I Will Not Suffer In Silence

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

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

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

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

So the bad news is:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I slept until 10am - another eight hour night before my body was too sore to stay in bed. Actually I should say my body is sore by the 6 hour mark, but I am stubborn and keep going back to bed until it’s been 8 hours. Oh how I love 8 hours of sleep.

The first thing I did when I got out of bed was spend about 20 minutes walking around the house and doing gentle stretches.

Today I cleaned up some papers and such on the kitchen table, but I didn’t get my ass out of the house until after 4pm. The weather was cold, overcast and windy - I think it only got up to 50°F today, and it sprinkled throughout the day.

My husband and I got some pet supplies for the cats, and then we went for a short walk behind the shopping center, which has a sidewalk overlooking the estuary (which flows into the San Leandro Bay). There are observation decks one can climb up to in order to get a better look at a view of the estuary and the Oakland hills. I climbed a bit faster than I had done yesterday, and coming back down the stairs, I was able to go at my normal pace. I did so giggling with delight.

However, less than a hundred feet later, I began to get stabbing uterine pains and had to slow my walking pace. I adjusted and picked up my pace again, but I still struggled with the pelvic pain. My husband stopped into a game store to ask a game console question, and while I stood there waiting, the pain reached a 5 on the pain scale.

When we got back to the car, I took 600mg of Ibuprofen. I’ve been fatigued ever since. I spent the rest of the night on the couch taking it easy, which sucks, because I had wanted to try going to a nightclub for the first time since before surgery.

Food I ate today:
Leftover Indian (Saag Paneer)
Gluten-free freezer pancakes
Boost drinks
Rice Chex cereal
Homemade macaroon a friend had made
20oz of water
Coconut juice

Note:
The foul smell abated some and the bloody discharge went away overnight, but late this afternoon I had some thick mucous discharge again. I’m wondering now if this is ovulation already. Today is about Day 6 of the new cycle, and I always get mittelschmerz on Day 8 of the new cycle. Could it be a couple of days early?

Complications:
I am still having the round of diarrhea or loose stool every morning. I’m guessing this is still a holdover from when the surgeon bumped the mesentery on the way in with the camera.

I nearly threw up tonight after eating the same kinds of food I’ve been eating; gluten-free pancakes and Boost. I also developed a headache so I took my temperature and the temporal digital read 100°F. The glass therm read 99°F. Bah, whatever.

Firsts for today:
I wore loose-fitting slacks! I looked like a dweeb, but at least I have a pair of slacks I can wear to work in the first week back, which is coming up fast.

Tuesday, December 28, 2010

Woke up that morning with the intent of going to the social security office, because both of us have name change stuff we’ve been meaning to do. I also wanted to call my doctor and see if I could get an appointment today for liver blood work, because I was still freaked out about the pink hue in my fingernails. I called UCSF and left a message. Then I called the local doctor’s office. They sounded condescending to me on the phone. “What, you think there’s a medication issue going on?” Ummm YES I’ve eaten over 80 Tylenol 3 since being in hospital on December 17, and I had an issue with high liver enzymes before, so YES I think there’s a fracking medication issue going on! I’m afraid of irreversible liver damage thankyouverymuch!

The local doctor had an appointment for me at 4:15pm. I then talked with my husband, who said he thought going to UCSF would be better, since they already have all my most recent blood work and surgery records. When they called back, they had a sooner appointment, so we took that.

It didn’t leave us time to go to the social security office after all, but I told my husband we could do that tomorrow, and that his priority is to me and making sure that I am well before dealing with any of his stuff. Yeah, he was still in the dog house.

The bumps in the road during the car ride did not bother me immediately and intensely the way they had when I was driven home from the hospital and like when we went out a few days ago. Rather, the torture was delayed. Half way to UCSF, I experienced stinging sharp pain under the diaphragm. The pain went away once we were out of the car and settled at the doctor’s appointment. The pain returned on the ride home, and returned again when we drove to a friend’s house that evening.

My exercise for the day came in the form of walking to the car, walking from the parking garage to the hospital and back, and walking back to the house.

I’d like to also note that while we were at the UCSF Women’s Center, I also walked across the street to the main hospital, where I delivered a Thank You card to Nurse Hannah. She wasn’t there, and the wing I had stayed in (4 East) was shut down and being painted, so I delivered the card to the other side of the wing (ICU).

