I Will Not Suffer In Silence

Let’s start with a review:

My second laparoscopy was December 17, 2010, in which I was diagnosed with new endometriosis growth, and put at Stage I.

My surgeon found endometriomas on both ovaries, and cleaned out as much as she could. She removed a 1.4cm endometrioma from the right ovary, and had to leave the endometrioma in the left ovary, because it was too deeply embedded, and I did not want to lose my ovary. There were adhesions pulling the left ovary back towards my uterus again, just like in 2007, so she cut away the adhesions and repositioned the left ovary as best she could.

I spent the next three months healing from the surgery, and still experiencing debilitating pain. However, between pain cycles in May and June 2011, I experienced 20 and 17 consecutive pain-free days respectively – the highest number of consecutive pain-free days EVER since I began meticulously recording my cycles.

In fact, for the entire year of 2011, I never fell below 10 pain-free days in a single monthly cycle, which was an improvement over the year before.

Beginning in April, 2012, I experienced moderate nausea on the 14th, 17th and 19th (throughout my cycle). I had to take ginger tea, the nausea was so intense. This to me usually signals an ovarian cyst, so I called my surgeon and scheduled an ultrasound.

Then, on May 3, 2012, something unexpected happened, that has (I think) nothing to do with the endometriosis.

On May 2, 2012, the workplace had the carpets cleaned as per routine, but when I walked in the building on the morning of May 3, I immediately had respiratory distress. Now, I have a history of breathing problems and chemical sensitivity dating to 2009, when the interior of my apartment was sprayed by an exterminator for ants at the landlady’s request. But I’d never had wheezing issues or felt like I was drowning in lung fluid before.

On May 3, my breathing got worse over the time I was waiting for a backup assistant to come into the classroom, and by the time someone arrived, I was a sobbing basket-case from not being able to breathe. The director of the school drove me to my doctor’s office, where I had some preliminary tests run, and was given an albuterol inhaler and an epi-pen. I was told I probably have asthma.

Three weeks later, I finally got to see my allergist, who ran me through a computerised breathing test, and detected a ‘lung blockage’ and gave me a steroid inhaler. Within 2 days on the steroid, I had ‘roid rage’ and discontinued it. I continued taking the albuterol inhaler, though. Four weeks after that, I was given another computerised breathing test, and nothing had changed. I was given another steroid, and this one worked for about three weeks, at which time I became clinically Manic on the stuff, so discontinued it. I have used the albuterol throughout, as a ‘rescue’ inhaler.

So the ovarian cyst took a back seat to a new health condition; asthma.

I researched whether asthma is also an autoimmune disease, and was dismayed to find that people don’t really know much about how asthma develops. Even my own asthma specialist doesn’t know if asthma is autoimmune.

The reason I want to know is twofold: first, endometriosis is autoimmune, and when a person has one autoimmune disease, it means they have other concurrent as well as other undiscovered autoimmune diseases.
Second, there have been cases of lung endometriosis.

My family has a history of bronchitis, emphysema and endometriosis, so this is something I should be concerned about. I’ve never smoked cigarettes, but I did grow up in a heavily industrial and polluted area with pack-a-day cigarette smokers. I’ve always been sick with sinus infections and bronchitis every winter and/or spring.
Oh and hey, as of a 2010 study, it appears that emphysema may be autoimmune. File that away for potential future reference…

In the meantime, my periods were getting worse, and I was back to being fully bedridden during each cycle – something I’ve not had happen regularly since before surgery in December, 2010.
This means I had just over a year and a half of slightly improved health from surgery. That is to say, I had a longer uptime between periods, and one or no bedridden days per cycle, BUT I am still getting up to 7 or 8 on the pain scale at times, I am still experiencing heavy bleeding, and I am still consuming Tylenol 3.
Basically, it boiled down to “I’ll take what benefit I can get from the surgery.”

Once I was being treated for the asthma, I went back to address my worsening symptoms, still suspecting an ovarian cyst. On July 11, 2012, I saw my surgeon, who performed a vaginal ultrasound. She detected a 7mm (0.9cm) endometrioma on my right ovary.

For those who are questioning, YES, it IS possible to detect endometriomas through vaginal ultrasound. My surgeon visualised the 1cm endometriomas on both ovaries in September, 2010; three months before my surgery (more on sizing in a moment).

So my suspicions are correct in that I once again have an ovarian cyst, but I had not anticipated an endometrioma. I thought it was just an ordinary cyst, and I wanted to get specs on it to make sure it wasn’t too large to reabsorb.

What I got instead was really bad news; an endometrioma does not reabsorb or go away.

Ovarian cysts are formed when the egg doesn’t fully release from its follicle, and just keeps growing inside of the follicle. The cyst can live in or on the ovary, or in the fallopian tube, and most often goes away on its own, despite causing some nasty pain and/or nausea while it is present.

