I woke after six and a half hours of sleep with the need to use the bathroom. I wasn’t in much pain.
The moment my uterus and bladder emptied, the searing pain began. I really wish my uterus was able to let the menstrual blood out during the night, instead of holding it inside as well as my bladder holds urine. Because the uterus was distended with fluid, it pressed down on my bladder. Because a large endometriosis implant (left in at time of surgery three years ago, because the surgeon was too afraid to get to it) rests on the ultra thin tissue wall which lies between uterus and bladder, the endometriosis lesions press upon the bladder, setting off the bladder’s pain receptors. Once the uterus and bladder distend and then deflate …

33 minutes later…

The pain got to be a 9 on the scale, which meant I could no longer type. I had been eating food so that I could take medication, but the pain ramped up fast. I took one and a half Tylenol 3 pills and staggered to get my heating pads. By the time I got back to the couch with one warmed heating pad, my husband had awakened and was assisting me in warming a second heating pad. I was in too much pain to talk, to do breathing exercises properly, to do anything but sit there with knitted eyebrows and gaping mouth. And then I remembered how pretty I looked just one week ago when we went out dancing, and I know how old and haggard I look right now from the pain. I began crying at that point.

I realised too that I’d let a lapse of medication occur overnight again. That’s why I’m in so much pain this morning. I woke around 7am or 8am to use the bathroom, and wasn’t in much pain, so my rationale at the time was to not damage my liver and kidneys further - give them a rest - and just go back to bed.
Had I taken the goddamned cocktail of Tylenol 3 and Ibuprofen like I was supposed to, I’d not be in severe pain. There’s nothing to discuss - my kidneys and liver will continue to be damaged - there’s no way to stop that. It is mandatory that I be in a drugged stupor from start to finish of each menstrual cycle, else suffer the pain consequences equivalent to going through labor and giving birth dry, with no meds or assistance.

The pain is about a 7.5 on the scale, now. And I’m drugged silly. Going to add some Ibuprofen to the 1.5 Tylenol 3 I just took, since ibu is anti-inflammatory.

To give you a visual of what pain does to a person:

This was me on March 15, 2010

This is me today, March 21, 2010

And today is the second day of Spring. The weather is 58°F with hazy sunshine. I won’t be seeing a drop of it.

I’m still convinced the horrible pain I was in last Saturday was a ruptured ovarian cyst, because the bleeding took so long to begin this cycle, and it’s very thick and dark. I slept for about nine hours and woke at 12:30pm yesterday. I was still barely spotting and was not experiencing a lot of pelvic pain. I should have been jumping for joy, right?

Instead, I began fretting over Time.
I was due on Friday. I’m usually on time. Descending to the underworld full speed ahead Friday morning would have meant that by Sunday night, most of the pain and despair would be over with, and I’d have a good chance of returning to work on Monday.

But no. The pain and bleeding ramped up late Saturday afternoon, so that means I have Saturday night and all day Sunday to get this endometriosis cycle out of the way before Monday 8am.

Fat chance.

I hate taking time off work every goddamned month for this illness.

I’ve been fired from two jobs because of this illness, and although I’m assured on the current job that I’m special, needed and wanted despite my illness, I still suffer the PTSD from those two other jobs. One harassed me for months before firing me. One harassed me for a couple of weeks - I quit 2 days before they were to fire me cuz someone leaked it to me.

I hate that I barely make enough money to even try pulling any financial weight around the house. Missing work gives me that much less money to work with. It may as well be babysitting money. I cannot cope with not being able to go halfsies like my husband and I used to do. He assures me it’s fine - that he’s so happy to see my sanity restored by working with kids again instead of in corporate hell. He keeps gushing about seeing all the kids that ran up to the fence Friday afternoon to say goodbye to me as I left work for the weekend. I call them my fan club. ;)

And those poor kids - I currently assist a class of mixed first and second graders. One of their teachers has been out sick for over a month - she’s got something serious and the staff’s not talking much about it. Could be cancer, could be lupus - it’s definitely taken out her immune system and she’s been having surgeries. I spent 3 weeks in that class with the co-teacher, and now I might be out sick for a day or two. The kids can’t take much more upheaval. Some of them were literally sobbing when their teacher came by for a visit Thursday afternoon, they miss her so much.

So it’s pretty obvious then - I don’t like letting people down - and having endometriosis means I will miss work, I will miss parties, I will miss appointments, I will miss out on life. I’ve been meaning to chronicle how many sunny days I lose to endometriosis in a year. It was in the 60s and mostly sunny today, and I couldn’t be out in it to walk around, bicycle, go hiking, because of the pain.
If I can make what I go through as concrete as possible to people, I think that might help quicken the pace towards a cure - more people will demand and fund more research to find a cure for endometriosis.
Education and awareness - it’s a small bit of hope I have.