Firsts for Day 11:

• Able to put on and tie my own shoes (have been wearing slip-ons til today)
• Able to wear a bra for part of the day
• Able to wear tights for part of the day
• Able to jump (we have ants entering at the top of the door frame. I was spraying the outside of the door frame with Bugs-R-Done spray, but wasn’t quite reaching the top. Before I knew what I was doing, I had jumped to spray. When I landed back on my feet, my eyes were wide, and I stood there in shock for a second. Then I thought, “Holy crap! I didn’t die!”

I was so excited by jumping that I jumped again. I giggled. And then I had to take a nap, because that had seriously worn me out!
I napped for about an hour.

Because of my fear of liver damage, I took no medication that morning or afternoon - not until I had gotten the blood work done. I gave three vials of blood that day; one for liver, one for kidney and one for blood count.

When I woke up from my nap, my husband informed me that it was time to head over to a friend’s house. She was going to take us to dinner in exchange for my husband watching her cats this coming weekend. We had Thai that night.

The weather had been rainy all day (winter in California), and worsened by evening to a drenching downpour. This made my life a little more miserable because of how slow I am in getting into and out of cars during recovery.

I had diarrhea as soon as we got to our friend’s house, and twice more as soon as I got home.

Nausea and stomach pain followed, lasting through bedtime. This was the second time since surgery that I had intestinal issues after eating Thai.
That night, I had fitful sleep. I was hot and cold all night - sometimes drip-sweating. This was about the third night in a row where I went to bed freezing and woke up sweating to death.

Sunday, December 26, 2010

This is not how I wanted to end Christmas.

When we got back home from our friend’s house, I was due for another dose of medication. I was hungry again, so I decided to eat a cup of mushroom soup.
With my mushroom soup, I drank a cup of egg nog, because it was Christmas night. I have been tolerating the Boost drinks, which contain cow’s milk, so I figured I’d be able to drink egg nog.

Shortly after ingesting the egg nog, I began to feel queasy and gassy. Not long thereafter, the massive gastrointestinal and pelvic pain started, along with a stinging fullness under the diaphragm. I sat up straight but that did not help. I walked around, but that did not help. Then I grew very weak and started shivering. My feet had been cold all day long, so I decided I would fetch the corn heating pad and put it on my feet. When I stood up off the couch, I nearly fell down. My husband had fallen asleep sitting up on the couch, so he was oblivious to my current situation. I shuffled hunched over, clutching my stomach, and made my way to the bedroom to get the heating pad. I could not find the heating pad where I thought it would be, and that’s when I broke down in choking sobs. This woke my husband, who sleepily came to my aid and asked if I needed anything. I was hysterically sobbing by this point because of the intestinal, stomach and pelvic pain. My husband was able to hear me say through my sobs that I needed the heating pad warmed up and that I wanted it placed on my feet. However, getting me to do anything other than stand hunched over, clutching the bed while I sobbed, was an issue for several minutes.

At 4am, I woke to use the bathroom. The bleeding had ramped up again and caused some pelvic pain. I got back into bed, but could not get comfortable. I tried to turn over on my right side, but it created instant abdominal swelling and pain, which scared the hell out of me.

I got back out of bed and went to the kitchen and made myself some ginger tea. I brought the tea with some Miralax into the bathroom with me. Turns out I did not need to spoon the Miralax into my tea - within moments of sipping just the ginger tea, I was able to have a bowel movement, which was soft.
However, the defecation caused further intestinal and stomach pain, as well as nausea.
I went to wash my hands after using the toilet, and realised that I might vomit at any second. I leaned over the sink, but that caused intense abdominal pain. I grabbed a large plastic bowl, which I keep in the bathroom and use to soak my pads in each month, and placed that into the sink. I took my temperature and it was 98.8°F.

It was around 4:23am, and I picked up the bowl and stood at my full height and let fly. I spent nearly 20 minutes vomiting. It was thick, and contained everything I had eaten in the past 18 hours. I noticed that the vegetables I’d consumed for dinner some 11 hours earlier had not fully digested. Neither had the chocolate mousse I ate roughly 8 hours earlier. I noticed too that the vegetables and the egg pieces from the Thai seafood casserole I’d consumed over 32 hours ago had also not digested.

