My body is drying out

I am not even sure where to start when it comes to my body drying out. I want to say it started long before my first surgery for Endometriosis in 2007. I have never really told this to anyone before but I am about to and I feel really weird about it.

My vaginal area has always been dry and I mean really dry to the point that even my clitoris was dry. It would be painful to even walk when it was flaring up. I remember seeing a gynecologist about it and they told me they couldn't find anything wrong. This pain lasted almost 10 yrs then suddenly disappeared. Having sex would be so painful because of how dry I was especially if the person I was with would try to stimulate my clitoris.  Sometimes I would grin and bare it and I mean even doing that was horrifically painful but how could they understand this pain? I never told anyone because it was shameful to me and also because even when I was diagnosed with Endometriosis I didn't hear one person talk about this so I assumed it was a problem that not many other people had. Usually this pain with be more severe with my periods and I chalked it up to it being from me wearing tampons and it drying me out everywhere else. I would just use Vaseline and that would help.

About a month after my hysterectomy I started to develop this really weird feeling in my mouth. It was as if I had burned my tongue on something and it felt burnt all day long. The only way to make the pain subside would be to eat or sleep. I am now 4 years post hyster and the pain and dryness I have is just unbelievable. I can only equate it to my hyster or jaw because I have TMJ as well but no one can give me answers so I have to assume it is from my surgery.

The burning that I feel has a name and its called "burning mouth syndrome" it is brought on by trauma, post menopause and various other things and when I brought this up to my doctor she said that had nothing to do with my hysterectomy when it clearly states that it is possible. That is the reason I left that doctor. I have had so many issues over the last two years and she did nothing but make it worse for me. I had a complete mental breakdown and she said to me "what would make you feel you had a nervous breakdown" I was like "did you not see me in here almost once a week for 5 months straight out of my mind crying and not able to handle anything in severe crisis?" So needless to say I am confident I am in the right hands now.

The burning mouth has been here for a while and around the end of 2017 as well as the chronic canker sores and the mouth dryness came on full force. I thought it might have been the meds I was on that time or because they all cause dry mouth especially the Wellbutrin. I was using Biotene mouth wash, saliva inducing gum but it progressively just kept getting worse. At one point I thought maybe it had something to do with my jaw because I was getting nerve blocks put in my jaw as well as Botox and in February of this year had jaw surgery so I chalked it up to that causing it.

When I get the cankers they come with about 5 at a time or more and they clear then a new one comes in its place. It is so painful at times I can't even eat. Right now I can't drink coffee or anything that is acidic like wine, juice, and.....my favorite... tomatoes..  I don't know if what I am experiencing is food allergy related, jaw or menopause but I am frightened that I am going to get mouth cancer and whenever I go to the dentist I explain the situation but it always seems to get dismissed. I have all the signs for that unless I have Behchets disease which I do have a lot of symptoms. I hate that I have to research my symptoms online to get answers but seriously its like no one listens to me ever or I have so many issues they don't know where to start.

So for now I brush with special toothpaste and brush, mouthwash, candies that help create saliva, I swish my mouth with anbesol and dab on the Alum which was a solution for some online.

I should say that my doctor did notice that my last two blood tests came back with elevated IgM so she is sending me to an Immunologist which I am so thankful for. Maybe he can give me answers.

So for now I will just continue down this painful road and cross my fingers that someone can stop the pain.

Celebrating small victories & moving on

I felt it was time to post some small victories that have been taking place in my life. 

As most of you know I am almost hitting my 2 year post radical hysterectomy for Endometriosis and I haven't taken any HRT to date and I was a mess for most of this time period. (See prior update here)

As of today I am almost 100% drug free (sleeping pill being the last) and I have barely touched a glass of wine in over a month as well. I really feel accomplished and happy that I decided to come off all of it.  I decided to take the risk of dealing with the Fibromyalgia pain without medication and have been actively meditating since October 2015 to help cope with anxiety and major depression. 

I know everyone's journey is so different on all levels as well as how you feel post hysterectomy and I really feel for me that for some reason my body was allergic to my own hormones. Mentally they really messed me up including migraines for over 15 yrs, depression, anxiety, acne, up and down moods, and constant craving for carbs. I feel as though I have definitely improved in this area but it wasn't easy as I struggled for the last 2 yrs post op just trying to survive. It was a horrible ride and I really don't know if it is completely over but I am moving ahead with my life if it is or not. 

