I Will Not Suffer In Silence

It has been 16 months, or nearly a year and a half since my last blog entry. I became disillusioned with life with endometriosis.

Starting around March 2017, at the age of 45, my periods started becoming irregular.
I would stop bleeding, then a day or two later, start bleeding again for a few days.
Or I would bleed for eleven days in a row.

I skipped a period from April to May 2017, going 36 days. BUT I spent most of May with cramps above level 6 on the pain scale.

I had a new ultrasound in May 2017, but the GYN said everything looked good; my ovaries showed no cysts and my uterus looked smaller. However, several intramural fibroids and a subserosal fundal fibroid was noted. The GYN told me that it shouldn’t be causing the elevated pain and weird cycles I was experiencing, to which of course I called bullshit.

I skipped a period again between July and August 2017, going 44 days between periods.

August to September 2017 was 36 days, and I spent most of September with cramps above level 6 on the pain scale.

I had two periods in the month of October 2017, with most of the month yet again cramping.

I’m back to having roughly one good week a month without cramps.

I should also note that for about a month (from March to April?), I experienced serious night sweats and hot flashes. Though they abated, I know it was just a taste of what’s to come. Though they abated, my core body temp has been elevated, and I’ve been running more warm to actual HOT since Springtime.

Also since Springtime, I have been experiencing hormonal rage, the likes of which I have not experienced since I was a teenager. It’s the exact same ragey feelings I had when I was in my teen years, only now I’m not screaming at my loved ones in public. Though I have lost my shit several times at my partner, and had to apologise.
That said, I feel like I may snap at any second.

Since early 2017, I have been trying to find a talk therapist to no avail, because Kaiser outsourced all of their psychological treatment to an already inundated program. I even tried calling Gaylesta and local community psychiatry, but everyone was overwhelmed with people calling for help. This is because of the political crisis people in the United States have been experiencing since November 2016 when The Orange Troll was installed into the White House and began systematically rolling back civil rights for everyone and everything.

On September 16, 2017, I was t-boned, and my car totaled. This, on top of a year of dealing with an epileptic dog, a Troll in the White House, a former friend/housemate shitting all over me and then crying to other people about how mean I am when I begged her to repair the damage she’d done to the room she’d rented, and me ending 8 years at one employer, hoping to switch careers, only to be scooped up again by another even more dysfunctional employer in the same industry.
So I’ve been suffering anxiety/panic attacks the likes of which I have not seen since my mid-to-late twenties.

I have been on a thin edge of sanity for the entire year of 2017, and I think I have an idea of what is happening to me, along with all the above-mentioned life stress:

I’m that much closer to the end of my period, and hopefully the end of bedridden horrific bloody cramps.

HOWEVER, I’m gonna be honest here and say that I had it in my head that I would have this sort of magickal timeframe to start preparing for peri-menopause before it actually hit. You know, time for me to enroll in yoga class, meditation classes and a stress-management program…so I could go into peri-menopause gracefully.

My body took one look at that idea and threw its head back, laughing maniacally.

That moment last Spring when I thought to myself, “Hmmm, could the is be peri?” It was already too late. The hormones were already going sideways, plotting to take me down hard.
Nope, no mindful meditation and graceful for you, buttercup.
HIT THE FUCKING DECK!!!!

So, from here on out, this endometriosis blog is ALSO my peri-menopause blog. Because, you know, I STILL Will Not Suffer In Silence.

Peri-menopause and Menopause are just as taboo as Endometriosis. So I will still be here, tellin it like it is.

Oh, one last thing before I conclude this journal entry:
PERI-MENOPAUSAL CRAVINGS ARE A THING.

I have never eaten so much peanut butter IN MY LIFE.

Actual peanut butter. Reeses peanut butter cups. Ben & Jerry’s “Everything But The…” ice cream.
Peanut butter cookies.

Don’t ask why. I don’t know. This at least is the only thing about peri-menopause so far that has me giggling.

I went the entire month of October without a new menstrual cycle. The lengthening in time between my periods over the past year has really been interesting.

