Second Laparoscopy: Day 31 and 32 post-op

Day 31 Post-op
Monday, January 17, 2011

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

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

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

Day 32 Post-op
Tuesday, January 18, 2011

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

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

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

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

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

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

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

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

Second Laparoscopy: Day 2 post-op

Sunday, December 19, 2010

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

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

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

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

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

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

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

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

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

Pill counting

Pill counting


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

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

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

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

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

A nightgown is your best friend right after laparoscopy.

A nightgown is your best friend right after laparoscopy.


Second Laparoscopy – Day After Surgery

Day 1 post-op

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

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

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

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

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

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

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

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

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

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

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

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

Goals for the day...

Goals for the day...


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

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

My poor bruised arm

My poor bruised arm


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

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

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

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

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

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

Waiting to be discharged

Waiting to be discharged


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

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

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

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

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


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

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

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

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

Pillowpalooza.

Pillowpalooza.


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

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

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

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

Second laparoscopy – Day of surgery

I slept maybe four and a half hours the night before surgery, but was ready for the day when my alarm went off at 4:30am. I had showered the night before.

It had rained all night. I got my stuff together and off we went in the wee hours of the morning to the hospital. I was very stressed out that we’d be taking my husband’s car to the hospital – I’d desperately wanted a rental car for the day of surgery and the ride home. The reason is that a couple of years ago, the sunroof in my husband’s car leaked, and it was months before he got it looked at, so the interior of the car molded. It smells awful to this day. I even bought him a mold spore detector, and it came back nasty. He sent it in to be analysed and the results came back indicating mold.
He took his car in to to the detail shop to be cleaned, and declared his car all better. But his car was not all better – it still smelled awful. Ever since then, he’s been highly defensive and even angry whenever I bring it up. I have a mold allergy, so I rarely like to ride in his car. We totally smell whenever we ride in his car. He swears he cannot smell it. It’s a point of constant stress between us.

I did not want to have mold on me just before entering surgery. I did not want mold on me on the ride home from surgery. And yet, this is all we had to work with. My car was not an option because the seats are far too low and I feared I’d be in worse pain for the ride home.

We got there at 5:30am like we were told (2 hours before surgery), only to be met with the fact that Admissions was not open, yet! There were two or three other groups of people waiting outside the admissions office as well. My husband went to park the car in a better spot while I waited.

Good morning...waiting for Admissions to open...

Good morning...waiting for Admissions to open...

”It’s


Once Admissions opened, it wasn’t very long til I was registered and sent up to the third floor. I turned in my paperwork at a little window and was given a room immediately. I shared a room with someone this time – an older woman with a jaw injury of some sort.
After I got into my surgery clothes (gown, slippers, net hat), my husband decided I should wear the fez I brought. I was saving it for being discharged from the hospital, but decided what the heck, and put it on. This of course had the whole team of people who came to see me full of smiles and giggles.
A woman named Michelle came in to ask if I wanted to be part of a study for endometriosis, and I told her yes, definitely. I signed all the required paperwork. The anesthesiology team came in and I had notes for them this time – I wanted the drug Versed, and I wanted the intubation tube to be smaller, cuz they’d scraped me going in, last time. I was told everyone gets Versed, now. Woo! Party! heh.

My husband and I went down a partial list of my worst allergies, including latex. I have to thank my husband for remembering to bring that one up, cuz I was focusing on foods. The latex reminder was super important as it meant I’d get a silicone intubation and catheterisation. I focused on the corn allergy, because I did not want dextrose in the I.V., so they gave me a regular sugar/saline bag instead.

I also talked with anesthesiology about bulging discs in my neck, and remembered to bring copies of my MRIs and x-rays which proved the condition. They promised to take good care in positioning my head and neck.

The surgical team came in and introduced themselves – there were four people. Probably the same as last time, but it seemed like a lot. The surgery room sure can get crowded, sheesh!

At some point, my I.V. was hooked up, and I was denied numbing agent – I was told by the woman setting me up that she didn’t carry any on her, or they were running low on it, or something.

