Monday, December 14, 2015

How long does surgical menopause last?

I haven't written in a long time and it is mostly because I have no idea what is happening to me. I just don't feel normal and I am not sure why. Yes I still have hot flashes but the Cymbalta definitely helps to lessen them as well as helps my bladder spasms. 

Here is the thing.. My nose, ears and mouth are completely dried up. My eyes perfectly fine and many tests that I have had came back negative for ANA/RA so no Sjogren’s syndrome, so I am completely confused and living in utter hell at the moment I would say. My inner ears are so itchy and sometimes its white and flaky which has never happened before. The other day I did notice almost a red ting to the ear wax. My mouth on the other hand, wow it just never ending thirst. I drink at least 4 liters of water a day and I just can't quench my thirst. I started to develop "Burning mouth syndrome" which I thought was from upping the Cymbalta but now I don't know what it is from. My nose has been dry the longest. It started when I was on the continuous BCP 2008 and it has never gone away. I have tried so many things and at one point I was told it was a tiny cyst and that was removed and now its the other nostril but it just seems dry and my nose NEVER runs even if I have cold.  

I have yet to take HRT because everything else is fine, I think. I am 38 and my hysterectomy was May 2014 so that is coming up to 2 yrs. I am utterly confused about this subject. I know that I am young and that I already have mild osteo in my jaw but am I setting myself up for more problems if I take it? My worry is heart disease mostly because it runs in my family and I have been having a lot of heart issues with anxiety which I truly think was brought on in 2007 when I was put on Lupron. I didn't think of it until now and it scares me to go on anything else which could increase my risk.

Seriously though, when does this end... When?  

If anyone has any suggestions or is going through the same thing I would be more than happy to hear from you :)

Tuesday, November 17, 2015

Save the date for Endomarch Canada May 7th 2016

I know what you must be wondering. "Why is Canada doing their March in May?" Well the reason is that it is just too damn cold here in Canada and we have had really cold weather the last two marches. The first one was -30 degrees and last year around -15 to -20. So that being said the TENC board members made a unanimous decision to have it May 7th 2016.

During the Worldwide event in March we will be virtually raising awareness by doing the annual #awishnoted campaign as well as heading down to the CN Tower in Toronto to see it light up yellow for Endometriosis.

This way we get the best of both worlds and we don't freeze our butts off.

Stay tuned for updates!!

Tuesday, September 22, 2015

Motherhood with Endometriosis

Infertility and Endometriosis is something that is talked about a lot these days and so it should be. It is something that is now getting more recognition in the last couple of years due to so much awareness from those that are infertile and those that are still struggling to conceive. Many of the women I have talked to and/or know that are going through this I truly empathize with.  

I really do wish my blog had more to do with infertility but I write from experience and for me after I had my daughter which I believe to this day is a miracle I never tried to have any more because the pain and suffering I went through with her alone was more than I could bear. 

During the first years of my daughters life (not diagnosed still at this time) I honestly thought I was losing my mind and the bowel pain I was going through was only getting worse. One night I actually saw demons that now I can describe as dementors (Harry Potter) I was literally losing it and I was yelling at my daughter and could not get any sleep as she was a very high maintenance baby and I was a single mother with no support in the early years. 

I had a dream that my daughter was hanging out the window and was calling for me and I just let her hand go... I watched her fall and I felt a huge sense of relief.. then I realized "what the hell did I just do?" and ran down to get her.. In my dream when I got there she just looked at me with this look of fear... of me... 

Around the time she was 3 years old I decided that I couldn't take much more after watching a program on Rogers TV about Post-partum depression and although she was 3 I really felt that I had that. Once I talked to the doctor in the ER he told me I just needed sleep and gave me sleeping pills. What if I wanted to kill myself? 

Around this time was when the 10cm complex cyst was found on my left ovary. I had been given marvelon (BCP) to deal with it and within a week it was night and day. I can't even explain the difference it made for me mentally. It was like I had a renewed life and I felt happier, I wasn't depressed and felt totally different with my daughter. 