I have realized that Endometriosis controlled 15 yrs of my life due to delayed diagnoses and after my first surgery in 2007 it completely took hold of my every thought and move. I spent the last 4 yrs on-line everyday on various social media outlets as well as Medhelp 24/7 and I have come to the conclusion that if I continue to live my life this way I am actually going to miss life in general and I have come too far to let "THIS" be my life on earth.  

I let this disease control my life and I have decided that after the Endo March in Canada May 7th, I will no longer be as active about raising awareness online. I am going to keep up my blog because for me this is my outlet and some people want to hear from me but basically this is it (Maybe I will start a new one with fun things?). I can't keep draining my own soul in order to do for others and I have been running on empty now for the entire 4 yrs I have actively been raising awareness. 

I didn't come to this conclusion overnight it has been a long time coming. I love all the people I have met over the years and I love that there are so many more advocates out there now more than ever but it is time for me to step down and finally move on. I realized how permanent I need to make this because for the last 9 yrs I have not made a video for my daughter. I used to make them all the time. Her first time riding a bike, singing, parties, etc. I have totally not mentally been there for my own child and this is not okay. All she has known is Endometriosis and I don't want that to be what she remembers when I am gone. 

So I thank everyone who has made a difference in my journey, who has educated me, who has been there for me in the late/early hours when I wanted to give up and end it all. You all have helped make me into the person I am right now and I will take all this with me as I move onto the next chapter of my life...

Head in the clouds for the last 9 years

I feel compelled to speak about what I have been going through the last two years. Although many know I love my red wine almost no one knew my addiction to Oxycodone.

Since my first Endo surgery in 2007 I have lived on many different medications. I don't even remember what it is like to not be on any.

Chronic pain has plagued me since I was 10 years old along with severe TMJ, depression, anxiety and PTSD that followed.

I have been a guinea pig to doctors because they could not help me. Instead of them being open and honest with me, they shamed me and made me feel like my pain was not real and that just led to me to a darker place every time I had a doctors appointment.

To fast forward to how I got addicted to alcohol and opiates is not quite simple to explain. The wine came first that I know. At first it was a glass now and then, then I would drink a glass or two when I got home in order to cope being a single parent in pain. It then turned into a couple of bottles a week, then to a box of wine that would last less than a week. My desire to come home and have a glass was strong because it made me relax, escape as well as not focus on the pain I was in daily. Besides smoking wine has been my most difficult crutch to get rid of.

I suffer from Major depression so I am either low or suicidal low no matter what medication I am on it just doesn't seem to help and that is where the wine would come in to play more because I was just trying to cope with everything happening to me as well as around me.

In February 2014 I lost my job of 10 yrs which ripped me to pieces mentally. In May I had my radical hysterectomy which led to me being on a cathedar for 11 days because I could not urinate. In June the prozac I was taking for depression and anxiety sent me down a dark spiral turn to suicidal thoughts and I was so close on acting on it because I was having visions of slitting my wrists and cutting my entire body with a razor. I was taken off Prozac and was given Serequel to bring me down from the panicked state I was in which helped. Then August just 3 months after major surgery I woke up to excruciating pain down both of my arms. I had edema in both limbs and I could not bend my fingers or elbows and it lasted for 3 months.. I would take Oxycodone for my jaw in the winter when it got really bad but for the most part the drug itself made me more sick then it did help me. However when I lost feeling in my arms and the pain was so intense I was on 2-4 pills a day just to get through the day. I started a new job at the end of September while barely being able to even hold a pen. In October I separated from my then husband and was a single mother once again and in the state I was in, I really felt I was not fit to have my daughter but I was alone and suffering.

That my friends was only 2014....