To my awe and wonderment, I was able to work a full day, today.

I was unsure of my body upon waking, since full body joint pain worsens for me just before and during menstruation, but I slowly worked it out like I do every morning, and the pelvic pain did not worsen.

As I left the house to go to work, I felt like I should be looking over my shoulder, in case george was going to run up right behind me and knock me to the ground. But he didn’t.

I did get cramps at work, and I did have to medicate with ibuprofen. Every time I thought, “oh no, the pain is ramping up”, I’d wait a couple of minutes to see just how bad it would get, and the pain would die back down or disappear. This happened several times, today.

I spotted on and off. It’s still light to dark brown. By the time I was preparing to leave work at the end of my shift, the pain began ramping up again. The worst the pain got all day was at the end of my work day, and I took a half a Tylenol 3 the moment I got home. The pain was about a 6 on the pain scale by that time, and even now I am still only barely spotting.

My body feels like it has been in limbo all evening - it wants to be very tired, but my brain is not tired. My body wants to be in pain but it’s just not getting above a 3 or 4 on the pain scale. I took another 600mg ibuprofen this evening to ensure the pain remains minimal.

Oh and my legs and knees are still moderately sore from all the dancing I did last Monday, which doesn’t help with the joint pain issue.

I would love for the bedridden pain to pass me by completely this month. That would rule.

For the last few months, I’ve been referring to myself as Persephone, and telling people I have to take frequent trips to the underworld for a few days each month. Unlike the original story, where she must spend 3 months in the underworld, I spend roughly the same amount of time, but spread out instead of all at once.

If I could draw what the underworld looks like, it would be a cross between Goya and Waterhouse.

Woke up this morning with moderate low back pain that makes me wince and grunt when trying to move around, and full body joint pain. These are more symptoms that the endo is flaring again and about to take me down.

I’m still super tired emotionally and physically. I still feel weak and now have pelvic pain to go with the joint and back pain. The pelvic pain is about a 3 to a 4 on the pain scale. It is low, dull, achey. The joint pain is about a 5 to 5.5 on the scale. It is nagging and at times piercing.

I took a pregnancy pee test just because, and of course it came out negative.

I have a full week before my period arrives, but with how my body is feeling at this moment, it feels like my period is upon me in the next 36 hours.

I started menses at the age of 14 with a mindset of “this is just how it is for everyone”. Later, when I found out that it’s NOT this way for everyone, I became angry every month - “it’s not fair”. Then, later on in life, by the time I hit my 30s, I began to go back towards the “this is just how it is” mindset, but knowing that it’s just how it is with me.
Now, since January 2010, my brain has gone in a different direction. It’s actually turned into fear and near panic, in a child-like state, whereby this inner child has been crying out “Mama, I don’t wanna go to that bad place again!!! Why can’t anybody help me mama?”
My body and mind have gotten tired of fighting this fight for the past 24-25 years, and it’s crying out - it’s throwing a tantrum - like a bullied child does before school in the morning - “I don’t wanna go! You can’t make me go! Don’t take me there!”

The fact that I’ve been in a tearful emotional state since last night, continuing through this morning, is of course another premenstrual symptom. And once again I’d like to yell in anger to the endometriosis, “I STILL HAVE ONE MORE WEEK LEFT! LEAVE ME ALONE!!!”

I have been trying to score an appointment with a reproductive endocrinologist (RE) for a year, now. For one reason or another, the REs that I’d contacted never got back to me, or I had to cancel the appointments - it’s hard to track back in my calendar why it hasn’t worked out.

But today! Today I began going down the list of reproductive endocrinologists in my area as per Aetna’s website. I found that the first one - Dr. Ryszard Chetkowski - has a record against him. Some kind of public reprimand set in 1997 and not due to expire until March 31, 2010! There’s no way I wanted to book an appointment with him.

NEXT!

I called the office of Dr. Mary Hinckley and Dr. Deborah Wachs. I was told by the receptionist that the REs there will ONLY see patients who are looking to get pregnant!!!
So you have experience as an RE, you know the inner workings of your patients, you have basically what I call the user’s manual to that area of the body, but you REFUSE to help a woman with endometriosis simply because she does not wish to have children?!?!?!

This is the second time I have been given this line. The first time was on February 4, 2010, when the receptionist for Dr. David Adamson - also a RE - told me he does not see patients with endo unless they wanna get knocked up.

I was so triggered by the receptionist at the office of Dr. Mary Hinckley and Dr. Deborah Wachs that I nearly gave up. I felt the rage surging. But I took a deep breath, exhaled slowly, and went on down my insurance list.

I contacted the offices of reproductive endocrinology at UCSF/Mt. Zion, where I’d had my laparoscopy in 2007, and within minutes I scored an appointment with a Dr. Linda Giudice.

