I Will Not Suffer In Silence

I am in a lot of pain. I hobbled into work this morning because I had a parent conference at 8am. I’m shocked I lasted the entire day…I certainly thought several times to just bail, but I gritted my teeth and hung in there.

On the bus ride home, I felt nauseous because of all of the motion. Just walking from one bus stop to the next across the street felt like a death march because of the pain and nausea.

I have 3 remaining parent conferences tomorrow. The one first thing in the morning has already been rescheduled twice, so I can’t cancel it.

I may just go to work long enough to do the conference, come home, and come back in the afternoon for the other two conferences. Not sure if I’ll be able to stay at work all day tomorrow.

What sucks is having to take a bus to and from work when in so much pain. I thought driving was bad? Try walking three blocks to the bus stop first thing in the morning when the pain is at its worst, then getting on a herky-jerky bus.

Okay this is driving me nuts. I am constantly behind at updating about my condition, and it’s only hurting ME when I cannot track things in a timely fashion!

I have been in a relationship for seven months, so the whole “new relationship energy” should have died down a bit in order for me to get back to taking care of my blogging and whatnot…but it hasn’t died down. I mean, it’s good that the energy hasn’t died down, but I need to FOCUS! lol

Back in August, my doctor got back to me and reluctantly told me to stop taking 600mg/day of Gabapentin because of the side effects I was getting. So I went down to 500mg/day and stayed there until I felt comfortable increasing, again.

It wasn’t until October that I felt comfortable, so I increased to 600mg/day again. I’ve stayed at that dose for 13 days, though after this latest round of endo pain, I’m ready to continue increasing dosage!
Then again…I did have a terrible migraine today, which made me seriously light sensitive and nauseous.
One of the side effects of increasing Gabapentin last time was a bad headache, so I will wait at least another day before continuing the dosage increase.

This month, I finally began seeing a physical therapist for the latest diagnosis: Pelvic Floor Dysfunction. I received this diagnosis back on August 7th from a doctor who refers out to physical therapy. I was told that this diagnosis is NOT to replace Endometriosis or Dyspareunia. I was told I ALSO have Pelvic Floor Dysfunction ON TOP of the other two diagnoses. This is why I came home and sobbed back on August 7th.

Going to the physical therapist only confirmed what the referral doctor suspected. The first appointment was on October 1st. I told my story to Dr. Hale. She wanted to know as much detail as possible about my pain and cycles, what worked and what didn’t, what surgeries I’ve had, what meds… everything going back to age 14.
Afterwards, she said based upon my case history, and knowing I was so close to my next cycle, she would not perform an internal exam. Instead, I was hooked up to a biofeedback machine (with electrodes attached to my pelvic area and labia) and was instructed to bear down, then relax several times. It was very hard to relax the region at all, and it showed on the monitor. Tensing my muscles set off mild cramps, but I was able to get home without dying. The next day, george showed up.

For the second physical therapy appointment on October 17, my girlfriend drove me, as I was unsure about the amount of work to be done.
This time, an internal exam was done, but very lightly, as Dr. Hale could tell how intensely tight my pelvic region is. She winced several times and said she felt very bad for me. At first, I wanted to say, “Oh, it’s not that bad”, but I held back. She’s the doctor – she knows this is bad news. Me? I’ve just developed ways to cope with it all these years, and this is SO FAR FROM BEARABLE PAIN. So very far. Dr. Hale assured me of that.
Despite the lightness of her internal examination, I cried out in pain a few times. Again, I felt like a wuss for doing so, and was reminded that I am in no way a wuss, that my condition is severe! She told me, “You and I are going to be friends for a long while.”

I came away from that appointment with a directive to NEVER cross my legs again; something that is SO DIFFICULT to break!
I was also told that I must NOT sit like a lady anymore. I have to sit with my knees far apart, and I have to sit my pelvic area downwards, bearing down. This means I have to sit up straight.

I must also do exercises a few times a day for a couple of minutes each time.

So. My third physical therapy appointment is going to be this Wednesday. Unfortunately, most of the pain from my current flare will be tapering off by that point. She had wanted to catch me in a pain flare. But I cannot get in to see her any sooner due to work obligations already in place.