I got my period on September 30, and then it didn’t appear again until November 2.
And just like in September, where I had pain a week before my period, it happened again in October. I had moderate pain for one day and then no period until almost two weeks later.

Yesterday was moderate pain. Today was heavy pain. It just kept getting worse. Finally, after work, I broke down and took half a Vicoprofen because I was getting nauseated from the pain. It took about 45 minutes to kick in, and now I’m happily dissociated. I hit 7.5 on the pain scale today.
The blood started off dark brown, then turned to bright red, then tapered and hit a thick dark brown again. That coloration, combined with the nausea, makes me wonder if I’ve got another ovarian cyst. And of course, the intermittent pain I’ve experienced over the past two weeks is on the left side – the same damned ovary that was discovered tied to the back of my uterus twice during surgeries. The damned endo has likely tied up the ovary again.

I haven’t done too well in the past year with documenting my endo flares. I’ve had other things on my mind, like intense grief. But I’m FINALLY getting past it. Finally. You have no idea. I can feel it easing up. Soon, I will be back to paying attention to the endo and modulating treatments and diet accordingly.

My doctor said I could increase the gabapentin during pain flares, so starting today I began taking three gabapentin per day (100mg each) instead of the usual two. Unfortunately, it did not really help with pain relief. I consumed 1,400mg ibuprofen today before taking the vicoprofen, and I’ve had a heating pad on me several times today, even at work.

I’m down to my last two vicoprofen pills. I’m brand new on my school’s health care (Kaiser), so it will take awhile to see the necessary doctors to get a renewed prescription. :/

I wonder if Halloween season had anything to do with the increased pain. My sugar intake has been UP this past month! On the To Do list – cut sugar from the diet again.

So that’s yer update.

George showed up on August 31, and departed by September 5.
The heaviest, most painful days were September 1 and 2, and I’m SO lucky that I had September 2 off of work (Labor Day), otherwise my life would have really sucked.

I wonder if my period was more painful because I’ve been drinking more alcohol lately. I’ve been drinking more because I’m chronically depressed in the wake of what’s happened to me in the past year. I’m still not over the idea that my husband would be the type of person to have an affair for the better part of 2012 without my knowledge until about 3 months into the affair, and then it took me nearly 5 months to prove the damned affair was happening. He left me for her. He divorced me for her. How could this happen TO ME?!

Hence, drinking.

Is that why I’m in more physical pain?

Oh.

Time to do something about that.

I continue to marvel at the lack of being bedridden since starting on Gabapentin.

My most recent endo pain flare began last week, with intermittent stinging pain in the uterus and left ovary, which lasted for a couple of days.

Then, without warning, george showed up yesterday, a day earlier than I expected. Then the crushing fatigue set in.

I consumed 1,200mg of Ibuprofen yesterday, and another 1,200mg today, and managed to get through the work day. I have gone to bed early for the past two nights – I’m in bed now and will be heading to sleep very soon. The full body fatigue is as I said crushing, and it is a symptom of endometriosis.

Ya know, I have a rant.

One of the big things my ex told me he was leaving me for was because “you have a need to let people know you’re in pain, all the time.”
He was referring to me posting when I’m having an endo flare, about me having specific friends who also suffer with endo whom I can relate with, and my ongoing endo blog.

What also really pisses me off is… had I listened to my doctor years ago, and started taking Gabapentin, I might not have been in this divorce boat, because I’d not be bedridden and therefore not such an invalid in my husband’s eyes.

I have suffered shaming and guilt all of my life – first through my parents, then with the endo, and now with my ex. Part of my rage is because he shamed me by having not just an affair, but holding it in my face, in the clubs, for my friends to see and ask me about. He lied to me when questioned. He lied for months until he got sloppy. And then he cites one of the reasons for leaving me was that he doesn’t like me being vocal about my illness.

So instead of being shamed to silence, I will remind the world of my blog’s name: I WILL NOT SUFFER IN SILENCE.

More to the point, I will react like O Ren Ishii upon one’s attempt to shame me into silence.
He got publicly castrated and financially burdened.

