I wish I wasn’t on the verge of an anxiety attack at the thought of going to Toronto to see my pain management doctor all because my period is likely going to show either the day of the appointment or the day I am trying to bus back home.
Its really sad in my eyes that the anxiety is cause I know where ever I am when my period shows up I am trapped for the next 18hours since I can often not walk, lift things anything really and often in too much pain to communicate, what bugs me more is this is all to go to a PAIN MANAGMENT appointment, yet this issue lies with the fact they fail at managing my pain (on a day to day it’s okay done but not at my worst pain points at all) Another doctor has had to pick up the slack (Thankfully another doctor who understands endo, but because he is a god in the pain management world, people can often only see him 5times total and the next available appointment that I booked almost a month ago is in late January)
So I might have to postpone my f-ing appointment with the doctors I dislike simply because I can’t go see them from pain and then will be even more scrutinised when I do see them after period for the fact that I put off appointment (they will ignore the fact I couldn’t walk as they have before) and then you get rewarded with my joyous monthly urine test (a new perk of seeing the doc in the last 4months) I will get hell likely for the higher concentrations of items in my urine even though what else was I supposed to do? Or if it goes as it has the last few times (when I show up a week before period so no high concentrations) am told there is no sign of my pain meds in my system so the logical explanation for that is that I am selling my medication. Oh how I love going to a doctor that doesn’t take my pain issues as real and either makes me feel like I am a druggie, or a drug dealer. Fucking fantastic.
oh and another thing is 2months ago back really started bugging me then a month ago worse, then I was in my friend’s car when she was rear ended (do you see where this is going?) so my back really fussy/painful now. The doc gave me muscle relaxants that I tried before last period and found completely useless (tried one 2nights in a row) so I plan on bringing them to him next time I see him for him to dispose, since he seems to think I am selling everything.
Sunday, November 21, 2010
Thursday, May 13, 2010
Didn't expect a Support Group to be so Great
I often mention how fantastic it is that I live in a time where I can find other women from all over the continent and even world who understand what life is like with endometriosis or with chronic pain with the use of the internet. I have found this extremely helpful for years and even more so since my endometriosis has kicked up a fuss and taken over most all parts of my life. Tonight however I learned something, as great as talking to someone online is it does not compare at all to sitting in a room filled with other woman who simply “get it”. There is absolutely no comparison.
When my dear friend Jackie mentioned to me about a support group in Toronto for endometriosis I basically shrugged it off at the start since I couldn’t see myself actually opening up or enjoying a support group. Then Jackie pushed the idea harder on me and that first month I was considering it I was not able to travel out to Toronto in order to be there Thursday night since I had myself on the books to be doing reception at the resource center the next morning. This month however I made it so I could attend the group and it was so very worth it.
When I get back in town I hope to talk to the person who I “work” for on Friday afternoons every week to arrange either changing the day I volunteer each week or for the 2nd week of every month in order to be able to continue going to the support group meetings because tonight was such a breath of fresh air and some venting about certain doctors in our lives.
I unlike a fair number of people with endometriosis or even chronic pain had someone who understands since day one right in my life and in my home. My mother started pushing the doctors to get answers as the 2nd period of my life crippled me and left me lying on the floor in the bathroom in tears at the age of 14. For years she would tell me she thought I had endometriosis and I told her I thought it was only bad periods, since I didn’t want to have something “wrong” with me or be “sick”. As time went on my periods got worse and worse to the point they scared me, and it scared my mother to so without answers we tried treatments. She had endometriosis as a young woman and continued to have issues with the horrible pain until I was 3years old and she at that time had an ooferectomy. Growing up she understood the pain and also knew enough about what treatments would be in my future. In fact because of this I had tried 5 different birth control pills and Depo-Provera before I had even been diagnosed, in fact I had been on 4 of those birth control pills before I became sexually active. She was right there with me when I was in too much pain to be able to stand let alone walk, or when I was in the hospital for 24hours hooked up to IV and getting morphine hourly along with ultrasounds with them trying to figure out what was “wrong”. The only issue with having someone who has had endometriosis being so close in your life is if they had one specific thing that helped, they tend to look at that thing as the holy grail even if it has no guarantee and is not reversible (like an ooferectomy).