An endometrioma is “a tumor containing endometrial tissue.” Endometriosis has traveled outside of the endometrium and has embedded itself onto or into the ovary, where it begins to grow. It is called an endometrioma when it goes from being an embedded implant to a growing, swollen, fluid and blood-filled foreign mass. It is now called a tumour.

I’m told that endometriomas are not considered a threat under 4cm in size. Past that, one should be closely monitored in case the tumour turns malignant.

We discussed how to manage the endometrioma and the endometriosis in general for the long term. My surgeon knows I will not take hormone therapy. I made it clear to her that I also do not want any further surgery unless my life depends upon it. I told my surgeon that I just want to be made comfortable til I hit menopause. I want pain medication and pain management. I’ve already put myself back into acupuncture, massage and naturpathy for alternative healing.

My surgeon exclaimed that it’s such a long time before I hit menopause. I told her no, my Ma hit menopause by age 43. My surgeon has referred me to a pain management clinic, and is still urging me to try the Mirena IUD, which puts out a small amount of levorongestrel (the same ingredient as in emergency contraception called Plan B). Due to my extreme sensitivity to hormones in the past, I don’t care how small the dose is, I’m not touching any further hormonal therapies.

I had a phone call with my Ma today, and confirmed that she hit perimenopause by the time she was 40, and was definitely in menopause by the time she was 43. She said her mom also had early menopause.

So that’s where I am at…waiting for menopause to hopefully burn the endometriosis out. It’s a hope, with full knowledge that it might not work.

I just discovered a blog wherein a fellow endo sister asked others to share their story. So I sent her my story, and then realised I really didn’t have a narrative of it here on my blog. So here is my story:

I got my first period at the age of 14 in 1985. By the time I was 15, I was vomiting from painful periods. Everybody told me I was being a baby about it. My mother threw Midol pills at me and told me to shut up. My friends did not have the pain as bad as I did, so I knew there was something wrong.

In 1991, I was put on Loestrin, firstly as a birth control method, and secondly with the potential benefit of easing my cramps. I went psychotic inside of 3 months, and stopped treatment. I wasn’t very good at recording details of my pain or treatments back then. All I have is the memory of wanting to kill everything in site, and weeping all the time, so I stopped Loestrin treatment.

In 1996, when I was 24 years old, I was fed up with people telling me that this pain was common to every woman, when I saw for myself that this was a damned lie. NOBODY around me was going through what I was going through, and I certainly wasn’t making this shit up. I hired a new gynaecologist – a man this time – and he told me I hit every symptom in the book for Endometriosis. He scheduled me for surgery, but my boyfriend got hired across country for a new job. I desperately wanted to go with him and leave the hometown we’d been trying to flee from for years. I promised the surgeon I’d schedule surgery as soon as I moved across country. How hard could it be? I’ve already got one doctor saying I likely have Endo. All I have to do is take that paperwork with me when I move, hire a new gynae and get the surgery.

THAT WAS A MISTAKE.

See, I knew nothing about health insurance in the United States. I had great Preferred Provider Organisation (PPO) coverage when I lived in Michigan. When I moved to California, suddenly the health insurance of choice for employers was Health Maintenance Organisation (HMO) coverage.
Under HMO insurance, it’s all about preventing illness, not treating existing illness. If you have existing issues, they don’t want to talk to you – they want to deflect you to other services. I spent the next ELEVEN YEARS begging doctors for surgery, only to be told I don’t have endo, I ONLY have Irritable Bowel Syndrome, or I ONLY have Dysmenorrhea, or I am simply out of shape and need to spend more time at the gym (I was bicycling 30-60 miles on average during this time, for fun!).
I was referred to chiropractic for period pain!! I was flagged as drug seeking for the pain!!

In 2001, I convinced my HMO primary care doctor to send me to a surgeon for evaluation with the suspected diagnosis of endometriosis. I was so excited to be so close to an official diagnosis. When I got to the surgeon, she flat out denied me surgery! She said I ONLY have Dysmenorrhea. She took a biopsy of my cervix, without any pain meds, knowing full well I’d driven there myself with no one to drive me home. I left her office feeling completely violated and abused. I noted the degree on her wall – University Of Alabama. I wondered if all doctors who trained in the South were this barbaric. She said my cervical biopsy came back normal. I fired her.

In 2005, I once again sought the help of a male gynae, hoping for a compassionate doctor such as the one I had back in 1996. Nothing could be further from the truth. This doctor looked me up and down with disdain as I told my story, and replied that I did not have endo – more likely it was bladder infections or sexually transmitted diseases! I noticed the degree on his wall – University of Kansas. Again, I wondered if all doctors trained in the South were specifically trained as barbarians. He was rude and condescending, but I let him perform a pap smear, hoping to exonerate myself. When the pap smear came back normal, and again he insisted I did not have endo, I fired him immediately.