So that being said most of my child's life (she is 12 now) has been filled with pain from Endometriosis, Chronic Fatigue and Fibromyalgia. It has been a constant battle to be a parent. There are times when I wish I never had a child and wish I could run away. I want to tell people with Endo not to have children but that wouldn't be right because my circumstances are much different than others. 

Being a parent with Endometriosis has been a life of saying I am sorry for being tired, I am sorry I need to lie down, sorry not today, sorry I can't play today, sorry you know how mommy's tummy hurts, sorry I wish I could do more.... you get the point right? I feel like I have been a horrible mother but I know that isn't the case. I just wish I could do a do over and not have Endometriosis and do all the things I always wanted to do with my daughter. 

As the days go by my daughter has become more self sufficient and it has made it easier on me because she can take care of herself, but it doesn't take away the guilt of not being able to give 110% to her. 

This disease has had it's challenges and looking back on it all and looking at my daughter I realize that I did a good job under all the circumstances. She talks about Endo to people and she empathizes when I am in pain and wants to help me. She believes me when I say I am in pain... I really think she was the first one to actually believe the pain of this disease before anyone else because she had to live with me every single day and see everything I did just to survive and I am still unsure if that is a good or bad thing at this time. I suppose time will only tell.  

I can say one thing for sure... I wouldn't be who I am without her or Endometriosis. 

What are my options after Endometriosis surgery when the pain returns?

A question came up on in one of the Facebook Endometriosis support groups that triggered me to write this post. The conversation was about patients trying to go to the US to have surgery as Canada is very limited when it comes to Endometriosis specialist and in fact there are many provinces that literally have none. What is a patient to do when there is no care? Why are there more and more Endometriosis sufferers in general continuing to have surgery after surgery? 

I have found that all over the internet people are having their 10th, 20th surgery like it is nothing to be worried about. It completely baffles me. I am not sure if people feel pressured to get more and more surgeries or that when they have pain they feel it is Endometriosis returning but unfortunately the problem with this disease is that it can't be seen. 

The biggest problem all around the world is after care. Once your surgery is done where are you supposed to go and what are the next steps? Is the pain you are feeling really Endometriosis or could it be something else? 

I myself have been in this situation and I myself have not followed through in doing the things that I needed to after surgery. Yes it is extremely possible for Endo to grow back if it was not removed properly however the pain we sometimes feel after a good surgery could be a variety of things and many women are having surgeries when they are not needed, only to cause more and more problems for them down the road. 

So, that being said what are the next steps? 

1) The very first thing with Endo that every woman should be aware of is that the first surgery matters a lot so make sure it counts. That means having surgery with an Endo specialist period. No OBGYN or someone claiming to be versed in Endo that is not good enough. You need someone who specializes in the disease and I know for some this is completely and utterly impossible and I will get to that in another post. 

2) Rest. Once your surgery is completed do not try to rush yourself or try to pick up heavy items etc. Just because you feel good on the outside does not mean the inside is healed yet and you are putting yourself at risk of damage inside. Take it slow and let your body heal. Try meditating during this time and let the natural course of healing take place. 

I am not an expert on the Pelvic Floor Therapy (PT) but I know it works for many people. That being said going to PT once a week or once a month does nothing when it comes to scar tissue. You need to find a place like Clear Passage. I know it is around $5000 a week but you are worked on for hours and its everyday. Your body has to remember the change in order for it to work so going daily is what will help but lets face it, how many people can afford that? I know I can't but it is something that I will be doing in the near future plus I would have to add in travel to the US as it is not provided here in Canada as of yet. What is your health worth? To me saving $5000 for Clear Passage is worth it for many reasons. It is good for women who have infertility problems, surgical adhesions, Bowel obstructions etc. I have heard great results from a fellow Canadian and Endo patient (See here and here) I think if you are interested in alternative options you really need to read everything they have on their site and even contact a consultant which is free of charge. 

PT from Clear Passage is not only on the outside they also do internal and from what I hear very gentle and caring during the process. 

Here are some statistics regarding adhesion formation after surgery. A lot of the time what we are feeling is not Endo but adhesions. 

Below is a visual of what adhesions do to cause pain

I was able to speak with Dr. Wurn personally in 2009 at an Endometriosis symposium in Toronto and he was so helpful and caring about what I was taking about and to this day I truly believe that this is a vital part of recovery when it comes to Endometriosis and Adhesions. 

