Friday, November 28, 2014

#Givingtuesday #unselfie #EFA

We should always give to charities in need and Endometriosis is one of them. Here is something the EFA is doing to raise money. 

"Did you know that on December 2nd, your $10 gift to the EFA will be transformed into a $40 donation because of pledges to match donations for#GivingTuesday? Thanks to our co-founders drseckin and Padma Lakshmi, and Board Member Jennifer Hieber, your support will go even further!#GivingTuesdayEFA."

Find out more about how you can donate and help the cause and share your #unselfie to raise awareness here

#Endometriosis #Poem

The Devil within

I woke up one day and everything changed,
The life that I knew of was now so strange.
The pain was intense it brought me to my knees,
What was this pain that just wouldn't ease?

The doctor said it could be a cyst,
And the word Endometriosis came from her lips.
What was that? I just didn’t know,
Nor did my mother so we just let it go.

In fetal position on a cold hard floor,
Is where I laid pleading for the pain to be no more.

Months turned to years and tears turned to fear,
No one could answer why my pain was so severe.

It felt like a knife was jabbing me inside,
My rectum was suddenly the new pain that thrived.
IBS was what I was told but I did not believe,
Another diagnoses my mind could not conceive.

My mind was drifting into a hole I could not escape,
The further I got I was convinced this was my fate.
The trauma from the neglect and even the fighting
After 14 years death was inviting.  

Doctor after doctor there seemed to be no end,
The treatment I was asking for I had to defend.
No one believed me and I hung my head in shame,
Did they think that I wanted this or was playing a game?

I finally got to the place I needed to be
Within seconds he told me what others did not see.
Endometriosis was there on my bowels and my bladder,
Sadly it had destroyed all things that mattered.

Years had passed and the disease still kept growing,
My surgeon was good but it just wasn't showing.
I finally convinced him to do what was right
Remove all my insides and all Endo in sight.

I finally have closure from the terror and the pain,
But my mind from the trauma will never be the same.
I still see the darkness but not the same as before,
Because day by day I see the light more.

@EndEndoForever (The Faces of Endo)

6 Months Post Hysterectomy

I can honestly say that at the beginning of this year I felt helpless, in pain and hopeless. There was a part of me that just wanted to give up entirely. Endometriosis stole a good portion of my life. I suffered in the hands of the medical system. What makes my journey different, is that in Feb of this year I stood up and said "enough is enough, you're going to listen to me if you like it or not and no I am not taking any more medication!"

I know that a hysterectomy does not cure Endo I say it enough to many people, but for me it was closure. I suffer from C-PTSD and I believe without a doubt a good portion of this is due to the lack of treatment and care for pain I was in for 14 yrs. I was dismissed so many times and made to feel like I was a mental case and if I could go on stage and stand in front of the 40+ doctors that shunned me and made me feel like I was exaggerating my pain I still don't think I would get the mental closure I need from the trauma I experienced.

That being said here I am now 6 months post up and when it comes to Endo and all its sides effects I am doing 100% better. I am not trying to brag about it nor do I know if in a years time I will be the same but at this moment I feel vindicated.

Since surgery in May I have not had too many side effects from surgical menopause. I have about 5 hot flashes a day but I notice I get them from drinking coffee, wine or sudden temperature changes. I have gained around 10 lbs and that is frustrating but at the end of the day who cares. One thing I have noticed is ageing. I look in the mirror and I don't know who I am any more. I feel like I have aged 10 yrs and again, who cares. This disease is relentless and if I can have pain free days from Endo then I can accept the changes that are physically happening due to hormone changes.

One of my big fears have been migraines. I was on the BCP for 8 yrs continuously and only had one migraine during that time and before I was on the BCP I had had them for over 10 yrs, going from Aura, to cluster then to complicated. So I can only assume mine were caused by hormone fluctuations but I am not sure if it was actually estrogen or progesterone as I react very poorly to progesterone.

Bladder changes have kind of stayed the same however I do leak. UGH. I had a lot of bladder and ureter work done so it is expected. My bowels have been touch and go. At first I didn't feel much change but I could totally see the difference now between uterine and bowel pain. Lately I get pretty bad bowel pain and I am constipated but that is nothing new and to be honest I really never expected that to change.

When it comes to my emotions I feel that my case itself is so complex that I can't really gage if its menopause or C-PTSD. I am all over the place. The other day was a bad day but I told myself that I needed to go to sleep and tomorrow would be a new day and it was. So I expect in a years time that maybe things will change in this department.

Overall I am happy with my hysterectomy and the choice I made. It took me 5 yrs and lots of research and even seconds from being put under I still had my doubts. I always sat on the fence. 50/50 were the odds pretty much after you do so much research. I didn't know what I would feel afterwards when it came to menopause and I think that scared me the most. Would it have been for nothing? Would I still suffer after if not more? The answer for me is that it was the best decision and I am extremely happy with the outcome.

I will continue to update because I think it is important to document the journey years after having a hysterectomy because everyone is different.

What are/were your biggest worries about having a hysterectomy? Why do you think it will help you?

Thursday, October 9, 2014

Come out come out where ever you are..............