The goal of physical therapy is to retrain the pelvic floor and hopefully also end up mitigating the pain of endometriosis, and cease the pain of dyspareunia.

We shall see what happens.

On the medication front, I have hopefully ended the battle this month with Kaiser doctors refusing to refill more than 15 pills of Norco at a time for me. After going round and round between multiple doctors, I was finally granted 30 pills at the beginning of October’s pain flare.

I have 14 and a half left as of tonight. This will definitely see me through this pain flare and November’s. So the next medication battle isn’t until end of November so I’m prepared for December.

I almost made it through the work day. I remained around a 5.5 on the pain scale for much of the day, with only Ponstel to take for pain relief (which doesn’t work AT ALL at the dosage I am given).

At 3:37pm, another wave of level 8 pain took me down at work. At that point, I still had no authorisation from my doc to refill the Norco…since last Thursday.
Pleas to my primary doc went unnoticed.

The advice nurse couldn’t reach anyone in that department. I was stuck in the teacher lounge with a heating pad, clutching my abdomen in pain, waiting to hear back from the advice nurse. She said, “If you don’t hear back by 5pm, call.”

I called at 4:45pm and was told that another doctor filed the script (for 10 pills), and that I should follow up with my GYN ASAP.

This is exactly the same thing that happened last month.

THEN, I’m told the GYN I have been trying to reach is not my primary GYN doctor! When did that happen? I have only ever been dealing with the one GYN.

There is a ray of sunshine in all of this – I have the best co-workers EVER!
My boss drove me to the pharmacy, while the school secretary drove my car home. The director dropped me off at home and picked up our secretary. THEN, my newly appointed assistant teacher dropped off my backpack, some soup, yoghurt and juice! I am SO thankful for these wonderful women!

Tomorrow is another day. I can hope again that the pain subsides.

Today I threw up from the pain. My period arrived yesterday after a 34-day hiatus.

My last post was May 7, where I was dumbfounded by an extension of my period, which was alarmingly odd. That pain and bleeding lasted until May 13. I then experienced days of no pain, days of some pain, off and on like that through to the end of the month. I thought my next period was due May 24, but that date came and went with no sign of george.

Then he arrived yesterday as I mentioned above. Obviously the endometrioma is wreaking havoc inside of me.

Yesterday and last night, I had moderate pain. It was manageable, though. This morning, as I was leaving the house for work, the pain suddenly shot up to a 7 on the pain scale. It happened right after I had to swerve and honk the car horn to avoid an asshole trying to run a stop sign. That minor adrenaline rush was all it took to set the pain in motion.
I had to turn around only a block from my home, drive back home, take some Tylenol 3 and put on a heating pad, and then try again to get to work. I was about 10 minutes late to work. I popped 800mg Ibuprofen and tried to go about my day, but the pain just kept getting worse throughout the day.

I took another half Tylenol 3 just before lunch time to no avail. I then popped 800mg more of Ibuprofen after lunch. I thought getting to 8 on the pain scale by lunch time was going to be my worst, but no… the pain got to 8.5 while I was in a head teacher meeting around 4pm, and was accompanied by a horrible headache. I tried to leave immediately after the meeting, but ran back inside the building to vomit. Yes, I vomited because the pain was so bad. I haven’t done that in a long time.

I got home and just like that, the headache subsided, as did the pain. I’m seriously exhausted from the trauma of it all, so I took a nap for an hour, only waking up because of the pressure on my bladder from all the buildup of menstrual fluid.

As soon as I used the bathroom, WOOSH the pain level shot up again and the headache returned. I just took a whole Tylenol 3.

Please kill me now.

I had a moment of panic in the bathroom today at work, when I discovered I’d started bleeding heavier than yesterday.

My period was supposed to be done last Sunday, but I started spotting bright red again yesterday.

Today, the blood was dark brown with debris – the so-called ‘coffee ground’ blood. At this point, I finally acknowledged consciously that something is wrong. I suspected once again that I’m dealing with an ovarian cyst. This is something that, in the past few months, I’ve given brief attention to, but pushed it out of my head. Today, I was forced to acknowledge it as fact.

So I looked back in time and realised that this endometrioma or cyst has been in the works for the past six months – since probably November, 2013.