I have been away for six months. The reason is that my husband had a physical affair which took me two months to prove, but once I did prove the affair, I was genuinely surprised that it WASN’T all in my head. I never thought he was capable of such betrayal from a person I spent TWELVE YEARS with. I was a complete basket case for three months, attempting suicide multiple times, and ending up in hospital for a week.

The good thing in all of this, as it relates to this journal, is that I was forcibly medicated with Gabapentin (Neurontin) as a mood stabiliser.

Gabapentin was recommended to me by my surgeon back in 2010, but I was too afraid to take it because of the listed side effects. I always hit into the rare category of side effects on any medication.
Now, being told in hospital that I would not be released unless I took medication, I had to give it a try. They started me out on a very low dose – 300mg – and I got head, arm and hand tremors. So they reduced it to 200mg and my mood improved fantastically.

What I also found out is that the neuropathy and severe pain were reduced to the point that I WAS NOT bedridden for the next FOUR MONTHS!!!

Last month’s cycle had me bedridden for one day, and this month’s cycle is hurting me enough that, had I gone in to work today, I’d have come home early due to the pain. Thankfully, today is Martin Luther King, Jr. Day, so I did not have to work. Hopefully by tomorrow, the pain will have abated again.

The bleeding is still heavy every cycle – that has not changed. But going from 3-4 days bedridden down to 0-1 day is a huge, positive change.

The Gabapentin has also helped me with chemical sensitivity – I don’t know how but it has. The nerve channels are blocked in the brain and the message that says, “I’M DYING” from the pain and from scented products is no longer getting delivered. The threat level has been reduced to, “Oh, that’s unpleasant.”

So I am thankful that I am on Gabapentin, now, but holy shit, what a path to travel to begin taking it.

I’m still not out of the woods, emotionally after the affair. There is no reconciliation – he declared he was in love with this woman, WHOM I USED TO BABYSIT FOR, and he said horrible things to me. One of the things he said with bitterness is that I have a need to continually let people know that I’m in pain, whether emotional or physical. I told him that my endometriosis blog exists for the very reason of letting people know I’m in pain, because talking about pelvic pain is still taboo, and people like me are putting a face to it. He told me he didn’t like that. He told me he couldn’t care for me anymore. He told me he didn’t love me anymore. And then he went back to HER, so I kicked him out of the house. He came back almost a month later to officially move all his crap out of the house, and he tried to take the bed, the couch, the dishwasher, the toaster and the microwave with him!!!! I forbade him to clean me out and threatened to call the police. I then hired a lawyer. He is the one who filed for divorce. The proceedings cannot happen quickly enough, but I want to make sure I’m not getting screwed. I cannot trust this man to be honest about *anything*, which is why I’ve hired a lawyer to check all paperwork he sends and all paperwork I have to fill out to get back to his paralegals.

It took me roughly five months to even accept that he was in his right mind, that he was capable of hiding so much of his sinister life from me. But then I found a thumb-drive with a bunch of his files on it, and it included letters and mix-tapes he sent to ANOTHER woman back in 2009. This appears to have been an emotional affair, but it lasted TWO YEARS. The affair began three months BEFORE our honeymoon…so only three months into our marriage. We’d been together for 8 years before we got married, but according to some of my guy friends, the very act of getting married scarred him or something, and he immediately regretted the committal, despite already being with me for 8 years.

This is why I have not posted to my blog in so long. I don’t know how often I will post in the coming months. My endo is fairly well-managed for the time being, but my emotional state is still shot.

The state of my insurance is up in the air – I don’t know how much longer I’m covered under his insurance policy, and my workplace only offers Kaiser insurance, which is a crappy HMO insurance. I’ve rationed the last of my Tylenol 3 for the past six months; I haven’t had ANY in five months – but I finally relented and took a half a pill today.

So much change. I want 2013 to bring me peace and happiness. I want to start healing both emotionally and physically. I write these things with the full knowledge that I also wish I just didn’t have to breathe, anymore. I’m so emotionally exhausted.

