Oh what now

I was at work on my birthday (Thursday, September 17) monitoring the children at lunchtime, when suddenly I was doubled over in sharp shooting pains in my bladder region.

The pains continued intermittently for several minutes, and then disappeared for the rest of the work day.

Three days earlier, I’d had some bladder pain, too. The pain was about six days following the end of my last period, and I had said it was either due to trying to do yoga first thing in the morning, or perhaps it was mid-cycle pain already.

After the severe pain had passed on September 17, I went to the bathroom to check on myself and found lots of milky-coloured, sticky discharge. My first thought was that the cervicitis was back. But the pain felt lower and definitely more frontal – in the bladder.

It is possible with how hot it’s been outside, and all the running around I do when working with children, that I’ve given myself a bladder infection because I let myself go for too long before rehydrating, before using the bathroom, and well on top of it all, I’ve been sweating through my cotton underwear and forgetting to bring an extra clean, dry pair to work with me.

On Friday, I brought extra undies and changed into them by lunchtime, but still, the damage is done and I’m not sure yet if I caused whatever infection is happening, or if it’s just manifested on its own.

Then, this morning I woke up feeling like a mack truck ran over me. I had low back pain so severe that I wanted to cry. I got out of bed and sat on the couch with a pillow behind my back. The pain dissipated between that and then taking a nice, hot shower.
However, as I was putting my clothes on, I experienced pain in my left scapula, which radiated to under the back of my ribs. It was hard to breathe. At one point I sneezed and thought I would cry. The pain lasted for the better part of the day, with the severe low back pain returning on top of the shoulder/rib pain. Around 4:30pm, the shoulder/rib pain was gone again and it was mostly low back pain. By the time I got home from a birthday outing for a friend – around 6pm – it was back to shoulder pain AND low back pain again, and that’s where it’s been ever since.

I’m mad because as of September 16, I thought I had around 11 good days left before bedridden time again. And then the next day, POW, pain that made me double over. Three days later – today – POW, alternating pain from low back to upper left shoulder to low back to pelvis… lather, rinse, repeat.

I would say welcome to Living With Endometriosis – women are more prone to bladder infections and a condition known as Interstitial cystitis (IC). But the thing is, I’m NOT having the main problem associated with bladder infections or IC – painful urination.

I looked up Urinary Tract Infection, Candidiasis, Cervicitis and Interstitial Cystitis – what I’m experiencing doesn’t fit any of those conditions.
I even looked up kidney infection – nope, not what I’m going through aside from the flank pain.

The only thing left which has more than one symptoms similarity for me would be Mittelschmerz – which I first proposed back on September 14.

Other than that…if the pain persists, the next ‘only other’ could be ovarian cancer. Whatever. I already have a prescription to go get a CA 125 test and I’m prepared emotionally WHEN it comes back as elevated level.

Day 4 of mittelschmerz!

WTF!!! I thought mittelschmerz was supposed to last UP TO 48 hours! We’re at 96 hours of worsening pain!

It started on Tuesday. The pain was centered low in the uterus. That makes sense since the endo that was left behind at time of surgery is on the bottom of the uterus where it meets the bladder. The pain was mild but annoying, as it usually is during ovulation.

On Wednesday, the mild pain ramped up by afternoon to moderate and very annoying. I devloped low back pain and was very tired. At work, it hurt to pick up the baby. However, I did not take any pain medication. I wanted the pain meds but I kept putting it off, because I wanted to drink wine with my friends later that night.

For pain management, I began doing the pelvic exercises and slow stretching throughout the day.

However, I got so mad at my body for putting me in moderate pain. I got into that “nothing I do will ever stop the pain and the progression of this illness” mentality again.
So when I was with my friends Wednesday night, I drank not one but four glasses of wine.

On Thursday, the moderate pain continued, same as it was on Wednesday. I wanted pain meds but again I kept putting it off, because I get tired of all the pain pills I have to take. I wonder what hurts my body more, 23 years of taking up to 1,200mg ibuprofen a couple times a day when the pain hits, or drinking wine? I mean, come on…
More pelvic exercises and slow stretching throughout the day.
The pain was so bad on the way home that I went into dissociation mode. My face dropped, my eyes stayed straight ahead and were out of focus, and I just … drove.
By bedtime I wanted Tylenol 3 but again I put it off, instead grabbing for my friend’s progressive relaxation tapes he loaned me.

This morning I woke up groggy, even though I went to bed a full hour or more earlier than I’d done all week. I was slow and tired. The cramps ramped up again on the way to work.
Before 8:30am I gave in and took 600mg ibuprofen.