I decided to look her up - do a background check - to make sure she would be okay, since the receptionist let slip that Dr. Giudice works in the same office as Dr. Sharon Knight, who saw me back around 2001 and refused to do a lap on me, and whom I filed a complaint against after stage III endometriosis was found by her colleague, Dr. Marilyn Milkman, six years later.

What I found out about Dr. Giudice made me burst into tears.

According to the World Endometriosis Research Foundation, Linda Giudice was appointed vice president of their foundation in October 2006.
Their site says “Professor Giudice is a biochemist, gynaecologist, and reproductive endocrinologist who specialises in endometriosis, infertility, assisted reproduction, and ovulatory disorders. Her research includes environmental impacts on reproductive health, endometrial biology, and placental-uterine interactions.”

According to endometriosis.ca in April, 2008, Dr. Linda Giudice was appointed to the National Institutes of Health (NIH) Advisory Committee on Research on Women’s Health (ACRWH).

According to endometriosis.org in November, 2008, The American Society of Reproductive Medicine (ASRM) gave Dr. Giudice the Distinguished Researcher Award, adding that she has “devoted decades of her career to the study of endometriosis.”

More from endometriosis.org - “Professor Linda Giudice, has spent much of the last two decades studying the human endometrium, including normal and abnormal aspects of endometrial development and the relevance of that development to miscarriage, implantation disorders, foetal growth, and endometriosis.

“As a classic physican-scientist, whose long career of very productive research has advanced the field of reproductive medicine and biology, Professor Giudice is a very deserving recipient of the Distinguished Researcher Award”, said Andrew La Barbera PhD HCLD, ASRM’s Scientific Director. “She is unusual in that she does both basic and clinical research. She has made significant contributions to the understanding of signal transduction in ovarian and uterine cells”, he said, citing her three decades of productive research and her ongoing success in advancing understanding of signal transduction and communication among cells within reproductive tissues as the basis for her selection as the recipient of this prestigius award, which was designed to recognise meritorious research within the previous decade.”

She has no state or federal public actions against her as a medical practitioner.

My appointment with her is April 21. :)

Hopefully today was what my husband calls The Last Gasp - it’s when the pain and bleeding had gone away overnight, but returns with a vengeance the next day. That day was today.

The bleeding had gone away and hadn’t returned after my walk last night, even though the pain had returned a bit, and my legs were wobbly. I went to bed and slept soundly.

I woke this morning to horrible low back pain - enough to make me whimper. I got up around 8:30am and puttered around the house, doing slow stretches to try to loosen everything up.

I was dismayed to find that Chile had a 8.8 earthquake, which set off tsunami advisories and warnings throughout the Pacific region. While I was searching for live streaming info on the web about my region, as well as internet friends in Hawaii, my legs began to feel weak.

I got up off the couch and began massaging my lower back/kidneys. I did some more slow stretches. Then I needed to go to the bathroom. I had a bowel movement, which thankfully wasn’t too constipated.

I went to the kitchen and microwaved some leftover pancakes for breakfast. I poured some YoBaby apple yoghurt on top of the pancakes. I made some herbal tea from my acupuncturist, but I never got to drink it.

While I was eating the pancakes, the pain and bleeding resumed. All night and all morning, I had been dry - no bleeding, and no pelvic pain. I stood up and began doing slow large hip circles. I began breathing exercises.

The pain ramped up.

I started shoveling the food into my mouth so that I could take my medication. By the time I finished my food and was shoving a whole Tylenol 3 into my mouth, I was shaking from the pain. That’s about the time my husband woke up. I was pacing around the house and talking to him with a high pitch to my voice, teeth clenched. Within minutes, I was on my back on the couch, instructing my husband to help me with pressure points.
We couldn’t find the right points in the inner knees, so he tried my ankles, the bottom of my feet, and I held the points on my ears. The pressure seemed to help when my husband held the bottom of my feet. The points in my ears helped, too, but these didn’t help for very long. I told my husband I felt nauseous, but I needed more Tylenol 3. I took a half a pill on top of the whole pill I’d recently consumed.

The pain was so bad, but when I cried, tears didn’t come out. I went and sat on the toilet, and began moaning through gritted teeth. My eyes went vacant. At this point, I realised I’d hit a 9 on the pain scale.

I came back from the bathroom and tried to engage my husband in conversation to keep me from going mad from the pain. We talked about the tsunami warnings and other stuff. I yelped in pain pretty often, but carried on conversation so I wouldn’t go crazy. I had the heating pads on me, but I couldn’t get comfortable on the couch. I leaned over the arm of the couch with the heating pads on my lower back, until my calves felt like they were going to give out from the standing.

