zeptember

Here’s the thing I really want to talk about today (but first i had to get all caught up from the weekend in my last post):

I’m so frustrated about not knowing stuff about Endometriosis until years after information has been put out there. It is officially pissing me off now. Last week I wanted to know how alcohol affects my illness, because I’d had two binges this month and now I’m worried that I’ll be in worse pain or that george will be late. So I have been googling for information on diet and endometriosis, and alcohol and endometriosis.

Today I find good information to go off of, only the info came out FOUR YEARS AGO and I didn’t know about it.

That’s FOUR YEARS OF PAIN AND SUFFERING because my gynecologists and doctors don’t read up on the latest studies, and/or they don’t provide newsletters or phone calls to their patients to pass the good info on. I have to do all this myself. I’m all alone in this. It’s fucking frustrating. It drives me to rage because I feel so isolated and left out to suffer and die when there’s this wealth of information just sitting out there. It’s not fair.

Diet Linked to Endometriosis (to view the article directly, paste the url to a google search window, then click through to the story. Otherwise, if you go to the url directly, they’ll try to make you sign in as a registered user)
News Author: Laurie Barclay, MD
CME Author: Désirée Lie, MD, MSEd

July 15, 2004 — Dietary fruits and vegetables seem to protect against endometriosis, whereas red meat and ham seem to increase the risk, according to the results of two case-controlled studies published in the July issue of Human Reproduction.

“We found … that there was a 40% relative reduction in risk of endometriosis in women with higher consumption of green vegetables and fresh fruit,” lead author Fabio Parazzini, from the Gynaecologic Clinic of the University of Milan in Italy, says in a news release. “But, for those with a high intake of beef, other red meat and ham, there was an increase of about 80-100% in relative risk.”

The investigators compared dietary patterns in 504 women admitted to obstetrics and gynecology departments for laparoscopically confirmed endometriosis with those of 504 women admitted for acute nongynecological, nonhormonal, nonneoplastic conditions. Median age was 33 years (range, 20 to 65 years) in the cases and 34 years (range, 20 to 61 years) in the controls.

Participants were asked about their diet in the year preceding the interview, including how many weekly portions they ate of selected dietary items, including the major sources of retinoids and carotenoids in the Italian diet. They were also asked about alcohol and coffee consumption.

Compared with women in the lowest tertile of dietary intake, risk of endometriosis was significantly lower for the highest tertile of intake of green vegetables (odds ratio [OR], 0.3) and fresh fruit (OR, 0.6). High intake of beef and other red meat (OR, 2.0) and ham (OR, 1.8) were associated with increased risk.

Endometriosis was not significantly associated with intake of milk, liver, carrots, cheese, fish, whole-grain foods, coffee, alcohol, butter, margarine, or oil.

If these findings are confirmed in prospective studies, the authors suggest that attention to diet could reduce the prevalence of endometriosis from 5% in Italy to around 3% to 4% or about 200,000 prevalent cases (and about 10,000 new cases a year) fewer in Italy and 800,000 fewer prevalent cases in Europe.

Study limitations include data for only a few selected indicator foods, no estimate of portion size or total energy intake, and the possibility that a high intake of green vegetables, fruits, and fish could reflect more health-conscious attitudes and/or greater likelihood of having endometriosis diagnosed. The authors recommend prospective interventional studies to address these issues.

“However, despite these limitations, our study does suggest that there is some link between diet and risk of endometriosis and indicates that we now need a proper prospective interventional investigation to study these factors,” Dr. Parazzini says. “Endometriosis is a distressing condition that affects the quality of life for many women and if there are adjustments that can be made in the diet to lower the risk it is vital that we gain really firm evidence about which foods protect and which foods increase risk.”

The Associazione Italiana per la Ricerca sul Cancro helped support this study.

Hum Reprod. 2004;19:1755-1759

Clinical Context

Endometriosis is said to affect up to five in 100 women in Italy and Europe. Although its pathophysiology is unknown, a study by Britton and colleagues published in the May 2000 issue of Cancer Causes Control linked endometriosis with higher intake of polyunsaturated and vegetable fats, with no risk reduction associated with high vegetable and fruit intake. An inverse relationship has been shown between endometriosis and body mass index (BMI), for example, in a report by Missmer and Cramer in the March 2003 issue of Obstetrics and Gynecology Clinics of North America. There are also suggestions that the condition is related to exposure to higher estrogen levels, which also is associated with fibroids and endometrial cancer.