After I talked to everyone, the Versed was injected into my I.V. line, and I felt the effects immediately. Soon afterward, I said goodbye to my husband and gave him my eyeglasses and fez for safe keeping, and was wheeled into surgery.

This time, I remember being wheeled into surgery, because they took me so soon after giving me the Versed. I remember entering the surgical room and being asked to help with the placement of my body on the table. Thankfully, the table was not cold, as other women have described on the endometriosis forums. I don’t remember anything after that.

The next thing I remember was being wheeled to a room. People left me on the gurney in the hallway for a few seconds to finish prepping the room. I was in and out of consciousness. My husband says I was conscious upon exit of the surgery room, and says I recognised him. He says I was in the post op recovery room for two hours after surgery. I don’t remember any of this.

The next thing I remember was seeing my husband in the room I was admitted to. I asked how it all went, and he told me they’d gotten all the endo they could see/find. I did not question the fact that I’d been admitted because I didn’t yet realise I’d been admitted.

The surgeon came in a little while later and told me she wanted to keep me overnight for observation, because they’d bumped into the mesentery of the small intestine, which caused immediate bruising. She said she didn’t realise at first that they’d bumped into it with the camera scope, so when they turned on the camera and saw the bruising, they panicked and began searching all over the area for a puncture mark. They called in an oncologist in the event they were dealing with a cancer. The oncologist assured them that it was just from being bumped, and that I’d be okay, and to stop prodding around.

I’m very glad she told me all of this, and of course I was a bit worried. I didn’t like the fact that I’d been admitted to stay overnight, but I was glad at the same time that my surgeon was taking precaution.

Upon hearing the news of surgery complications

Upon hearing the news of surgery complications


At this point I was told I needed to get up and walk around, and that I was still catheterised. I was still pretty wiped out, and high on pain meds – I found out I was being given regular doses of Dilaudid intravenously. The slightest movement made me very dizzy. Getting up wasn’t going to be easy. I began to fret immediately over two things: how much extra things were going to cost insurance-wise, and dealing with a catheter while conscious – especially the eventual removal of it. *shudder*

I really cannot remember too much of the sequence of the day of surgery. I was in and out of consciousness all day. It was extremely painful to move. I needed regular doses of medication and for some reason wasn’t given the pump they said they’d give me. I needed to be repositioned often, because I hurt and was not comfortable in any position. The act of repositioning also hurt like hell, but nurse Annika was good to me.

It was a long day. I was determined not to stay on the catheter – it was getting increasingly uncomfortable, anyway. By evening, nurse Hannah was on duty, and helped me with catheter removal. I cried out several times but she was slow about it like I requested, and very patient with me. It stung and pinched and hurt so bad. Ugh. I haven’t been in that much pain since childhood UTIs afflicted me.

After that, the goal was to urinate on my own, and that meant having to get out of bed. Nurse Hannah put a ‘hat’ in the toilet bowl to measure my urinary output.

At some point, dinner arrived. I was served Juk and hot water with option of a tea bag. I declined the tea, but was so hungry that I ate a third, if not half of the Juk.

img_2123

 

Not long after, I experienced horrible pain under my ribs, radiating up to my shoulders. I recognised this pain from the first surgery as the gas pain, and I also knew that I had eaten too much too soon, because of the pressure on the diaphragm. The pain was unbearable, and I was moaning and crying. Most likely I was a 9 on the pain scale. I got up to walk at this point.

On my very first walk, I shuffled the length of the corridor and back again! I was impressed with myself, and the pain level in the ribs and shoulder dropped to about a 3. My husband and the nurses were impressed with me, too. But the walk took a toll and as I approached my room, I began to experience bad pain. I was once again elevated – an 8 on the pain scale. This time, the pain was centered in the pelvic region and was of course due to the walking.

My husband had gone home and come back – so he’d had a very long day. He stayed with me until about 11pm and was reluctant to go, but needed to go home because he needs a CPAP to sleep.

Husband, watching over me in the hospital.

Husband, watching over me in the hospital.


Nurse Hannah was the best nurse I had while in the hospital. She cared for me all night and was so patient and unconditional. To pass the hours, I tried to listen to my headphones, and I got out of bed and stood for awhile, and I spent long periods of time in the bathroom, trying to get my brain to reconnect with my bladder. I can’t remember when I was able to urinate, but I was very proud of myself.

