and/or B) the tipped uterus accounts for some of my pelvic pain (depending on how far tipped it is). If the discomfort worsens or doesn’t otherwise improve, I’m going to first rule out UTI and then demand Interstitial cystitis (IC) be ruled out, too. This means I will have to go for a cystoscopy and will have to have my potassium levels checked. My friend, who has IC, says he is confident that I do not have it. This of course reassures me greatly.

I spent time today reading about pH Balancing, and decided after seeing several websites advertising supplements for balancing, that I should just go down to the local hippy store and see what they have on tap. I came home with some pH strips and supplements for pH balancing. My first urine strip at 8pm came out to 7.5, which is in the high end of the normal range. I forgot to do the saliva test so I’ll do that later.

I also bought more goat milk yoghurt and flax oil, and will be starting up the Budwig Diet again (I let it lapse because I got tired of putting effort into food prep, but I must accept that’s my life, now).

Last night, I got to meet one of my husband’s high school friends whom he just reconnected with (it’s our 20-year anniversary this year, so classmates are popping up all over the place). She’s a physical trainer, and showed me some pelvic strengthening exercises.

Today I set calendar alerts on my cell phone to remind me to take my supplements, because I’ve fallen behind on that again, too.

I need to also set calendar alerts to remind me to do Qigong and Chi Nei Tsang every day, and the exercises my hubby’s friend showed me. I’ve been doing it when I remember, it’s not like I’m not doing it at all, but still.

I have a sneaking suspicion that after about three days of all these alerts going off, I’m going to become Edie in AbFab, throw the phone out the window, and scream GIVE ME BACK MY LIFE!!!

Stay tuned…