The authors of this study postulate that a diet high in fats increases the circulation of unopposed estrogens and may predispose to endometriosis. Fats may also influence prostaglandin concentration and affect ovarian function.

This report combines two retrospective case control studies to examine the association between dietary intake and incidence of endometriosis, relying on a single seven-day food intake recall of Italian patients presenting to hospitals.

Study Highlights

• 504 women younger than 65 years with laparoscopically confirmed endometriosis from obstetrics and gynecology departments in 3 cities were matched in 1:1 ratio to 500 age-matched hospital controls without endometriosis.
• In the control group, 31% were admitted for traumatic conditions, 23% had nontraumatic orthopedic conditions, 12% acute abdominal pain, and 34% other illnesses. Absence of endometriosis in these women was not confirmed by laparoscopy.
• Both patients and interviewers were blinded to the purpose of the study.
• Patients completed a structured questionnaire while in the hospital, on medical and gynecological history, lifetime oral contraceptive use, and food frequency diary for the last 7 days covering selected dietary intake of fats, whole-grain foods, retinoids and carotenoids, alcohol, tea, and coffee. Validity and reliability of this method was not defined or compared with other food intake assessment methods.
• Alcohol intake was defined by amount of ethanol in wine (125 mL), beer (40 mL), and spirits (15 g). Wine accounted for more than 80% of alcohol consumed.
• Recall of typical food intake for the prior few years was not recorded. Other lifestyle factors such as smoking and exercise, other gynecologic conditions, and use of hormones other than oral contraceptives was not reported.
• There was no estimate of portion size or daily energy intake.
• BMI was documented as less than 20, 20 to 23, and more than 23 kg/m2 with no separate category for overweight or obesity.
• Intake was subjectively described by patients as low, intermediate, and high for each category which was then converted to tertiles of intake for milk, meat, beef, liver, carrots, green vegetables, eggs, ham, fish, and cheese portions.
• Mean age was 33 years (range, 20 to 65 years). Women in the endometriosis group were more educated, thinner (lower BMI), and more frequently multiparous than the control group.
• There was a significant reduction in risk of endometriosis associated with high intake of green vegetables (OR, 0.3) and fresh fruit (OR, 0.6).
• Increased risk was associated with beef and other meat (OR, 2.0) and ham (OR, 1.8) intake.
• The ORs were 1.0 and 1.8, respectively, for intermediate and high intake of beef and other red meat, and 0.5 and 0.3, respectively, for intermediate and high intake of vegetables.
• These trends were still significant when age, BMI, education, and parity were taken into account.
• Consumption of milk, liver, carrots, cheese, fish, whole grain foods, butter, margarine, oil, coffee, and alcohol were not associated with endometriosis.

Pearls for Practice

• Endometriosis is associated with lower intake of green vegetables and fresh fruits, and higher intake of beef, other meats, and ham.
• Intake of milk, whole grain foods, coffee, fats (butter, margarine, and oil), and alcohol is not associated with endometriosis.

There’s also this, which is restricted to paid members only.

Dietary factors and the risk of endometriosis
C. Williamson
Nutrition Bulletin
Volume 29, Issue 4 , Pages298 - 300
2004 British Nutrition Foundation

This really pisses me off, because I don’t have assloads of money to spend on medical journal after medical journal just to keep up with how I should be managing my illness! I don’t have a doctor to update me every time something new is reported in these journals! I don’t have a news feed to update me, people! I need SOMETHING! Make this information free! GAH!!!

First, let me catch you up on george. He went away on Friday, the 25th. That night, I babysat for my friends so they could go see The Dark Knight. Then, when I got off work, my man and I went and caught the midnight showing of the same movie.
It’s AWESOME and scary and nearly gave me a panic attack from all the suspense/thriller action blammo. Lordy. My heart and nerves just can’t take much excitement anymore, I guess.