It has been some time since I have posted. It has been a rough, rough, rough 5 months since my Endo surgery + hysterectomy. I battled all the emotions I never thought even existed. I was so low I could barely even function properly on a day to day basis. 

The first two weeks after surgery I had really bad hot and cold flashes. One of the hot flashes I had I thought I was having a stroke or an aneurysm it was so scary.  It just consumed me and it started from the waist up out of no where. I was not even hot, It was almost like something was taking over my body like some huge rush of something. It went all the way up to my head and again I still didn't feel hot I felt panicked, and I felt like my face was on fire but I wasn't feeling like it was a hot flash. I know that I am not explaining it quite well but it was something I can't explain. 

I had two cold flashes and I thank God they never happened again because I was not expecting those nor did I hear of them prior to all the research I had done. I would awake as if I was lying outside in the middle of winter with no clothes on. Nothing could get me warm. I tried multiple duvets with a heating blanket and it didn't even touch it. I felt this lasted longer than the hot flashes did. 

Here I am 5 months post op and I have about 5 hot flashes a day and I am so lucky because they really aren't as bad as they were or how bad they are for others. I am having overall major body pain and I have yet to start an HRT because I wanted to wait at least 6 months but I am even now thinking I want to hold off and not do it. I am still researching on what I want to do. 

At the beginning of August I awoke to my arms numb and swollen with severe pain. It has been two months and it took a good month for the swelling and numbness to go away and now I am left with tingling and numbness and awaiting a CT scan. I am not sure why this is happening. I thought possibly it could have been a side effect of surgery due to positioning when they are operating on you as I have heard of many people getting frozen shoulder after surgery so I still do even know what is going on. 

I should say that for me and my life, if its not one thing its another. 

Well I am all caught up for now... Oh ya, one more thing... I started a new job two weeks ago :) 

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   

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. 

Tuesday, June 3, 2014

Hysterectomy Post Op Update

It is almost 3 weeks since my total hysterectomy & BSO along with excision of rectovaginal Endo, scar tissue as well as a bladder resection and thought that I should update everyone as to what I am feeling, how I am recovering and most of all do I have closure. 

I have to admit the first 11 days were brutal with the catheter and the pain after from the urethra was not a pleasant feeling either. I still feel some urethral pain when I pee so I am hoping that is just because my body needs time to recover from all that was done. I see my urologist on Friday to update on the med I am taking however I find it weird that he wanted me to start the med a month before my surgery and see him 3 weeks post op. How do I really know what is working? Either way I am not sure if that pill is even helping much and should probably stop taking it and see. 

I am still taking lax-a-day instead of the stool softener more out of fear. I think I will continue for another week then stop. I can only hope there is not sharp rectal pain but time will tell.

I started menopausal symptoms right away however I could be confused about the side effects of the Cipro as some of the symptoms were the same. For the first week I was getting cold flashes. I did not like those one bit and one time while waiting to pick up my daughter I thought I was having an allergic reaction but it was a hot flash and that was scary. Some of my symptoms overlap with Fibro so I can't always be certain what is causing what. I was getting headaches for the most part which I think was because I stopped taking the flexeril for my jaw and must have been clenching down so hard from the pain in my sleep. So I took it last night with a sleeping pill and my jaw is in less pain thank god. I have lost my appetite however it might be that I am busy running around. 

To be honest since the catheter came out I have been running around all over the place trying not to focus on Endometriosis and it has helped. I feel the closure I was looking for mentally. I know I made the right decision and I am happy about that. 

Wednesday, May 21, 2014

Free The Pee #Endo #Catheter #Bladder

If you have never heard this chant "FREE THE PEE" then you haven't seen Bridge to Terabithia. It is a great movie as well as an inside joke with my family. 

On May 9th I had surgery and I knew there was going to be bladder work done as it wasn't removed from the last surgeon so it continued to grow and wreak havoc. My fear was the catheter being pulled out too early and from experience the catheter has been the norm for me since the birth of my daughter in 2003. 

When I had her they used an epidural and it froze my bladder. I had just pushed out a 7.1lb baby and I was swollen and sore along with a yeast infection. The pain was unreal and I tried everything to go but I couldn't so they had to catheter me. So after 9 nurses held me down and me having a panic attack it was in. That day I will never forget nor did I think it would happen again. 

June 2007 I had my first surgery for Endo with a Top Specialist. It was 5 hours long and it was deep, it was everywhere and there was damage. When I woke up the catheter was out, after recovering for about 30 mins after awakening I had to pee and I couldn't pee. They lifted me up on to a bed pan and I could not go for the life of me. I begged and pleaded for them to put the catheter back in but they were ignoring me like I was making up the pain not to mention I just had a major surgery. I ended up having to stay in the hospital which was horrible however the catheter came out the next day and although I could never full empty my bladder I told them this is normal for me and to let me go home. 

Over the years my bladder started to get really bad. At one point I was peeing 60x a day, it was so painful, and there would be times I would vomit from the pain or the urine would come out with no sensation. It took me 3 yrs to find a surgeon to help me and that was someone from a pain clinic that was not an endo specalist and after a year of 3 strong meds to finally convince her to operate. 