At this point, I took note of the smell of the vomit, to make sure it did not smell like feces. I was on the verge of freaking out that my intestines had stopped working properly. However, the vomit smelled like vomit…which of course made me want to vomit some more. Alas.

I emptied the bowl carefully into the toilet and cleaned up everything as best I could. I washed out my mouth, cleaned out my nose, took another sip of tea and another sip of water. I took my temperature again. 99.5°F. Well, it’s likely elevated because of all the strain I’d just gone through. I then went to wake my husband.

He asked if I needed anything. I told him no, I just needed to inform him what was going on because I was scared. I told him I’d be spending the rest of the night on the couch because I could not get settled. I assured him I was not running a fever.

I chatted with friends on facebook, which helped a lot with managing my anxiety. Though it is unfortunate that people were awake in their own hells at that same ungodly hour.

Around 6:30am, the bleeding ramped up again. More clotting. Though I was experiencing pelvic pain, there was no way I was gonna try to take a Tylenol 3 or Advil on a stomach which was still so raw from all the puking.

At 6:45am, I was hungry enough to eat a few spoonfuls of cream of rice cereal with a bit of honey and ginger tea stirred in.

I went back to bed, and woke at 10:30am. I got up for the day because the pelvic pain and bleeding were too much to bear. My husband reheated some rice cereal I’d made at 6:30am, and I drank a cup of warm chicken broth with Miralax stirred in. I ate some jello, and then took my first Tylenol 3 in just over 12 hours.

That was around 12:30pm. At 1pm I took a second Tylenol 3, because the first one didn’t register.

Once the second Tylenol 3 kicked in, it enabled me to be dissociated enough from the pain to walk around. Around 2:30pm, I walked laps around the inside of the house. My pace was improving, but after about five minutes, I was totally wiped out.

At 4:30pm, I was still passing clots, and passed the biggest one yet. It was about half inch by half inch. Ugh.

I spent the day on the couch, though I did make myself get up and walk laps around the outside of the house in the afternoon.
Suddenly I was able to walk at a pace! I was amazed at myself.
However, I still fatigued very easily, and was out of breath quickly as well. Still, I did more laps around the inside of the house in the evening, again marveling at how fast my pace had become - in just 24 hours I went from a shuffle to roughly 2 or 3 MPH.

I experienced a migraine by 8pm that did not go away all night. I watched a lot of TV with my husband, and put a heating pad on my head. I refused to just close my eyes and sleep when I probably needed that more than anything.

Around 12:30am, my husband received some bad news, which set him into a really bad emotional funk. He went for a walk and didn’t come home for an hour. When he did come home, he got smashed drunk, even though I made him promise he wouldn’t. He came to bed at dawn, just as I was floundering in bed, trying to get up to use the bathroom. I told him my left arm had gone numb. It was my first night sleeping on my back, and I hadn’t given my head and neck proper pillow elevation. My husband was too drunk to get the hint that I needed his help. He gave me a half cocked smile and a thumbs up when I told him my arm was numb. I got super pissed off but just got myself out of bed and did my business. I stayed on the couch for the rest of the night, I was so mad.

Because my first pre-op appointment three years ago was not documented, I give you… super long ass detailed entry for this pre-op appointment!

I woke this morning around 6:30am in debilitating pain. I estimated I was 7.5 on the pain scale. Getting out of bed ramped it up to 8 on the pain scale. I wolfed down some cereal and took 1.5 Tylenol 3 in an effort to whack the pain.

Just after 7am, we loaded the wheelchair into the car and were on the road. I was nauseous and shaking from the pain - about an 8.5 on the pain scale. I cried on the way to the doctor’s office.

The pain meds kicked in about 30 minutes after taking them. I became chatty and felt alright. We were on the Bay Bridge, just approaching the toll booth at that time.

Then it went aweful again.

I became really dizzy and nauseated from the Tylenol 3. It occurred to me then that this had happened before - on the drive back from our one year wedding anniversary in Mendocino, California last year. I was on Vicoprofen at the time, but the results are similar enough - I was severely nauseated and dizzy and hunched over in the seat to try not to vomit.

So I noted out loud that when I am on codeine, I must not be in a moving vehicle, nor should I be ambulatory.

