Best Endometriosis Blog 2016

Tuesday, July 29, 2014

Some times you just need to laugh. #firstmoonparty #commercial


I saw this video a while ago but it makes me laugh every single time because it is so something I would do to my daughter for a laugh LOL.. 


Monday, July 21, 2014

10 weeks post Hysterectomy


So I thought I would document what has been going on since my hysterectomy since many women look for the pros and cons of having one. I will mention again that I had mine for closure. That being said I should say some weird things have happened since the surgery. 

  • Wrinkles. UGH! I can't believe it I look all wrinkly all of the sudden. My face and toes are mostly effected but to me I looked so aged unless I just never noticed it before LOL.
  • Black Eyes. What is up with that? I look in the mirror and all I see are bags and blackness. I mean if I didn't put on mascara and eye liner I would look like I am near death.
  • Urination. Well this one was a problem before but it seems as though I still have not regained the strength to stop urine from coming out after I am done. I could walk around for like 5 mins then more comes out and I can't stop it. It drives me insane. My bladder is already damaged and I have experienced this before so I am assuming it will be something here to stay but time will tell.
  • Bowel Movements. It took me around 6 days to have my first one after surgery and that was with stool softeners and lax-a-day. Now I can tell the difference with what was bowel pain and what was uterine which makes it easier to deal with. I am still constipated but not as bad but still get pain not so severe and thank God the rectal pain is gone. I am thankful the rectovaginal nodule was removed. 
  • Sex. Well I wish I could say this has gotten better but no can do. The pain is still bad and I am not sure if it is because part of my vagina was removed when the rectovaginal cyst was excised or if it takes time for the vaginal cuff to heal. Time will tell with this as well but all I can say is no way, not any time soon as it is just too painful.
  • Hormones.I must say that I am lucky not to have gotten a lot of the side effects as others have but I do get hot flashes about twice a day. They don't bother me though as I like being hot. The cold flashes I had at first were so unreal. I have never experienced something so crazy cold in my life. I could not get warm if my life depended on it. I am on nothing right now as far as an HRT is concerned as I am still trying to figure out when would be a good time but honestly I just don't want to be on any. I know that probably is not good for my bones or mental state but I wanted to try not taking anything. I do have a new book called Natural HRT which I have been told is the bible to some. 

I was also told this book is good for women that have gone through surgical menopause

  • Dryness. I have become so dry on every level but especially inside my nose. No matter how much Vaseline or Polysporin I put up there it just keeps getting dry. 
  • Depression. I have to say this was the hardest of them all. I finally came off prozac because I feel it was making me worse. I was suicidal with major depression and I couldn't tell what was causing what. I think it will take a while for it to be out of my system but I feel so much better being off it. 

So I think the only thing I did that I shouldn't have done was lift something. At this point I am in a lot of pain. I am hoping it is nothing but its been two days and showing no sign of getting better. I will give it a week if it doesn't improve I will go see my doctor. 


Until next time Spoonies :)





A New Way of Thinking?


Today has been a good day. This picture above shook me to the core and made me realize that it wasn't me that wasn't capable of loving it was the others that I put in my company and allowed them to tear me down. This made me want to start the next part of my journey in life and I am ready. I really hope you all have the most amazing day because I know I will :) 

Thursday, July 17, 2014

Complex PTSD & Endometriosis


Here I am finally posting for what seems like forever because of what has happened to me in the last week or so, but I thought that I should write because I want to update you all on recent things happening since my hysterectomy. 

For those of you who read my blog regularly or interact with me over social media know a lot about what I have been through, but this one particular set back is something that I recently had an epiphany on. I have always had depression but I only found out about a couple of years that I have had major depression disorder since I was 17 and I found this out when I asked for my health records. Not one doctor ever told me this and this information would have saved me much heart ache because for years I thought I was going mentally insane. 

I was diagnosed with Complex-PTSD (which my therapist said is like Chinese water torture) early this year and at first I was not really understanding how it could really effect me and was looking for other answers because I felt that it couldn't just be that because I was losing my mind and I knew that something was wrong....really wrong. I suggested Bipolar and Aspergers multiple times out of desperation to my doctor but no one ever seemed to listen or they told me not to look for "Labels" as if I wanted to be mentally ill. 

I noticed that I started to decline mentally and physically around 3 years ago. I chalked it up to my job and the bullying and abuse that took place as well as my health which was rapidly declining not to mention I lost my job of 10 years. I thought that once my surgery was over things would be a little better and don't get me wrong I am. The physical part I feel 80% better at this time in my recovery and just deal with the bowel pain and urinary at a lesser pain scale than before. The mental part? Holy crap! 

