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.

George arrived on Monday, September 26th. The pain was minimal and well managed with Ibuprofen, and I was able to work a full day.

However, Day 2 of my cycle had things ramping up considerably. I woke with moderate pain and bleeding, but still went to work because it was “parent observation week”, and my head teacher made it quite clear that she needed me there, and was not pleased that my health chose such an inopportune time to not be cooperative.

These are not her exact words, but damned near close. When I had given her a heads-up about my health the Friday before parent observation week that my next endo flare was due, her exact behaviour and words were to let out a tsk, a fed-up loud sigh, drop her shoulders and give a look of disdain as she exclaimed, “You’ve GOTTA be kidding me.”

She later apologised, but told me she was feeling overwhelmed/anxious at the prospect of anyone else being in the room with her that week, because the children would be more out of sorts with a substitute around, and she did not want the parents observing the children under those circumstances.

I understood where she was coming from, but I did not appreciate the giant guilt trip because of her anxieties. Her guilt trip is what led me to make the choice to be there to support her, thus pushing the limits of what my body could handle during an endometriosis flare.

So on the second day of parent observation week, I managed my pain with 1,600mg of ibuprofen. Here’s me first thing in the morning, popping 800mg of Ibuprofen in an attempt to get the pain under control (it worked):

Popping 800mg Ibuprofen before work

I stayed for the whole school day, more than fulfilling my obligation to my head teacher, since parent observation hours were over at 11am. However, there were resource classes that I needed to take the children to (library and computer class), so I stayed. Then there was naptime, so I stayed. At the end of the regular school day, before extended care started, I experienced a sudden flare of pain and sympyoms, right after consuming my last dose of meds.

Dammit, I tried to do overlap but the pain snuck in, anyway. My whole body went weak, and I got dizzy. It became hard to walk. I felt like lead for hours. This is ‘normal’ for endometriosis. The lead weight and crushing fatigue sucks. I know part of the fatigue is from all the Advil I was taking, but at least the pain never got above a 6 on the pain scale that day.

I went home and slept for 4 hours.

I then woke in a panic – it was 7:30 and I had not set my alarm! I scrambled out of bed, heart racing, thinking I would be late for work! Then my husband told me it’s PM, not AM.

And I hadn’t even had any Tylenol 3 that day. I was just that screwed up from the pain and fatigue. I was up for a couple of hours and then went back to bed.

I woke in searing pain the following morning, on September 28, just before 5am. I had nausea with the pain. I gingerly got out of bed and took half a Tylenol 3, because I needed to be up for work in the next hour and a half. It took about 35 minutes for the medicine to kick in, with me suffering there in bed the entire time. The Tylenol 3 mostly managed the pain once it did kick in. When my alarm went off, I got up for work and took a shower. I experienced heavy bleeding and moderate pain.
In a daze, I ate breakfast, and went to work. I took a total of 1,400mg of ibuprofen that day, and worked a full day in pain, because of the above-mentioned parent observation week.

Thursday, September 29:
Once again, I was awakened by searing endometriosis pain. This time it was 1am. I popped a Tylenol 3 and 600mg Ibuprofen, and waited for it to kick in. By 2am, I was dissociated enough from the pain to go back to bed. My alarm went of four hours later.
I still required 1,200mg additional ibuprofen to get through the workday. I was very tired and crampy, despite the bleeding tapering off to spotting.

Friday, September 30:
This was a daycare-only workday, as the head teachers were conducting parent conferences all day. This is usually loud and high energy, and wild, as three classrooms’ worth of children are condensed into one large classroom for the day. Despite abundant assistant teachers and teacher-trained assistants in the room, it’s like trying to get monkeys to come down off the chandeliers on a daycare-only day. I had low energy and was spotting, but I managed to get through the work day. I did not take any medication that day, because I was fed up with how much I’d taken all week.

Saturday, October 1:
I was still experiencing low energy post cycle, but I was expected to be at a Child Development refresher class all day. I accomplished this with my inner child kicking and screaming the entire time.

Sunday, October 2:
As happened after my last menstrual cycle, my anxiety was way up after this cycle. It’s not normal, but it’s happened twice in a row, now. Hmmm. I had to do another full day in the Child Development refresher class, and woke up with swollen eyes. As the day progressed, my right eye got worse. By 2:30pm, half of the eye was blood red.
Wonderful. I’d developed pink eye – and likely got it from training center the day before. My pupil in the right eye was bigger than in my left eye by 6pm. I called Kaiser Permanente, who freaked out about the pupil because of my age, and they urged me to go to an urgent care Kaiser center. This, after my whole weekend was shot by being in a training class, and now I have to sit in an ER? I was NOT happy. The result: contagious pink eye. I was given antibiotic drops, which I had to take for 10 miserable days.