In 2015 I had no other choice then to sell my town house that I loved and worked so hard for. I just could not afford to live there. I had some amazing friends that did come over and help me paint some rooms in order to list it. It sold quick and I moved into my new condo in May in which my mother had to co-sign for because I could not afford to even get an apartment for the salary I was making even though I put a lot of money down. It was humiliating and it made me feel just more and more inadequate as a human. I was given a anti anxiety med since my constant panic mode would not cease but I didn't feel like it was doing anything. For around 6 months I was switching back and forth with that med, the oxy and wine along with my sleeping pills and muscle relaxer for my jaw. I had multiple oxy black outs but at the time I didn't realize that was what they were called. I just could not cope at all and needed to have a breakdown but that just could not happen because I financially could not do it. I don't even remember most of last year because suicide was on my mind for most of it. In May I started to also develop burning mouth syndrome which I continue to have a problem with still and I really don't know if it is the wine, oxy, cymbalta or menopause that has caused it. Sept 1st I was awaken out of my sleep by my neighbour telling me that my balcony was on fire. The HVAC unit overheated and destroyed all the stuff on my balcony as well as my HVAC unit. It took up until recently for them to even repair the basic things so my head was spinning fighting back and forth with the condo corporation. From October to December I really started to get into meditation and really focusing on just positive vibes, leaving those that complained all the time, or asked too much of me blocked and out of my life. I also started EMDR therapy to deal with the PTSD and to learn better coping mechanisms. Well that totally made things worse even though I started to see things differently so the abuse of oxy and wine just continued to happen.

That was 2015...

Here I am now in 2016 determined to cope in healthy ways and stay clear of any medication. My goal is to come down to 30mg of the cymbalta by end of March and off it completely by June. I know this is going to be so much harder to do because I have come off it years ago and it takes a good 2 weeks to come out of your body and I worked through it the last time, this time no way. My next goal will to be to come off the flexeril about a month after coming off cymbalta. The reason for that is the cymbalta has made me increase the flexeril because it causes me to clench and grind so much so it has been helpful and is not addictive to me. The last thing I come off of will be the sleeping pill I have been on for 3 yrs. That will be a tough one and I am in no hurry to come off it has I have suffered from insomnia since I was 15 and it wasn't until 3 years ago that I finally knew what it felt like to actually sleep a full 8 hours not just an hour or two.

2016 for me is a year for growth spiritually and I know it is going to be a hard year but I believe that I have the strength to get through it considering all that I have been through. I have not yet had a bone scan so that will be what I plan to do as well as I have not taken any HRT since my hysterectomy and I don't plan to.

I share this information out there because I know there are many going through this same type of medication cycle and it is hard to see a light at the end of the tunnel, but I am here to tell you that you can and I believe in you and I know it is hard. I still struggle so much but when I look down at my wrist I remember always that this is not the end of my story. This is not how my life will end.

Motherhood with Endometriosis

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

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

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

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

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

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

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

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

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

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

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

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?

#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 http://www.endofound.org/news/484/Its-time-to-show-your-UNSelfie-for-the-EFA-and-GivingTuesday

#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?

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 :) 

My Period Is More Painful Than Cancer

I came across this story on Facebook about a girl named Nicole Malachi and didn't realize the connection with the Endo Warriors group. Not everyone is on Facebook so I felt it was important to share her story because there is a lot women who suffer and because we "Don't look sick" people push us away and tell us to suck it up and that it's only a period. She validates us as sufferers as she has experienced both Endo and cancer. It is a very good read and I hope it helps other people understand our pain is real and not exaggerated.

http://www.everydayhealth.com/columns/my-health-story/my-period-is-more-painful-than-cancer/

CN Tower lit up for Endometriosis 2014

March 12th The CN Tower in Toronto lit up for Endometriosis Awareness Month. The weather was horrid with at least 25 cm of snow but those who came to see it are troopers. It was awesome and it was a start for something big in years to come. 

Bye Bye Uterus....

Well I finally got the call, one that I was not expecting for a long period of time due to the delays in Health care in Canada. I expected to have to see the urologist first and have to wait to have tests done, then wait for them to go back to the surgeon then the surgery would be booked. I have anticipated this for 5 yrs and can't believe that on May 9th it will be all taken out.

Nervous is an understatement. I have researched the side effects and the pros and cons of a hysterectomy and I am very aware this is a 50/50 shot a relief and it is possible that I could be worse off later however for me this is a choice that I have made for me and no one else. I know a hyster will not cure Endo, I know the consequences of this type of surgery but I also am ready and have been ready for a long time. This is a choice I am making for me because of all the cervical, Endo, uterus issues I have had as well as possible Adenomyosis. The pain and suffering that I have endured for 23 yrs has gone on long enough and for me this is closure. It is time for me to start my new life and try to move past what Endometriosis has done to my quality of life.

I am petrified of the aftermath of my hormones the most. Will my migraines come back? I have been on the BCP for almost 8 yrs without a period and since doing so I have not gotten one migraine. I am wondering if the side effects will be similar to when  I was on Lupron.