While many of my friends get to sleep in on a Saturday morning, or get to enjoy the Lunar eclipse this morning, I get to be awakened from slumber with such pain that leaves me stupefied with my mouth agape as I stagger about in the dark to get my heating pad and medicine.

Before I can take my medicine, I have to eat something, and all the while, the pain grows ever more intense, and all I can think while being up before the sun on a weekend is, “at least I was able to finish the work week before the endometriosis flare went full bore”.

But I really want to see the Lunar eclipse, and I can’t even get several blocks down to the parking garage to get an elevated view of town because of the pain I’m in, though I’m reeeeeally tempted. Me, trying to walk a mere 4.5 blocks, putting one foot in front of the other, with radiating nerve pain. Or…me, getting into my go-kart of a car, and pressing the accelerator with the radiating pelvic nerve pain at 7.5 on the pain scale…when I’m nauseous from the pain by any slight movement. =(

Yes, I’m wallowing in the pain and depression of being a dependent invalid at the moment.

One of my friends told me she is jealous that my debilitating pain is at least localised and cyclical, which means I have windows of time which I can predict there will be little to no pain. I have critical windows of time to live my life and not worry about every minute consequence an action or a food or a drink will have on my pain level, while she cannot predict the pain – it strikes anywhere in her body at anytime, and so often that she is on medical disability and can no longer work.

While I am sad that many people, including women with the same condition I have (endometriosis) are disabled by the pain full time, it does not lessen the reality of my own anguish, which I have been suffering for 26 years. Before surgery, I did apply for disability and was denied, because although I could barely work, I could still work 14 (non-consecutive) days in a month. As long as you can work 14 days out of a month, you’re not sick or disabled enough to qualify for disability insurance.

I have had two surgeries 3 years apart, to minimal effect on the pain. I am still bedridden from the pain. I am still missing work from the pain. I am still taking narcotics for the pain. Doctors still do not know how to control or manage the pain. There is still no cure or proper treatment for endometriosis. Doctors are still arguing over theories of what even causes endometriosis, while millions of women world wide suffer a pain so severe that most men would die of in minutes if they had the same condition, because the pain is akin to going into labor every 2 – 4 weeks for 26 to 35 years in a row. Hell, there are women with endometriosis who have said that actual labor and childbirth was LESS painful than the endometriosis pain, I kid you not.

Cyclical pain or full time pain, it does not matter. The pain is real, and it is debilitating, and it is crushing. It slams one into a depressed mental state faster than you can say “ouch”, and the depression sinks one to the depths of the murk so fast, that if you don’t pay attention, you might miss critical cues telling you that the person is finally just DONE enduring all this pain.

Endometriosis may not kill us directly, but the illness is always in danger of killing us indirectly. There is no benefit to feeling jealous over someone who “only” has cyclical pain. Jealousy diminishes the harsh reality of the sufferer, making one feel a sense of survivor guilt, making the emotional pain even harder to bear.

So I wallow in my very real pain as it strikes me early this morning, while I miss a beautiful Lunar eclipse and wait for 2 Tylenol 3 to even try to make a dent in the pain, while I sit on the couch with a heating pad on my broken body and breathe those shallow breaths that one breathes when in so much pain, while trying to remind myself to do relaxation techniques and breathing exercises to get through this flare.

I want the pain to stop. I want it all to stop.

In honour of the supposed Rapture, I started my period!

I am wholly and childishly amused by this.

I am considering leaving blood soaked cloth on Camping’s lawn, since he lives a mile from me.

I was raised christian fundamentalist, so I feel a bit entitled in my retaliatory nature, being that I got a lifetime membership in psychiatric treatment thanks to my upbringing.

The week leading up to this failed rapture prediction has seen me emotionally volatile. Part of it was PMS but most of it was being repeatedly triggered by the media and all the billboards around town.

Anyway…been cramping for the past week. Pretty sure this is gonna be a really painful cycle, cuz I’ve been so stressed out with work and school – end of the year stuff coming up fast.

That’s all for now…

Monday, December 6: intermittent stabby low uterine/bladder pain – late afternoon. I had consumed caffinated tea at lunch time.