Monday, October 3:
I missed work due to the pink eye. Had I not gone to the training class, which was foisted upon me last minute, I would not have gotten pink eye, and I would not have missed work. On top of that, I experienced left side stabby ovarian pain all day, despite the fact that my period had just ended. How’s that for a kick while I’m down?

My immune system hates me. I wish I could fire it. I’d pushed it to its limit by working during an endo flare, and the pink eye was able to sneak in. It’s always something.

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

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

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

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

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

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

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

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

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

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

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

So that was Friday.

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

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

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

Before

After!

After :)

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

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

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

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

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

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

Admiring a new iPad

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

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

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

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

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

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.

Wednesday, January 19, 2011

Just before a bowel movement, I took 600mg ibuprofen. The pain was worse right before the bowel movement, and settled down after.

Throughout the day, I was able to be up and out of bed.

That day, my chosen sister’s husband phoned me to tell me that my sister had lost her baby. She was nine weeks pregnant, and less than a week earlier had announced it to everyone. I broke down and cried.
So January 5, January 15 and January 19, people I know lost their babies, all for different health-related reasons, at different stages (two in utero, one newborn). Two are endo sisters. The third is my chosen sister, who does not have endo, but who is RH positive and has had to take RhoGAM shots during each pregnancy. Her doctor assured her the RH factor likely had nothing to do with it, and that she did nothing wrong – just that sometimes development just stops. But of course she’s devastated. Three women I care about have been basket cases this past month for good reason, and then there’s my dying co-worker. I really have cried a lot this month for people.

I worked on homework on Day 33, sitting at the kitchen table on a hard wooden chair. Around
5:40pm, a migraine set in. I am not prone to migraines, but this past week I had been back on narcotics (Tylenol 3) for menstrual pain, so perhaps that is what kicked up the migraine.

I had to stop my homework because I had developed light sensitivity on top of the crushing head pain. A shower did not help. A heating pad to my face and head did not help. Shut-eye in a dark room with a heating pad over my eyes did not help. An endo sister suggested I try Zomig so I looked it up. I took 5-HTP instead, because I had it on hand, and it contains 5-HT. Similar enough, why not?

That damned migraine lasted until I drank caffeinated Irish tea and put a cold pack on my neck (thanks to endo sister Lhia-Clare!). At that point, the migraine downgraded to headache. It was 9:10pm – the migraine had lasted three and a half hours. Ouch.

At 10:30pm my husband massaged me, centering mostly on my upper back while I lay on my stomach.

Forty minutes later, at 11:10pm, I guessed I was having what we call my “last gasp” – a bloody spurt and lots of blood clots and pelvic pain, along with low back pain. I took a whole Tylenol 3 pill, applied multiple heating pads, and went to bed whimpering.

Day 31 Post-op
Monday, January 17, 2011

First day of george. Dark brown and thick w/ some debris and clots. Took 1/2 Tylenol 3 and 2 Ibuprofen (400mg). Then an hour later I had to take another 1/2 Tylenol 3. I was stoned for much of the day. Had to lay down for much of the day. I wasn’t totally bedridden, but I was super stoned and tired.

The pain is same as it ever was, but now I’m also experiencing a painful pubic incision; it feels like the bleeding is going to come right through the incision. UGH.

I must stay positive & give it a bit more time – see if things even out.

Day 32 Post-op
Tuesday, January 18, 2011

Second day of george. Woke and took 1/2 Tylenol 3 and 400mg Ibuprofen. Then an hour later I took another 1/2 Tylenol 3. Another stoned day. At least my tolerance levels went way back down, and I have more mobility such that I don’t have to take 2 at a time every three hours like I did after surgery.

Again, the pain is the same as it ever was. The heavy bleeding is the same as it ever was. Today the colour went from dark brown to dark red. It’s still thick. I have more clots today.

At 11am state disability called. Apparently the assistant surgeon (Skillern) screwed up my disability forms! He didn’t say how but the guy sighed a lot. Still no pay for the foreseeable future! Thanks, Dr. Skillern! Hate you! This is the same assistant who was always demeaning and rude. I want to set her car on fire.

Today I did nothing all day. I was fully bedridden all day. I am really not okay with this. I’m so impatient to be healed up and for the surgery to have ‘worked’.