The pushing me to have an ooferectomy since the age of 18 aside, having a mother or anyone actually to be your stand by is very helpful. She still is with me for most all doctor appointments for a few reasons,
1) I can’t drive so for some of them it’s simply because she can give me a ride or even if I could get to the place by transit there are times where I am in too much pain to get places without being dropped off right at the door.
2) She is a second set of eyes and ears and often brain to remember what the doctor’s say, do and also to come up with questions to ask them.
3) When doctors tell me it’s in my head or there’s nothing wrong, I can’t often be as strong as I would like to and can end up balling while she can be strong and push for the right tests. She can be overly pushy for tests at times to but that is just something I have to accept with everything else she is willing to offer.
Having a family member I can talk to about this is helpful, as I said I always found random strangers over the internet to often be more helpful to talk to though since there was less judgment or at least if there was judgement it didn’t affect me. As helpful as talking to internet friends though however I now know it does not compare in the slightest to sitting with a bunch of other women who have done the same treatments, had the same pain, been told the same things and just get it. Seeing the connections and differences between our symptoms was interesting and also informative and from the whole thing I got the name of some doctors I might try to get referred to.
I would love to thank Jackie for pushing me to go to this support group in Toronto. The person who runs the support group and all the women who attended were amazing and thank you for having this group and for having me. For those who might read this and are within traveling distance to Toronto its worth going to this support group. Meetings are the second Thursday of almost every month in a building that woman’s college hospital owns.
T.E.N.T. or The Endometriosis Network of Toronto has a face book group and must likely also have info online on the website for woman’s college (since I am guessing that’s where Jackie found info about it) if one were to Google the name.
When my dear friend Jackie mentioned to me about a support group in Toronto for endometriosis I basically shrugged it off at the start since I couldn’t see myself actually opening up or enjoying a support group. Then Jackie pushed the idea harder on me and that first month I was considering it I was not able to travel out to Toronto in order to be there Thursday night since I had myself on the books to be doing reception at the resource center the next morning. This month however I made it so I could attend the group and it was so very worth it.
When I get back in town I hope to talk to the person who I “work” for on Friday afternoons every week to arrange either changing the day I volunteer each week or for the 2nd week of every month in order to be able to continue going to the support group meetings because tonight was such a breath of fresh air and some venting about certain doctors in our lives.
I unlike a fair number of people with endometriosis or even chronic pain had someone who understands since day one right in my life and in my home. My mother started pushing the doctors to get answers as the 2nd period of my life crippled me and left me lying on the floor in the bathroom in tears at the age of 14. For years she would tell me she thought I had endometriosis and I told her I thought it was only bad periods, since I didn’t want to have something “wrong” with me or be “sick”. As time went on my periods got worse and worse to the point they scared me, and it scared my mother to so without answers we tried treatments. She had endometriosis as a young woman and continued to have issues with the horrible pain until I was 3years old and she at that time had an ooferectomy. Growing up she understood the pain and also knew enough about what treatments would be in my future. In fact because of this I had tried 5 different birth control pills and Depo-Provera before I had even been diagnosed, in fact I had been on 4 of those birth control pills before I became sexually active. She was right there with me when I was in too much pain to be able to stand let alone walk, or when I was in the hospital for 24hours hooked up to IV and getting morphine hourly along with ultrasounds with them trying to figure out what was “wrong”. The only issue with having someone who has had endometriosis being so close in your life is if they had one specific thing that helped, they tend to look at that thing as the holy grail even if it has no guarantee and is not reversible (like an ooferectomy).
The pushing me to have an ooferectomy since the age of 18 aside, having a mother or anyone actually to be your stand by is very helpful. She still is with me for most all doctor appointments for a few reasons,
1) I can’t drive so for some of them it’s simply because she can give me a ride or even if I could get to the place by transit there are times where I am in too much pain to get places without being dropped off right at the door.
2) She is a second set of eyes and ears and often brain to remember what the doctor’s say, do and also to come up with questions to ask them.
3) When doctors tell me it’s in my head or there’s nothing wrong, I can’t often be as strong as I would like to and can end up balling while she can be strong and push for the right tests. She can be overly pushy for tests at times to but that is just something I have to accept with everything else she is willing to offer.