In Feb 2013 I had surgery again with the pain clinic gyno. The deal was to remove the endo and scar tissue and if there were any complications remove it all and there would be a possibility of an open surgery. This surgeon caused me so much panic but I had no other options. The top specialist wouldn't operate a top urologist wouldn't give me meds and said it was from Endo and not IC so I was left with only this option. She got in there removed endo from the cul-de-sac and carbon residue from the laser used in 2007 off the bladder flap, but things got too complicated and she left endo on the bladder, nicked my uterus and closed me up. When I came to the only pain I had was my vagina. I was in shock and listening to what happened during the surgery it made sense to have no pain, she said the Endo was superficial and it was complicated however this is something we talked about. Long story short I was not in pain I could pee and she did a horrible needless surgery. 

Finally I was fed up. The pain was just too much and I wrote a letter to my First surgeon (see here) on Dec 24th 2013. In Jan I got a call from his office him wanting to see me about a misunderstanding. I know what I heard and I did the Lupron like he told me to which did nothing and I was disregarded and told that my pain was pretty much not real that it was Phantom pain (Neuropathic pain syndrome). I went to the appointment and this time it was different. I didn't care any more I wanted it all out and he was doing it and it was going to be done right. Thank God his intern was my advocate because I broke down and tears and I was just done mentally and physically from all of this. I ended up losing my job later and getting a call for surgery.

On May 9th I had a radical Hysterectomy removing everything as well as bladder resection, stents in and taken out during surgery, My ureters had to be peeled off the pelvic wall and I think the only way to do this was to remove the pelvic lining but that is something that I will ask in my follow up appointment. He did a cystocopy as well as rectovaginal nodule resectioning and scar tissue removal. It was only 2 hours but it was extensive and I woke up in utter pain and not medicated properly. I had blood in the catheter for about 5 hours and was sent to a room after 2 hours in recovery around 5pm. At around 8:30pm they removed the catheter after many pleads to not do it yet. I felt my bladder having spasms and I knew I wouldn't be able to pee not to mention my entire right side of my pelvis was numb. She did it any ways. After an hour I could feel the pain starting and the sensation to have to pee but nothing came out. I told her this and she told me to keep trying and get back to her. After a half an hour of all the tricks I have used in the past to pee nothing helped. She called the urologist after 1.5 hours and he told her to put the cath in and remove the urine and get me to try again and if I couldn't go to put the cath back in until the following day. So another 10 mins I felt the pain again this time more intense and the urologist came in and told her to cath me. Finally at 10pm I was cathed and given more pain meds. It was so painful I could not even think straight. 

The next day the surgeon came in and told me I had a choice to stay overnight or go home with the cath come back on Tuesday which was 3 days away and because I got no sleep I said I wanted to go home. It felt so good to be in my own bed the first night and by the time it got to Tuesday I honestly felt it wasn't going to happen. I was in so much pain vaginally and with urethral pain. I tried first and gave a urine sample, I could barely even get 1/3 of the cup but it had to do. So I drank more water. I was there for 3 hours and could only out put 100cc at a time 5 times with 900cc remaining in bladder. They said I had to go back home with cath in until the following Tuesday. I was so upset I was crying. I had a yeast infection so I was given a script to help that and I had already bought the Dufflican because I knew from the last cystocopy I had that I got one so I played it safe. So I took it already when the itching started. 

I got a call back about 3 days before I was due to have the cath out asking if I had gotten the antibiotic and I said no. Well it turns out I had to different bacterial infections and was given 7 days of Cipro a strong AB to kill both. I still have yet to take another Dufflican until I have finished this med. 

So I go back on the Tuesday and thank God I was there early as I got to go in at 7:30 am and try. I felt good I was so pumped up to "FREE THE PEE" and pictured all my supporters and friends saying it for me. My bladder did not seem like it was having as many spasms however I was also taking Flexeril a muscle relaxant I use for my jaw so maybe it helped. The first attempt I could only go 50cc and I was devastated I was not going home with this in no matter what.  So after 3 hours I went 200cc than 250cc and I told her I am good and going home. Thank God they let me.

Since the catheter was in for 11 days I think it helped calm my bladder along with the flexeril and Mybetriq (over active bladder med) however I am still in intense pain and I am losing bladder function so I hope it changes sometime soon. I see my urologist on the 30th of May so I can update him on what has happened and maybe get some antispasm meds or see a therapist who deals with Pelvic Floor Dysfunction because now I am positive that is what I have and not IC. I will make sure to update after that appointment. 

Thank you for all of you who were with me during this time to support me when I was in the hospital and at home. It was a horrid experience but I know that other Endosisters were going through even harder times so I have to be thankful it wasn't any worse. 

Have any of you had bladder issues after Anaesthetic or surgery?

#WonderWoman #Chronicpain #spoonie #female

I consider myself a very powerful female in a society that still sees women as the weaker sex,  housewives, baby makers and also very submissive. It is hard to voice your opinion being a female in a man's world. Women have had to overcome many obstacles for the generations next to come and I thank all the women before me that have helped push equal rights for women. Yes we have come a long way but after watching "THE UNTOLD STORY OF AMERICAN SUPER HEROINES" as well as " MISS REPRESENTATION" I realize that women may always be seen as sex figures with no power. 