For those who have had a complete hysterectomy how did you feel after? A month later? A year later?

I am only looking for positive feedback as I am fully aware that there are many opposed to a hysterectomy but those who have walked in my shoes completely understand why I am doing it. This isn't an option for me.

#Endometriosis Awareness Month- What are you doing to get #Endo awareness out there?

March kicked off strong all over the world for Endometriosis Awareness month and I am so glad that I have the opportunity to have the entire month to raise awareness for this debilitating disease. I myself have suffered for 23 yrs and wasn't diagnosed until I was 27 yrs old in 2007. The journey has been long and I wish there was this much awareness out there when I was 13 it could have saved my sanity if anything.

There are so many different awareness videos, pictures etc all over I feel so happy that our voices will finally be heard especially March 13th for the first Million Women March For Endometriosis. I am pumped and ready to go and to be heard and to stop the silence of this taboo disease.

Someone with Endometriosis will have medication lists that look like this if not much more and for me my benefits run out in August so I am in trouble as my Endometriosis symptoms and Co-morbid diseases caused by Endo need medication to be able to function. This is not what our lives should be about.

There is an interesting Challenge going on that I am taking part of and here it is below if you have not already started. I will update the answers once the month is over. 

#Endometriosis #Awareness - 31 Day Challenge

Day 1. For me, living with Endometriosis means: that I will never be the same person I was, I will always endure pain and side effects from meds. I will always have chronic fatigue and depression however it means also that I can advocate for others who don't have a voice or knowledge and support those that suffer daily.

Day 2. I was diagnosed with Endometriosis in/on: June 2007 days before by 27th birthday

Day 3. But I had symptoms since: although I was diagnosed at the age of 27 I had symptoms starting after my second period at the age of 13. The rectal pain started at the age of 15.

Day 4. The biggest adjustment I’ve had to make is: Stepping back and not overwhelming myself with things to do and to actually relax and rest. This is something that has never come easy for me. I have a hard time keeping still so to stop when my body is telling me to has been the biggest adjustment ever since coming to terms that this is my new normal.

Day 5. Most people assume: That after you have a surgery you can just carry on with life. They assume the problem is fixed and that I should stop playing the victim. People assume that endometriosis isn't that bad and that pain is just a week out of the month when in fact for many it is not it's the entire month and can't catch a break from Endo as well as co-morbid diseases. It really is "if it's not one thing it's another" .Some people assume that because I don't look sick that I am just looking for attention.

Day 6. These are the treatments I have tried so far:

1) 3 rounds of Lupron injections at $1500 a shot, used to treat prostate cancer, puts you I to menopause and can cause long term side effects as wells as extreme bone loss.

2) Marvelon21 bcp continuously with no breaks (sugar pills) in between other meds for the last 7 yrs straight. The purpose is to not have a period and ovulate therefore stop the pain

3) Amitriptalyne (Elvail) used to help with nerve damage and sleep

4) Gabapenatin- used for nerve damage and to help lower the pain

5) oxycodone, tramacet, endocet - all pain meds but don't work on me

6) flexeril- muscle relaxant for the pelvic floor dysfunction

7) cymbalta and antidepressant but also given to Endo patients

8) massage therapy, acupuncture, chiropractor, tens machine, osteopath, touch for health, dietician

9) diets- Endo diet, yeast free diet, vegan, vegetarian, paleo, zone, Atkins, juicing,

10) many many different supplements in the last 23 yrs and enemas

11) visanne for 3 month

12) 2 laparoscopic surgeries

Day 7. The hardest part about mornings are:  Getting up at all. I wake up barely even able to function and this never ending feeling of never being able to sleep and not wake up in pain or being so exhausted that I can't think straight sucks. I like to describe it as the movie "Ground Hog day" it is a never-ending cycle of torment. My spoons are used up getting up and getting ready to do whatever or wherever I need to go. This cycle has followed me for 23 almost 24 yrs now and it becomes so depressing knowing my life will always be like this and just to function in the morning has been the hardest challenge of living.
Don't mean to sound so depressing but I want to make sure I am real for this challenge so that people understand what it does and why most people say "You don't look sick"

Day 8. My favorite medical TV show is: I only have 2. The first one I watched faithfully was ER with George Clooney. One of the best shows I was so sad when it ended but then along came Grey's Anatomy to fill the void. Love those shows LOL..

