Sunday, January 1, 2017

New Year, New Hope, Take 2

Well! Another year has come and gone. I haven't updated since my post after the last New Year check-in. That's honestly because 2016 has been horrid and I really didn't want to give it too much-added attention.

Let's hope things change this year!

A brief update from 2016:
  • The Visanne continued to work, for the most part, for several months.
  • The headaches eventually went away,
  • Around March the pain started getting unbearable again.
  • Tax season was very hard on me between my pain levels, trying to work, and dealing with my boss.
  • By the end of May, I couldn't take it any longer.
  • June 1st my boss and I agreed for me to go on sick leave until after surgery and recovery.
  • Original surgery was scheduled for June 21st but was delayed to July 12th due to operating room scheduling issues.
  • July 12th surgery was completed. It was a long surgery, but the Dr. Grace Lui was confident. The uterus was removed to cure adenomyosis and endometriosis was found and excised. The bladder was connected to the uterus and was detached. A great deal of scar tissue and adhesions were found and removed.
  • I took the full 8 weeks to recover. It was a long process, but I didn't want to do anything to risk recovery.
  • Upon attempting to return to work my boss tried to lay me off.
  • After discussions with a lawyer and my boss, I was able to return to work,
  • Due to the instability of my job (that I had worked at for 10 years) I began searching for a new job.
  • On November 15th finally had a new roof put on our house and garage.
  • On November 22nd I accepted a new job that I believe will be much more suitable and satisfying.
  • On November 23rd I gave my boss 1 month's notice.
  • On December 5th my Callistos was diagnosed with degenerative myelopathy. Heartbroken.
  • On December 7th our furnace died.
  • On December 8th we had to have a brand new furnace installed.
  • On December 23rd I worked my last day. We had lunch at the CN tower as part of our Christmas / Farewell lunch.
So yeah! Fun year! /sarcasm

Some goals for 2017:
  • Pour myself into my new job.
  • Refocus on my education now that I have a job where I can actually use it.
  • Refocus on my health and weight now that I don't have this chronic illness wearing me down.
  • Refocus on cleaning and decluttering the home now that my illness is not dictating how to prioritize my life.
  • By less new yarn and use more stash yarn.
  • Complete more WIPs instead of starting new projects.
  • More detailed crafting goals will be on the craft blog.
  • Update the blogs more!
Let's have a great 2017 everyone!

Saturday, January 2, 2016

New Year, New Hope

Happy New Year everyone!

I haven't posted in a while, but to be honest there really hasn't been much to post about.

I basically spent the entirety of 2015 sick and in pain. Not really something one would want to reflect on.

The last post I made indicated I had started Lupron. Well here is a little update...

The first month on Lupron was hell. I was a mess. I forgot things. The pain was still there, and I was a hormonal mess.

The second month was a blessing. The only good month I had all year. The pain was pretty much gone all the time. I had trouble sleeping, I had hot flashes, I was hormonal, and I forgot things, but not having the pain let me forgive everything else.

The third month the pain came back. On top of that I started having horrible bones pains. My teeth hurt. My fingers hurt. My wrists hurt. My knees and ankles hurt. I felt old and fragile and like every step I took was going to snap my toes and ankles. I didn't want to do anything. It was the worst feeling ever.

I refused a fourth month. I will forever refuse it moving forward. I have now read how many woman respond very badly to this medication. I do not recommend it to anyone. If you are thinking about trying I suggest you do a lot of research first.

During that time I was finally given my MRI. It showed signs of Adenomyosis, but no signs of Endometriosis. It turns out that the thickness of my uterus is more than four times the normal thickness. When I asked the doctor what now she said that because I was on the Lurpron, that shrinks the Endometriosis, that it was possible they would not see it. I almost lost my mind. What the heck was the point of doing the MRI while I was on Lupron then?

After that my current specialist pretty much gave up on me and didn't know what else to do. She kept me on the Micronor add back to at lease keep my cycles as regular and light as possible, but that was pretty much it. I went back to being in pain and misery and missing way too much work. I asked for a referral to a pain clinic, which she agreed to, but the pain clinic did not accept the referral as they don't treat my type of pain. I broke down in tears in the doctor's office when I was given that news.

Thanks to Nancy's Nook Endometriosis Discussion and Education group on Facebook I discovered a list of specialists that specifically deal with the Endometriosis and Adenomyosis that they believed I was suffering from. I asked my specialist for a referral to one of those specialists, and since she knew one of them very well she agreed. I had to wait almost 8 months to see her, but I finally saw her on December 17th.