Finally, the drugs kicked in, and I became very tired. I settled onto the couch and my husband sat with me until I fell asleep. Then he went to work on stuff for his band, and eventually had to go to the studio to confer with the rest of the band on the tracks they’ve recorded.

I have spent the day continually drugged on Tylenol 3. The bleeding subsided again around 7pm, and so I decided to take a hot epsom salt bath. But first, I had to scrub out the tub, and I was still in pain, and my husband still wasn’t home.

This is a problem. But yet, I fought through the pain and scrubbed the damned tub, the shower doors and the shower walls, still streaked with husband’s hair dye. Once it was all clean, I was able to take a nice half-hour bath.

After the bath, the bleeding did not ramp up again, thankfully. I’m hoping today was the last of the cycle.

The pain has been really severe this cycle. Two things happened:
#1: Last Sunday night, I took a Monistat-1 treatment for a yeast infection caused by taking antibiotics for the sinus infection. By Monday morning my inner labia had swelled up really badly, and everything in that area burned. I showered and saw a doctor who examined me externally and said I’d have to ride it out. He suggested I soak in the tub. I came home that afternoon and told my husband I needed to soak in the tub, but did not have the energy to do a massive scrubbing of said tub.
Uh, apparently neither did he, and he didn’t care, because the tub did not get scrubbed. I did not ask him directly, “could you be a dear and scrub the tub for me?” - I just assumed he’d be a gent and see that I needed help and do this for me. But after nine years with this man, I should know better than that. I have to ask. Asking hurts my pride. It’s a cycle I need to break out of.

Late Monday afternoon, I began bleeding. At first I thought it was my period, but I had no cramps, and the bleeding and debris was light in flow and colour.

#2: I began taking the specially prepared tea from my acupuncturist - 1tsp up to three times a day. I saw her last Thursday, and she did treatment mainly for my sinus infection, but had also done some cupping on my lower back, which I’m convinced brought on some minor cramping Thursday night and into Friday.

Anyway, the light bleeding and debris lasted until Wednesday, when my actual period, complete with heavy bleeding, clotting and cramping started. I continued taking the tea.

I noticed that the pain this time around feels like a bladder infection. I stopped taking the tea last night and took 600mg ibuprofen on top of the Tylenol 3, and the bladder pain eased.

I resumed the tea this afternoon AFTER I had gone through a really bad spell of cramps this morning, and the bladder pain resumed. Could it be the cattail in the tea?

I cannot say for sure if it’s the tea or lingering side effects/damage from the Monistat.

I still feel gutted. I’m still getting sharp pelvic and bladder pains. I’m worried the Monistat did some damage. I’ll need to hire a new gynecologist this week, because Dr. Lisa Bernard-Pearl just retired from the practice this month, and I’ve not been able to see a new gyn, yet. I’ll just phone up anyone in that office and ask to be seen ASAP.

I keep feeling like today is Sunday. I’m so glad I have another day to recover before the work week begins again.

So far this weekend I missed a mostly sunny day today and two parties tonight because of the endometriosis.

Sour grapes - I didn’t wanna go out, anyway.

I woke Tuesday morning with no cramps! I checked to be sure my period had actually started. Well, there was bright blood, and it was within a few days of the start date, so it had to be my period, right? I got ready for work, marveling at my body. I have to admit, I had a little smile on my face. I was truly enjoying this no-pain thing.

At work Tuesday morning, I only got the slightest of cramps. As soon as I began to think, “oh no, I feel a tinge of pain, the cramps could get worse any second…” I immediately quashed that thought and replaced it with, “Oh wow, that’s SUCH a tiny pain, I am so happy I can function!” And I’d smile again. I started thinking, “This must be what it’s like to have a ‘normal’ period!”

All day Tuesday, nothing - just teeny tiny rumbles of pain every now and again. The most pain I felt was while having to rub a child’s back for naptime at work - I have to sit on the floor, and the child is on a thin nap mat on the floor. I used a pillow chair but it was still uncomfortable. So the pelvic pain did make itself known while sitting low on the floor.

You have to realise though that it wasn’t just the lack of pelvic pain through most of Tuesday - I also was not feeling the usual joint pain or the extreme fatigue that I always get with each endometriosis cycle or ‘flare’. This definitely was not starting off as one of my ‘normal’ periods. Since I have been in debilitating pain from endometriosis for about the last 24 years now, I know full well what the behaviour of my illness is. So I began to wonder if the blood wasn’t from menstruation/endometriosis at all - I wondered if it was instead from the yeast infection and having taken a Monistat treatment two nights prior, which I’d had really bad side effects to. The swelling in my labia had gone down quite a bit by Tuesday, but what if the blood meant there was internal damage from the Monistat? Every time I used the bathroom on Tuesday, I’d notice that the bleeding wasn’t getting any darker, nor was it becoming more of a flow. It was still bright red/pink, and there were long, stringy clots - also not the usual for me. Blood clots during menses for me are usually really dark red, squat and thick.