I am saddened to see this as I am a type of person who questions everything and I believe in justice. I wouldn't say I am too opinionated about much however growing up in a home where women were view less equal only made me stronger and gave me the power within to make change. I am one person however though social media I have been lucky enough to find so many powerful women out there that I am proud to call friends. The reality is that women are the stronger sex and it scares men. I think sometimes Women's lib started to build a generation of lazy men who sit at home and expect the women to be the parent, the wife, the friend, the bread winner etc. It isn't like we are making more money but more jobs are opened to females now than before so I feel that men have taken a back seat and to me this is scary. I believe in equality and I believe the best person gets the job not the colour of your skin, religion, sex etc. The best gets the job but that isn't happening anymore and I truly believe women are so worn down by having to work so hard when the generations before women stayed home. 

Me being a chronic pain sufferer as much as I hate the notion of being the woman who stays home I would gladly take that option right now as I know even doing this I can still be empowered as I have a husband who knows the power of my soul and he knows I can't be stopped. I think who you are married to and who you are friends with definitely play a key role on how to live the life of a true life "super-heroine" 

I can see my traits in my daughter and I know it will help her but also hinder her in her future. My daughter is a lot like me which in turn could be a good thing but it also can be a bad thing. I let her dream big and I don't shatter her dreams like mine were as a child. She tells me she wants to be a designer of gymnastics apparel and you know what, I can see it happening and even if I didn't why destroy a dream that seems so real to her? She has the power to be anyone she wants to and I know that she will do it well. 

Sometimes having this power brings on depression, which it has for me but I suppose a lot of that has to do with medical issues my entire life as well as rejection. I have had to fight for everything I have in my life including my health and I am tired as I have done 80% of it alone. Sometimes being a Super-heroine is so tiring and at times you feel like you should dumb yourself down to please others.. But I will never do that. 

I don't see the strong person in me that other people see but I must be if a lot of people say that. I have been through hell and back and I am here ready for the next door to open. 

To all my Super-Heroine women I have had the pleasure to know in my life I thank you for showing me how strong you are as it helps me to continue this fight. You are all amazing and I am in awe of how amazing and strong you are. :) 

Saturday, May 17, 2014

Post-Op Hysterectomy & Endo Excision update

Photo credit: Sarah Al-Hage

My journey has been long, tiring and painful. This picture above was drawn by a fellow Toronto Endosister and it describes how I spent most of my life battling this disease. The picture is powerful to me and I just had to buy it. See her work here LINK

On May 9th I went into McMcaster Hospital for a radical Hysterectomy, cystocopy and Excision surgery for Endo. I was told that I would possibly need a bowel resection and stents put in during the surgery so I was prepared. I was nervous the couple of days coming up to the surgery and started to get really sad that I would never have any more kids and that this was it. Although in my mind I was prepared for that over 5 yrs ago and I was at peace with it until a couple of days before. I started to question everything even the surgery itself. Thank God I had many Endosisters talk me through those days leading up to the surgery because I was about to back out of it last minute but finally found peace.

My 23 yrs leading up to this day consisted of tons and tons of medication as well as medications for the side effects of the medications, doctors visits, tests, surgeries and if it wasn't for my furbabies, my daughters undying love for her mother, and a husband who has stood by my side through sickness and in health for 4 yrs, and a hope inside me that one day I could go on with my life at least with minimal pain in my life I think I would have ended my life a long long time ago. I am a fighter and no matter how many obstacles have come my way including work issues and lack of understanding, friends who disappeared, and life full of suicidal thoughts I stood tall and I smiled as much as I could.
My mother drove me there and the surgery was expected to last around 3 hours. He has to allot more time just in case of complications. I remember all the people that were apart of the team and how they all had a certain job to do. My fear for my jaw being broken while tubing me became less and less. I walked with the team in the OR which I do remember doing at my last surgery but not the first one. I was lying on the table everyone asking me questions and hooking me up to all these machines and leg lift device. Right before it was lights out for me my surgeon said "You did do a bowel prep right?"... Oiy... This is what bothered me the most because no he didn't tell me I just did it because I had bowel issues. In 2007 I had my first surgery with him and it was never mentioned however in his reports it said "Discussed bowel prep with patient prior to surgery" in which he did not. I am glad I did my research and knew better. 

When I came to around 3 pm I was in extraordinary pain and nothing they gave me helped. Most of the pain was vaginal so I was thinking that there was Endo found in my vaginal wall. However that was not the case. I heard the nurse mention the low dose I was given of morphine and listened while she freaked out on how it must have been a man who wrote this amount and that anyone with half a brain would know that with all I had done to me during surgery I should have been given 4 times that amount that was written down. So that being said I started to get pumped full of meds for the next 2 hours until the pain was somewhat under control. They wouldn't give me water and I was so dehydrated but gave me a popcicle in which I threw up minutes later. I was cut off from anything to eat or drink and it was horrible.
I finally got to my semi private room around 5pm. The pain was unbearable and their was tons of blood in the catheter and the information my mother obtained from the surgeon was what I was expecting to get from her LOL.. Us Endo patients know what to ask so and I feel bad and I am sorry to my mother because I said to her something like "are you kidding me you didn't ask anything else, this is all he told you?" hahah.. I was so out of it mind you but I knew before I left the hospital I would have some answers. All he told her was that there was more endometriosis than expected and a ton of scar tissue. To be honest I was shocked about having more Endo because my surgery in 2013 she said it was superficial and there wasn't much and he trained her... SCARY..