Finally, around 1am, I was able to sleep. I could only sleep for an hour to an hour and a half at a time, because I had to keep getting up to urinate.

The pre-op appointment (Mark II)

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.

Wait For It…

Here we are, once again, with the waiting game, and all the uncertainties of moment-to-moment planning.

I could blame it on all the sugar and alcohol (sake) I’ve consumed over the past four days. I could blame it on the blasted endometriomas on both ovaries. I could blame it on being stressed out by work, unfinished summer school homework, and my upcoming surgery. I could blame it on me being 39 years old. I could blame it on the overall illness itself: endometriosis.

But the fact remains that George was due on Saturday, and there’s still no flow, yet.

It’s the same thing I’ve ranted about, before:

I feel like I’m in limbo whenever my period is late. I go through each minute of each day knowing I should have been bedridden already. I’d already planned for the time off work. I’d already stocked up on groceries and tried to prep the house for my descent to the underworld. And then george is a no-show and I’m left biding my time, Waiting For It.
I’m in that special hell where I cannot exert myself too much because it causes pain…but I’m not in debilitating pain. And I’m super tired – I want to sleep all day and all night. And yet because there is no constant gnawing pain and/or bleeding going on, I feel like I’m expected to BE somewhere and DO something productive. But my body isn’t up for it. But my mind is restless. So the guilt sets in. I have video blogged about the guilt before, but it’s so hard to LEARN the lesson and just be okay with whatever my cycle is doing – just roll with it.

 

And now, the TMI part. It’s for science! It’s for education! It’s because there is no owner’s manual so I try to create it as I go!

On Saturday, I experienced low back and pelvic pain throughout the day – I was at a 3.5 on the pain scale for much of the day. It was annoying pain, but not debilitating. My mid to upper back kept trying to seize up, though, and this got worse by 10pm, when my vaginal mucosa changed from clear to pinkish. I contemplated taking a Tylenol 3, but I’m running low on it, so I didn’t take any. I did however consume 1,200mg of ibuprofen that day.

This morning (Sunday) I began spotting – it is dark brown and sticky, which is why I’m blaming all the sugar and alcohol intake. The spotting never ramped up the entire day, but the pain has been like a yo-yo. I took a total of 1,200mg ibuprofen again, and ate half a Tylenol 3 during the afternoon, which surprisingly made me quite loopy when I ran some errands with my husband. Thankfully, he was the one driving!

I was hoping that since I’ve been in moderate pain for the past week that I could at least have had my period by now, but noooooooo. The spotting that was happening has since disappeared since my shower this evening.

I’m setting my alarm for the usual time tomorrow, because I have no idea if I’ll be in any shape to go in to work or not. Had everything happened on time yesterday, I’d have spent half of yesterday in bed, all of today in bed already, and would be on Day 3 by tomorrow already. But noooooo. I get to start off at Day 1, Take Two, tomorrow.
Maybe.

Pre-menstural pain is debilitating

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.

Day 6 and 7 of November Hell

This has officially entered into NOT OKAY territory.

I continued to have pelvic pain throughout the day and evening on Sunday. I forgot how much Advil I ingested, but I know I took half a Tylenol 3 Sunday night before going to a friend’s house to hang out.

Yesterday was my first day back to work after missing two and a half days late last week. I bicycled to work, because I was excited to no longer be bedridden, and the cramps and bleeding had gone away. Or so I thought. :(

I experienced intermittent, sharp pain in the low uterus and on the right ovary throughout the day. The pain got really bad when I pedaled hard from work to my psychology appointment (ONE MILE), then pedaled hard to get home (HALF a mile!) so I could make it to my naturopathy appointment in time.

These are short distances I pedaled, on level ground. To be in a lot of pain like that threw me for a loop, but it’s not the first time. It happened to me back on September 20, while bicycling to my psychology appointment after work. I experienced pulling, stabbing pain in my right ovary. The pain lasted for several minutes after I climbed the two flights of stairs to my shrink’s office. Same thing again yesterday, but it was both the low uterus and the right ovary.