Nov. 4, 2013: 5 waves of intense pain – 7 on the pain scale. Nausea with evening pain flare. Took half a vicoprofen.

Dec. 1, 2013: Nausea, extreme fatigue, shakey legs. Mild to moderate pain. Dark brown flow, turning to red.

Dec. 29, 2013: Bedridden. Puked from pain. 8.5 on pain scale.

Jan. 21, 2014: Moderate uterine and ovarian pain.

Jan. 22, 2014: Moderate bleeding and cramps. Severely fatigued all day, w/ fatigue lasting through Jan. 24.

Feb. 16, 2014: Debilitating pain. Did not note whether mostly ovarian or low back. Bedridden for part of the day on the 17th.

On May 2, 2014 the pain ebbed and flowed. I felt better after work, but then on the way home from hanging with friends, I was crying from the pain, which was mostly on the left side, radiating down my left leg.

May 3: intermittent moderate pain, especially in the lower back.

May 4: Low back pain mainly, but also stabbing on both the left and right side ovaries. The bleeding was subsiding, so I thought I was done with my cycle. That night, the pain cranked up to a 7.5 on the pain scale, and I laid on the floor on my back, crying, while my S.O. looked on helplessly.

May 5: pain and bleeding subsiding.

May 6: my entire back was locking up at the end of the work day. Then shooting pains down side of left leg, then right leg, then pelvic. I started bleeding bright red again.

May 7: ‘coffee ground’ discharge – a mixture of new and old blood, so much that I thought I started my period again. As the day wore on, I got more locked up in the pelvic and low back region again. I had to take 600mg Advil, then half a Norco, by 12pm.

My S.O. convinced me to see a GYN TODAY, so I called and got an appointment.

At the doctor’s office, I got a transvaginal ultrasound done (I’m a serious veteran of that wand, now). This ultrasound revealed a 4cm fluid-filled sac on my left ovary. The GYN also noticed a dark spot at back of my uterus; she said it could be the left ovary attached at back of uterus. I had her look at my previous surgery reports. She thinks it is most likely adhesions pulling the left ovary to back of uterus once again, and that I have either a large cyst or an endometrioma on the left ovary.
However, she urged me to go to ER for a doppler ultrasound and a uterine biopsy, because she is concerned about torsion, which can be dangerous, and she is concerned that the cyst is 4cm in size, which is the threshold where doctors get freaked out about cancer.

However, I am going to wait on it, based upon previous experience w/ cysts and endometriomas.
(See http://www.livingwithendometriosis.org/steph/2008/11/status-on-ovarian-cyst/
and
http://www.livingwithendometriosis.org/steph/category/ovarian-cysts/)

I also told the doctor I’m not comfortable going to E.R. because of an incident once where I went to the E.R. and instead of listening to me and reading my surgery reports, and just making me comfortable with an IV of drugs, they made me wait the pain out, then forced a pelvic exam, stirring up the bees nest again.

Today’s GYN doctor said that as a patient, I have the right to refuse a pelvic exam and ask only for the doppler ultrasound. She says I can request that first and then opt to have a pelvic afterwards, if something significant is found on ultrasound.

Just to make her stop trying to sway me, I did promise the GYN that if the pain gets any worse, I will go to the E.R. and request the doppler ultrasound.

I am feeling very defeated today at today’s news.

Not a day goes by where I don’t curse myself for not sticking to a caffeine-free and sugar-free diet since my last surgery in 2010. I have been able to successfully cut out red meat and pork, but the other two are just too much to ask for, apparently.
I also know that I cannot blame my diet alone on my pain. I know full well that I have abnormalities on chromosomes 1, 7, 9 and 12, and that endometriosis has been with me since I was created. I know this. I know that diet alone is not going to stop the pain. So I need to have a happy medium – not feel guilty about ingesting caffeine and sugar, but not going hog-wild with the two, either.

But cysts and endometriomas will still happen to me. It’s the nature of endometriosis in general, and specifically the nature of how endo affects MY body.

I’m just tired. I’ve been battling this goddamned illness for 29 YEARS.
I’ve had two surgeries. I don’t want any more surgeries. I know of women who have had over 20 surgeries and they’re STILL not any better. In fact, some are worse off! So I don’t want any further surgery. I just want to try to make it to and through menopause, and see if that burns the disease out.