So my amazing mother stayed until my husband got there around 7:30pm dressed up in their "Endowarrior shirts" God I love them and it was so awesome to see that, it almost made me cry. I was so out of it and in pain that in a way I wanted them to go home but I know my husband wanted to be there. During this time they took out the catheter, in which I begged them not to do because I knew I wasn't ready (Gut feeling from past surgeries) Anyhow they finally went home around 8:30 and by 8:45 I was in extreme bladder pain. I could not pee not matter how I tried and trust me I have so many techniques to help me pee that work for the most part but nope not at this time. So the nurse came back in and she kind of didn't believe me and I wanted to punch her in the face. She kept leaving and finally she called a urologist who suggested emptying the bladder and trying again. So she did and it happened again. The urologist came down saw the problem and told her to put the catheter back in. I was in tears in so much pain and the thought of another catheter going back in just gave me so much anxiety as I hate them. Finally with it back in and more pain meds I started to eventually feel better once my bladder emptied into the catheter and the spasms lessened.
I did not sleep at all in the night as the pain level was at least a 7-9 out of 10. I didn't have a morphine drip like I did in 2007 I had 2 oxy pills that didn't touch the pain and then 4 hrs later 3 extra strength tylenol and a toradol (Which is similar to advil) Around 4am they told me someone was going to be sharing the room and I could care less I just wanted to sleep and for the pain to go away. This poor pregnant girl comes in and goes to the bathroom. I kid you not that girl peed like she was a race horse and I got so irritated at the length and power of that pee LOL.. I am like are you kidding me right now I can barely pee and I am so jealous right now!!.. 

The next day around 8 am my surgeon came in on a Saturday with his street clothes on and updated me on what he found. I was most shocked about recurring Rectovaginal Endometriosis if I am honest, I had rectal and bowel pain for a long time and didn't expect for it to come back there since its rare to recurr. He also said that there was massive adhesions which seem to grow in that same area up under my rib cage on the right side due to a laparotomy I had when I was 7. The surgery he said only lasted 2 hours and that he removed everything including endo on the bladder flap again, on the bladder and that stents were put in and removed so that my ureters wouldn't be damaged as he had to peel off the ureters from the pelvic wall because they were adhered along with my tubes and ovaries. He then told me he removed my pelvic lining due to Endo as well, which I can only assume grew back because it was so deep in the pelvic wall during my first surgery in 2007. That is all the information I got but I know they are testing the ovaries and uterus that they removed for Endo as well as Adenomyosis. He also said the cystocopy came back showing no IC but I have all the symptoms for it. He told me I could stay in the hospital another day due to the catheter issues or go home with the catheter and come back on Tuesday for it to be removed. I chose to go home, I needed my bed.

Right from the get go I felt so uncomfortable with the leg cath in and I wasn't happy. The larger one that attaches to the bed is what I use the most unless I have to shower. I just hold it and bring it with me. It seems to tug less and I don't get the feeling that it is falling out or being pulled on.

Free The Pee

So pain levels were pretty good and still are however I was so itchy down there and I assumed I had a yeast infection or a bladder infection. My mom drove me to the clinic to have the catheter removed. While there I was in so much pain down there and they said it was swollen and very red and irritated with a possible yeast infection. Good thing I bought dufflican before surgery because I had a feeling that the cystocopy was going to give me one since it did before. So they wanted a urine sample to start off with as well as peeing in the cap to see how many cc's I could get out. I could barely get half of the sample cup and she told me it was fine and that I didn't need to rush. During the 3.5 hours I was there I could only urinate 100cc at a time max 5 times with pain. The ultrasound showed I was retaining 900cc and told me I had to be recathed until the following Tuesday in which I was horrified to hear. So here I am in panic mode while they recath, although they cleaned down there and I did feel a bit better they had to clean all my incisions areas as it looks like I had a reaction to the latex catheter as well as the bandages covering the strips as I was forming blisters.

So here I am finally able to sit up after 8 days to be able to post how my surgery went. I wanted to make sure I documented as much as I could to help other people and so that I would remember. I treated the yeast infection and after 3 days I started too feel somewhat better then last night I get a call back saying that my culture came back positive for a bladder infection....ugh.So I started Cipro yesterday and I am hoping it goes away since it is a strong antibiotic and have prepared myself for the yeast infection that will surely follow this. **sigh***

**A special thanks to all my Endosisters for cheering me on and for support before, during and after you guys are simply amazing. Thank you Emma for the kind care package and Melissa I am sure my neighbour has already eaten what you sent and he is pretending they never got it HAHA!!! And all the cards I have received hoping for a speedy recovery and a special thank you to one of my high school friends Margarita who has messaged me every day checking in to see if I am okay you are an amazing person. Thank you to my sisters and family who have prayed for a speedy recovery and for all of those who have supported and understood or at least tried to understand my battle and actually cared, it means a lot****

I will update on Tuesday when hopefully this catheter comes out if not I will wait until after my urologist appt on May 31st.