Having a family member I can talk to about this is helpful, as I said I always found random strangers over the internet to often be more helpful to talk to though since there was less judgment or at least if there was judgement it didn’t affect me. As helpful as talking to internet friends though however I now know it does not compare in the slightest to sitting with a bunch of other women who have done the same treatments, had the same pain, been told the same things and just get it. Seeing the connections and differences between our symptoms was interesting and also informative and from the whole thing I got the name of some doctors I might try to get referred to.
I would love to thank Jackie for pushing me to go to this support group in Toronto. The person who runs the support group and all the women who attended were amazing and thank you for having this group and for having me. For those who might read this and are within traveling distance to Toronto its worth going to this support group. Meetings are the second Thursday of almost every month in a building that woman’s college hospital owns.
T.E.N.T. or The Endometriosis Network of Toronto has a face book group and must likely also have info online on the website for woman’s college (since I am guessing that’s where Jackie found info about it) if one were to Google the name.
Thursday, April 22, 2010
Lets do the Math
33-(10+5)= 18
So for the last year i have been on a drug i found out about online, thats not FDA aproved but is used as birthcontrol in India. I personaly dont trust it to keep me from being a mommy but i was on it for its side effect of a longer cycle.
Before i started the medication i has a 22-25 day cycle and in that cycle there was one week to ten days of pre-period pain and crazy pms, then there was 5-9days of heavy bleeding. However after i started this medication i think even my first cycle my cycle jumped to 30-33days, and after time my bleeding days shrunk to 3-5days.
Well, now the one doctor that my mom thinks might be able to do some problem solving for us (and my very cpmplicated case) says he wont touch my case and nore would any other doctor at least not while i on this medication.
For this reason i must get off the medication and go from a longer cycle that i always knew when to expect almost to a shorter cycle with more days bleeding and no idea when my period will come.
For your info the medication i was on is named Centchroman.
So for the last year i have been on a drug i found out about online, thats not FDA aproved but is used as birthcontrol in India. I personaly dont trust it to keep me from being a mommy but i was on it for its side effect of a longer cycle.
Before i started the medication i has a 22-25 day cycle and in that cycle there was one week to ten days of pre-period pain and crazy pms, then there was 5-9days of heavy bleeding. However after i started this medication i think even my first cycle my cycle jumped to 30-33days, and after time my bleeding days shrunk to 3-5days.
Well, now the one doctor that my mom thinks might be able to do some problem solving for us (and my very cpmplicated case) says he wont touch my case and nore would any other doctor at least not while i on this medication.
For this reason i must get off the medication and go from a longer cycle that i always knew when to expect almost to a shorter cycle with more days bleeding and no idea when my period will come.
For your info the medication i was on is named Centchroman.
Tuesday, April 20, 2010
Waiting
I am Waiting for my period at the moment
- My Chest is so tender that the weight of a hoody is painfull if i move the wrong way.
- My abdomen is so swollen and tender that it was rather tricky to get my socks on.
- My cravings are so nasty that are growsing even me out.
- I have what feels like stiff mucles all over neck, sholders, back, lower back and hips, but i think most of it is from likely being in pain while sleeping and moving around so much.
- My back is having megga back cramps but i am putting off pain meds for now.
- My hair is greecy because i havent been able to shower since i havent been able to stand up long enough, while i didnt have more important things to do.
- My face is one huge breakout that started before my cravings but is continueing likely because of my chocolate pigging out.
- I want to see if my package came in the mail yet but who much i am hobbiling while walking i am not willing to do right now in daylight while i will likely run into multible neighbours.
- My Chest is so tender that the weight of a hoody is painfull if i move the wrong way.
- My abdomen is so swollen and tender that it was rather tricky to get my socks on.
- My cravings are so nasty that are growsing even me out.
- I have what feels like stiff mucles all over neck, sholders, back, lower back and hips, but i think most of it is from likely being in pain while sleeping and moving around so much.
- My back is having megga back cramps but i am putting off pain meds for now.
- My hair is greecy because i havent been able to shower since i havent been able to stand up long enough, while i didnt have more important things to do.
- My face is one huge breakout that started before my cravings but is continueing likely because of my chocolate pigging out.
- I want to see if my package came in the mail yet but who much i am hobbiling while walking i am not willing to do right now in daylight while i will likely run into multible neighbours.
Sunday, April 18, 2010
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?
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?
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