Day 3. But I had symptoms since:

Day 3
But I had symptoms since: 



Part way through my first menstruation cycle is when the pain really started to hit me. I was 14 in fact my birthday had just passed and I was feeling weird but didn’t think about it, I went to sit on the toilet and saw blood oozing into the bowl from between my legs. I burst into tears, as far as I was concerned that blood meant the beginning of the end when it came to being pain free, to do what I want when I wanted, the end of being able to wear what I wanted, the end of having good attendance at school or anything. Sure I didn’t know these things to be true in my case…. Well I didn’t know YET. But my mom had been very honest about how her period affected her life (she was diagnosed with endometriosis also) so I had reason to be scared. Sure there was no guarantee that it would mean I would have the same issues as her, but her mother had terrible periods that would leave her crippled in pain and unable to move, and so did her mother (so my mom, grandma, and great-grandma) all sounded like they suffered from endometriosis.

After I stopped crying and was able to tell my mom why I was crying in the bathroom I was able to find the amusing side of it all. We had recently moved to a very “white” town, that was really rather wealthy, or everyone I went to school with was, so while I was crying about the arrival of my menses, I knew other girls in my class were celebrating the arrival of threes, bragging about it and so on. For me it was my dirty secret, as none of the girls understood, I simply had to be making it up, as THEY didn’t lose control of their legs while on their period, or throw up…… As boys had nothing to compare it to I most often found them the most understanding so tried to stick with more guy then girlfriends.

Photograph credit: "Cubicle 5" by AbsentAsI on deviantart.com

weekend to end women's Cancers

I think I am going to register to raise money and if I raise at least the minimum I will be able to take part in the walk that will happen September 11th 2011 in Toronto, now I just have to finish my registration and try to raise lots of money.
For me I think it would be great to raise enough money that I can take part in the walk (the walk is 60km if you sign up for 2days, or 32 for one day and I am thinking 32km would be pushing it, so that’s the one I am signing up for) but even if I just manage to raise money to help I think that will be enough to make me happy.

From the website:
"All of this is made possible because of people just like you! Be a part of our celebration on September 10-11, 2011 and customize the best Weekend experience for you. Choose to enjoy the full 2-Day, 60km distance for maximum impact, or try the 1-Day 32km distance. You can also designate your fundraising dollars to go specifically to breast cancer or gynecologic cancers. Whichever experience you choose, make YOUR Weekend matter!"

To be able to take part in the walk I will have to raise $1250, so once I have all the paperwork done and am able to start collecting the money I will be sharing the website they will give me to help me share and fundraise for a really good cause.

As someone with endometriosis me and all my endo sisters are at an increased chance of having many of the women’s cancers (largely in part since we can’t always have children and those who never have a child are often at a greater risk).

Then there is the reality that not only do many of these cancers affect so many people but have affected people very near and dear to me so I would like to walk in a way for them (both those who are still here thankfully, and those who we have all lost).

Just thought I would share all that.

And in other news, I still have the Mirena in and it is still seeming to get better and better as time goes on, though I think I am on my “period” now (key word that makes me happy in that sentence was think haha) I am having some more cramping then my normal day to day and am also spotting, and with an IC flair happening it seems to be making sense.

Though as a reminder to those who know me and my family the fact I have the Mirena IUD is still hush hush please and thank you. In time I will share it with everyone who might want to know, but I am betting that will be closer to the 6-8month mark and right now I am almost at the 4month mark so it will take yet. They key is I don’t want to share until it has done crazy wonders for me and although it has already helped greatly it hasn’t made my day to day pain disappear and I am hoping it will in part and once it does I can brag I am on it for it will my little miracle piece of plastic in my uterus haha.

Some of my Endometriosis Coping Essentials

1) One of the things I have used for the longest amount of time that I find very helpful since my periods have never like clockwork even while medically regulated.
a website : www.mymonthlycycles.com
I have used it for years so I can check when my last period was and also how long I was bleeding for and also how heavy I was bleeding and I can also add notes, all those features can be used with a free account and there is no time limit on using the site, though last week I did sign up for a 6month paid account since the features paying for look worth it to at least try out (will let people how I think it is later)



2) Rice bag heating pads, anyone who has endo knows of these unless they haven’t had their period very long at all. They can be bought in crafty type stores, online, through a pharmacy or you can even make them. They can get allot hotter than any water bottle and can hold heat longer and can be used often once after the other (though this will destroy them quicker but if you do destroy them you can always open them up, fill them again with some rice from your pantry, or cherry pits .... lots of options and sew it back up. I have made many and bought many, they come in all different shapes and materials.