But dear gods, I am so, so tired.

Sorry I’ve been away for so long.

Just so I don’t leave you hanging, I did not have a better day after my last journal entry. In fact, it was my worst pain day at work that week. I wore a heating pad all day and consumed 1,600mg Advil.
After that date, I didn’t record my pain for the rest of the week. I was likely too pissed off about the pain to bother recording it. Although I had noted on December 1 “Nausea, extreme fatigue, shakey legs, mild to moderate pain. dark brown flow, turning to red.”

I got my period again near the end of the year and was actually bedridden from the pain.

THIS PART IS IMPORTANT:

Since December, I have become sexually active again, and as a result have been dealing with drama in one case, and what my housemate calls ‘New Relationship Energy’ in another case. So maintaining my endo blog had not been priority. ;)

Although I blamed becoming sexually active again as the reason why I must have been bedridden. Why else would I have had such a great year previous to that, pain-wise, other than the fact that I’d had a noticeable lack of sex, specifically penetration sex?

Ok, interrupting the pain diary for a moment to tell you about relationship stuff!
In December and again in February, I had a fling with a friend. I ended it after February, though. In March, I began seeing a newish friend, and we’ve been together – not separated by more than five days at a stretch – since March 21st (Happy Spring!).

Right…back to the pain blog:
Looking back through the last 24 months of my blog, it reads like someone who grabs at straws each month, looking for a tiny amount of hope that things could be improving pain-wise, but in reality the pain actually has remained the same the entire time.

For all of 2013, though I was bedridden only once, the pain continually got to between 7 and 8 on the pain scale, which is still unacceptable. The surgeries have not been worth it in that regard. The only benefit of surgery was a short-lived lengthening in span between pain cycles. The Gabapentin is what helped me to not be bedridden for over a year, until I became sexually active again. The end of December and into January was very rough on me, pain-wise. Same thing for February.

During March, I pushed through the pain because there was so much already planned for that weekend. I got up to a level 7 pain on March 13, and said ‘screw it’ and didn’t record my pain levels for the rest of the week/weekend because of all that was going on.

In April, I got george TWICE. On top of that, I began dealing with severe low back pain. I wasn’t sure if it was related to endo, a cyst, or spinal deterioration. I went and got an X-Ray, and bone spurs were found on my lumbar spine (#1-3).

My latest cycle began April 29th. The pain was intermittently bad. I consumed over 1,200mg Advil a day for a week. On Friday, May 2, I was out with friends and had to pee every half hour it seemed. On the way back home that night, the pain ramped up and was so intense on the left side that I cried a little. It hurt to be in sitting position. I just wanted to be in bed with a heating pad. Again I wondered if I had an ovarian cyst, or if the endo was sticking my left ovary to the back of my uterus again. But I didn’t want to dwell on that, because it’s too depressing.

Oh! Also…starting in January, 2014, my cycle changed from 28 days back to 25 days. It took a few frustrating months for me to notice, but after continual let-downs when my period showed up 5 or more days ‘early’, I went back and re-counted my cycle days again. Sure enough, it’s back to 25 days after a short stint on a 28 day cycle.

So now you are basically up-to-date.

I had no pre-period pain or warnings, so I forgot to pay attention to the calendar, and george showed up unexpectedly on November 30.
So this cycle, he showed up on day 28. Last month was day 33.

Because of the gabapentin, I remain active and not bedridden. For example, on the day george showed up (Saturday, Nov. 30), I had been out and about with a friend, and had been out dancing the night before. I was tired and my body ached, and my low back was pretty painful. I grunted a lot as I moved around that day, but I thought it was from all the dancing I’d done the night before, and all the furniture moving I’d done the same day as I’d gone out dancing.