I have had the usual “OMG I’M SO TIRED” post-menstrual cycle thing going on, only it’s exacerbated by the fact that we just observed Daylight Saving Time this past weekend. So this fatigue thing will last through the next cycle for me, at least. :(

Last night we hung out at another friend’s house, so we could watch the second episode of The Walking Dead (it’s awesome, btw). Once again, I needed Advil (400mg) and Tylenol 3 (half a pill) to get through the evening. It was much worse to be standing or walking. The pain was likely a 5.5 on the pain scale when it struck throughout the day, spiking to 7 when I was riding my bike. The pain dropped to a 3 on the scale when I was sitting, though every muscle in my body was tense again, steeling against pain.

I got home from the shrink last night and then hopped in my car and drove over to the dispensary to attend my first Naturopathy class. Like most things, I’ll try it once and see how it goes. The naturopathic doctor I saw knows what endometriosis is, and seems confident she can help alleviate some of my pain. She is realistic and knows that the condition is currently without a cure, and very tricky to control. For that, I am retaining her. I like smart doctors who aren’t arrogant or cocky, or who promise me a cure *coughchoke*doctorkateo’hanlan*cough*

This brings us up to today. The pelvic pain is STILL with me. I had intermittent pain throughout the day again, and it got to stabbing level, spiking to a 7, when I ran half a block from my car to my home to catch the FedEx person in time. Once again, standing is worse than sitting. I’m about to head out with my husband for some groceries and supplies based upon my visit to the Naturopath last night, so we’ll see how bad the pain gets. :(

Going back to the Naturopath for a moment – she has several things for women with endometriosis to try. I am sharing these things here for women who do not have a Prop 215 card and/or who cannot afford to see a Naturopath:

  • Drink half your body weight in ounces each day to facilitate elimination.
  • Use castor oil packs over the abdomen and pelvic region every day for 20 minutes (see instructions below).
  • Buy the Anti-Inflammation Diet and Recipe Book, by Jessica Black, ND
  • Take 20,000iu of Vitamin A in palmitate oil daily (DO NOT TAKE THIS AMOUNT IF YOU ARE TRYING TO BECOME PREGNANT, AS IT CAN CAUSE BIRTH DEFECTS)
  • 1oz vitex agnus-castus (chasteberry) twice daily via dropper or mixed into food
  • 15 drops of seroyal chelidonium plex twice daily
  • Seed cycle: From Day 1 of menses to Day 15, take 1tbsp daily of ground flax and ground pumpkin seed. From Day 16 back to Day 1 again, take 1tbsp daily of ground sesame and ground sunflower seed.

 

To create the castor oil pack, you will need:

  • unbleached, non-dyed cotton, wool or flannel cloth, about 15″ – 20″ in size
  • plastic wrap (or wax paper)
  • glass dish with lid
  • small bath towel
  • hot water bottle or heating pad
  • 6oz castor oil

 

Directions for the castor oil pack:

  • Pour enough castor oil onto the fabric to saturate the cloth.
  • Lie down and place the oil-saturated cloth directly on skin over treatment area.
  • Castor oil stains! You may wish to cover the saturated fabric with a piece of plastic wrap or wax paper.
  • Place the bath towel over the plastic wrap. If using heat, apply it now (medium warmth).
  • Rest. :) You can rest for 20 mins or leave the pack on overnight.
  • When you are done, store the oil-saturated fabric in a glass container with a lid. The fabric and oil can be used for months this way. Add more castor oil as needed. If you take a break in treatment days, just store the container w/ fabric in the refrigerator.
  • To remove the castor oil from your skin, wash with a solution of 3tbsp baking soda per quart of water. You can use the same solution for washing castor oil out of linens and fabrics. Keep in mind that castor oil WILL stain cloth!

It seems like a lot, but I’ve done a lot more for other regimens, elimination diets, and detoxes/flushes.

It’s one more thing I have to say, “Hey, I tried it.”