When my husband got home from a day of gaming with friends (he’s still unemployed), he ordered Indian dinner for us. I went to the couch and sat down to eat with my husband (I had Saag Paneer). While eating, my male cat backed up against the wall by the door and peed all over the wall!!! It of course totally ruined our night. Adrenaline kicked in and I got up improperly (not watching my body movements to be gentle on myself), I scooped up the cat, we shoved his face in the urine soaked wall, and I put him in the shower and closed the shower doors. I then cleaned up the piss and went all over the house bending over and stooping down and looking for more piss. There wasn’t any more that we could detect.

I swear it was an hour later when the adrenaline wore off, and I got insanely tired.

But I did not want to be tired, so I stood up and walked around the house. This of course kicked up the cramps. OF COURSE. At that point, I took a full Tylenol 3 pill and back to bed.

From bed, I wrote an article for my website, so at least I can say I did something today.

Sunday, December 19, 2010

When I had surgery three years ago, I counted the same day of surgery as ‘Day 1′ post-op.

This time I’m counting the first 24 hours post-op as Day 1, so that means Day 1 post op began Saturday, December 18 at 10am.

I was finally released from the hospital by 2pm on Saturday the 18th, and we got me loaded into the car by 2:45pm. We got home by about 4pm because my husband drove slow where he could to try to spare me the bumps in the road, and because traffic was really bad. Once on the freeway across the Bay Bridge, it wasn’t so bad. But San Francisco and Oakland city streets are a different story. I was crying.

From December 18 to December 20, I took two Tylenol 3 every 3 hours religiously for the pain, so I was constantly loopy.

I noticed by Sunday (Day 2 post-op) that I could already yawn. I couldn’t even do this very well on Day 5 three years ago. All that “10 deep breaths every hour” stuff in the hospital really paid off this time!

I am walking earlier than last time – though I was made to shuffle to and from the bathroom in the recovery room after surgery last time, I was not ordered to walk the length of the corridor and back again before my release, and I certainly wasn’t motivated to do any walking once I got home.

I had two moments of Note to Self over the weekend: first, if you are allergic to everything like I am, always bring some of your own food with you to the hospital in case you are kept longer than you planned for.
Second, always bring your own medication with you to the hospital, and ask for your own type of meds as soon as possible after surgery, if you know in advance that the morphine derivatives that they put you on won’t work. UCSF seems to prefer Dilaudid initially, then Vicodin for pain managment, but those medications leave me with nasty side effects. The first night after surgery, I was already requesting my usual Tylenol 3. When they discharged me Saturday afternoon, they forgot to give me my last dose of Tylenol 3, despite my asking for it a few times. The day staff on 4 East leaves something to be desired.

As of Day 2 post-op, I realised there’s another important thing to remember: count your pills! Record every pill you take so you don’t overdose or short-shrift yourself!

It was on Day 2 that I got confused as to how many pills I’d taken, and so I did a manual count. Thankfully, my memory of the last 24 hours was good.

Pill counting

Another thing that occurred to me on Day 2 post-op was to remember to count how many hours I am awake and asleep. For the first couple of days, I was up for 1 to 2 hours, and asleep for 1 to 3 hours all day/night.

December 19, 2010, 4:20pm – great news! My bowels work! ;)
It was the thing I was fearing most, just like last time – to have a first bowel movement after surgery. I did not force this one, and it was not solid like last time. I ate solid foods and the wrong kinds of foods too soon after surgery last time. This time, I took Miralax one day after surgery, and was able to have a bowel movement two days after surgery – that’s two days sooner than I did last time!

A note about the weather: it’s hard to go walking outside of the house when it’s pouring down rain. It’s been raining since Thursday, December 16.

A note about my diet: I’m eating cream of rice cereal with mango mixed in. I’m drinking lots of smart water and lots of Trader Joe’s free-range chicken broth. I’m eating jello, almond-milk pudding, and Amy’s brand gluten-free, dairy-free freezer mac ‘n cheese. No meat other than the chicken broth.

A note about what I’m wearing – a nightgown! First time since childhood I’ve worn a nightgown. I wish I would have purchased several of these.

A nightgown is your best friend right after laparoscopy.

Day 1 post-op

I had blood drawn at 4am and again at 7am Saturday morning. I didn’t really obtain deep sleep all night, so it wasn’t too bad to be woken up by the nurses. I think I got up for the day before 8am.