The pain ramped up a bit on Saturday, and I ended up eating 1,600mg Ibuprofen. I dreaded the next day, because I’d promised a friend I’d help her move. The blood started out the same way it had last month – really dark brown at first. This time it was also clotty.
I also experienced nausea, but now I’m wondering if that is from the Wellbutrin, as I’ve had nausea nearly every day.
On Sunday, I was bleeding moderately heavy. I got up and helped my friend move. The pain wasn’t an actual issue, because I’d consumed a total of 2,400mg of Ibuprofen throughout the day. The issue was the crushing fatigue and weak muscles in my thighs and legs. I really helped out a lot though, including helping hefting a mattress and box spring, lifting and carrying boxes, and even hauling a dolly loaded down with boxes up 6-8 marble steps. After that, I took a few boxes up 3 flights of stairs, and helped heft the mattress up those 3 flights of stairs. THEN I declared myself done.
The pain didn’t actually become debilitating until Sunday evening, when I took half a vicoprofen and sat with my heating pad for the rest of the evening.

Today is still moderately heavy, and the threat of more cramps looms.

But damn, knowing that without the gabapentin, I’d be bedridden… and after 28 years battling this disease, puking from the pain, bedridden every month, missing work and school… I just can’t believe the new life I have now because of the gabapentin. Wow.

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.

This month was a blue moon month, and also a blue cycle month. Two full moons and two cycles in one month. My friend Kristine calls my period my Wolf Time, since my periods seem to happen around the time of the full moon. ;)

This cycle began last night in the middle of the night. For a day or two prior, my body felt heavy and I was out of breath easier. I had very mild twinges of cramping, especially on Saturday. The PMS cravings were on the increase this month, a full week before my period.

This cycle is painful – I’m guessing a 7 on the pain scale. It got to be enough that I got nauseous this morning, whimpered in pain or cried out throughout the day, and finally dug into my old medicine stash of Vicoprofen.
Now I’m happily dissociated from the pain, but I’m bleeding heavily and have to go to the bathroom often.

While I’m sad to miss the Labor Day weekend’s events because of the pain, I’m happy that the worst of my pain will hopefully happen while I’m off work for the holiday, so I don’t have to miss any work.

I think my pain level is increased this month because I’ve been drinking a lot of alcohol this month. I’m still going through major depression in the wake of the divorce. Even though the divorce was final on July 5, 2013, I’m still a bit of a basketcase over it.

Today I spent the day sleeping; on the couch and in my bed. I used the heating pad all day. Right now I’m going back and forth between writing this entry, watching Ghost Hunters and watching Sleepy Hollow. I can’t seem to focus on any one thing for too long. I blame the vicoprofen. ;)

I’m only at 19 days since the last onset of my cycle, and I woke up bleeding! WTF! I’m not supposed to be due for up to ten more days!

First my cycle lengthens from 25 days to 29ish days, and now I’m starting it at 19 days?
Is this the start of peri-menopause?

I had prior warning signs for the last few days, but I mistook it for just being too active on the dance floor. I took half a Tylenol 3 pill after going dancing on Friday, because the lower back and left hip were killing me. The low back pain was a sign of george, though.

The pelvic and low back pain, combined with right hip pain and mild nausea from said pains has led me to take another half Tylenol 3 pill today. I’ve also consumed 1,200mg of Ibuprofen today. The pain of everything has had me constant at about a 6.5 on the pain scale today.

Despite the pain, I still went out and got my hair cut, then met up with two friends I haven’t seen in several months, then did a bit of retail therapy before coming home and setting up this year’s AIDS Walk donation page (I organise a team for the walk every year). I have been hobbling quite a bit today – mostly due to the hip pain – but dammit, I still went and lived my life. I will call the doctor tomorrow about the hip, and I will call my surgeon about the early menstruation. Of course, I should probably read up on peri-menopause again, too. I don’t know if it’s too early for me – I’ll be 42 in September. My Ma entered peri-menopause around this age, so it’s not unheard of.

Tomorrow begins a week of tearing down classrooms and setting up for the Summer session. This past Friday, my head teacher and I successfully graduated 17 first- and second-graders. I made it through an entire school year without missing much work from endo, because I’ve been on Gabapentin. I have seen more money in my paycheck as a result, and have earned my worth with the management, who are finally considering me for a head teaching position. So, I’m still in pain, but I’m no longer averaging an 8 on the pain scale. I modulate the amount of Gabapentin I take during my cycle, so I’m getting 300mg a day instead of 200mg. This helps, but the side effect is that I forget everything. So long as I’m not taking 300mg every day anymore, it’s worth the side effect for now.

We’ll see how this week goes for me…
In the meantime, here’s a pic of my new ‘do!