Tuesday, May 6, 2014

Tick Tock.... 3 Days until Radical Hysterectomy & Endo Excision

Well as my surgery approaches I have reached a point of anxiety that I didn't think would happen. I had quit smoking for a month, Stopped drinking as much wine and started to eat healthy. Maybe this is the cycle behaviour for me and I like to torture myself or maybe it has to do with my insides all being removed and although I don't want any more children I feel a pain about never having one again. 

I know when I had my daughter I was right out of it mentally because of the Endo and being a single mother. I found that I was so stressed out and it didn't help with having my daughter during SARS, and being alone in the hospital knowing that I did not want to go home to be with her father. I was a wreck. 

Many people told me now that I was married that I should think about it but I was dead set against it. I had been through so much in the 7 yrs as a single mother there was no way in hell I would want to go through that again no matter what. I love my husband but right from the beginning I told him I was having no more children. I told him that if he wanted to leave because of that I was fine with it but not to come back to me later saying he regretted marrying me because of this. So far he has no problems but I think I do. I wanted more children but I didn't want to go through this any more. I had been through all that I could handle and it is hard for me to be a mother of my own child I can't see me doing it again. I just can't. 

That is what made my hysterectomy the way to go for me. I want closure. I am done. I  don't want to suffer another day with this disease and knowing what is happening inside and I can't do anything about it. Not to mention we don't have surgeons here in Canada that can excise Endo and for me this is the only chance I have to get it done right and hopefully never think about this disease again. 

I know what people are thinking.... Endo can grow back even if you have a hysterectomy.. And I am aware of that 100% but I  truly feel for me it will be different. I had minimal Endo grow back so my concern isn't the Endo it is the scar tissue, bowel and bladder problems. Nothing seems to want to fix that. I am on new bladder meds that help some but not totally and for the bowels I take Lax-A-Day everyday almost so it doesn't cause as much pain. 

So at this point 3 days before surgery what did I decide to do.... smoke, drink lots of red wine to try to stop the anxiety from getting so bad that I can't cope. I want this and need this but I wish that I could handle my stress way better than I do. When I am up I am up, when I am down I am down. this disease really has stolen my life but sometimes I wish I was never diagnosed and I never went to any doctors period. I feel I wouldn't have suffered so much if I had let it go. So dumb to think of right now because I know I was in so much pain.. If I think of the time I almost passed out on the floor of Party packagers during my shift because of pain inside the bathroom I am reminded that no one should have to go through this bullshit, no one. 

Dr. Seckin & Dr. Drew

Click the picture for the link of the podcast with Dr. Drew & Dr. Seckin

I have tried to see both sides of what happened but it is very hard when Dr. Drew himself seems like he is denial in what happened. Yes, Endo sufferers all over the world jumped on this because we all see what he did. Right from the beginning the gentleman on the phone stated her diagnoses as Endo, IC and no stomach lining which I understand could possible be gastritis. Dr. Drew called the caller "anxious" he was not anxious whatsoever, I think the rest of his question if he was allowed to even ask it was "It hurts her to have sex". Dr. Drew spoke out when he has no idea about this disease and now that he is afraid to lose his job he is trying to make it look like he cares but the entire time he is talking he is defending his actions. Good Lord.

The girl most likely has a diagnoses for Endo, IC and Gastritis however Dr. Drew continues to claim that she doesn't.. Is he her doctor? Did he ask her? Also he said she was severely abused... umm looks like the boyfriend cut off Dr. Drew to say something about abuse but never said severe and when Dr. Drew said childhood the boyfriend said recently.

For me the news of Endometriosis getting out there is the most important and the fact that Dr. Drew of all people opened this can of worms has helped us huge. It seems to me however that Dr. Drew cares about himself and only himself. He really doesn't care about anyone, the fact that he is doing this I think is because his PR or the network told him to. He seems so harsh and mean and I can't believe at one point I actually liked this guy. I always watched Celebrity rehab because I care about people but it seems to me its all about the money for him and not who is suffering.

Friday, May 2, 2014

Top Specialist speak out to Dr.Drew on behalf of Endometriosis Patients Worldwide

On April 24th Dr. Drew managed to really ticked off 179 million women suffering from Endometriosis as well as Interstitial Cystitis (IC) calling them "Garbage bag diagnoses" this sparked a huge outrage on twitter as well as Facebook. Top Endo Specialists and advocates from around the world took to social media to stand up for all of us suffering from this disabling disease. 

The male caller called in regards to his girlfriend but before he could even ask him a question Dr. Drew cut him off without even listening and said "Endometriosis & Interstitial Cystitis are 'garbage bag diagnoses' with no discernible pathology, given when we can't think of anything else, so we say, eh, it's this... This makes me wonder...was she sexually abused." 

If you missed his pod cast here is the link so you can hear it for yourself.