On Saturday, we cleaned out the storage unit a bit so we can start sharing the space with a neighbor, which in turn reduces by half the amount of what we spend on the unit each month. Not a huge amount with the coming rent increase but still, every penny counts.
Saturday night, I got to witness a beautiful flashback to my man’s past by seeing a band he loved from the 90’s. The band 187 Calm played a one-off reunion show down in San Jose. My man got to connect with his old friends (the band he was in back then played some shows with 187 Calm) and it was fun to see them all together again. My man has talked so much about them over the years.
And can I just say, the bass player showed her bass a thing or two, and made out with it while giving it a what-for! I swear I was blushing some of the time, she was so awesome up there on stage. Holy shit. I mean, I don’t see grrrl bass players too often, so I dunno if they all do this. I’m guessing not though. Wow she is hot. I even told her after the show that I liked how she showed that bass a thing or two. She grinned ear to ear. A very smiley night overall.
My friend found video footage from the show, and clearly the person filming the event is friends with the bass player, cuz most of the time is spent watching her.

Sunday, I went over to a friend’s house and we looked at images from her wedding. I told her that I’d lost my bride’s dude (as opposed to bridesmaid), because he can’t afford to fly out.
So I asked her if she’d consider again the question I asked way back months ago, but told her I know she still has a lot going on family-wise and personally. I asked if she’d be a bridesmaid this time, instead of the wedding coordinator. To my happy surprise, she accepted! YAY! Oh crap I just remembered I forgot to update my other bridesmaid and I think my matron of honour with the good news. Will do that when I get home from work tonight…

After talking more wedding stuff and showing her pix of my dress, we got together with my man and spent a lovely afternoon hanging out at a bookstore and then a breakfast joint in Berkeley, and then we showed her a winery really close to our island home.

In all, a fabulous weekend.

I went to work yesterday and just took it easy. The parents I’m working with are so easygoing, it’s a quite a blessing compared to how I was treated on other jobs. We just stayed in the house all day (usually I take the infant for 1-2 stroller rides a day). Instead, the child got belly time on the playmat, got playtime in her new exersaucer, sit up time on the couch, floor and bed (with close supervision and lots of pillows handy to break any sudden falls), back-to-side-to-stomach assistance, tours around the house naming everything, and 60 children’s songs sung over and over and over again.

So, basically, a typical day, sans the stroller rides, and I napped when she napped because I was still so worn out from being bedridden from Monday evening through Wednesday.

The pain and bleeding set in again by 4pm, and to my dismay, I had forgotten to bring my pill splitter. I didn’t want to take a whole Tylenol 3 - this would make me obviously stoned and I didn’t want to be that way when the parents returned from work. I was already on Ibuprofen 600 and didn’t want to take another one of those because they tend to make my stomach hurt. So I toughed it out. I laid on the floor and stretched my back slowly while the child played on the floor next to me - it all worked out. I took half a Tylenol 3 when I got home, as opposed to a full one, because I had an interview with another family! They came to my house an hour after I got home from my other job. The interview was for occasional babysitting. I seem to have hit it off well with them and their son, who is an adorable two-year-old. I was told by a friend that he’s a handful, but he didn’t seem any different than most of the other two year olds I’ve dealt with in my time. Then again, I’m the teacher, whereas the person who told me the kid is a handful 1) has never had a child, 2) doesn’t want kids, and 3) has never spent any major amount of time around children.

Today I am feeling better but I am cautious. Usually I have 2-3 days bedridden with the Endometriosis, and then I have up to a day’s break from bleeding and/or cramps, and then I get one last push - one last day of hell. My man calls it the ‘last gasp’ before the illness recedes back into its cave of do0m for another 26 days.

I’m always torn when this day comes every month. Part of me wants to take it easy and not chance anything, and most of me wants to get back into my regular routine and just BRING THE NOISE to get the damned bullshit overwith already. That’s likely what I’ll do again today. I’ll go around cleaning house and perhaps even go for a walk and just BRING IT. And then lay around moaning for a few hours in extreme pain, drugged to the gills, and then …. it’ll all be over.

The clock resets for 26 days.