3) Cloth pads, I started out with these when I was 19 I believe since wearing the disposable plastic ones just seemed to annoy me so much. For people who have a 2-3day period disposables wouldn’t seem as bad but for someone with a really heavy period to the point one must wear a pad when possibly it could arrive otherwise bleed through clothing on the way to the bathroom, and then when I was younger the normal 9 days of bleeding that was allot of time with pads on, and allot of garbage. It was generally about 14days of wearing pads give or take. So I started out making some and wearing them now and then and disposables now and then also. Now I generally buy my pads and they are amazing quality that way and last for a long time (haven’t worn one out yet). With care it is possible to even have unstained ones thanks to something else on my list. Cloth pads also fold up small and wet bags can be bought to store them in. They are very comfortable and can be bought/made to fit your needs or wants.
I have bought mine from:
www.lolasloft.etsy.com/ (just bought from, haven’t yet seen or used her pads)
www.NaturallyHip.etsy.com/ (bought from before, larger really indestructible pads)
www.crea8tivemama.etsy.com/ (bought from before, small pads)

Folded:


Wings Snaped so instead of sticky wings these secure the pad to panties these hold it in place:


4) For all of my cleaning bloodstain needs, come on girls you know this happens Oxyclean powder does the trick! Now that I use cloth pads I actually have fewer leaks because I have pads the size I need so my normal clothes need less stain removing however now I have those pads to clean. For stain free items you can get bloodstains wet hopefully before they dry and then wash in the machine with some Oxyclean and no worries about washing them with other items as long as they are not white. This also works for bedding or loungewear or bed pad (I just use a huge towel double folded under me when I sleep. The fact though is Oxyclean can very often remove old dried bloodstains even in pads. Simply soak item in water for a few minutes before washing with Oxyclean. For those fearing cloth pads means ugly bloodstained pads, this is not the case. When I was soaking pads after use until washing I went over a year and a half without any stains and my pads were lighter and multicoloured. I always buy my oxyclean at costco since its the very best deal and in powder foarm since it works and is so much cheaper.



5) Disposable heat pads that are activated by air (will say on package) and NOT the ones they sell/show on lower pelvic area designed for period pain since I have always found them to be way too small. I like the ones that stick on that are for backs (however the one I will show a picture of have changed their back stickers to wraps). The wrap is nice if you plan on changing clothing often, but the stickers I generally stick to my skin or to a pain of yoga pants I am wearing. I simply use the back heat pads on my front, and although I don’t use these often I do use them when I have to me out and about while either on period or know period is coming from the pain. They help and get nice and hot and very discreet. Though I did learn this weekend that trying to save money by buying a lower name brand is not necessarily worth the savings.



will add more later but need out in the garden at the moment since pain meds finaly kicked in!

what are your endometriosis coping essentials?

Bladder, fuck off!

So this is day 3 my bladder is being a prick.

It would be really nice not to have to pee every 2-10minutes. That would be really nice.

Though i should be glas i dont have to pee that often and also have intence pain every time i pee like i had earlyer today for a couple hours.

Certainly does make going out sorta tricky, or at least dressing normal.

Scratch that, it still hurts to pee just not as bad. I am also in alot of endo pain right now to, so on max demerol. fun wow... not.

Yesterday i took more then perscribed demerol and was still crying from the pain (reolised later last night when i looked at the times i took them). Life can be a bitch sometimes!

The plan is to try to get out of the house before scott gets home so he can have some alone time that he seems to need these days. This mentod works best i think since i dont see him walk in the door and then have him take off as though he doesnt want to be around me, if i am not there when he gets home it cant really bug me. Even when i do get back in and he is still off on his own its jusy as though he isnt home yet, and not that he is avoiding me.

Christmas might still be okay!

Aright,

I have personal "good news" and bad news haha.

Good news is now that I did the math today it appears that although I will have my period on Christmas it should show up days before Christmas eve day (our Christmas with Scott’s family) and Christmas and boxing day (our time with my family).

This math only could be figured out today though, seeing as my period came early.

Today it came. Although my cycle is longer than most women now, and much longer than my natural cycle, it wasn’t as long this time as it generally is while on my experimental drug. That drug is Centchroman, and since I am now stuck on my back today I should post about it. Anyways though my point is my cycle on that drug is generally 33 days. Today marked only 30 though. This is still a great improvement over my natural cycle of 24-26days and an impressive jump from what my cycle was only a 4years ago of 16-19 days.

So, yay I won’t necessarily feel like crap on Christmas :)

not coping well today + i know my own body

I am not coping well today. Either pain is overthrowing the pain meds, or the pain meds are overthrowing me it would seem. Couldn’t there be balance, you know where the pain meds took away pain, but didn’t make me a stumbling bumbling idiot who can’t even get herself something to eat OR stop scratching. (Yes, for some reason the Demerol seems to be making me itchy today, for the first time ever. Though this is not the first time this has happened with pain meds, Percocet used to always cause this issue to the extend I would scratch till my arms or legs were bleeding)

I am also frustrated because I feel gross and I want to shower, but I am not sure if I am sturdy enough to stand in the shower. I could have a bath, but baths don’t necessarily leave me feeling clean unless I can shower off afterwards. And considering how things are today, I would only want a bath if I could easily use a shower hose to wash out the tub afterwards... however as amazing as our tub is, there is now shower connected to it. So that’s out.

Ugh. I get frustrated at these times.
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Well as it turns out I do know my body.

Though with the use of the one medication (that in I think my last post I said my body seemed to be fighting) my period should have been due on Sunday the 20th or Monday the 21st.