Dr. Sinervo's response
 "As a gynecologic surgeon that specializes in endometriosis and pelvic pain, your comments regarding pelvic pain were very ignorant and uninformed. I have treated thousands of women with endometriosis, interstitial cystitis, and other conditions and their pain is real. In fact, it is the minority of patients that have a history of abuse, and their endometriosis is a condition that they were born with, becomes active after menarche, takes an average of 9-12 years to diagnose and is poorly treated by medicine as a whole, using ineffective medications to suppress the disease instead of excising the disease which offers a very high chance of success. When you see the destructive effects of this disease not only anatomically, but physically, emotionally, socially and limiting their ability to reach aspirations due to pain and infertility, you know that this is a real entity, and not something that needs a psychologist to treat. You should really do a little more research regarding a disease that can be very destructive and debilitating. I do 2-3 bowel resections a month for obstructive bowel endometriosis and 30 other surgeries a month for all stages of disease. You may have the longest running advice show, but you should know what you are talking about before you blurt out advice".

Dr. Nezhat
"It has been brought to our attention that it has been said that endometriosis is a “garbage diagnosis and no discernible pathology.” These are the type of misconceptions within the medical community that need to be dispelled. It is a disservice to millions of women all over the world who are suffering with pain, infertility, and organ dysfunction because of endometriosis. Endometriosis indeed has pathology and it is not a garbage diagnosis!
Camran Nezhat MD
Farr Nezhat MD
Ceana Nezhat MD
Azadeh Nezhat MD

Heather Guidone CEC (Centre of Endometriosis Care)
It is unfortunate Dr. Drew chose to use his platform and credentials to disseminate incorrect information and demean an entire population. It is evident he does not understand either endo or IC (commonly known as “Evil Twins”). Both in fact have “discernible pathology” indeed; neither is a “garbage bag dx.” To that end, I would be delighted to forward the show’s production team surgical findings, histological confirmations and operative photos by the thousands, each demonstrating presence of viable pathology; alternately, I suggest turning to any medical journal to review the case reports, articles and data therein, most of which are accompanied by supporting photographic evidence as well.

He clearly does not possess even a cursory grasp on the vast complexities of endo, a (very real) disease influenced by many, multifaceted genomic instabilities, genetic polymorphisms, epigenetic alterations, hormonal expressions and environmental factors. It is not a Somatoform Disorder. It is not a Conversion Disorder. Individuals with endo are not hypochondriacs. It is further obvious by his callous remarks he does not have experience treating the disease. He has never spent 9 hrs in the OR trying to save the reproductive organs of a young girl with severe endo, or operated on ‘frozen pelvis’ (a hazardous condition marked by extensive adhesions and significant fibrosis), nor attempted to surgically repair a dangerous intestinal obstruction caused by GI endo (previously misdiagnosed and left to worsen by physicians who said it was the other, so-called ‘garbage condition’ IBS), nor encountered renal failure in someone with ureteral endo, nor tried to repair lung damage due to pleural endo. Had he encountered any of these common scenarios, he would know endo is not only very much a legitimate concern, but represents a significant public health crisis.

The pain of endo is not psychogenic in origin, but related to very real alterations in central pain processes and proalgesic mediators characteristic of the disease. It is also linked to increased risk of comorbid conditions - including association with certain malignancies. Moreover, data has long demonstrated abuse is unlikely to be specifically and psychodynamically related. Indeed, the pernicious nature of abuse may promote chronicity, but is not the origin. There are 176M individuals struggling with endo; to imply or assume - and then broadcast - each was abused and therefore suffers from a garbage bag dx is implausible at best and professionally irresponsible at worst. Such assertions serve only to further invalidate those suffering, most of whom have already gone an average of nearly 10 yrs across more than 5 drs who failed to properly diagnose and treat them, instead saying it was ‘in their head.’ If pts were not dismissed repeatedly by drs who do not possess capability to effectively diagnose and treat, they would not be constantly seeking care across multiple consults – or as Dr. Drew calls it, “traumatically preoccupied.” It is more fair to say the problem actually lies with physician ignorance and ongoing, fragmented, poor patient care - as opposed to assumed abuse history.

Endo is a leading cause of pain, sexual dysfunction, bowel, bladder and other organ impairment, infertility, significantly reduced quality of life and much more. It is the 3rd leading cause of gyn hospitalization in the US and considered one of the top contributors to infertility. It also represents a significant socioeconomic burden, with associated costs in just the US alone estimated near $119 billion; further, it specifically accounts for a significant loss of productivity of nearly 11 hrs per woman/per week among those affected. 72% of those living with endo have reported significant impairment of daily life. The obvious knowledge deficits in the healthcare setting – i.e. those evidenced by Dr. Drew - demonstrate the critical need for improved education among providers at all levels. The enduring lack of accurate knowledge evidenced on his show contributes not only to delayed intervention and effective treatment, but dismissed the reduced quality of life, dyspareunia, infertility, compromised academic and professional opportunities, impaired sexual and physical functionality, losses in productivity and vicious cycles of repeated medical and surgical therapies which characterize the disease.