 Clear Passage

Sunday, May 17, 2015

Playing the Victim with Endometriosis

I sort of had an epiphany the other day which I am sure a lot of us Endosisters can relate to. I am either going to say something that might offend some people or help others which are going through something like what I am at this moment. 

I have found that lately when I tell my story to people about my journey with Endometriosis I have been getting 1) Tired of repeating it 2) Sick of having to justify why I take meds/doctors/surgeries etc 3) Sick of playing the victim 

With that being said, I was sitting outside the other morning and I said to myself that I have to stop explaining Endometriosis and stop being overly dramatic about everything that comes to Endo. It was then that my cardinal came to visit me seconds after the thought. This cardinal goes back to last year when I lost my job. It was there every morning looking at me and chirping away and it was at that time I felt things were going to be okay. So I relate to this bird almost like the universe is telling me that what I was thinking about is something I need to work on in order for me to move forward. 

For 25 yrs I went to over 40+ doctors only to be diagnosed with everything under the sun and finally Endo after 14 yrs of pain. I felt that every time I went to the doctors office the doctor was exhausted just looking through my file and medications. They had tried but my pain was so wide spread after years of medical neglect that doctors get extremely confused with me being their patient that they often tell me there is nothing more they can do. 

My family were the most unsupportive group of individuals that I came across during this journey and because of that it made living with this disease so much more harder to bare. I am not sure why my mother never took what I said seriously or showed any empathy but it only made things worse mentally for me because I didn't even have the support of my own mother. I don't blame her and that is not why I am writing this part about her, but in order to see and understand why women such as myself that suffer with Chronic pain appear to play the victim you need to have the full background information. Yes she took me to the doctor when I was 13 and I had an ultrasound done to look for cysts but after that it was as if because they didn't find anything it was all in my head, or because she couldn't fix me she ignored the fact I was in pain. That was probably the most hurtful thing that I carry around to this day.  It is like a pain that can never be healed. When I was finally diagnosed at 27 I was happy, happy because I knew my pain was real and I didn't have to justify anything to her or anyone any more, or so I thought... It has been 8 yrs since my diagnoses and although she listens I can guarantee that she has never researched anything about the disease and the reason I know this is because I can tell by her responses or comments when it comes to me talking about it. I get really angry inside but I love my mother so I just bottle it up inside. This is just one example of how I feel I need to keep justifying my actions to her and everyone around me including close friends. 

I have learned a lot about empathy over the years and I know that women with Endo do not get empathy from most people including their doctors and that is when they are left to feel absolutely alone in this world suffering. Many contemplate suicide because we know the pain will never end and to not have support by your side is a sure way to fall deep into the hole of depression and it is almost impossible to get out. 

When I look back at my life what I see is so much darkness and sadness but most of all lost and alone. I had no one to talk to about what I was going through and I have had major depression since I was 15, Fibromyalgia since 17 and Complex PTSD since 35. I feel cheated that I have had to go this journey alone and I can't even express how many times I wanted to kill myself. 

So fast forward to now 2015, one year post hysterectomy I have decided to change things around for me. Yes, I will probably still have to go through years and years of doctors and different meds but I am not going to give in to explaining or justifying anything to anyone anymore. I am finally going to live my life for me and if I am not well I am going to take a break, take time off work, take time to lie down, but most of all take time for me. I am 40 years old in 2 years and I have spent most of my life proving I am sick and it got me no where and that is stopping as of today. My life will be filled with people that understand me, with people that don't make me feel like I am some person looking for attention and this is where the next step of my journey is going. You only have one life, and wasting your energy and time on people that lack any sort of empathy is time wasted. I have so much to offer the world from my experiences and my life and for me it will be a renewal of self love and self care. I matter and I matter to many people that share my passions in life and I will no longer play a victim to my illnesses because life is just way to short. 

Saturday, May 9, 2015

One Year Hysterversary

I have tried to write this post for the last couple of hours and I keep deleting and re-rewriting and nothing at all is coming to me and maybe that is how the last year of my life has been,,Dazed and confused but also like time has stayed still.