Day 4 and 5 of November Hell

Friday night (Day 3) I was still feeling crappy. After dinner, I ended up with stomach pain on top of the endo pain, along with the pelvic nerve pain radiating down the legs. I was at that point officially having a pity party. I was getting depressed. I had already missed work and didn’t go outside to see the sun on Wednesday, Thursday, and most of Friday.

I did notice by 9pm Friday though that the bleeding had begun to dissipate. Overnight, I barely bled at all.

When I woke up on Saturday, I hoped I would continue to be heading out of the Underworld. However, that was not the case. We had to get up at 8am to join friends for one of their pre-wedding meetings at the wedding location, but I just did not want to get out of bed. I was seriously tired. At the same time, my back hurt from top to bottom because of having been bedridden for days – again. The pain was intense – it felt like stinging.

I finally motivated myself out of bed at 8:30am and got in the shower. Trying to get dressed after my shower was excruciating. I had to pick up my ankle and move my leg gently, placing my ankle on my knee so I could put my socks and shoes on. I wrote to my friends “You know it’s that kind of morning when you end up shouting, “ON YOUR FEET, SOLDIER! MOOOOVE!” at your uncooperative body.” :(

We made it to the wedding meeting ahead of schedule, thankfully, and I moved super slow. The sister of the grooms showed up as well, since this meeting focused on her, since she is the one catering the wedding. Now she also has endometriosis – we are still waiting to find out what stage. But it’s got to be stage III or stage IV, because she also had a lot of other stuff going on, and had to have her uterus, cervix and right ovary taken from her. :(
Her surgery was three weeks ago, and she still looks like death warmed over. She’s still walking and moving like I was at Day 3 post-op. This is because there was so much trouble during her surgery to clean everything out, that she had to have the equivalent of a C-section. =(

I placed myself on call to help her with anything she needs this week leading up to the wedding next Saturday.

While we walked around the venue and discussed things, the pain began to set back in for me. I and another friend had to sit down for a few minutes – yet another friend who has menstrual pain, on top of chronic pain from two bulging disks in her back, spinal stenosis, and antereolysthesis. Between her, me and our friend who just came through a partial hysterectomy, the wedding party seems full of broken birds. We chuckle at it and go on with our bad selves. What else can we do?

When we finished with our meeting, the pelvic pain was getting to be too much for my friend G and I – mostly because we also had to go to the bathroom really bad. We had all driven separately, so took off on our own separate ways. My husband drove us down to Mariposa Bakery, which is a completely gluten-free bakery. It was my treat for making it through another month in the Underworld…and I got to use the bathroom. It was there I discovered I had started bleeding again. I was not happy about this. Thankfully, though, the pain never got above a 4 on the pain scale.

I bought us two cake doughnuts, a cupcake for the husband, and a pumpkin spice muffin for myself. We both didn’t care for the cake doughnuts. But ah well, it was worth the try! I haven’t had doughnuts in *years*.

We also got some coffee. Yeah yeah, I know, this is all bad – sugar and coffee and baked goods and whatnot. All inflammatory food. I was already bleeding and in pain to begin with, and had been for days, so I was well into “who cares” territory.

All yesterday it was hard for me to move without grunting because my body was so stiff. I started to loosen up by evening, thankfully. Also thankfully, the bleeding had stopped again, and I didn’t even need to wear a pad by evening.

However, by this morning, I was back to being super stiff and sore again. I partly blame this on the fact that we had moderate rainfall overnight, which has continued on and off throughout today.

I was alarmed to find that I had resumed bleeding by 9am this morning. I was furious, because this is Day 5 – after three days in a row of bleeding fully stopping. GAHHH so today I’m back to feeling super tired and run down, and every joint in my body is aching and stiff, and I’m having to wear a pad again. The bleeding is light, but it should be NOTHING by now.
The pelvic cramps are sharp and intermittent, and centered in the low uterus.

In spite of that, I went to my regularly scheduled Alexander Technique class at the dispensary today. I’m glad I went. When I got back home, I needed a rest, but now I am going to try to get on with my Sunday. There’s chores and homework to do for the coming work week. I will emerge fully from the Underworld by no later than Monday night. I decree it so!

October pain noted


 
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