She was amazing. She was warm and friendly and sat and listened as I explained every little detail. Then she did the one thing no other doctor had done to date, she actually physically examined me. It didn't take long, she knew exactly what she was looking for. I felt such relief just finally to be in the hands of a doctor who obviously knew what she was dealing with, She prescribed me a new medication that she had success with and scheduled me for an ultrasound with a technician she has trained to look for very specific things. I will do that in late January or early February. We also scheduled a surgery date for the end of June in case nothing else works out (since the wait times up here are so long). It was such a great experience, just to be heard, and not to be looked at like you are crazy.

The good news is she is thinking right now that it might just be the Adenomyosis that is bothering me, and not Endometriosis at all. She said she didn't feel any of the telltale nodules etc. that she is used to. That is good news because Adenomyosis is completely contained inside the uterus. That means a hysterectomy will cure it. Keeping my fingers crossed for that one! But even is I do have Endometriosis she is skilled to remove it while she is in there, there is just no guarantee that it might not grow back at some point.

The new medication that she is trying me on (Visanne) is actually working pretty well. I get about 50% or less of the typical pain I have been dealing with, which is really nice. I rarely have to take the stronger pain killers anymore. I do get a headache almost every day, but I can treat that with an Advil and move on. Compared to the pain I am used to this is almost like being well. I still have weird side effects like mood swings, trouble sleeping, some minor body aching and bone pain, but nothing like what I had on Lupron, and something I am just going to live with t avoid the pain as much as possible. 

Very much looking forward to seeing how this year goes, especially with a pending surgery that will hopefully put this Humpty Dumpty back together again...

Tuesday, April 7, 2015


On Monday, March 30th, 2015, I felt my world start to crumble around me a little more.

After going through multiple different tests, and seeing multiple doctors and specialists, a new, tentative diagnosis was proclaimed.

My current specialist, who also happens to be a fertility specialist, diagnosed me with endometriosis based on medical history and current symptoms. Although it hasn't been confirmed by laparoscopy, she believes it is the most likely culprit of all my years of pain and suffering. In a way I guess it makes sense, but I also tried to find ways to fight against the diagnosis.

Why had it not been seen in any of my previous surgeries in 2010? Apparently it can be missed...especially if you only have a small patch that is bothering you. But it can spread, which is why it might be worse now.

I am still holding on to the hope that they are wrong. That once they do this MRI I am waiting for that they will find something else. Something they can fix. Endometriosis can't really be fixed. There is no cure. There are treatments, but they are not fun.

Take for example my current treatment plan.

I am currently on monthly Lupron injections to reduce the amount of estrogen my body produces since that is what angers the endometriosis tissue in my body. This basically places me in a chemically induced menopause. Nice right? I get add back hormone therapy with Estrace and Mirconor to help combat the nasty side effects like hot flashes, mood swings and bone density loss.

It takes 2-3 weeks for the good effects to kick in, but oh have I already been introduced to the bad side effects!

I am having trouble sleeping...a lot of trouble sleeping. I am hot, cranky, and of course I am just thinking about all sorts of non-wonderful things so that doesn't help either. Add to that this weird burning achy pain I am having in my upper right leg and the hot flashes and you can kind of imagine maybe what it is like. Last night I tired having some Sweet Dreams tea together with an Advil to relieve the leg pain a bit before bed. It worked a little. I was able to fall asleep at least, but I did keep waking up intermittently throughout the night.

I have also noticed the mood swings. I snap much more easily now, which is never good. And of course, the pain hasn't changed yet because it's only been a week. I am trying to be strong and give it a chance, but I am really miserable right now. It's very hard to focus at work, and of course this is our busy season.

Hopefully I get an appointment for my MRI soon and they either find something that they can treat, or at least the endometriosis shows up enough to make them want to go in and excise this. Because this right now is insanity...

Thursday, March 12, 2015

Seeking A Diagnosis

This might get long...I might break it up into two posts...

It's been almost two months since my last post. Since then not much has really been accomplished.

The specialist I was seeing at the time has greatly annoyed me, and I doubt I will be seeing him ever again.

The first time I saw him he seemed honestly concerned and I really liked that about him. He ordered a fresh ultrasound and I went for that right away.

A week later I went back to discuss the results of the ultrasound. There was a 8-9 cm cyst on my right ovary. Oddly most of my pain had been on the left side. We therefore agree that the pain is most likely not a result of the cyst. He prescribes me a low estrogen hormone birth control pill. Lolo, to hopefully help shrink the cyst and make my menstruation cycles more manageable. However, he decides we should monitor the cyst for two months to see what it does and go from there.