I think the best thing I can do for everyone that reads this is to be honest. I did this surgery for closure because of all the trauma I had been through suffering from this disease but what I feel I got is much worse than what I was going through in some way. I have no Endometriosis pain at all and I should be happy but I am not. The sudden loss of hormones really sent me for a loop as I didn't have a lot of hot flashes for the first six months so I thought I got lucky.. Well things changed and I have been suffering ever since.

My bladder is so much worse now than ever. I leak after I go to the bathroom and can't hold my urine in if I need to go. This surgery seems to have weakened my pelvic wall even more and it is very clear that I have pelvic floor dysfunction.

My bowels are all over he place. I feel like I am losing function of my bowels and can barely hold it in at times. The urge suddenly comes and I am literally running to the washroom or I am totally constipated.

My plan was to wait a year to start pelvic floor therapy and that is something that I am currently doing. My first appointment was mostly talking but she did do an internal to see how tight the pelvic wall was. She gave me a lot of techniques to help my bladder and bowel which I will share on another post and those have been pretty helpful. I think it will take a very long time and aggressive pelvic floor treatment in order for my bowels and bladder to regain proper function and for sex not to hurt. Unfortunately in Canada we don't have such places like Clear Passage and even if we did the prices are very expensive.  My goal will be to eventually get to a place like this but in the mean time I am going to stick to the techniques I have been shown and to continue pelvic floor therapy (until my benefits run out)

Mentally and physically I am a mess but I am coping the best I can under the circumstances. I sometimes regret the decision I made but then there are times I don't. It is like I traded in one problem for another but it is what this disease and it's treatment is about. You can't win.

My advice for others seeking a hysterectomy is to really think and research a lot before doing so because even after 5 yrs of me contemplating mine I was still not sure if I was making the right decision and I knew it would be a 50/50 chance of it helping me.

My story is like many others out there and I hope one day there will be a cure for Endometriosis, but until then I will continue to share my story, advocate and to take part in research studies because my daughter is 12 and has the same symptoms I had when I was her age and I refuse to let her go through what I have the last 25 yrs.

Friday, May 1, 2015

Worse off having Endometriosis surgery in the first place?

Is this a thought that you have pondered some time since having surgery for Endometriosis? We always here that the "Gold Standard" is the best way to treat it but at what cost? What have you lost or what has changed since making that choice to have your first Endo surgery? This is something that I think about a lot. I suffered greatly long before the internet and I did have Stage IV (DIE) with Rectovaginal and bladder disease and I still question if I made the right choice after all this time.

For me I went to over 40+ doctors in a 14 yr time frame undergoing hundreds and hundreds of tests, appointments, exams etc. I suffered greatly in the hands the of the medical care system but how were they to know when they couldn't see anything. For me my first surgery was for answers. I couldn't handle another doctor saying to me that he didn't know and to go along and just try this anti-depressant this time....

Before surgery I was around 135-140 (Now 165) and I had chronic nausea for 2 yrs and couldn't go in the sun, reflux which made it hard to eat or drink anything along with migraines lasting over 100 hours which would end me up in the ER each time as nothing could help stop the pain and those started at 14. The rectal pain I would get wasn't just on my "Ladies days" it was at any given time and they would come out of no where. Days before my period I would evacuate my bowels which felt nice as I was always constipated and in pain because of it however that nice feeling didn't last long because as soon as the blood came so did the numbness, pain, vomiting and constipation again. It wasn't until the 7th day or so that I could have a bowel movement and then the pain would subside and same with the symptoms. The bladder issues I chalked up to child birth as it seemed to get worse when I was pregnant. I was diagnosed with Fibromyalgia at 17 yrs old and I always felt that I didn't have it and kept pursuing answers that would make sense.

Where would I be right now if I had done nothing and left it? I am pretty confused because I we are damned if we do and damned if we don't. We just end up with a different set of problems which some times end up worse than the original pain to begin with. If I am honest I can't even remember my endo pain anymore. I know it was brutal and I know that I suffered a lot but some days I wish I had that life back and some days I don't. It really is unfair.