Day 9. A gadget I couldn’t live without is:  definitely my iPhone it keeps me in contact with my spoonies from twitter and Facebook. Support is key

Day 10. The hardest part about nights is: That I can't sleep. I have chronic fatigue yet I am wired at night. I can't sleep on my sides or stomach or I lose feeling in my arms so I have to lie on my back which is really hard. Just to get comfortable is a challenge and usually takes like an hour and once I am nice and cozy the IC kicks in and I have to pee and the routine starts again usually happens about 3 times before I can actually fall asleep.

Day 11. Each day I take_____ pills & _____ vitamins: I have tried to stop taking any kind of meds for my Endo but right now I take marvelon every single morning and Zopiclone at night.

Day 12. Regarding alternative treatments I use: Various different things like Acupuncture, Body rolling to break up scar tissue, Digestive enzymes, Dairy, gluten free diet. 

Day 13. If I had to choose between invisible illness or visible I would choose: hmm this is a hard one, I would prefer neither but a visible disease more people would understand and see the pain where as Endo it not visual and people just don't understand how debilitating the disease is at times and its not just the pain its the Chronic Fatigue, lack of energy and the depression from not being able to accept that this will I will live forever.

Day 14. Regarding working and career: I thought for a while the place I was at was for me but the continue stress and lack of respect given to me changed how I felt the last two years. I have mixed feelings about how I was let go because I really believe it was wrong however I am so glad that I never have to go back there. My surgery is May 9th is my hysterectomy and it will take a bit to recover so after that I really don't know what I will do however I have been offered 2 jobs already but its not what I want to do.

Day 15. People would be surprised to know: that many women with Endo have various comorbid diseases. I was diagnosed with fibromyalgia 10 yrs before my Endo diagnoses along with chronic fatigue syndrome, neuropathic pain and migraines.

Some people with Endo have no pain at all and some women have debilitating pain along with horrid symptoms along with it. This is why Endo is very confusing to many because some say they "had" it and don't anymore or childbirth fixed it etc however some people just are not effected by it like others and that's a mystery.

Day 16. The hardest thing to accept about my new reality has been: that I will never be the person I was and it's gradually taken over my life for 23 yrs and there is no sign of anything getting better. I have to learn to accept this and I can't and it's something I struggle with everyday.

Day 17. Something I never thought I could do with my illness that I did was: Advocate about it. It's such a taboo disease and most people don't want to talk or listen. I was silenced for so long and as taboo as it is I don't care anymore. No one should have to suffer like I did. No one! So if I have to yell it from the roof tops or keep posting pictures I will. I will never stop talking about this disease because it has ruined so many peoples lives and us as women have been made to feel it's normal and to suck it up when in fact we put a smile on our face everyday to hide the pain and depression from battling this horrid disease. My voice is what I found since my diagnoses in 2007 and I never thought that I would have the courage to open myself up to the world but I did and that there makes a difference in my battle with this disease. Helping others find their voice.

Day 18. I feel that Endometriosis Awareness is: About speaking up about this disease and for us to be heard and that we suffer more than most people because of the taboo of talking about periods or uterus's we end up being silenced and that can't happen any more it is completely inhumane to do that to any human being.

Day 19. Something I really miss doing since I was diagnosed is: Playing rep baseball. I started to get really sick around 15 yrs. and for various reasons I quit. I had no energy to play and when games we cancelled I would be so happy unlike how I was before this illness took my life. I used to watch the rain come down and pray for it to stop. I had so much passion for softball and it is too hard to even play recreational. It sucks but I did get that time and those were the happiest days of my life on the field.

Day 20. It was really hard to have to give up:  certain foods. I am supposed to be on three different diets 1) Endo diet 2) IC diet and 3) TMJ so really its been hard to give up certain foods and at times I fail really bad but I have to keep trying in order to help alleviate the pain. I feel that not only am I being punished with all these diseases but I have to also stop eating most foods which has been THE hardest thing. Its been 10 yrs on and off these diets and its a constant struggle daily.

Day 21. A new hobby I have taken up since my diagnosis is: My blog and twitter. I have come to know so many spoonies all over the world. It helps me feel better to help others who are struggling and to guide them in their journey's.

Day 22. If I could have one day of feeling normal again I would: Like many other people I would think I was dead. I don't remember what it feels like to be normal.