I think the reason I fight so hard against taking meds when I’m not on my cycle is precisely BECAUSE I’m not on my cycle. It’s not time yet dammit! I shouldn’t BE this way!
So I deny myself the meds and push through it with the mentality that this will pass because I’m not on my cycle and besides, the pain is a 3 to 4 on the Mankoski pain scale.
I end up declaring to myself, “This!? This is nothing! When on my cycle, I’m at an 8 or higher!”

But this morning, I couldn’t take it any longer. This has been going on for four days!!! WTF!!!

The pain just makes me want to cry because not only has it been going on for 4 days, it’s that the pain returned just 8 days after my period ended. And the pain is just dull, looming, constant, spread out.

To describe it emotionally, it’s like the feeling a child has when they can’t get their way, and they stew for a moment, then stick out their bottom lip, then melt down. Or to place the emotions as an adult…picture it like this: you’re told after having worked 8 hours without a lunch that mandatory overtime has just gone into effect…again… and you can’t leave for another 2 hours…and this is day 4 of management doing this to you.

To physically describe the pain, it is not in my ovaries, which is what normally happens with mittelschmerz. It’s been low and centered in the bottom of my uterus where it meets the bladder. I have the low dull feel a woman might experience with a bladder infection starting. But this isn’t a bladder infection – it’s just how my endometriosis behaves.
The pain as of yesterday began spreading to my anus. It’s not shooting pain – that happens when I’m on my period.

I guess the closest I can think to describe the pain coupled with emotions again would be a hang nail or paper cut that is ever constant and enough to drive you mad – or the feeling of being constipated and not being able to have a bowel movement for 4 days or more – THAT feeling – and that alone can drive you mad.

Yes yes, I called my GYN and left a message.

It’s been 4 hours. I’m taking 600mg ibuprofen again.
I’m beat down. It’s sunny outside and I could take the baby for a walk in the steep-hilled neighborhood. I may be viewed as a slacker if I don’t take her outside for a bit, which in turn makes me feel guilty and brings up the resentment for things this family has said to me over the months regarding how my illness impacts their careers.

WELL WHAT DO YOU THINK IT DOES FOR MINE?

I was telling the mother about how some friends want me to go into business running a daycare. Her sister in law runs a daycare, so we talked shop for a few minutes. The mother then told me I’d need to make sure to hire someone who could always be there and be reliable.
I was taken aback. I replied with, “yeah I’d definitely need a co-director because of my illness”.

There is a large rant there but I don’t have time for it.

People who suffer what I suffer already know the rant because they live with such insults all the time, too.

I am reliable when my illness doesn’t claim me. I gave full disclosure at the outset, including time off monthly. They decided to hire me anyway.

Dammit, I don’t feel well.

I’m ready to cry on the job.

I don’t feel well.

1pm update: The on-call GYN called back and we discussed all the symptoms at length. She had my history and everything. I am so thankful. She said it’s likely not mittelschmerz but an endo flareup.
She said that if i am not better by Sunday, I am to call the emergency on call doc and go back in for yet another ultrasound to check for more cysts.

She addressed my fears about being flagged for using too much Tylenol 3, and authorised me to take the Tylenol 3 as needed (I can’t on the job though). She said my regular GYN would see the note in my file and would have no prob prescribing more before it’s time again, should I run out.
Instead of absent-mindedly saying ‘have a good weekend’ before hanging up, like the receptionist and everyone else does, this GYN said, “hang in there.” I nearly cried – I’ve been on the verge of tears all day but that almost did me in for sure.

mittelschmerz time again

Yesterday I got mittelschmerz. Yesterday the pain was centered low and up front and center in my pelvic region. Once again, the pain hit exactly 8 days after my last period, and exactly 14 days before the next period is due. This is my fourth month of recording this mid-cycle pain. You’d think that by age 37 I’d have known my body well enough and would have pinned the mid-cycle pain years ago. Alas, no. I’ve known for years I get mittelschmerz, but until now I thought it was willy-nilly. Now I see it has a set pattern. Well, and I guess I was much more in the dark as to symptoms until recent years, since I was also living in constant symptomatic food allergy reaction, which didn’t help with the mittelschmerz or the endometriosis.

Okay okay I’m not a big dummy. I’m a smartie for figuring this out at all! Yeah!

Last night, the pain spread to my lower back, and I took 600mg Ibuprofen for it. Mittelschmerz for me lasts 2-3 days. I had extensive adhesions and endometriosis on my left ovary at the time of surgery in 2007. My surgeon had to pry my ovary off the back of my uterus, because the endometriosis adhesions had twisted it around and stuck it there over many years. I still get most of my ovarian pain and ovarian cysts on the left side.