What do you think? Do you think you should have just left it? Do you think it has made things worse? When will we be able to detect this disease before being opened up and also be able to manage the Endo without being cut open?

Wednesday, April 29, 2015

A Nightmare called Menopause

Just when I think things are starting to look up or at least level out I am hit with one disaster after another. After my surgery in May 2014 I had very little side effects of surgical menopause until August and since then things progressively got worse. I am still not on HRT because I can't determine what is causing what I am feeling. I don't know what to call these hot flashes other than temporary demonic possession of my upper body.

Besides the nightmare of Hot Flashes I have noticed many changes such as the elasticity of my skin all over my body has become more loose and saggy, I have gained about 10-15 lbs in a year but I am not sure if all of that is Menopause related or pain meds, Anti-depressants or wine. I started to get aging spots, if I had them before  I never noticed them before but now I do more so than ever. My breasts have gone up a size and that could be due to weight but I noticed my bra was not feeling comfortable at all before my surgery last year so it may have nothing to do with either. I have realized that my memory has turned to mush and I remember nothing. I used to be good remember numbers, names, even places where I parked.. I forget things so quickly it is scary.

I noticed that I have not had one cold sore, not one headache or migraine at all and that my head (mental stability) was clear and the only reason I am on Cymbalta is for the body & nerve pain from Fibro and major anxiety/panic. It sucks thought because Cymbalta has messed with my head a bit and wished that I could just be able to take something for the pain rather than my head but it seems this is how it works doesn't it? One med will help one problem but causes a flood of symptoms and its almost best coming off them...but then you do and its 1000x worse because you have forgotten the smaller things that it was helping but didn't notice.

Urinary symptoms have stayed the same however Cymbalta helps with the urethral/bladder spasms but I still feel something heavy pushing down like something is going to come out of my vagina. It is frustrating.

I still have yet to go on HRT as I am still crazy confused but I have decided I am going to ask for the patch to see if it helps a little with these flashes so I am crossing my fingers it helps.

I sit back and wonder how long I can take these symptoms for and although my surgery was for mental closure I really thought I could handle the side effects of Menopause with all that I have been through. Taking both my ovaries wasn't an easy decision and in the end I decided to side with my surgeon due to the fact I didn't want to have pain from the remaining ovary that was salvageable turn on me since that was the ovary that had the endometrioma in it and gave me the worse troubles as it would always stick to my bowels.  So a year later almost and here I am not sure what the right choice is/was. I still feel confused. I have no Endo pain so I should be happy but the side effects and hot flashes have really done a number on me for the last 6 months and this is why I wanted to document my journey because seriously you can say you are fine after surgery, a year later or even 5 yrs but I want to know 10 yrs from now how I am going to be so I can share. I can only hope this does not continue on for 10 yrs or more because I know mentally I could not handle it.

Friday, April 17, 2015

Inspirational people, moments and pictures in my life 2015

There are so many things that have happened to me from 2014-2015 and even though it has been the toughest two years of my life I know there were so many good moments even if they were small, many small memories made a huge impact for me and helped keep me sane.

Many of the women in these pictures have shown me the reason of "strong" and I don't mean that regular talk of someone being strong... I mean the strongest women I have ever come across in my life. They have been through so much yet they still are standing when they could easily give up.

I am obviously very proud of the TENC because not many people realize that we have no funding and there is only a small tiny group that pulled it off through all the ups and downs. I am so proud to be apart of it and to be able to make a difference each year. One day I truly see us with thousands of men and women standing and finally being heard..

From this point on many more moments will be captured and I can't wait to share them with everyone.

Thursday, March 12, 2015

Menopause & Heart Disease

It is a well known fact that women who have surgical menopause are at a higher risk in developing heart disease. 

Almost everyone on my dad's side have/had heart disease so yes this is something that concerns me greatly because I used to smoke and only quit two months ago (still better than nothing for sure), I lost all feeling in my arms for 3 months and the testing was too late to say what caused it. I still don't feel right since that happened and I am fearing that it's signs of a stroke or heart attack. My upper body feels inflamed, that is the best way I can explain what it feels like. I have never felt this before so I am not sure if it is from surgical menopause or my arteries. It is a truly scary thing to go through. I never thought of this before my hysterectomy to be quiet honest. I understood it put me at greater risk for cardiovascular disease, early dementia and mental health issues but for some reason I didn't even think it would happen to me.