The visit itself went well. Nurse Jessie could see that I was poorly, so she ushered me into the room she usually reserves for me when I visit. She had me lay on the exam table and put a blanket on me. She got me a cup of hot water to drink.

My husband was with me the whole time. I was able to snooze for a few minutes, and then Dr. Giudice and her assistant, Dr. Skillern, came in to start the visit. At first Dr. Giudice described the general procedure and what to expect. She let Dr. Skillern talk a few times. After a few minutes, I said I was confused - I thought Dr. Wang was going to assist. Dr. G and Dr. S looked at each other, then back at me, and Dr. G simply said, “she was, but no.”

Oooooookay then! Wonder what untimely end her employment met!

At this point, I gruntled and shifted and forced myself to sit up so I could take notes, because I noticed my husband was not writing down anything on the questionnaire I had typed up. My surgeon took the 3-page document and we went over it together, twice, just to make sure everything was covered.

You really should copy these questions for your own surgeon interview. I got the questions from various places on the web, as well as using my own questions.
The questions are barely in any ordered format.

1) How many pelvic laparoscopies for endometriosis have you performed?

Well over 500 since 1987.

2) How many in the past month?

Dr. Giudice is a big ‘ol rock star now, so she often travels for seminars and such. She said that 93-95% of her surgeries per month are specifically for endometriosis.

3) How many had complications during the procedure?

She hates to jinx herself, but she says only one complication, and it was a fibroid issue - she discovered it was embedded in the uterine wall when she tried to take it out….

4) Do you have rectal surgery experience?

Yes, but it depends on how serious the endo is in that region.

4a) If not, will you have someone on hand in case there is rectal involvement?

No - she said that if adhesions to the rectum and intestines are found, they’ll do what they can within reason. However, if it requires a bowel surgeon, it’ll have to be yet another surgery. They just don’t have the surgeon on standby like that. Ugh.

5) Do you have intestinal surgery experience?

No

5a) If not, will you have someone on hand in case there is intestinal involvement?

See 4a above.

6) How much experience with pelvic laparoscopy for endometriosis does your assistant have?

More than 84 laparoscopic hysterectomies.

7) How many staff will be in the operating room with you, and what are their jobs?

Roughly six people: surgeon, surgeon’s assistant, anesthesiologist, anesthesiologist technician, scrub tech, and a circulation nurse.

8) Will you please correct my retroverted uterus?

Sadly, she cannot. She said the uterus is already held in place by a series of ligaments, and to push it into a position it was never in, even if it’s the “right” position, can lead to tissue damage and serious side effects. She said she’d see what she can do while she’s in there - perhaps she can put some sort of material between the uterus and the bowels so that it’s not gluing itself to the bowels anymore…

9) What sort of preparation is necessary for this surgery?

She wants me to do a bowel prep. HUGE SAD FACE.

10) What kind of anesthesia will be used?

General - I will be intubated.

11) Will I be given Versed?

I can ask for it at time of surgery.

12) How long do you expect the procedure to take?

Two and a half hours.

13) If one or both ovaries are badly damaged from the endometriosis, will you take one or both out, and what are my next steps (even if it’s just one ovary that has to be taken out)

It is not her intent to take anything. She only intends to treat surface disease and excise the endometriomas.

14) Will there be photos or video of the surgery?

Photos.

15) If a biopsy is done, when can I expect to receive results, and will my doctor call me?

Ten days post-op, though the holiday may delay until after Christmas (unless it’s bad news, then I’ll be notified immediately). The doctor herself will call me in either case.

16) I do not plan to take hormonal suppression after surgery – will this prolong healing time?

Not per se - taking hormonal suppression only serves to help prevent regrowth.

17) What vitamins/supplements should I avoid just prior to and after surgery?

Everything on my vitamin and supplement list is safe to take up to the day before surgery.

18) What foods and drink should I avoid just prior to and after surgery?

No food, drink or vitamins after midnight the night before surgery - otherwise, just stick to my current diet.

19) I know that being overweight can make me more high risk during surgery. How much weight should I lose in the next two weeks?

Not necessary to lose any weight (I am 5′5″ and weigh 166lbs and Dr. Giudice says it is not considered dangerous or obese for the surgical procedure).

20) What areas of my body need to be toned up in the next two weeks?

