Dr not so great Pain Managment Specialist from my past

I went to post a response/comment on a petition about the DEA and their crackdown on doctors/pharmacies and how it negatively affects pain pacients… well when I started writing I couldn’t stop (Yes I’m in Canada, but USA policy often affects Canadian an changes how people think an act, this is also why so many Canadians keep up with the USA elections as they affect us more than you know often. So anyways once I started I clued in this post wasn’t so valid about the topic at hand more a venting about an old doctor/doctor’s office I went to. Still the petition got me thinking an writing, (I rewrote an edited version shorter and more to the point to add as a comment to the petition, this petition; change.org/congress ease DEA's Grip )
currently I have had more luck than most getting my pain medication, but that has not always been the case.

For a long time I had to travel over an hour to my doctors every 30days, (without a driver’s license due to medical issues) take extra medication in order to make the trip and then once there be handed a cup to pee in as though I was a junkie. The part that floored me was that the instant piss drug test they had on hand in the office never once registered I was taking my meds. At the time of each test I was often on the max dose of my medication in order to be able to handle the travel, but still the drug test I was given came back negative each month I came in, and then I was accused each month of possibly selling my medication. Despite this seeming evidence I was not taking my medication, I was still re-prescribed the same medication each month. Finally after the 4th month of this routine I told him to order a blood workup to test for my medication as I knew I was taking my meds and was getting frustrated with being accused of selling my medication every month and him not even believing my pain situation. I figured logically the doctor would accept my suggestion and order bloodwork, instead he said it was unnecessary and decreased my prescription despite the fact that as time went on my pain was getting worse.

The next month I came in I was handed the sterile urine container and told to hand over my coat an purse (this was new) then I was lead over to the in-office washroom (until then I had used the public one down the hall as I was told to) where I was told to pee into the cup, as I did the newest doctor in the office stood against the door. Well seeing as I also have bladder issues at times this made it nearly impossible to pee, but I managed. This new routine stayed in place and it was now only the new doctor who would see me, who would full out yell an make threats when once again my urine for some reason showed none of what they thought it should. This doctor also would demand to hear why I needed medication, tell me I was too young to be on medication and that I shouldn't need it, yet had never read a word in my file (and was working in a Pain Management and Rehabilitation Clinic). It seemed if I stood up for myself my medication dose wad decreased, if I sat there and took the abuse nothing changed I still hobbled out with that months prescription. At one point when I saw my original doctor in that office again, I asked if there was anything else we could try as the current medication was far from managing my pain, and most of the time I couldn’t take any medication considering pill count at that point. He told me there was absolutely nothing he could do for me and that there were no options for my pain, which I would have to learn to simply live with it. It was at this point I decided I should try to get into a different or better pain management clinic as, it wasn’t for stronger more effective meds necessarily (though that was a hope) but I couldn’t stay with a doctor who had given up and told me to do the same when I was still in my early 20s with progressing pain issues. 

At my late October appointment with my original pain doctor, I went in knowing I would be seeing a new pain specialist (with multiple doctorates in a wide variety of areas, and was world known) in the middle of December so I only needed to deal with this current doctor for this one last appointment hopefully. Well during the appointment I was drug tested like normal and as always none of my prescribed medication showed up, however one pill I had taken 2 weeks before that I was given by the ER when my back was in a total spasm DID show up in my urine and the doctor lost it on me, calling me a drug seeker and an addict (this confused me as he also would accuse me of not taking any medications prescribed... so how can I be both, but that's another issue), well I explained the situation but apparently he now thought I must be selling my prescribed medication in order to buy the one that did show up on the drug test (that made sense to him rather than simply calling the hospital to verify my story).  In his anger he told me he would only give me half my prescription (once again, so IF you really think I’m selling them than why are you still giving them to me?). Well I told him I couldn’t manage on the current prescription halved as November was a busy month( in fact I’d tried to set aside and save some pills the last couple months in order to have more over the very busy November/December holidays so I could manage in public without feeling miserable), well he said he didn’t care. It was at about this time I immaturely stated that I was glad I would be seeing a new pain specialist in December, well that caused him to rip up the script and tell me something along the lines of “good well you’re his problem now”, I was stunned and asked if he was really going to send me on my way with no medication, and he told me that I didn’t need any medication as I had a new doctor and sent me on my way. 

Walking out of the office I couldn’t help but be scared, this was the end of October, I wouldn’t even meet the new doctor for at least 45days, how would I manage. Sure I knew I had a few extra pills saved up but not enough to even come close to helping really, heck it turned out the extra pills I had saved without mentioning to my doctor weren’t even enough to help with my normal safe withdrawal (many medications you can’t simply stop taking, the effects of stopping to quickly can not only be painful an miserable but can be very dangerous). I tried to stretch them out allowing myself to have a withdrawal period but in stretching out the medication the way I was I still suffered from many of the withdrawal issues, when I could no longer handle it I made a desperate call leaving a phone message to my soon to be new doctor explaining the whole thing, he wrote me a small script to help me do until I saw him, not enough to manage pain so I was a ball on the couch for the next few weeks but I wasn’t a ball on the couch who was also in withdrawal. 

This is where I will end.

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.