I can't say 100% at this moment if my hysterectomy was right for me because I really am unsure of what is going on but as an advocate and a warrior I will continue to update any changes to help others in the future. 

Has anyone felt what I am feeling at the moment?

Friday, February 27, 2015

The Faces of Endo Video

I know I have promised this for over a year, but many things have happened that wouldn't allow me to get to it but I finally managed to get it done even when my computer was on the fritz since day one of collecting the collage photos. Someone, somewhere did not want this posted that is why I feel it was such a problem LOL..

Wednesday, February 4, 2015

8 Months Post Hysterectomy

As I start to approach the one year anniversary of my hysterectomy, I can say without a doubt this was quite the ride so far. I knew I was going to have rough times and I can't say that it has been crazy hard but I have had so many complications that I can't yet determine if what I have been going through is actually menopause or inflammation. I feel like my entire body is inflamed and on fire all the time. It is not like a hot flash either it is a steady burning type pain that lasts for hours if not days.

It all seems to have stemmed from me losing feeling in my arms in August 2014. My arms were swollen and I could not bend my fingers or elbows for an entire month. It was excruciating. At around the 3 month mark I finally got some of my feeling back and the pain was a lot less severe but not totally gone. It took 3 months for me to get a CT Angio, MRI and nerve testing done. The only thing that was done within a couple of days of onset was blood work to check for RA but no other inflammatory blood work was done. Over the years I have had multiple inflammatory elevated blood work but because nothing stood out and my ANA came back negative nothing further was being done. I have some sort of inflammatory disease this I know and I am sure of. It now is up to me to find a doctor to listen. My doctor was supposed to send me to a Rheumatologist since I haven't been to one in 20 years since being diagnosed at 17 with Fibromyalgia. That being said I am going to have to follow up today.

At this moment I am back on Cymbalta 30mg a day to help with the "Fibro" pain and anxiety/Panic. Funny enough it is helping with some of the inflammation and it has calmed down the nerves that are shooting off randomly all over my body so that is a plus. Brain fog however is at its worse. Is it the med or menopause I have no idea but it is not a good feeling. I could be driving and all of the sudden start to panic that I have no idea where I am. It is like I have never seen the street I am driving on which I have driven on for years. It is a scary feeling as I am not on any HRT and I always worry about early onset of dementia. I am just not comfortable going on one because I am not having side effects from the Hyster or surgical menopause which I find very alarming to be honest. I don't sweat at all and my nose is so dry. These are not new things but they seem to be worse now than before.

The one thing that hasn't changed is my bowels. I am more constipated than ever so I am continually trying to find out what makes it worse and obviously any drug I take makes it worse even if I am drinking 4 ltrs of water day and my diet is great. It will take time and patience to deal with this. The other issue is my bladder. I am thinking right now I have severe pelvic floor dysfunction and since taking Cymblata it has definitely calmed down the spasms I have been having. It has been hard for me to walk without feeling like my bladder is going to drop out. The pain and pressure I feel is only on the right hand side so not sure what is causing that. When I walk I feel like its really heavy and it makes me feel like I have to pee again. That started about 6 weeks ago but like I said got better the last week since being on Cymbalta for a month now.

I am over the hump of bad side effects of Cymbalta for the most part. So that I am glad about because it was a rough painful ride. I am also waiting to see if my drug plan covers this med and I will need to know soon as I only got samples for 3 months and if I don't have them it will be torture. This drug is very strong and coming off it like that is 2 weeks of the worst days of your life. So here is hoping it will go through.

Am I still happy I had the hysterectomy? Yes I really am. I am confused as to why I have not felt like I have been induced to menopause though. Why am I not having all the side effects that others are having? The arm pain for me isn't something new as 2 yrs ago I lost feeling in the left arm. The inflammation has always been there its just been worse since the hyster if anything. So is that all I get from this? Inflammation? Should I be expecting something more after a year is done or is this it?