Nothing I can do will matter for this type of surgery, says Dr. Giudice, but if it will make me feel better, go for it.

21) Would a tubal ligation help in any way towards the “hormonal suppression” idea, or is it merely a birth control move?

It is merely a birth control move.

22) How many menstrual cycles do I need to give it before I declare this surgery a success?

It’s always hard to say. The risk of this surgery is that I might not experience any pain relief at all, just as with the first surgery. I was told not to be so hard on myself. I was told that they hope that I would have immediate benefit from surgery, but giving it 3-6 menstrual cycles is also rational.

23) When can I return to work as a preschool teacher?

Six weeks, preferably. Four weeks is okay with restricted movement.

24) When can I resume bicycling?

Four weeks.

25) When can I resume sexual intercourse?

Four to six weeks.

26) What results can I expect from this surgery?

Find the scar tissue and fix it. Correct the pulling on the right side.

27) What is the next step if this surgery does not work?

The Mirena IUD will once again be suggested, along with seeking help for Chronic Pain Syndrome, and continued pain management therapy.

Notes:
I’ve been worried about sleep apnea and heart murmur again, because I often get up multiple times during the night to urinate, and I often have a racing heartbeat in the middle of the night. This has been going on for about a year, but I’ve been too stubborn to accept a new medical issue. Now that I’m facing surgery, I’m concerned. I would like to push for an ECG, to see if the murmur is stable since my last exam, which was in August, 2001 at CPMC.

I was told to talk to my primary doctor. I called my insurance and they said I can self refer, so I’ve got a call in to a cardiologist.

Other notes to doctor:
Please be super careful when intubating me, because last time, my lower right inside gums/jaw was scraped open. I had a gash to worry about healing in my mouth, on top of the pelvic wounds. It took weeks for my mouth to heal up.

I was told to tell this to the anesthesiologist.

Other notes to doctor:
Please be super careful when catheterising me, because it took me several months after surgery last time to regain muscle strength to stop leaking urine.

She had her assistant note this, and said they will use a pediatric cath this time.

After the appointment, which I ended because I really needed to use the bathroom, I dreaded the walk back to the car. The Tylenol 3 was still coursing through my bloodstream, so even the elevator ride back down to the main floor made me wanna hurl. Once outside, I was off balance and shuffled a lot. I had a fixed gaze and probably a stupor to my face the whole way back to the parking garage. I did not use the wheelchair, though, because I felt that sitting and being pushed would be like being driven in the car, and that made me super nauseated.

The car ride back home was just as nauseating as the car ride to the appointment, but with the added hell that the pain relief part of the medication was wearing off. I felt every single bump in the road, and yelped continually. I declared that we are renting a Lincoln Continental or similar for surgery day. I want something comfortable and quiet to ride in. Hubby said no problem. ;)

I had blood work to submit, so my husband took me to the lab in our town. It’s not usually busy. I staggered in and filled out the paperwork, and waited. There was one guy ahead of me, rattling off all the names of people close to him who’ve died in the past year. So sad. He was getting blood work to rule out some kind of illness - he was saying he hoped he’d get good news back. I hope he does, too.

The phlebotomist I had was horrible. I think she was still rattled from the last guy, cuz when she emerged from drawing his blood, she looked like a deer caught in headlights. And she was young. She asked me what my blood draw was for and when I told her, she had no idea what endometriosis was, and told me she hoped the surgery lasted so that I’d never need another. Feh. That’s not how endometriosis works, but thanks.
She stuck the needle in without first securing the tourniquet or even telling me to squeeze my fist. Then she moved the needle around confusedly when the blood didn’t start pouring into the vial. I squirmed and yelped and whined, just as my husband returned with his coffee and said ‘Hi!’ … then he went grey and backed away into the waiting room.
The phlebotomist apologised but kept at it. A few seconds more and I could take no more. I told her to stop. She looked defeated. I told her to try the other arm, and not until the tourniquet was on for a moment, and not until I was squeezing my fist. She obeyed, and the blood squirted forth into the vial.

When we got back from the lab, I got into my pajamas, ate a couple of potato chips and went to bed. I was only able to sleep for about 45 minutes before I woke starving. I ate some pumpkin pie and something else - I forget.