Yesterday however, my pain was mounting. Then my period started and the pain spiked really quickly. By the time my period had truly started I was already on max Demerol on top of my daily Tramadol. It wasn’t enough though; there was a solid hour I was withering in pain on the couch balling my eyes out in way to much pain. The pain was shooting down into my legs. (It is because one of the nerves in your abdomen, is connected/roots into your thy) So anyways I was very unhappy last night, the pain calmed down slightly so I could watch a movie with Scott without distracting him with my cries to too often.

Bedtime came and some meds were starting to wear off so pain was starting to come back. On the flip side more meds would have meant I wouldn’t likely be able to sleep due to the meds, and if I did sleep on the meds it would be a waste of meds in a way. I can often sleep even if I am in a great deal of pain, so if I can I try to. Sleeping is how I can sometimes avoid taking pain medication.

The issue was it was a huge balancing act, I had to be asleep before the pain got too strong and yet the pain was already interfering with my being able to fall asleep. I managed to get to sleep likely after about an hour of laying there with my heat pad on my abdomen, cuddling with Scott and breathing to try to calm down. Though last night I will admit I did cry myself to sleep due to the pain.

I also woke up very frequently to pain and was sleeping lightly I know since Scott rolling over in bed was enough to wake me up many times, and then I would once again notice all the pain and have issues getting back to sleep. When morning came with the sound of Scott’s alarm I was afraid to ask him how he slept. Often when I sleep this poorly due to pain, he does also because he wakes to my whimpers or crying (either in my sleep or awake) and my fussing to get comfortable (an impossible task). This is way when I know I can’t sleep, or figure I won’t sleep well I at times will just stay up on my computer or watch TV and let him go to bed so at least one of us get a good night’s sleep.

I do have happy thoughts about when we have the spare room set up though. I need the holding and cuddling when I am feeling poorly, but then Scott falls asleep and rolls over, so that often when I get up and go downstairs if I am too fussy to sleep as not to disturb his sleep. However if we had the spare room set up those nights that I am exhausted and think I can get to sleep, but unable to sleep soundly/let him get rest I could simply go sleep in the spare room. I find I can’t sleep on the couch so I never really do.

Turned out this morning that Scott had slept rather well considering, morning came too early but it always does. I hope he actually did sleep well and he wasn’t just saying that so I wouldn’t feel so guilty

another teary day

My pain is not only destroying me. It has been crapping all over my life for a while now, but now it is crapping on the only thing good in my life.

I don’t know how to make it not ruin anything more, other than stop being in pain, and stop being on pain meds. The problem there is I have tried lots to not be in pain, and the other options are terrifying to me. The other issue is even if they do work; their side effects would likely make me loose Scott.

Since as depressed as I am now, I know it is nothing compared to what happens when my hormones are messed with. No one wants to be around me then, not even my own parents. I turn into a suicidal monster of a person.

On the other hand going as I am is ruining things also. I can’t think about the future, I do when I am day dreaming, but in it I am always healthy again. When will that future happen? Scott can no longer see the future either, my pain is eating him.

I love Scott so much, yet the pain I have is not only ruining things for me anymore but for us.
My next pain management appointment is in a couple weeks I believe. In a perfect world I could walk in and tell him the pain is still crippling me and ruining my life and that we need to do something about it so I can function like a “normal” person. The reality is I will go and he will refill my prescriptions if I am lucky, (he I believe will refill my Tramadol, but unsure about Demerol since it is my old family doc who would normally prescribe it).

I need less pain. Less pain would make it so I could do more, help around the house more, get a job, and be a better person. Less pain would mean I would be less depressed. Less pain would likely mean I wouldn’t fear the things I am, the things that if pain stays it sounds like will happen.

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I am laying here on max Demerol still in allot of pain (max Demerol on top of Tramadol) with a heating pad on my lap. I think if it gets worse later today I will taxi it to the local hospital perhaps they can give me a few hours without pain, and a few solid minutes of sleep. This will give me a break, but depending when I go it might also give Scott a break.

I barley slept last night even though I was beyond exhausted, took me over an hour and a half to fall asleep. Then I woke up loads of times because of pain, once at 8am (were on afternoons so that is the middle of the night for us) to the point I was crying from the pain, but was in too much pain to move or do anything about it, and Scott looked asleep so I couldn’t bug him. Somehow I fell back asleep till 12, at that point I hobbled down the stairs and took a Demerol and as it kicked in I fell back asleep for a few minutes then woke up again from another pain surge. This time the alarm was going and Scott was not in bed. Turns out he barley slept at all last night either because of my pain and whimpering and moving around. Tonight if pain as bad, I told him I would sleep on the couch, so he can get some decent sleep. He needs his sleep seeing as he works hard all week, and hard around here. Then he looks after me, I am worse in neediness then a child and he has always said he didn’t want a child (he did not say those things together, I am the one making those parallels).

Not going to lie, moments like this the thought of cutting out my inners is welcomed while they cause me this much pain, I often joke about it. The reality of that idea is far different when I am not on so much Demerol and still unable to move.