Happiness would be that this month, the ‘last gasp’ part is forgone altogether. It’s happened before. It’s very rare with me, but it happens.

I just woke up nauseated and cramping badly, and feeling hungry.

Sometimes the Tylenol 3 makes me nauseous. Most often, it gives me false hunger pains. And sometimes the pain leaks through despite being medicated.

Then again, the last time I took any meds was almost 3 hours ago, so I assume that it’s also time for another dose.

I also had more nightmares. I was in a daycare trying to put children down for nap. The children were children I’d cared for 15 years ago back in Michigan. Nobody would listen and I found myself shouting at them. At one point I’d had it and left my co-teacher alone with all the kids in the room, and went for a walk.
I got about three blocks from the daycare and decided I should turn back around. But suddenly, no matter which route I took, I ended up further and further away. I hopped on a bus or light rail train, thinking I could get back to the daycare quicker, but when I was let off the train, I found that I was now up by 16 Mile road (in Michigan). Panicked, I walked faster and faster, trying to find out what had happened, trying to get to a place I remembered, so I could get back to work on time. It was all very anxiety-inducing.

The dream shifted from that to an actual real life memory of being down in the basement at the house my first sex partner was staying at. He was mad at me for terminating a pregnancy I did not want, and ending the relationship with him because he’d lied to me about purposefully knocking me up. He held a shotgun to my head. I ran upstairs away from him in sheer screaming terror, and tried to dial 911 on the phone at the top of the stairs. He grabbed me from behind, grabbed the phone from me, bashed the phone receiver into the wall, turned me around, grabbed my neck, slammed my head into the wall a few times and choked me. Then he stepped back and calmly announced he was going back downstairs to get the shotgun and take care of both of us. I ran from the house, got into my car and drove home in hysterics.

That is a real life memory.

I threw open my eyes and blinked rapidly and breathed deeply to force the memory to fade away again.

I get this unexpected flashback every now and then. All I can do is breathe and push it away.

The flashback caused even more anxiety and I think is what brought the cramps. The books I have on Endometriosis state that since the uterus is hormone-rich, whenever something happens to set off a hormonal surge in the body, the uterus is also involved. And for someone with Endometriosis, this is bad news, because when the hormones set off their signals, it also activates the hormone-rich adhesions on organs outside of the uterus. Those organs in turn set off their pain receptors, because they think something is attacking them. And voìla, that’s how I get to be in so much pain and gushing bleeding.

So of course at this moment, all I can think of is THANKS A FUCKING LOT, DIPWAD. I STILL KNOW WHERE YOU LIVE. I STILL KEEP TABS ON YOUR SKANKY ASS. I STILL DON’T FORGIVE YOU, YOU FUCKING BASTARD. ONE DAY I’LL JUST STOP BY AND GET ALL KILL BILL ON YOU.

…and I breathe…

because anger sets off a hormonal wave again…

You see how it goes…

Good times.

I spent all day yesterday, from about 10am onwards in bed, because that’s when the pain started. I had cramps throughout the day but I remember my last onset of cramps was about 9:30 - 10pm last night.
And then this morning again at 9:45am. I keep wondering about this 12-hour cycle my body tends to go in with its cramping.

So much research still to do. Must make the time for it.

I *still* haven’t posted the research from fatty cells I was looking up last week. I had no idea that fat cells *produce* estrogen. Why did I not know this? The books I have on Endometriosis tell me this. I just retained the info til now. I need to finish typing up that entry and share it.

I was very drugged on pain meds and trying to sleep, but my man came into the room to tell me that ‘Steve’ was here to see the place. I was very groggy and tried to ask who ‘Steve’ was because I just wasn’t remembering. But my man left the room. He was busy with something and didn’t want to deal with Steve, and more to the point I got that he didn’t like Steve.
I was annoyed by this so I staggered out of bed and went to greet Steve, who was this guy with short reddish hair and a short reddish beard. He was dressed pretty normal if I recall correctly. I couldn’t place how we knew him.
I showed him around the house because I was paranoid that he might take something of value if not watched closely, simply because I didn’t know him. He refused to talk the entire time I showed him around the house. He took pictures of the place. His room would be in the basement*, so I showed him that. My friend Evil was also visiting, and I realised then that Steve** and Evil were also friends, and that Evil must’ve told Steve that we were subletting our place.