This morning, the pain spread to both ovaries, and now I’m feeling pain from my vagina to my vulva and it’s trying to extend to my left upper leg.
I’m also really tired, though I still managed to take the baby I care for for an hour-long stroller ride yesterday..up hill both ways where I work…

Today, not the case. No stroller rides. I’m beat. Doesn’t help that I’m not giving myself enough sleep at night. I’m falling into the trap that a lot of endometriosis bloggers do – “Must get info out NOW! People must know about this NOW! The timing is critical!”
I spoke with fellow blogger Melissa via facebook today – even when she is in the worst shape herself, she was able to give advice and help another (read: me!) to stop stressing so much. She’s a very strong woman. We endo sufferers are stronger than most, I must say.
I’m super glad I am now getting to know some of these warrior women online.

mittelschmerz

I do have an official trend. This is my 3rd month of noting when I get uterine pain between menstrual cycles. And it definitely happens 8 days after I stop the previous cycle. At least I know, now.

The mid-cycle pain (mittelschmerz) hit me on Friday. I took 800mg for the pain, met some friends at the local German restaurant to see a friend play drums for the Lee Vilensky Trio and to wish his girlfriend well – she’s our upstairs neighbor and she’s moving out soon to shack up with her rock star boyfriend. ;)
From there, we jetted off to San Jose to see our friends 187CALM play.

At the nightclub, I got some juice to drink, because I’m no longer drinking booze. I noticed mid-way through the show that the pain was getting pretty bad, and it was moving into my bladder region. Of course, I forgot to bring my medicine. I began to wonder if the orange juice that the bar serves has high fructose corn syrup in it, because that ALWAYS gives me low uterine/bladder pain. By the time I got home, I was declaring I’d be taking Tylenol 3. But I was so tired that I forgot, and I went to bed.

I woke the next day (Saturday) and it hurt to even walk. Every time I moved my left leg forward to walk, my lower left pelvic region shot pains from the front to my anus. I popped 800mg Ibuprofen again and went about my day, wincing from the pain. Whenever I had a moment of privacy, I’d do some pelvic exercise (kinda like slow belly dancing – rolling the hips/pelvis around) and get a little bit of relief.

I dunno, I just refuse to take the Tylenol 3 unless I’m at an 8 on the Mankoski Pain Scale. I’d say that I was at a 5 on Thursday and a 6 on Saturday.

Saturday night, I went dancing. I only drank water with fresh lemon all night. I was fine for much of the night, especially when dancing. As soon as I stopped dancing for the night and we were on our way back to the car, the pelvic pain returned with force. I declared I’d take a Tylenol 3 when I got home, and once again I forgot.

Hey, you could say I’m a masochist or you could say I’m prolonging my life by not further damaging my liver with Tylenol 3. :p

Today I woke up pain-free. This makes me very happy, but it’s also what alerted me to the fact that the past couple of days could have been mittelschmerz. And now I know that’s what it was.

I have one more good week – possibly two – before I’m bedridden again. I’m due on Valentine’s Day weekend.

Gives new meaning to My Bloody Valentine!!!

Good thing my husband and I aren’t fans of celebrating that day, anyway, or else I’d get all bitter and self-pitying at how special plans were once again ruined by this stupid illness.

Mittelschmerz

For the past week and a half, I’ve been experiencing mittelschmerz and low uterine pain. Today is particularly bad, with the pain sharp enough at times to make me gasp. George is due in 7 days, and I’ve already started premedicating as of today.

My diet has been shitty for the past month, due to rushing and stress. Not only that, but I read that apples and flax seeds/oil have natural estrogens in them, so I stopped eating those things until I could do further research. It seems in that time, the mid-cycle pelvic pain returned, and I caught a cold that I’ve been trying to fight off since about last Thursday. My man also got a cold and by Friday was taken down hard by it. He’s off work Monday and today because he’s coughing so much and his coworkers don’t want him to get them sick. Bleh.
I’ve been taking vitamin C and zinc every day, along with my other vitamins, to fight this off. Today I reintroduced flax and apples into my diet in the hopes that they will assist in fighting off the cold that’s going around (a friend of ours was also sick last week, same symptoms).

I will also be picking up evening primrose oil tonight on the way home, as I’ve never yet applied that remedy.

If I’m a week early, this means I cut it REAL close to the wedding with my next cycle. And I can’t bear to have that happen.

Post-op, Day 9 – Outstanding issues

I forgot to follow up on a couple of issues.