Before 9am, my surgeon Dr. Giudice came in to see me. She told me that overnight, my blood count had dropped, and she was concerned. She told me that before surgery, my blood count was 34, and right after surgery, it was still 34, but at the 4am blood draw, my blood count had dropped to 27.

I asked her what that meant. She said that if my blood count gets to 20, they’ll have to open me back up again, because it means internal bleeding.

My heart dropped. Panic began to set in, but I didn’t want to start screaming like Ren & Stimpy in Space Madness. Meanwhile, my surgeon was talking about blood transfusions if I stay in the 20s with the blood count. She suggested that I start asking friends who would be willing blood donors, rather than going to the blood bank.

I emphatically told my surgeon with a smile that my next blood test would be 33. She said that her realistic expectations were 27-29. I told her it’ll work out, you’ll see.

At this point I cannot recall if she showed me all the photos of my surgery on Saturday, or if it had been Friday night. In any case, I’ll detail it, now. My surgeon told me that I am currently stage I or stage II endometriosis, because it was centered on the ovaries and uterus alone. She could not find the 1cm endometriosis implant on the bladder reflection, and said that sometimes, implants disappear like that. WHOA. CRAZY.
She also found no endometriosis on the bowels or the rectum or the vagina, THANK THE GODS.

The left ovary was adhered to the side of my uterus this time, and all the adhesions were cut away and they freed the ovary up again. Endometriosis was burned off the exterior of the uterus and the pelvic sidewall. I think the left ovary is the one that has an endometrioma dead center in it, so they could not get to it without destroying the ovary. I am assured it will not cause pain.
The right ovary had two endometriosis surface lesions, which were burned off of it.

Dr. Giudice took a shitload of photos of my surgery – before and after shots – and they were not blurry like the one single ‘after’ shot I got from my last surgery.

When my surgeon left, I drew a deep breath, suppressed a scream, and then called my husband, who had gone home to try to sleep in a real bed.
I tried to sound as calm as I could, but as the words spilled out about the low blood count, my voice got higher with panic. This news of course made my husband panic. He panics by getting silent on the other end of the line. He then said solemnly that he’d be there as soon as possible. I apologised and said I just need him physically close, is all, and not to worry, that it will work out, but that in the moment, I needed him real bad.

I then posted to facebook, asking if anyone out there is O+
Nobody was who saw that post go by that day. My husband is O+ but the surgeon refused him as a candidate outright, in case we want to have children some day. It messes with the antibodies or something. Feh. We don’t want kids. Feh.

I realised after I’d called my husband that the rental car he was to try to score that day would no longer be happening, and that I’d be doomed to ride home in his moldy compact car. More feh. I was not in a good mood, but I was determined. I had a little talk with my body and ordered it to straighten up. Then I got up and went for a shuffle down the corridor, and I did my breathing exercises I was prescribed to increase lung capacity again and keep the blood flowing well (10 slow deep breaths in through the mouth, then out through the nose every hour).

I can’t remember when I finally noticed it, but the night before, my husband had put some goals on the white board for me…

Goals for the day...

At some point, I got my I.V. removed, because I was peeing up to 10oz at a time, and having to pee every half hour to hour. This helped elevate my mood a bit, because I felt more free range at this point, rather than tethered.

My husband arrived shortly before my next blood draw. My left arm was now looking pretty scary from all the times I’d been stuck over the past 26 hours.

My poor bruised arm

My husband leaned over to hug me and I clutched onto his arm and just held on for a minute.

The rest of the day was a waiting game – I had to wait for delayed breakfast. I had to wait for the nurses to come in when I called them and they were always late or didn’t show at all, which meant my meds were constantly late. I had to wait for the results of the 9am blood draw. Then I had to wait for my urine ‘hat’ to be emptied and realised by this time, nobody was bothering to record my urine output, anyway. I was putting it on the whiteboard in case anyone cared, but the damned hat was full. When someone did come to empty it, I immediately filled it with 10oz again and nobody ever came to check on it again. The daytime nurses really are not in my fan club. The daytime nurses are fragranced, at that. There was one nighttime nurse who was perfumed, but she was not my nurse. I passed her in the hallway and nearly choked to death. She asked me if I was okay. I told her I’m chemically sensitive and that health care professionals aren’t supposed to be scented, anyway. I asked another nurse for a face mask and was happy to receive one with a charcoal filter in it. The scented nurse made rude comments as she walked away. I pfft in her general direction.