Tuesday night, when my husband got home, we went out into the pouring rain to get some groceries, so that we’d be well stocked in case I did become bedridden. While out grocery shopping, my blood sugar took a dive. I’d spent Monday and Tuesday eating and either still being hungry, or becoming hungry again within an hour of eating. That is ‘normal’ premenstrual behaviour for me, as is becoming hypoglycemic.
Eating dinner when we got home brought my blood sugar levels and thusly my mood back up again.

When I woke on Wednesday morning, I had minor cramps. Since I count the day the blood shows up as Day 1 of each menstrual cycle, I was now on Day 3, and I still was not experiencing debilitating pain. Again, I wondered if the bleeding wasn’t from the infection and/or the treatment. I wondered if I’d know if my period really did show up, and would it show up Wednesday, as originally thought?

Around 11:30am on Wednesday, the bleeding and pain began to ramp up a bit. I checked myself in the bathroom and saw that the blood had begun to darken. My legs felt funny - they were weak, especially at the top of the thighs. For me, this usually means really bad cramps are coming soon. I hadn’t had the leg pain or weakness until now, so I took this to mean that my menstrual cycle had officially hit the green light.
By 1pm when I took my lunch break, I required 600mg of Ibuprofen gel-caps, and it didn’t really help all that much. I notified the teacher I was working with that day that I was in pain and might not make it through the day. I asked if she knew what endometriosis was, and she said yes, and showed sympathy for me. She told me to sit down and take it easy. The class (I was working with the 1st and 2nd graders that day) was watching a marine life documentary, so thankfully all I had to do was sit there, or stand there as the actual case may be (sitting was too painful) for the next hour, until class was dismissed. After the first half-hour documentary, the children began to get restless, so I had them all stand up, shake their bodies, stretch way up high, and then sit back down to watch the second and last documentary on ocean life.
The stretching up high thing…I should not have done that. It spiked my cramps to a 7 on the pain scale for a few minutes. Ouch. I stretched slow, like one does in the morning when getting out of bed, yawning. But george didn’t like that.
At 3pm, I organised the children who were to be picked up by their parents and herded them out the door. After parents picked up their children, I headed to the playground to see if I’d be needed for after school daycare. Thankfully, I was not needed, and I went home.

Wednesday afternoon/evening at home, I took it easy on the couch. Around 7pm, I ate another 600mg Ibuprofen gel-caps, and slept on the couch, and for a little while I even went to the bedroom to nap. My fatigue had grown infinitely between noon and 7pm Wednesday - pain takes a lot out of a person and makes one very tired. Ibuprofen also makes one a bit tired, and I had consumed 1,200mg of it within a six hour period.

And that’s where I’ll leave it for now, cuz the next part of my story requires some background info, and this post is already too long. I’m working on making shorter journal entries from now on…

Hoo boy. I need to do a sum-up. I’ve been noting all the details of my health in another diary that I keep. It hasn’t had anything to do with endometriosis, so I’ve not been spewing it, here. However, I’m in full on pity-party mode, so I’ll share some details here. The best way to get across how I’m feeling will be in visual format (click image to make bigger):

I’ve not had a day where I’ve felt alive and well since January 22 - a full month ago.

The red dashes through calendar dates means I missed work that day.
Anything in purple text denotes multiple chemical sensitivity reaction or danger of reaction. The oil spill remains a ‘danger of reaction’ since I have not had anything immediate happen. I went to the doctor’s office on Wednesday, February 17, because when I’d tried to go back to work that morning, it felt like my lung was collapsing. The chilly morning air and the thick fog made my lungs ache badly and it became hard for me to breathe. I looked pasty white. I barely fixed my hair to go to work, I was so sick. I turned right around and came back home because my lungs hurt so bad and I was having trouble breathing. I was able to get into the doctor’s office at noon that day, and saw a different doctor. She listened to my heart and lungs. She said I have ‘junk’ in my lungs, and that I was wheezing. She gave me my first ever albuterol treatment (nebulizer delivery).
Although it cleared my lungs and made for velvety smooth breathing for the next six and a half hours, the ingredients in the albuterol treatment also made me very light headed, gave me tremors, and removed my ability to concentrate. I darted my eyes and head around and had anxiety all day long. I told the doctor I can’t work in that state, and that the treatment is no better than the illness itself. I opted to stay home another day.

When I got back home, I found Alameda County Industries vehicles all over the intersection near my home. They were shoveling a sand like material onto a spill of some sort, which was all up and down two streets and filled the intersection. I saw a garbage or recycle truck with its hazard lights on. I went over to the working men and asked if it was hydraulic fluid that had spilled. They said it was. They assured me that the sand they were putting down was harmless, and was like ‘kitty litter’.