On Day 3 of post-op, I finally began experiencing the dreaded shoulder pain, which happens as a result of the migration upwards of carbon dioxide gas, which was pumped into me on the day of surgery. The gas enables the surgeon to inflate my trunk and therefore move my organs around easier.
The shoulder pain felt like joint pain. My shoulders were VERY tense during this time – it hurt to even touch my neck and shoulders. I applied a heating pad as instructed, and took Ibuprofen by Day 4. The shoulder pain subsided by end of Day 5.

On Day 7, I experienced mittelschmerz. I experience this nearly every month. Only, this month, I wasn’t expecting it. I wasn’t thinking about it. I figured since I had surgery, it wouldn’t happen. Stupid me.
Mittelschmerz is German for “middle pain”, and it applies to painful ovulation, or early onset of menstrual cramps.

I looked it up, and according to babyhopes.com, “Most women who experience painful ovulation usually report a nagging pain that begins as a sharp twinge and diminishes into a dull ache for the next day or so. But for some women, the pain can be severe enough to be disabling and can even be confused with appendicitis. Occasionally, in addition to mid cycle pain and cramping, some women may experience nausea, and/or light menstrual spotting. Mittelschmerz lasts for 6 to 8 hours in most women; however, occasionally it can last as long as twenty-four to forty-eight hours.”

The pain I had on Day 7 was so debilitating that I was bedridden for most of the day. I took TWO Tylenol 3 and 600mg of Ibuprofen that day. The pain lasted into Day 8. I applied one Tylenol 3 and one Ibuprofen that day (yesterday).

The Mittelschmerz is BAD, because (according to the site referenced above), “Painful ovulation/mittelschmerz is believed to be caused by a small leakage of blood from the ovary that occurs at the time of ovulation. This blood, which is later reabsorbed, is thought to cause an irritation of the abdominal wall which causes pain.
This leakage is also what I believe to contribute to Endometriosis. Which means the disease is unstoppable – it does not take breaks, “It can’t be bargained with. It can’t be reasoned with. It doesn’t feel pity, or remorse, or fear. And it absolutely will not stop, ever, until you are dead!” (sorry, I couldn’t help the Terminator quote).

Today, despite having to take Tylenol 3 again for pain, I persevered and was able to work at my desk for most of the day. I only took one nap. The mid to upper back pain is still a big issue, though, while I try to regain muscle strength after being bedridden for a week.

The last issue facing me is that due to the ovulation, I now have PMS hormones coursing at light speed through my veins. I was sitting on the couch working on a genealogy project last night when suddenly I had a mild panic attack. I realised that I could feel my veins pumping in my neck and shoulders, and it was difficult to breathe. I had to stretch out and do breathing exercises to calm myself down. The same thing happened again today while I was napping. I awoke suddenly in a panic, veins pumping. When I got up, I was shivering, even though the house was warm. I paced the house and did some dishes (go me! First time in a week I was able to do all the dishes in one standing!), and the warmth of the dishwater and steam warmed me up and calmed me down.

I’m really afraid of taking synthetic hormones. I am slated to go on The Pill as soon as I start menstruating in a couple of weeks. I’m not sure if I’ll chicken out or not. I’m afraid of all the side effects, and I worry about my mental state. I’m diagnosed Major Depressive and I get suicidal ideation. I’m terrified my boobs will grow and I still have gender issues, especially surrounding having tits. I’m already a 38C and that hurts enough as it is. I may chicken out of taking The Pill.

But the alternatives are not pretty, either. The Endometriosis grows back. Taking The Pill supresses the disease, they say, because of the progesterone in it. Why have surgery if I get all the crap removed and allow it to grow back? Hm. Well, the surgery was for peace of mind to say “SEE? I TOLD YOU!!” to the medical industry. But still. Why allow the stuff to grow back?

I don’t want to be one of those women who have half a dozen or more surgeries in their lifetimes. I don’t ever want a surgery again if I can help it!

mid-cycle pain (mittleschmerz)

I started cramping on the right side today. George isn’t due until the 21st, which is two weeks away.

Is it simply ovulation? Is the cyst back again? Did I grow another one? I never got the other one treated, because it was 11mm and I was told my body would reabsorb it. I thought my body did just that.

The gynecologist called me back today, too. She let me know that it’s okay for me to reschedule surgery. Last week, the billing department at the GYN’s office called me to tell me that B’s insurance was giving them a hard time over processing my impending surgery. They said I have a six month waiting period, which expires in November. They said they were investigating to see if I had pre-existing conditions. So I cancelled surgery til January. The doctor told me that’s the best I can do right now, cuz if I were to go ahead and do surgery in September and the insurance decided not to cover it, it would be $20K out of pocket.

Ouch.

So, surgery waits. And I’m on 600mg Ibuprofen, waiting for the mid-cycle pain to go away.
I can do this. I’ve done this for twenty years already.