So anyway, yeah, the daytime nurses were also scented, but not nearly as bad as the one nighttime nurse was. Thankfully she wasn’t my nurse that night. My nurse was Hannah, and she was the best nurse I had the entire stay in that hospital. I’m in her fan club for sure. She did everything with a pleasant air about her and unconditionally, and really listened and was attentive to her patients. Even when I mentioned as nicely as I could that the guy next door was keeping me awake by his incessant pounding of the call button and his constant adjusting of his bed, nurse Hannah nodded and told me in a non-judgemental tone that the poor man is really ill. She’s a doll. I told her so myself. I’m going to send her a thank you card.

When the blood count finally came back around 10am, I was thrilled that it was 30. I asked if I could go home, and Dr. Wang said I could! Another doctor on the surgery team came in a short while later – the only male doctor on the team – and he told me too that I could go home. He asked if anyone had ever told me I am anemic. I told him no, and that I’d tried to get blood work to prove it, but it always came back “in the normal range.” He told me that my ‘normal’ before and right after surgery, being 34, is anemic. I thanked him for this information, and told him I’d suspected it for years. I told him I have gentle iron tabs at home to take, and he was pleased by this.
Both doctors felt that my surgeon was being a bit too overprotective to keep me longer with the blood count the way it was, but I told them I trusted her word and didn’t want complications to arise later. So they called her up, exchanged the info, and she okayed my discharge with a blood count of 30.

I gently high-fived my husband twice and grinned ear to ear. WOOHOO! I’m being discharged!!

But the waiting was not over, yet. I had to wait nearly FOUR HOURS from the time I was told I’d be discharged, to the time I was actually given a wheelchair ride to freedom. In that time frame, every last one of the people in the rooms adjacent to me, including the guy who was “really ill”, had been discharged! It was a ghost town in that ward!

Waiting to be discharged

My I.V. port was finally taken out, and I was finally given the discharge paperwork around 2pm, but the nurse on duty did not have the prescription pain meds. She had to phone the surgeon and get it called in to our local pharmacy. In that time, she set the discharge paperwork on top of water the food tray lady had spilled, and then she began writing info on a piece of paper on top of the discharge paperwork, which are carbon copies. So of course whatever she was scribbling went through the copies. Stellar. And she was scented – so I had to put my face mask back on.

I was really glad to be out of there when the wheelchair guy arrived. I forgot to take my breathing contraption. Ah well. I put on my festive fez and off we went!

My husband went to get the car and the male nurse waited with me in the lobby. I was wearing my fez, and the nurse was fascinated by it. I let him hold the fez and examine it, and told him the website where he can get one of his own. :)

Me in my zombie monkey fez, ready to go home!

My husband opened the passenger door and I could immediately smell the mold in his car. YUCK!! I braced myself so as not to cry at this indignity, and allowed the male nurse to help me into the car. It was still raining outside, as it had been since the day before. The rain and wind had been fierce overnight. I was given the giant pillow chair to hold onto for the ride home – my pillow chair which had sat in my husband’s car all night, and now smelled like his moldy car. Ugh.

The ride home was just as excruciating as last time. It’s a compact car on bumpy roads. I cursed Mercury Retrograde all the way home for not granting us the ability to have scored a luxury rental car for a smooth ride. I cried, literally cried, on the way home. I took off the fez before the tears spilled, because there’s nothing more sad than a sobbing person wearing a fez.

We got home and I shuffled to the door. My husband was so exhausted that he did not get the wheelchair out of the car that we’d packed for this moment. He walked me to the door and let me in, and then he went and parked his car.

I’m pretty sure I went right to bed. It was excruciating to have to climb into a bed that didn’t have a motor to lower the bed for me. We had to prop up blankets and pillows to get the right incline for me, which also supported my head well enough. And of course once I was settled, I had to pee, so I had to get out of bed again, which hurt like hell. I think I cried a lot that day (Saturday).

Pillowpalooza.

I averaged being awake for an hour to an hour and a half at a time, and then sleeping for an hour to three hours in between.

I ate chicken broth and jello and drank smart water all night, and continued to take two Tylenol 3 every 3 hours all night.

My husband tried to get some more housework done Saturday night; dishes and laundry I think. He was already mentally and physically exhausted, but he kept trudging along. I kept telling him to stop and take a break, but he wanted the stuff done. But I swear, it broke him. He was near tears himself, the poor man. I could tell that the work layoff had begun to take its toll on his mental state.

It’s just the last thing we needed when I needed him so desperately to be at beck and call throughout the surgery and the weekend. So to the company that laid him off, I say a big EFF YOU. I say it again. EFF. YOU.