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I live in chronic pain. The reason for my pain, is Endometriosis. I was diagnosed through surgery when I was 17. I have decided to have this blog, so that those in my life can get a peek into my day to day issues that affect my life in every way.

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.


  1. Hi, I completely identified with the support and strength your mom gives you. I know about breaking down, being in articulate at doc's... I'm sorry you've had to go through the whole "it's all in your head" thing.

    I have Dandy Walker Syndrome... So far their support group has been helpful, not just emotionally, but in terms of figuring out what to ask my doctors, what could be wrong... etc.

    I've heard endometriosis is extremely painful, so I sympathize with you. Does anything bring you relief?

  2. Max stregth demerol brings some, but often still leaves me in alot of pain and at that point i do something i would rather not mention (haha, if it was an annonymess blog i would say but i link to this blog from facebook) or i go over the the ER in hopes they will give me an injection or IV of morphine or something.

    for me i was okay, sure i didnt love it but when my endometriosis just effected my period or pms time and period i could manage. For me the issue came when my pain started to be constant and would only get worse areound period, on period and also ovulation. before i got on one daily pain med i couldnt really even walk more then to kitchen or bathroom i acturaly lived on the couch but with daily med i can be more active (like i traveled to friends house by myself, sure i ended up having to supplement with some demerol however before i would have to take max demerol in order to touch daily pain, it wouldnt and i would be left to out of it to safely be outside of our house and way to out of it to be traveling.

    i have never heard of your syndrome will look it up for sure a little later when i have time to acturaly do some reading without worrying i should be packing to head back home haha.

  3. Oh your blog brings back so many memories. I was diagnosed at 19 and at 27 I had a hysterectomy and one overy removed. They biopsied and found that I did also have adenomyosis ... I remember the pain so well, and sadly after my hyerectomy we found that I still had horrible abdominal pain (slightly different than my periods) and found I also have severe interstitial cystitis. It is so good to have people who understand and can help or just be a shoulder to cry on. I am also blogging on the topic of health and chronic pain check it out ... it's so good to have blogging friends!