The craziness started to get really bad in January of this year, to the point that I felt that I was outside of my body and I was sick every single day either with nausea, Endo pain, Fibro pain and mentally feeling like I checked out of reality. Weird things started to happen around May before my surgery. I remember holding a wine glass and I didn't know I was squeezing so hard but I shatter the glass in my hand because I was so tense. I also noticed me squeezing the steering wheel so tight as well and thinking that I was losing control. I could no longer think straight, I had visions of slashing my wrists, opening a bottle of wine and drinking it from the bottle at my daughters summer camp. The visions were so real and so vivid they were scary. 

I checked into the hospital because I tried over and over again to call my therapist over a 2 weeks span but nothing. No return call, no appointment so I had no other choice. I told them I needed to be locked up because I might hurt myself and I can't predict the outcome of what I was feeling and thinking. He took what I said seriously and I was put on Seroquel and slowly started to come off the Prozac. 

The med I was given helped dramatically but I was still feeling like I was in some manic anxiety state along with being disassociated and that I just could not get out of of that cycle. Recently I googled "Complex PTSD" and I think it was "untreated" and I came across this site http://www.bullyonline.org/stress/ptsd.htm   

There was so much information on here that I realized that not only was the bullying in the workplace part of the complex PTSD but that I was having a stress breakdown which happens when PTSD is left untreated. 

So if I look back on my life there was early childhood abuse all males, Domestic abuse (all males) workplace abuse (All males and one female) and 14 years of medical trauma that I was put through.  Throw in a job loss and a radical hysterectomy and this is where I am at. It is insane yet I do see the light. I see everything so clearly now. I really don't think my hormones really have a lot to do with what I am feeling like because I truly believe that its the CPTSD. I fear men, controlling people, abusive people, manipulative people, angry people etc. I live in constant fight/flight mode because I have to protect myself and only I can do that. 

My relationship with my husband has been rocky to say the least but I realize now that it is because I don't trust him. I have major triggers with him because he gets angry and raises his voice.. which is actually rare, it startles me and I start to panic. Same with doctors appointments. I just don't want to see another doctor again, I have no trust in them whatsoever esp male doctors. I am so over traumatized by abuse and neglect that I have built this wall around me that no one can enter. I don't want anyone in. Sad I know. 

I feel confused because there are times that I feel my husband is toxic for me or he is what I need to get over this and move on with my life. He is patient, kind, caring and understand and he never pushes me to do something I don't want to do. I have been able to express myself when it comes to control and boundaries in a way I have never been able to do before and I think that might be why I am mentally checking out. The stress of even talking or thinking about everything that has happened to me is bringing me to a breakdown. 

I guess the one thing I am happy about is that I am not working so I can recover but it doesn't stop the stress of not having a job especially in this economy. 

I think I have hit the fork in the road where sunnier happier times are ahead for me. I have never seen it so clear but I am afraid its just my mind hoping for something better to happen.

I know this isn't just about Endometriosis and my life is different than most but there has to be some link to complex PTSD and lack of medical intervention and diagnoses. 

What do you think? Have you been diagnosed with something that you feel is directly related to Endo? 

Sunday, July 6, 2014

8 Week Post Op Update-Endometriosis/Hysterectomy


When I think of my insides I think of this picture. It best describes what my insides were like when first diagnosed with Stage IV Endometriosis in 2007 and most likely what it looked like this time around 8 yrs later.

When I had surgery in 2007 I had a lot of surgery done and it lasted 5 hours. I felt very confident in my surgeon and I was too naive or uneducated to think it would grow back since I had the best surgeon. At that time I had a PSN (Presacral Neurectomy) done along with deep excision of Endo in the pelvic wall, removal of a rectovaginal cyst, removal of a 5 cm Endometrioma, tons of scar tissue and endo removal from the bladder and sigmoid colon. It was everywhere. 

When I had surgery in 2013 after battling for someone to listen to me for 3 yrs and being treated as a guinea pig I finally had another surgeon that would operate since the first one said I was too high risk, that it was neuropathic pain syndrome not Endo, and told me if Lupron didn't work it wasn't Endo. Well she went in and before the surgery I didn't feel the confidence like I had with the prior surgeon, however she was at a pain clinic and trained by my surgeon so in reality what could go wrong right? Before I went under I had signed off on a hysterectomy if things got to complicated. I woke up feeling like she did nothing and maybe I was losing my mind because I was told by her intern that it was only superficial and that the right ovary, tube and ureter were stuck with dense adhesions into the pelvic wall and that she "Got all she could" leaving endo on the bladder. So for me I was thinking "Well maybe the Marvelon worked for those 8 yrs and maybe it suppressed the Endo and that it maybe was Neuropathic even if the nerve meds did not help. I was peeing 60x or more a day before this surgery and having to use an enema 3x a week in order to have a bowel movement. I figured that there wasn't really much and removing the carbon residue from the bladder flap seemed to have helped the bladder and removing the adhesions helped my bowels although I still had rectal pain. 