Tuesday, December 7: sharp shooting uterine pain. I doubled over twice, took 600mg ibuprofen about 2:30pm. This was after having consumed caffinated tea less than an hour earlier.

Thursday, December 9: Visit to local family doctor to get peace of mind on the heart murmur that I was born with. I was told it’s barely detectable. I passed a cursory health check and she wrote me a note clearing me for surgery in case I needed the note.

Friday, December 10: Mercury went retrograde. UCSF anesthesiology failed to call me like they had planned, to go over surgery details.

Saturday, December 11: all-day teacher seminar. One of the instructors locked her keys in her car. I chose to call my auto insurance to get the keys out, since she said her husband always has handled the insurance stuff, hence she didn’t know it. The benefit to me waiting for a road service dude was that I didn’t have to sit in a room with 65 women and men wearing toxic scents. Well, for the first hour, anyway. Good thing I’d chosen my seat next to the door before everyone else had arrived.
Got home from the seminar, ate dinner, went to bed.

Sunday, December 12: Attended the (Charles) Dickens Christmas Fair with husband – met up with friends there. Pelvic pain and low back pain hit after walking around for 4 hours – I took 600mg Ibuprofen when I went to bed.

Monday, December 13: saw my shrink, discussed fears of surgery. She donated her old shower stool to me from when she’d had surgery (she has Crohn’s Disease). Husband got home from work that evening and informed me that there would be layoffs on Tuesday. He’s survived four or more rounds of layoffs over the last couple of years, but neither of us were optimistic about this one.

Today, Tuesday, December 14: Husband’s work laid him off. Spent much of the day crying. Had to come home from work at 2:30pm because I wasn’t coping. Husband arrived home shortly after me. I had shots of booze waiting for us. He drank two shots of fine whisky, I drank a shot of rum. We spent the afternoon talking about everything financial as related to the surgery. He’s got 4 months severance and health benefits, so he thinks we’ll be alright. He’s got money in checking and savings. I have nothing – I never have anything – I don’t make shit for pay. It all goes to two credit card bills, renter’s insurance, car insurance, earthquake insurance, special-needs groceries, and Internet access.

I spent this evening cleaning the bedroom, as I was scheduled to do before my surgery. We also went grocery shopping. My husband was invited to a friend’s house to drink – I was invited too, but declined because the nesting effect is so strong right now before surgery. And well, I’m not supposed to be drinking alcohol, especially so close to surgery, anyway.

Tomorrow is my last day at work for four to six weeks. I am taking the day before surgery off work as a mental health and preparedness day.

I don’t recall if I went into details before my last surgery – about the emotional aspect of having surgery. There’s a lot of normal irrational fear of dying, fear of something going wrong, fear of nothing being found. My added irrational stress is that we’ve just entered Mercury retrograde in Capricorn on a waxing Moon in Taurus. Also, with the surgery being a week before christmas, if anything goes wrong, my husband is left to mourn every christmas season.
Rationally, scheduling the surgery at this time works out best, because we both have the time off work (holiday shutdown), and because the deductible has already been met, so out-of-pocket cost is about $300 (and it doesn’t roll over to the next year). The surgery works best right now especially, since we don’t know what kind of insurance we’ll have after this. So the timing is shitty, but at the same time for the best.

I just wish I could stop getting myself worked up to near-panic mode.

I have officially hit the “terrified beyond recognition” part of the pre-operative emotional roller coaster.

I’ve been saying for weeks that I don’t want to go through with the surgery. I’ve been saying for weeks that I’m in denial about it even happening. For weeks, I’ve also been able to discuss rationally how the procedure will be beneficial and why it is necessary. You will notice how the two conversations are mutually exclusive.

Today I had my breakdown. I am now drinking Nigori, because I can no longer cope with the emotional overload.

I am Day 4 of NOT being bedridden. Yesterday at 11am, I went to the Dickens Fair with my husband, and for some insane reason, I thought we’d be spending only a couple of hours there, going in to meet our friends, get stuff on my holiday shopping list done, and get home again to look at bed frames and get some homework done.
Then my husband signed us up for a 6:15 stage show viewing. I told him about how I thought the day would progress, and he replied that he had no idea where I’d gotten that notion from.

