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?