I was unable to go back to sleep, but at least the pain had gone back down to a 4. I was still pretty high from the one morning dose. I kept trying to nap, but it wouldn’t last long. Around 3pm, I finally fell asleep for an hour and a half. The only reason I woke was that my cat had knocked against the inside of the closet. The noise alarmed me, which alerted me to the fact that my bladder/uterus was screaming to be emptied. I also noticed at that point that I was insatiably thirsty. I went through a pint and a half of water in minutes. This of course led to me having to pee every five minutes for the next two hours…

At about five minutes to 5pm, while bedridden and hanging out on the laptop, a new round of cramps appeared. I had the webcam on while chatting with my husband, so he got to see the change in my face, and he mentioned it. The cramps ramped up immediately from a 6 to an 8. I whimpered and yelped and tried to breathe. I took a full Tylenol 3, cursing the entire time, as I had only had one half hour of lucidity all damned day, and now I had to start a new round of being high on pain meds.

No position was comfortable. I stood up. I squatted down. I got on hands and knees. I stretched up, then down. I tried heating pad on the front, then on the back. I sat on my knees. It wasn’t until the Tylenol 3 kicked in and I had some dissociation that the intensity calmed down. Now I can feel the stinging pain, but at a distance. I have low level nausea from the meds and all the blood. And if I wasn’t already tired, I’m more tired. When my husband gets home, we’ll have Indian food delivered and then I’ll go to bed for the night, and hope I wake up pain-free tomorrow.

Thursday was a pain-free day! Yay!

On Friday, the pain returned. I had a lot of joint pain and back pain that day. By evening, my upper back was trying to seize up. By the time we left our friends’ house, my left upper arm was in constant spasm. As a matter of fact, it’s still in spasm.

Despite the low back and pelvic pain for much of the day (which was kicked up after being intimate, OF COURSE), I went walking all over town with my husband, and I refused to take pain medication in case I wanted to partake in any alcohol with friends (which I did later that evening).

I wondered if the resurgence in pain could be attributed to having been intimate with my husband, or if it was due to the impending rainfall, or if it was due to eating inflammatory foods, or all of the above. I felt guilty only for the inflammatory food ingestion, but only a little guilty. I have to LIVE my life, dammit.

When we got home last night, I thought I would need to go right to bed, because for some reason I was running a 99.9°F fever. I got all paranoid that someone I’d spent time with at two Thanksgiving gatherings the day before had gotten me sick. The flu is going around, and I’ve been trying to avoid the preschool crud for the past month as it is.

Despite the fever, I found I was restless. This is when the urge to CLEAN came over me again, as strongly as the urge had been on Wednesday night, when I was on my hands and knees wiping down baseboards in the kitchen and bathroom.

I was up til nearly 3am dusting furniture in the living room and rearranging toys and knick-knacks that we collect.

Part of the reason for this rearranging was that my husband has just purchased a new television and will be purchasing a new furniture stand for said television, so we needed to clear off the old entertainment center. I just had the energy in me to do it in the middle of the night last night, is all…

All the dust from the shelves had stirred up my allergies, so I took a full dose of Benadryl, hoping that it would serve to knock me out so I could finally get some rest.

Rest was not to be found! Though the good news is that my temperature went back down to normal.

I went to bed around 3am and still could not settle. And on top of it, I was freezing (thanks to premenstrual hormones). My entire body was tense, and my left arm was still in muscle spasm - not painful spasm mind you, but just a continual muscle twitch up near the shoulder.

Around 4am I could take it no longer, and I took my very last half pill of muscle relaxer I’d been saving. Finally, between the Benadryl and the muscle relaxer, I was able to get in a few hours of sleep. However, by 7:30am, my entire body was in full on clench mode again. I was sleeping with my fists balled up and my shoulders trying to touch. Even the heating pad didn’t dent the muscle tension.

I swear, at this point I prayed for horse tranquilizers.

Intermittently throughout the night, the pelvic pain also made itself known. It’s hard to know if the pain was solely because I’d been intimate with my husband the day before, or if it was solely because my period is due today, or if it’s the rainstorm that finally manifested overnight, or if it is a combination of all of the above.

Then there’s the fact that I’ve eaten nothing but inflammatory food and drink all weekend (pie, cookies, chocolate, nigori sweet sake, ham, steak, crab, butter, waffles with syrup, bacon, coffee with sugar and cream, cheetos!!).
Seriously, every last one of those items is on the inflammatory foods list and/or my forbidden foods list.