Fast forward to May of this year when my first surgeon agreed to excise all the Endo and do a radical hysterectomy I honestly was taken back to learn what had been done and how so very wrong I was with what the surgeon before said. I think that is why it has taken me so long to write because I just can't believe it. I woke up in severe pain and my catheter was filled with blood for 8 hours. Around 5 hours later they removed the catheter in which I begged them not to and then within mins I was in excruciating pain because I could not pee. That went on for about 30min before the nurse would put the catheter in just to drain my bladder. Another half hour later I couldn't go again and I begged for them to please put it back in, and finally after phone calls to the urologist they did and I went home with it the following day. I went back to the clinic after 3 days to see if I could have it removed but I still could not go and I was having major spasms still. During that time I asked them to look at my stomach as I had blisters everywhere which happened to be from the latex bandage they used over the strips. I still am scarred from them unfortunately. So since I couldn't go I was sent home with the catheter for another 8 days. It was horrible but it most likely was for a reason because I would never have stayed in bed to recover. I was told to come off the bladder meds (Myrbetriq) by my urologist about 2 weeks later so I did and sadly enough my bladder symptoms continue. I was told to monitor them once a month for 3 months to see what the input and output is. 

So in June I went to my post op appointment only to be in shock with what was found. There were multiple small fibroids, a cervical polyp (Benign), rectovaginal Endo, right ureteosacral ligament nodule, deep infiltrating endo of the sigmoid colon, deep bladder Endo and massive scar tissue on the right side. I had to have my pelvic lining removed I assume because of the deep infiltrating endo as well as the ureters that were embedded into the pelvic wall, when I asked him if it was because of the ureters he said yes. I also an upper vaginectomy to remove the Rectovaginal nodule. I had focal Endometriosis in left fallopian tube, left ovary as well as the cervix. I had a modified radical hysterectomy but I am not quite sure what modified means unless it has to do with the vaginectomy that was done. He had put stents in so that my ureters wouldn't be damaged and that is most likely why I was bleeding blood for that long also another cystoscopy was done to rule out IC (Interstitial Cystitis). He also did a Enterolysis to make sure there wasn't a bowel obstruction as I have massive scar tissue that always sticks to my 3 inch laparotomy scar from when I had a bowel resection when I was 7 yrs old. I was actually shocked that I didn't have Adenomyosis to be quite honest but this explains it all from painful bowel movements, sex, pelvic pain and urination. 

So that being said with all that was found and what was missed in the last couple of years I can't express to you enough that finding the best top surgeon that excises to operate. Make it count. Mine is the best in Canada however I still feel that if rectovaginal Endo, sigmoid, and bladder recurred again either I have aggressive Endo or that it was not properly excised in 2007. He said it grew back and I am not sure what to believe as I think its quite possible that he didn't remove it all the first time and it kept on growing. I know that the endo went down to the nerves so I am thinking in 2007 maybe he was afraid to cause more damage and go deeper. I am also believing now that I do indeed have Neuropathic pain syndrome because of damage from the Endo, something I would never have believed before. 





Depression, Panic, Suicidal thoughts and Anxiety


Well its been 8 weeks already since my surgery but I have not been mentally prepared to write a blog post to update or take in what happened.  I can't believe that it has taken me this long. I feel all over the place and I am not sure if it is from the hysterectomy, the meds or just in general not having a job but I am in constant panic mode with extreme anxiety. 

Last week I ended up taking myself to the hospital because I was having so many thoughts of slitting my wrists. I have had suicidal thoughts in the past but nothing like this. I wanted to cut my entire body and kept contemplating on where and when. I had enough and I needed to find out some answers. 

Before going in to have the hysterectomy I already suffered from Complex PTSD, Major Depression and anxiety so I expected for some of this to happen since I am already prone to the mental aspect but to this degree I didn't. 

Every time I went to my doctors to tell her it was getting worse she would just up the prozac and I am pretty sure the suicidal thoughts were from that rather than the hormones. So at the hospital the on call Dr. gave me Seroquel and told me to lower the prozac to 20mg and I have and thank God the panic has gone since taking it. I don't even have to take it if I am not having one and so that is good. I used it the first week then barely any time since. Has anyone had this reaction to Prozac before?

People sometimes will never understand the pain and suffering Chronic pain people go through and its more the mental aspect for me than the pain. I have been sick for almost 25 yrs and that on its own is depressing. Every day I wake up and I am the same, no quote on earth could make me believe that things will get better but I have no choice but to make myself believe it and to get busy living.

My heart goes out to every spoonie going through so much, we certainly are a strong band of brothers and sisters.