As I was showing Steve back upstairs, I shot a look over my shoulder at Evil, who had accompanied me through the house. He gave his usual smirk and shrug, and was not about to explain for Steve why Steve wasn’t talking. Steve was nice and smiled graciously and all, but just wouldn’t talk or answer questions.

We got back upstairs and I noticed that Evil was sitting in a recliner chair in the living room, and that there was a woman and young toddler in the room. They were waiting for Steve. He went to them and the woman began asking questions, and he nodded or shook his head to the questions. He may have talked to her but I never heard a sound.
The family went out the door to their van parked in front of the house, and started to pile in. I began to wonder if any of them took anything of value from our house. I was very mistrustful because my man showed no trust or liking towards them.

When I turned around to face the far end of the house (the living room became the kitchen which then became another sitting room or living room), I found my Aunt M had showed up. I was surprised by this, what brings her here, I wondered? I ran to greet her and hugged her and she hugged me back and we smiled really big at each other. And then my ma walked in (there was another entrance to the house between the kitchen and the second sitting room). What a surprise! Hi Ma! I gave her a great big hug and she was all smiles for me. And she looked great! Ma was wearing what looked to be a brown leather skirt - Aunt M pulled ma to her left side and went to zip the side of ma’s skirt, because the zipper was slipping. I stepped back and realised ma’s top was brown leather, too - a two piece. And ma was all skinny with firm taut younger skin and looked great as I said.

Next thing I knew, Aunt J was right there behind my ma, so I went to give her a hug but she was all standoffish as usual. She thrust out a card and some flowers but I managed a quick hug for her anyway.
She’s one of those people who hates but wants the affection. She’s like a cat that way. It always makes her uncomfortable but she appreciates it when people try for her.

Then my Uncle E came into the room from the same direction everyone else was popping in from. He’s a tall man like grampa was. I gave a polite smile up at him but I wasn’t too thrilled about him being there. And then who was to emerge from behind him, completely concealed until Uncle E stepped aside, was gramma***!!!!!

It was at this point that it finally dawned on me - everyone was showing up for the wedding. The thoughts ran through my head…the wedding is still a week away****. People are much earlier than they said they’d be! I wasn’t ready to receive people, yet! But since they’re here, I’ll just have to make do.

Gramma was still pretty short but her hair was big and permed like it was in the early 90’s. She smiled big for me and held out her arms. Someone held out a drink to toast the family all being here but Uncle E told us to “wait, let’s all get a drink so we can all toast”. I rolled my eyes and gramma snapped, “We just came from the sandwich shop and so you still have to work off allll THAT jazz!”
I grinned ear to ear, and gramma smiled back at me, and we gave each other a big long warm hug. Gramma congratulated me on my wedding.

Next, my brother, my dad and his wife showed up. I hugged both my ma and my dad’s wife simultaneously cuz they were standing near each other. They had their back to the living room, and when I squeezed them a hug, I looked over their shoulders to see Evil and some of my Michigan friends sitting in the living room. Evil was still in the recliner chair, and everyone else was clustered around where that Steve guy and his family recently had been.

I was just so happy that everyone was here all at once, and yet a bit panicked because I knew that the wedding was going to happen Real Soon Now!

George woke me because he was threatening to leak all over and stain the bed. I was very groggy. When I came back from the bathroom to crawl into bed, I realised I could not get the dream back. I grabbed my phone and went to call my mom, but my mind was still on gramma, and I punched in ‘g’ on the phone pad. It was only then that all the emotions spilled forth. I left my ma a very teary voicemail letting her know that her ma had come to visit me.

I miss my gramma so much. It wasn’t a sad dream. I’m still very happy. I’m still blessed with her visit and congrats and hug. But I know, emotions are strange things. I am crying anyway.

* The house in my dream was a cross between what Evil’s house looks like and my friend Blau’s house looks like. It’s nothing like what the house I actually live in looks like. And only Evil’s house has a basement.

** I still don’t know ‘Steve’ in real life.

*** Gramma passed away in 2003.

**** The wedding is actually three months away.