Please google hydraulic fluid toxicity to learn more, and also check out a news story about a woman who died after a similar accident.

I have also uploaded photos here. My lips were stinging when I got back into the house last night after taking pictures. I should have worn a mask of course. Of course.

I shed all my clothes in the kitchen and put them in a garbage bag. I took a shower immediately. Thankfully I did not have any immediate chemical sensitivity reaction to the spill. Only time will tell if I will become sick from the spill.

On top of all the viruses and multiple chemical sensitivity crap, now my period is two days early after I’d declared to my husband that I was sure it would be late, since I was not feeling any premenstrual pain. Nothing - no warning cramps, no having to check myself because it ‘feels’ like I could be bleeding. No ovarian stabby. Just HELLO! an hour after I got home from the doctor’s office.

The thing is, I *did* have some premenstrual cramping last Thursday - after my acupuncture appointment. I’d seen the acupuncturist for the sinus infection, but while there, she did some lower back work on me, cuz she knew my period was coming. That night, I felt low, dull pain in the lower back and at the back of the uterus. It was barely registered on the pain scale though - just faint rustlings.
On Friday, I had some slightly more annoying rustlings, but still, I did not need medication. Then on Saturday and Sunday I had no pre-menstrual cramping at all, most likely because my body was busy dealing with a yeast infection, which I get every single time I take antibiotics.
Please don’t tell me to try eating yoghurt or probiotics when on antibiotics, I already do that. Please don’t tell me to keep hydrated when on antibiotics, I certainly do that. I still get yeast infections, every time.

I decided to get a one-day Monistat™ treatment. I did that Sunday night right before bed.

I woke in the early hours Monday morning to use the bathroom. I wiped and … something wasn’t right.
My inner labia were hanging way down past my outer labia, and they were thick; puffed out, and stiff as boards. My heart jumped. WTF is going on!?!?
I wiped again, and the labia let me know they weren’t happy. It stung - it burned. I could feel my pulse in my labia.

I phoned up my family doctor and my gynecologist and left messages. I decided to not outright openly panic, so I got ready for work. It hurt to wear slacks, or tights, or even underwear for that matter. It hurt to sit down of course.

I went to work anyway. The doctors offices called back - the gynecologist wholly misunderstood my voicemail and told me I should try Monistat or Diflucan for my yeast infection. The family doctor got me an appointment after work.

By the time I got out of work, the swelling in my labia had gone down considerably, but it still hurt and pulsed with discomfort, so I went to the doctor. He did an external exam - not a pelvic - to examine the labia. There’s nothing he can do - just have to wait for the swelling to go down. I told him I discontinued use of the antibiotics. He said that was fine.

I got home from the doctor, and before dinnertime, discovered that my period had arrived without warning.

So now that george is here, I will go to bed and see what tomorrow brings - will I be able to go to work, or will the pain leave me bedridden?

Stay tuned…

Wow, déjà vu.

Just like last month, I went from being bedridden with endometriosis to being sick with a virus.

Once again, I’m kicked when I’m down, thanks to my immune system being deficient, thanks to endometriosis and allergies and lord knows what else I have going on immunologically.

Friday night I was at a taqueria eating dinner with my husband when suddenly I didn’t feel well.
That night, I had 3 episodes of diarrhea. I was uncertain whether it was a food reaction or food poisoning.

On Saturday, I had 17 episodes of diarrhea. I was more certain that it had to be food poisoning, since I’ve never had an allergic reaction this bad before. I barely ate a thing that day, and it was a struggle to even take water.
My entire trunk region was sore. I felt like I’d been doing too many situps - the stomach muscles were strained.
My husband took me to the store, and I am not kidding - I bought baby wipes and diaper rash cream for myself.

On Sunday, I began eating Cream of Rice with mashed banana. However, Sunday evening, we were at a friend’s house and he’d made some wonderful food, as did his other guests. I partook of a thin slice of steak, some kielbasa and onions, and some cole slaw. I drank a Vernors soda, even though it has corn syrup in it, because where I grew up, Vernors is what you drank to soothe an upset tummy.
Within an hour and a half, I had moderate to severe stabbing stomach cramps. I had to steel myself from the pain. When we got home at 9pm Sunday night, the diarrhea began - 8 episodes of it.

Today is the second day in a row that I did not have diarrhea upon waking. Today is the second day in a row that my stomach and intestines tried to stabilise - until I fed myself something other than Cream of Rice with mashed banana. This afternoon it resulted in moderate nausea and stomach and intestinal gurgles. I’m worn out. I’m tired as hell. And I worked a full day today on top of it.