Finally, in 2006, a friend referred me to her surgeon, and I had also finally scored a job which allowed me to have PPO health insurance. I saw the surgeon, told her my story, and she scheduled me for surgery. In February, 2007, I was laparoscopically diagnosed with Stage III Endometriosis on the ovaries, bladder, uterus and peritoneum. I was also told that I have a retroverted uterus and an everted cervix, which could account for Dysmenorrhea aside from the endometriosis. On that note, I was finally officially diagnosed with Dyspareunia. Why the hell wasn’t I told any of this when I had my cervix biopsy back in 2001?!?

I filed complaint against the surgeon who saw me in 2001, who had refused to give me surgery and who had said emphatically that I did not have endo. She was, coincidentally, a colleague in the same hospital as the surgeon who DID diagnose me with endo in 2007.
The hospital performed an investigation and came down unequivocal on her side, instead blaming my primary care doctor for improper referral, which had confused the surgeon, who did not know I was there for a surgery consult!! Are you kidding me?!?!

I experienced NO pain relief from the surgery. Initially, I was put on Yasmin to suppress the ovaries after surgery, but within one month, I exhibited the terrifying symptoms of Akathisia and Anhedonia (I just learned of the term Anhedonia from another fellow endo sister’s blog post, entitled Progesterone intolerance: Loss of enjoyment).

Two months into the Yasmin treatment, I was completely suicidal and had to be placed on 72-hour lockup while the doctor stopped the Yasmin treatment and fed me full of Xanax around the clock.
After that mess, I found that I did experience longer amounts of time between endo flares, where I was more often pain-free and had more energy. Each menstrual cycle however was the same as it had always been – I was bedridden from the pain. Six months post-op, sobbing in the surgeon’s office, she admitted to me that she had not gotten all of the endo out of me – that there was a spot on the bladder reflection – she was too afraid to get to it, because she feared she would have ruptured my bladder.

I knew this meant I’d have another surgery.
Three years later, in 2010, I had my second laparoscopy, and was re-diagnosed with Stage I Endometriosis. Again, my uterus and ovaries were covered with endo, and now endometriomas in the ovaries as well. There was a complication during surgery – they accidentally ran into the mesentery
The second surgery showed better results, but I have never been completely pain-free during my cycle. I may have spent far less time bedridden in 2011, but I still experience level 6 and 7 cramps, and I still have to come home sick from work. On the upside, I experienced 20 consecutive pain-free days in a row after this past surgery. It was amazing.
Of course, 14 months post-op, the endo symptoms are returning again. I have decided against further surgery, since I’m in the home stretch for menopause, which should begin anywhere in the next 6 to 10 years. That seems like a long time, but when surgery has been an ineffective pain management tool for me, and I’ve already been suffering with endometriosis for 26 years, I choose my battles carefully. I know the behaviour of the endo in my body. I have figured out my windows of uptime. I’m tired of hormonal and surgical experiments to quell the pain, which only brings up new and more terrifying complications.

I am fully aware that endometriosis could continue to ravage me despite entering menopause. If that becomes the case, I may go in for the big surgery – hysterectomy. Unfortunately, since the endo attacks my ovaries, I’d have to lose them, which means being put on HRT. If there’s ANY endo left in my body after a hysterectomy, then the HRT could stir up a new hornet’s nest, because endo feeds on any estrogen – whether natural or synthetic. There’s also the issue of progestin intolerance, which I am convinced was the case in leading me to become completely mental when I was on Loestrin and Yasmin. So far, I have refused any other hormonal treatments. No Lupron, no Danazol, no GnRH treatments of any sort – none of it. I refuse. I would rather have pain every 25 days for up to 4 days than ever deal with Akathisia, Anhedonia and planning suicide again.

For further information, see Things I’ve Tried To Combat Endo.

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

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

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

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

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

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

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

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

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

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

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

So naturally I went dancing.

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

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

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

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

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

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

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

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

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

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

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

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

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

Well I’ve been meaning to keep you updated – and myself for that matter – on the progress and setbacks as each month post-op goes by.

However, I’m nearing the end of a teaching certificate program, and I’m working full time as an intern teacher, so I’ve had very little time to spend thinking about long narration of my menstrual woes.

I’m due on Sunday.

Parent observation week at school is next week. I’ll likely be out at least a day due to the pain. :(

I’m still missing 1-2 days of work each month, but it’s better than 3-4 days each month.

I’m under a lot of stress with this internship and trying to graduate a preschool class, take care of a stressed out head teacher, and get my thesis written and presented.

I tried using a progesterone cream for pain management on May 15, and within 6 hours I was a mental wreck. I’m putting off further experimentation with it until after graduation.

I’m back to the usual PMS cravings from all the stress. Been eating cheetos and chocolate again, and drinking more caffeine. Of course this ups the inflammation, I know.

That’s all I have time to say here today. Wheeeee.

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

This is really great post-op news!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

GUESS WHAT.

He made no mention whatsoever!

ASSHOOOLLLLLLLLLLLE!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And now for the rejection list of treatment options:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So the bad news is:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Then the pain ramped up after lunch. :(

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

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

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

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

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

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

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

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

I am so hurt and angry.

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