Today I will begin the round-the-clock Ibuprofen dosing. The pelvic pain is a low, droning ache. The low back pain is moderate, and is as a result kicking up some nausea. I’ve been doing slow stretches since last night for the pain.

My fever has not returned - so far so good! I really don’t like dealing with the endometriosis flareups while also being sick with a virus.

Outside, the rain is an on again, off again drizzle, with threatening-looking clouds. It’s a breezy 52°F (11°C).

And that’s the report - I was due today but so far nothing has started to flow, yet, aside from the pain of course.
I estimate I’m currently a 3.5 on the pain scale. And now it’s time to get up and move around…and take that ibuprofen.

The mid-cycle pain (mittelschmerz) started on November 16 and lasted through November 17.

On November 18, I was highly fatigued, and missed a friend’s concert. I was however able to get some teaching internship homework done that night, with my remaining spoons.

I got through work on November 19, and had to return to work on November 20 for the annual Fall Harvest Festival. Parents of the children who attend the school were put into groups and had a continent assigned to them. They all had to cook or bring foods found or popular to a particular continent. Each class did songs and dances relating to the continent/country they are studying. My class has been studying the Philippines in Asia, and so they counted from one to ten in Tagalog, sang Sampung mga daliri (see another cute rendition here), attempted a traditional dance, and sang I Am But A Small Voice (which went so well that they got wild applause).

After the Fall Harvest Festival, I needed downtime. I’d used up all my spoons, but I still wanted to go out dancing that night. I was pretty upset with my body for being so tired and achey. I was mad at my mind for being so moody and premenstrual.
I ended up staying home and joining a party of friends 2,500 miles away in my home state. They were having a party and so I joined them on Skype. They were all super drunk and having a fun time, so my husband and I decided to have elderflower fizz - it is elderflower liquor with champagne.

Well, the champagne hated me worse than I expected. I know I’m not supposed to have anything with yeast or sulfites, but this particular champagne must have been loaded with them. My stomach hadn’t hurt that bad or been that upset in a long time. What a shitty day overall it had turned out to be, health-wise and emotionally for me.

On Sunday, November 21, I went to a matinee with my husband and two of our friends - we saw Harry Potter and the Deathly Hallows. When I got home, I spent the rest of the evening once again catching up on teaching internship homework, and practicing my presentation for Monday.

Despite the weekend’s ups and downs, my husband and I were able to enjoy each other intimately. I note this because with endometriosis, it is often difficult to be intimate without grave pain. Twice a month is the norm - anything more than that and we’re jumping for joy. Such as it was this month - a veritable jumping for joy.

On Monday, November 22, I began to experience gnawing uterine cramps, and I knew this was the result of having been intimate with my husband over the weekend, because I am diagnosed with dyspareunia. Same thing happened which set off the mittelschmerz last week.
So on Monday, I had sharp stabbing pain on the right, then on the left, then radiating through the rectum as day/night progressed. That day, I took half a Tylenol 3 + 400mg Ibuprofen at lunchtime at work. Later, I ingested half a Tylenol 3 + 400mg Ibuprofen at dinner time, and then another half Tylenol 3 after dinner while at a friend’s house catching up on The Walking Dead.

When I got home, I experienced a painful bowel movement, which set off some nausea and shakes, and reminded me what I’ve known for years - that I have rectal involvement with endometriosis. I went to bed with a heating pad on my abdomen and lower back all night.

This morning, I woke nearly two hours before my alarm clock went off, and could not get back to sleep. I had only had five hours of sleep. Despite that, the pain level was very low, so I went to work. I did not bicycle to work because the pain has been too unpredictable, and it has also been raining.
While walking from my car to the workplace, I was so shaky that I thought I might collapse. I couldn’t tell if the shakiness was from nerves or from my body becoming so weak from fatigue and recent pain, but I forced myself to keep walking.
I got through the morning in a moderately agitated state, with frequent bouts of ‘warm flashes’ because my hormones are doing acrobatics inside of me.