Say what? Again I say...we agree the pain is most likely not from the cyst. So why is it we decided to do nothing at all and just monitor the cyst and pretty much halt all other tests until then? I wasn't very happy about that, but I was in pain, pretty high on pain killers, and I agreed and left the office.

I went back a week later and begged for something more. The pain wasn't getting any better, in fact it was worse. The Naproxen wasn't doing anything at all and I couldn't function at work on Tylenol 3s and Percocets. He decides I should now take Toradol and take it 3 times a day whether I am in pain or not to keep it in my system. He then sends me for a CA 125 blood test. As I am leaving he tells me if the pain is still bad or anything else comes up I can call him and come back any time.

A few days later I am still in agony and things are worse. I am pretty sure I am having a bad reaction to the Toradol. I call his office to speak to him and find out my CA 125 came back and it was clear. Well this is fabulous news at least! Then I go on to say I am still in pain and that things are worse. He tells me that there is nothing else he can do for me until the second ultrasound is done. I am floored. This is very different from how I expected him to respond. I tell him I am having issues with breathing and cheat pains, most likely from the pain killers HE PRESCRIBE ME and he then tells me it's not his issue and I should call my family doctor. I am flabbergasted. I call my family doctor and she tells me to come in.

The family doctor immediately takes me off the Toradol (thank goodness) and gives me a prescription for Tylenol 3. I ask about any kind of middle pain killer that works but still allows me to function at work, but she can't think of any. We agree that specialist #1 as I now refer to him as is not a good fit for me and she personally refers me to her specialist of choice, a woman who works in the same building. I am relieved. I prefer a female anyhow.

The next day I get a call from specialist #2. She can see me the middle of May.

MAY??? That's almost 3 months away at this point! Are you kidding me? I politely ask to be placed on a cancellation list, hang up, and ball my eyes out.

The next day I am talking to a client of mine and she tells me about her specialist and how much she loves her. She speaks to her on my behalf and the specialist gives my client the name of a walk in clinic who has a doctor on staff that will refer me directly to her. I can't believe my good luck. I visit the walk in clinic the next day and just as easy as that he gives me the referral. I fax it to the specialist and she calls me the next day to book an appointment with her the very next week! Hold crap I cannot believe my luck!

The day of my appointment I am nervous and trying not to get my hopes up. The wait is long. I am sitting in the waiting room more than an hour past my scheduled appointment time. I am disappointed. Specialist #3 finally comes into the room and immediately apologizes for the delay but says she wanted to make sure she read my entire file history before she talked with me, and it was a large file. I am too shocked to say anything. I can't believe she took the time to be honest. Specialist #1 was actually reading every report for the first time as he sat in front of me, and was obviously very disorganized. She immediately takes me off some more medications she doesn't feel I need, and might actually be doing more damage then good (metformin) but also wants me to stop taking the harder pain killers and swap to stacking over the counter Advil and Tylenol. We talk about the possibilities of endometriosis and the treatment for this (more on this in my next post). She immediately tells me she is going to schedule me for a pelvic MRI (FINALLY!!!) and review my new ultrasound reports when they come in (I had just had the new updated one done that morning for Specialist #1). I will be going back next week to review the results of the ultrasound to see if (a) the cyst shrank and (b) if anything new is presenting itself. She also wants me to have a PAP because I have been so worried about abnormal pain etc. for so long that I haven't taken care of the "normal" procedures for quite some time.

Hopefully I will have some more news after next week's appointment. I also have another related post about the whole endometriosis and treatment subject.

So far, so (mostly) fabulous with specialist #3!

Friday, January 16, 2015

Health Regression

The past few months have been Hell...

I am the heaviest I have ever been, I am not sleeping, I am in constant pain and discomfort, I am basically being held in a wait and see pattern while the doctors keep me as numb as I can possibly be and still function at work at the same time...

I am sick and tired of being sick and tired...

Let's back up and start with a bit of history:

Ever since I was very young I always had very long, heavy and painful menstrual cycles. I didn't realize for a very long time that this was normal. Often I would stay home from school or work for 1-2 days when the really bad days hit me. I was prescribed birth control pills to help control my cycles.

I moved out on my own when I was 16 and started smoking. I quit taking the pill because I was advised not to continue taking them if I smoked.

I had my son with my first husband when I was 21. My cycles became even worse, so I went on Depo Provera (birth control injection shots) as I couldn't go back on the birth control pill because I was still smoking at that time.

During my second marriage we decided to try and have a child together. I went off the injections and nothing happened (no menstrual cycle). I was prescribed hormone pills to help re-start everything. They made me miserable, and I made everyone else around me miserable as well. After a few more months my cycles returned, but I was never able to have any more children. I began to discover then that my menstrual cycle troubles were a sign that things were not really all that well in the hormone and fertility department. The second marriage ended shortly after.