I didn’t want to go in to work today, but I was still partially in denial about actually being SICK sick…even though on my way to work, I called to cancel my appointment with a physical trainer. To be fair, I took my temperature at work and it was 99.8°F at 11am. I hinted that I should go home, but the director told me I was fine. The secretary told me I was fine.
What they meant was, “Lunch rush is coming up in the next half hour, and we’re short staffed. You have to stay, we need you.”

I did stay on, but that’s when I called my doctor and scored an appointment after work. The doctor told me that it’s not JUST a food reaction I’ve been having, and it DEFINITELY WASN’T food poisoning.
The doctor is certain that I have an enterovirus. She said it’s going around - she’s seen patients with my exact symptoms for over a week, now.

I know that what’s going on with me IS also a food reaction on top of the enterovirus, because my left thumb is covered in flaky dermatitis, and my thumb is cracked and will probably start bleeding tomorrow.

According to MedScape, I was harbouring the enterovirus for up to a week before the diarrhea hit me on Friday. It says, “The average incubation period is 3-10 days, during which the virus migrates to regional lymphoid tissue and replicates. Minor viremia results, which is associated with the onset of symptoms and viral spread to the reticuloendothelial system (spleen, liver, bone marrow).”

Another MedScape article says, “The enterovirus enters the human host through the GI or respiratory tract. The cell surfaces of the GI tract serve as viral receptors, and initial replication begins in the local lymphatic GI tissue. The virus seeds into the bloodstream, causing a minor viremia on the third day of infection. The virus then invades organ systems, causing a second viremic episode on days 3-7. This second viremic episode is consistent with the biphasic prodromal illness. The infection can progress to CNS involvement during the major viremic phase or at a later time. Antibody production in response to enteroviral infections occurs within the first 7-10 days.”

I could have caught it at my neighbor’s house when we went over there last Tuesday to watch the season premier of the last season of LOST.
I could have caught it from my new psychiatrist’s office on my first visit.
I could have caught it at work.
I could have caught it anywhere.

The bum deal out of all of this is that I went from being bedridden with endometriosis pain right into being laid out flat with massive diarrhea for three days. I lost two weekends of fun out of that deal. I didn’t get to see an old high school acquaintance who was in town for the weekend. Worst of all, I went out on Sunday to a party while still sick with the virus, because I was convinced it was food poisoning and/or food reaction I was still dealing with, and now I may have infected other people.

When I left out of the doctor’s office, it was raining, and I hadn’t brought my raincoat with me. I walked in the rain back to my car, parked a block and a half away. When I got home, I took a blow dryer to my hair, put some dishes in the new dishwasher my husband recently bought, scooped the cat litter, and got into my jammies and crawled into bed. I crawled out of bed to eat some yoghurt while my husband ate dinner - we sat on the couch and watched TV. Well actually I laid on the couch wrapped in blankets. Viruses make me feel like I’m freezing. The house is 71°F right now…

I’ll be staying home tomorrow - I made sure to get a doctor’s note the moment the doctor suggested I stay home. I called work the moment I left the doctor’s office to let everyone know I won’t be in.

Stupid immune system.

I guess if one can find a silver lining… I lost 6 pounds in 3 days. I’m down to 158lbs.

Back on January 21, I saw Dr. Streitfeld, who referred me to Dr. David Adamson, who is a reproductive endocrinologist.
I’ve been leaving messages for his office and for a regular endocrinologist named Dr. Grace Eng, who I tried to see in 2009 but for some reason never got to.

Anyway, today I finally got a live person on the phone at Dr. Adamson’s office, and within seconds my heart was broken, my hopes dashed.

“I’m so sorry, but Dr. Adamson is no longer seeing patients with endometriosis - he only sees patients with endometriosis who are trying to have children.”

I was shocked. I thought some sort of cruel joke was being played on me. I could hardly believe what I’d heard was real. I thought, he’s no longer giving endometriosis patients the time of day UNLESS they want babies?!?!?! What the hell kind of slap in the face is that?!

I kept my voice even and as sweet as the secretary’s voice. I asked if there are any other doctors that Dr. Adamson is referring endo patients to.
I was told he refers patients to Dr. Andrew Cook.
Well thankfully, Dr. Cook is on my short list, so I called his office, next.

I was all set to schedule a new patient visit, when the secretary gave me the lowdown:

They don’t DO insurance - they want prompt payment from my bank account or credit card. But they are happy to submit a claim to Aetna insurance company on my behalf for the rest of the money to maybe be returned to me. From their website, “We believe in health maintenance rather than just control of disease. This type of care is not accommodated in the billing contracts of insurance companies that require a rushed schedule. For this reason, Vital Health does not contract with insurance companies. Vital Health Institute specializes in excellence!”
The first visit is a $200 consultation fee, and if my insurance deductible has not been met, then it will be an additional $395 for the office visit. That’s a total of $595 out of pocket for a single office visit. Then there’s the idea of surgery with this guy, also out of pocket. My first laparoscopy was $19,000 and was covered in large part by Blue Shield, our old insurance plan. My out of pocket cost on that was $1,500.