I was moody for the rest of the day.

When we got home last night, we needed dinner. We went out to eat – I think. Hell, I can’t even remember, now. Then we came home and waited to hear back from friends who had to bail on evening plans, which was fine by me, because I was exhausted, anyway. It was only my second day on my feet, walking around all day, and my lower back was exceedingly sore.

When I woke this morning, I was moody again. I sulked and avoided homework until it was 11am. Then I hopped in the shower. Then I realised I’d had nothing with protein to eat all morning, and there was nothing in the house. So I went to the grocery. This is when I had a full on internal emotional collapse. The guilt overwhelmed me because homework was still not getting done. I have no idea what to eat anymore because of all the foods I have reactions to, and it’s hard for me to find time and energy to put together a menu for myself each day. I wandered aimlessly in one grocery store, then called my husband from the parking lot of the second grocery store, telling him I had no idea what to do or how to care for myself any longer.

He instructed me to go to Boston Market and just get a quick lunch. I obeyed…after wandering aimlessly through the second grocery store.

I came home with a seed grinder for the seed dietary recommendations my naturopath gave me last month. I’ve not applied a single one of her recommendations, yet, because a lot of the stuff is too hard to find, and I don’t feel like dealing with the castor oil mess, yet, and well I was too stingy to get a seed grinder until today.

…the laundry timer just went off.

And I’m supposed to get back to my homework.

And I’ve already cried about how unfair it is that I can’t live like others do, I can’t eat what everyone else can eat, and I have to have these surgeries.

I can’t take care of myself right now.

I’m not managing, well.

The last time I blogged was on November 9. The pain abated by November 11, and so I decided again to try bicycing to work. I seemed to be okay, so I pedaled to work again on November 12, despite the trapped nerve resurfacing overnight once again from all the stress I’m under. Speaking of stress, I began taking Ativan again – on November 11. :(

On November 13, I participated in my friend’s wedding. It was beautiful. :)

The grooms

The cake cutting!

My husband

Me

The only thing though, we all drank for about 12 hours that day. I had a total of 3 glasses of wine and two and a third hard alcoholic drinks in the course of those 12 hours. Not bad, but then again I shouldn’t be drinking at all with autoimmune disease. Hell, I got more drunk the night before, at the rehearsal dinner, heh. I think I drank 2/3 a bottle of wine that night…

During the wee hours of Sunday morning, a virus within me had activated and let loose on my maxillary sinuses. It felt like my runny nose coated my pillow. Ugh. I’ve been sneezing and blowing my nose ever since.

I tried resuming bicycling to work Monday and Tuesday this week, but with the virus making me excruciatingly tired (like, wanting to be in bed by 8pm), I decided to not bicycle to work today.

Because of the virus, I have renewed heightened sensitivity to dust, mold, perfumes and chemicals in general. This of course did not stop me from getting super PMS-tastic last night and using Tilex diluted in hot water to scrub moldy window sills – without a mask. WTF!!

Also, the biggest WTF right now is Mittelschmerz. It hit like clockwork on Day 8 of the new cycle – yesterday the 16th. And ever since yesterday, I’ve been trying to eat all the chocolate on the planet. Tonight, I wanted alcohol, and I’ve been imbibing on liquor in the house. The boozing is in part to the stress I’m under at work, and in part due to nightmares I’ve had for two nights straight.

This upper respiratory tract infection is not helping with my stress level. I know I shouldn’t be drinking, especially with a virus going on, and yet I have no control over my cravings and wants right now.

I’m experiencing mid-cycle pain, PMSing, and my period is already due by next Saturday, even though just last week, I was just coming off my period. This so-called 25 day cycle is for the birds.

So I just wanted to let you know where it’s at – I’m PMSing, chocolate-gorging, stressed out, drug-addled on Ativan and Benadryl, and totally having a pity party over the Blue Moon Menstrual Cycle this month.

Yeah, pity me. Wah. Boo hoo.