In 2010 my menstrual cycles were out of control. I was missing multiple days of work almost every month due to the extreme amounts of pain and bleeding. After multiple doctor visits and hospital emergencies a cyst was found that was causing the pain due to a twisted stalk. A laparoscopy was performed and the cyst was removed. It took me almost 2 weeks to recover from that surgery. I thought that was the end of that.

Less than six months later the pain returned and this time multiple cysts and fibroids were discovered and I was diagnosed with PCOS (Polycystic Ovarian Syndrome). One of the fibroids was quite large and I agreed to have a myomectomy performed to remove the large fibroid and anything else they could during the surgery. Over eight pounds of cysts and fibroids were removed from that particular surgery. It took two months to recover from that surgery. I was hoping that would finally be the end.

My common law husband and I changed out diet and eating habits and researched what we could find out about PCOS. Things seemed pretty good for a while, although eventually the cycles went back to their normal (for me) horrid self.

Starting in September of 2014 I could take it any more. The pain was horrible again, I was missing too much work again, and I was at the end of my rope. I was given ultrasounds, pain killers, iron supplements, medication to slow down the bleeding, everything. But everything was all wait and see. I requested a specialist but was told I didn't need one.

Finally, in December, after going to the hospital on three separate occasions, the hospital emergency doctor referred me to a specialist that works out of the hospital.

I really like my specialist. The first ultrasound we did showed a large, almost 9 cm cyst in my right ovary. As most cysts tend to resolve themselves in 1-2 months, he decided to wait 2 months and get new images done and decide at that point what steps to take next. I am still on a wait and see regiment, but at least I feel like there is some information and some movement. My specialist also requested a CA 125 blood test (which was not covered by OHIP) so I am just waiting for those results back right now as well. I have been prescribed low dosage birth control (Lolo) to help prevent new cysts from forming as well as to (hopefully) regulate my cycle. I take Metformin to help control blood sugar levels and weight gain, and I now also have to take Toradol three scheduled times a day to keep the pain at bay.

I have little to no motivation. I am not really doing any courses lately, I am trying to stay on task at my full time job, trying to build a business of my own on the side, and mostly just chilling out in my comfy home office chair with a hot water bottle, some Netflix and some knitting.

Fun right?

Well that ran a little longer then intended....

Basically my thought was to revive this blog to help track all my symptoms, tests, results, etc. for medical purposes and also to provide the information for anyone else out there is having similar issues so you know you are not alone and maybe we can share what is/is not working for you/me.

I started tracking my symptoms on January 10th, 2015 as follows:

Saturday, January 10th, 2015
  • lower back pain
  • lower left pelvic pain
  • nausea
  • no appetite, full easily
  • headache
  • having to urinate frequently, but not a lot each time
  • constipated
  • Extra medications today: Naproxen for afternoon pain, Docusate for constipation, Gravol for nausea, Percocet for increased evening pain and to sleep.
Sunday, January 11th, 2015
  • little to no sleep the previous night
  • diarrhea
  • upper and lower gas
  • pelvic pain
  • lack of appetite
  • no energy
  • passed out in the middle of the day for about 4 hours
  • Extra medications today: Tylenol 3 for pain (barely numbed it)
Monday, January 12th, 2015
  • lower left pelvic pain
  • nausea
  • extreme bloating and pressure
  • Extra medications today: n/a
Tuesday, January 13th, 2015
  • little to no sleep the previous night
  • having to urinate frequently, but not a lot each time
  • heartburn
  • weak and shaky
  • right leg glitches
  • extreme bloating and pressure
  • upper and lower gas
  • dizzy
  • heaviness of chest
  • short walk to the bank almost made me pass out
  • Extra medications today: n/a
Wednesday, January 14th, 2015
  • little to no sleep the previous night
  • had to get up to urinate in the middle of the night
  • bad tasting and burning upper gas
  • bad smelling and burning lower gas
  • constant tummy rumbling
  • sharp pains in the lower left pelvic area
  • extreme nausea
  • lower back pain
  • Extra medications today: n/a
Thursday, January 15th, 2015
  • little to no sleep the previous night
  • running on empty
  • extreme nausea
  • extreme heartburn
  • lower back pain
  • stomach pain (above the belly button)
  • lower right pelvic pain
  • Extra medications today: Gravol for nausea and sleep
Friday, January 16th, 2015 (as at 1:00 pm EST)
  • almost no sleep previous night, maybe 2 hours
  • exhausted
  • nausea
  • heartburn
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