I told the secretary I’d have to talk it over with my husband and give her a call back.

When I got home, I also remembered that Dr. Streitfeld had said he thinks I could have adenomyosis, which could be detected on a MRI or a PET scan. If I want to skirt around seeing Dr. Cook in the short term, perhaps my current GYN can just send me for a MRI or a PET scan…so I logged into Aetna’s website and looked up the pricing. I did not see PET scans being offered, but MRI is. For in-network, a MRI will cost $1,772. Of that, I am unsure how much my co-pay will be. I had a echocardiogram in 2009, which cost over $4,000. There were two or three insurance adjustments made, and I ended up paying around $470, which is still a lot of money, and took me a year to pay off, because I only make $11/hr and my husband doesn’t like shelling out his own money, even after he assures me he will (but that’s a whole other can of worms).

I sulked.

Here I am, trying to do the best thing for my health; I am trying out alternative therapies, which are costly and out of pocket. I am trying to find a new gynecological surgeon so I can get surgery number two after the first one three years ago never gave me any pain relief, and now I find out that the type of surgery I am interested in (excision vs. cauterisation) is also going to be an out of pocket experience.

On top of that, I have been at my recent job for 10 months with only partial training for the job. This keeps me at assistant status, which keeps my pay low. I need to shell out $1,700 for classes THIS SUMMER, which will bump me up to head teacher, which will increase my salary.

The dilemma is this: stay on the job and take the courses, but continue to miss work each month due to the pain, OR start seeing Dr. Cook, save every penny I can, and get surgery number two, which will require me to take weeks off work to recover from the surgery. When I get back to work, I’ll be playing financial catchup for a year or more.

I even mentioned my financial frustration to my husband in chat when I got home from work.

Me: i’m beginning to feel the reality - i can EITHER start on a new path with a new surgeon and get that second surgery in hopes of long term pain relief, OR i can go to montessori teacher training.
Husband: at least for now?
Me: right
Me: this year
Me: those are my choices
Husband: well, there is the lottery…:/

This exchange left me feeling not only frustrated, but mad.

Before you even think to ask me about credit cards, yes, I have two, and they are already maxed out since our honeymoon in May, 2009, and my having to live off of them since that time because my husband doesn’t like to spend his money to support me. Even though he says he’s fine with it, the money is not there whenever I need it. I had an acupuncture appointment last week, and forgot about it til the last minute. I asked my husband for financial assistance ($50) the night before the appointment, and he got real upset with me. He grudgingly wrote out the check.
On Friday, I asked my husband if it would be possible for him to withdraw up to $100 in cash on Saturday so we could look at what the dispensaries had to offer me in the way of alternative medication. He said yes, and seemed to not have a problem with this. He patted himself on the shoulder that day for supporting Prop 215 “by putting my money where my mouth is”. We got inside the dispensary and I priced out a few items. I wanted to try the butter, the mocha mix and a tincture. The cost would come to just under $60.

My husband told me I could EITHER get the butter OR the tincture. His face went grey with how expensive each was (about $22 and $36 respectively).

So for a man “putting his money where his mouth is”, he withdrew $100 for me to get what I wanted to treat my pain, and then only permitted me to use $28 of it.

This is a man who makes $65,000 MORE than me each year, and he’s suggesting I try the lottery to cover basic needs of raising my income via schooling, and surgery to alleviate or minimise chronic pain.

We have a joint bank account. It has been empty since the honeymoon.

We’ve had several talks - or rather the same talk over and over. Nothing is changing.

He pays all of the rent on our apartment, and he often helps pay for my expensive groceries (see my list of allergies and whatnot). He has taken over the long distance phone bill and the land line bill.

I pay for my cell phone, my auto insurance, some groceries, my two credit card balances, the DSL connection, our renter’s insurance and earthquake insurance. That alone takes up most of my paycheck every two weeks.

My husband is on his way to band practice right now, and I will be asleep when he gets home, so I emailed him, requesting that we have yet another financial talk. If I could only get official confirmation that he will not support me financially, instead of this wishy washy bullshit, then I can formulate a plan to care for myself.

If I am on my own financially, I think it’s best that I just go back to pretending that this is what all women go through every month, and stop trying to treat something which ultimately probably can’t be treated, anyway. I won’t die from my condition. No matter what I’ve tried in the last 23 years, nothing has worked anyway, so why bother to continue trying to fight it. I don’t have anyone but myself to help me financially and emotionally, anyway. Same as it ever was.