The gnawing uterine cramps started up again at lunch hour. I experienced intermittent sharp stabbing pain on the right ovary. I took 600mg Ibuprofen at lunchtime at work, but the pain radiated to my rectum, which left me debilitated, shaky and nauseous. Right before I was to end my lunch break, my bowels went into a painful tizzy, and I spent many minutes on end at the toilet, trying not to vomit from the recto-vaginal pain as a painful bowel movement tried to happen. When I finally did defecate, there was blood in the stool. My anus did not hurt, so I wondered if it was from hemorrhoids or from endometriosis perforating my bowels. Either way, I was feeling really ill.

I can handle a certain amount of uterine pain more than I can handle the ovarian pain, but I cannot handle the recto-vaginal pain at all. May as well beat me senseless, it’s all the same.

When I got home from work today, I applied a heating pad to my bottom, half a muscle relaxer (Soma), .5mg Ativan, and a nap. I slept from around 3pm til nearly 8pm. I woke to urinate, then had cereal for dinner, which caused a new round of painful defecation - loose this time, with some more blood, and nausea. I took my temperature - it’s 99.4°F. But then it’s been 99 point something more often than not for months, if not over a year, now.

I began to wonder if I have an intestinal virus. I’d spent the better part of last week fighting off an upper respiratory tract infection. Preschoolers - they’ll kill ya.

Now I’m back in bed, journaling all of this before returning to sleep for the night.

Good night.

I awoke in such horrible back pain this morning that my entire back from top to bottom stung with burning sensation, and it was hard to breathe.

It’s due to a combination of the endometriosis making my body want to fold in on itself, and the horrible bed we have. We just got this bed a year ago to correct the horrible bed we’d gotten a few years previously. We took months to pick this bed out. We thought we were making the right decision. It’s been nothing but trouble since we got it, though. Worst of all, my husband compromised his choice of bed to get this one because every time I had laid on it, it felt so comfortable for me. And since I’m the one who spends far more time in bed than he does because of my illness…well you can imagine my immense disappointment that this bed didn’t work out. :(

I took 1.5 Tylenol 3 pills with my breakfast this morning, and could not get back to sleep. Just like yesterday, I could not settle down. I had moved around too much, emptying my Maths homework from the page protectors and the 3-ring binder that my cat peed all over several weeks ago, and therefore I put myself in too much pain and nausea before bed. Then I woke in even more pain this morning, and could not settle down again, until now.

This morning I cleaned out the refrigerator, dumped the old food into food recycle bags, loaded the dishwasher, prepared and made some food for myself, and got out my Maths homework. I only got one illustration done for the homework, but at least it’s something.

I’ve just taken another half Tylenol 3 and 600mg Advil gel-caps. The uterine pain has been sharp and stabby since last night. I have cried out and/or yelped multiple times last night and today because of the pain.

The catbox still needs changing, but I’ll do it later. Right now, I’m going to FORCE bed rest. The flow is still dark red, though a bit brighter than it was…and it’s been heavy since yesterday morning.

Yesterday I was excited to say, “I’m mobile!”
My husband and I made bacon and pancakes for brekkie. He had leaded coffee, I had unleaded. Then we met up with a couple friends to go over clothing details for a wedding party we’ll be in next month.

I had intermittent moderate pain yesterday, from the moment I went to step out the door at 2pm, because the bleeding had restarted after having gone away overnight. But I went and hung out, anyway. I took 400 or 600mg Advil gelcaps as I went out the door.

While we were going through our wardrobe ideas for the wedding, more pain hit and I took a half a Tylenol 3. I can’t remember if I took 600mg more of Advil or not. :/

I had no further bleeding - just pelvic pain.

As I was shopping with friends, I took 1/2 Tylenol 3 around 6pm - I thought for sure, this time, the last gasp was starting. But no, it was still only low back pain & some pelvic / bladder pain.

Around 7pm, I ate 1/2 cup of 7 veggie soup. I was hungry but didn’t have an appetite.

Around 9:30pm the nausea set in, as did a full on stomachache, with, once again, the feeling that the last gasp would start.

I drank 3/4 cup ginger tea and ate a plain gluten-free waffle with no butter or anything on it. It didn’t help, so I took some Maalox and went to bed.

I woke with uneasiness this morning, and the stomachache is back, along with low-grade nausea.

Today will be the first day back to work (I missed Thurs and Fri). Hopefully the pain is gone til next time. Hopefully this stomach crap abates soon.