Rather than using his show to publicize dangerously incorrect information to his broad audience and further drive home stigmas, I strongly encourage Dr. Drew to avail himself of the abundant literature on endo & IC, as well as current data specific to sexual abuse and endo, so he can better provide listeners with correct information. Individuals with endo have long been stereotyped, dismissed and ignored. They deserve far better.

May I suggest starting with an apology.

From the Endometriosis Research Center

"86,240 unique viewers on the posts re: the Dr. Drew Pinsky debacle since Friday morning. That's a lot of awareness about endo! We are encouraged to see the near-total unity of the global endo community, endo doctors, endo and IC organizations, and loved ones of those with the disease(s) banding together and standing up to Dr. Drew, and more recently to his wife who has been engaging tweeters with combative, demeaning replies. He is allegedly to comment on this matter on his show this evening (Sunday), though he has already denied even saying the comments (despite the fact that they are available on tape). Keep supporting one another and keep your voices out front. This IS a real disease and every single one of your stories MATTERS. We don't need a celebrity doctor to tell us that."

Dr. Cook
"Dr Drew : I am Dr Andrew Cook, Medical Director of Vital Health Institute. I have devoted over 20 years to the successful treatment of women with Endometriosis and Pelvic Pain. We have studied over 1000 patients and have accumulated data including extensive symptomatic study, social history, pathological results, recurrence rates, and overall outcomes post treatment. Please see our website at I would like to address your misinformed comments on the diseases of Interstitial Cystitis, Endometriosis, and Pelvic Pain. These conditions are not "Functional Disorders" as you describe. You state these diagnosis "aren't discernably pathological" and call them "garbage bag diagnosis" used "when you can't think of anything else." Your statements are inaccurate and hurtful to the vast population of women affected by these diseases. We have clinical data and pathologically proven evidence on thousands of patients supporting these very real diagnoses. Particularly disturbing is your misinformed position declaring "unexplained pelvic pain" as a "somatoformed dissociation" resulting from a history of sexual abuse. Though a small minority of patients in my study revealed a history of sexual abuse, the vast majority, 98%, did not report a history of abuse. To suggest that 176 million suffering from Endometriosis, IC, and Pelvic Pain need to see a "Trauma Specialist" is not helping women find the needed surgical help for their pathologically proven disease. I would like to offer you a copy of the book I wrote on endometriosis last year if you would provide me with your correct mailing address. I would also be glad to speak with you about endometriosis and discuss the current medical evidence on this topic. Please contact me either via email at or through my office at 408-358-2511."
World-Renowned Endometriosis Specialist in California
Dr. Andrew Cook - Recogized by many to be one of the best endometriosis specialists and surgeons in the world. Author of 'Stop Endometriosis and Pelvic Pain.' Located in California.

Dr. Seckin plus live audio of response
"I would like to apologize for my delayed response to the pejorative statements made claiming endometriosis is a#garbagebagdiagnosis yesterday, but I just completed a ten hour surgery on a woman who apparently did not even require my expertise nor that of my surgical team—including a urologist and a colorectal surgeon who removed the lesions obstructing her bowel and right kidney. I guess once the slides of the multiple lesions we removed that the pathologist will study and definitively state are endometriosis are then reviewed, we can all breathe a sigh of relief that they are merely a figment of our imagination. The radiologists will be humbled that the images they studied were wrong as well. What a blessing to the one in ten women who are suffering with this disease to know that it is NOT real, that if they could just find the right therapist that all would be right in their world. The pain, the missed and wrong diagnoses and treatments, the infertility, the fear of the known association with ovarian cancer, the average ten years of needless suffering until the diagnosis of endometriosis was finally made would all disappear!
To all the women out there, your pain is real.#killercrampsarenotnormal

Dr. Cindy Mosbrucker
"Hi, this is Dr. Cindy Mosbrucker, a leading endometriosis surgeon in Gig Harbor, WA. I spent 2 years working with Dr. David Redwine, the father of endometriosis excision surgery, learning the difficult but rewarding skill of surgically removing endometriosis in women. I realize you have received thousands of messages from women with endo, and by medical professionals as well documenting the facts around endometriosis, its symptoms, genetics, treatments, etc, but I would love for this to open a dialogue about endometriosis. It is truly a debilitating disease that affects millions of women, and is misunderstood by most physicians. Those of us on the front lines of caring for women with this disease welcome the possibility of having a discussion on the air about optimal treatment for pelvic pain, including endo, IC, pelvic floor myofascial pain. There are certainly factors that can alter pain perception and make any disease feel more painful in some patients, especially those with a traumatic history, but sexual abuse in NO WAY causes endometriosis, it is a genetic disease. We need to educate the medical community as well as patients with endo about the need for surgical excision rather than hormonal suppression, and the need for timely diagnosis rather than our current poor standard of waiting 5-9 years before a diagnosis. Please help us correct the misinformation surrounding endometriosis by using your platform for good. Thank you very much."

I never expected an apology from Dr Drew his arrogance was enough for me to lose all respect for him and what he stands for. However during all this Endometriosis got out there and that is all we have been trying to do since anyone who talks about the disease seems to have a different interpretation of what it is and its so confusing to many people especially those with Endometriosis and IC.