Day 23. Endometriosis has taught me: That women are not treated like men and that we are the stronger sex without a doubt. It has taught me to be loud and break the barriers of silence and to help pave the way for the younger generation of Endometriosis sufferers.

Day 24. Want to know a secret? One thing people say that gets under my skin is:

-My friend got pregnant and she no longer has endometriosis

-my sister/aunt had it and it's gone now.

-You had surgery it should be gone now and you should feel better

Day 25. But I love it when people: Listen to what I have to say and get that this is not about attention but about awareness, understanding and for someone to say " I believe you"

Day 26. My favorite motto, scripture, quote that gets me through tough times is: It is what it is/Tomorrow is a new day

Day 28. Something that has surprised me about living with an illness is:  The lack of awareness even by doctors and surgeons. It is maddening. Its like you have a rare disease but you don't because I have 200 million Endosisters in the world so why is it that no one knows?

Day 27: When someone is diagnosed I’d like to tell them:  Make the first surgery count even if its diagnostic. Find the absolute best Endo surgeon you can find that excises and get it done right the first time. Be your own advocate and don't rely on what others say even doctors, research everything and keep all your medical files.

Day 29. The nicest thing someone did for me when I wasn’t feeling well was:  My friend that I used to work with for two of my surgeries brought me something to eat. She is a great friend.

Day 30. I’m involved with Endometriosis awareness month because:  It is about time women are heard and not thrown aside. The words period, uterus and vagina are all over main stream media however if you suffer from a gynaecological disorder you are shunned and its still taboo however naked women, pornography are acceptable.This is sad and it needs to change not just for me but for the next generation of women who will develop this disease. Taking 14 yrs to diagnose a disease like this is wrong and doctors need to get educated with updated information not go by a theory used 100 yrs ago. Times have changed, technology and the way we live. I can't even comprehend why they still do this and why they do not even want to know more to help patients like us.

Day 31. The fact that you read this list makes me feel:  That you are taking the time out to know more about this disease or that you are interested in learning what I have been through and now understand who I really am behind this façade I carry around everyday just to exist. 

What are you doing to raise awareness? For me? I decided to show the world that we are not alone and that we are human and our voice deserves to be heard by making my blog with a wall called "The Faces of Endo" and we should be entitled to proper surgery and that means getting more surgeons that can excise as well as the tools to preform these surgeries. We can't continue to suffer like this, we deserve a quality of life being pain free.

Look at all these beautiful Endometriosis Warriors!!!

Mentally going out of my mind. #retailtherapy #vacation

There are times in your life where you have these ups and downs where the downs are so dark you don't think that you will ever escape the darkness and suicidal thoughts creep in. This has been an ongoing battle for me since I was 15. Different medications for Fibro, Endo and TMJ haven't helped when it comes to those thoughts and feelings of despair.

I always feel like I am running around like a chicken with it's head cut off with no space to breath, no down time and no time just for me period. I am the person who takes care of everyone, the person that supports everyone and its difficult for me to just sit down and relax its just impossible for me because I get antsy in no time.

I reached an all time low just recently and thank God I pulled myself together, went to get a hair cut, pedicure and take in a movie. I also spent money on clothes just for me because it has been so long since I took care of myself. I forced myself to play a game with my daughter as well as play out in the snow as she needs time with her mother and one on one time is hard for me to do not because of all my chronic illnesses but because I have forgotten how to be a child and have fun. I am so serious all the time and I need to change that and I plan to this year for my daughter.

I am trying to raise money to get surgery done in Georgia and that could take a very long time however I also feel guilty asking for money when I am going to save as well to go to Jamaica. For me I need sun therapy. I need time for me and time to do nothing and relax and that is a place where I plan to do it this year. Could be in the next couple of months or even near the end of the year all I know is that I need this trip now and I wish I had the money to go on a plane as we speak but I don't. My husband works seasonal so not much money is being brought in, however I have the money to go and sometimes I get so frustrated that I am always the one that seems to have worked so hard to be able to do this but I can't afford to pay for him too and I am being held back instead of making this a good time it causes more stress on me.

I need to get away from everything in order to free my mind. I think its important for everyone. I am not much of a flyer however I will do anything for an all inclusive trip to a hot resort.

I will tell you right now I am saving every penny I have to go on this trip I need it like nobody's business!!! LOL.. Look at the picture below.... can you see me on one of those chairs??? LOL

The never ending feeling of fatigue #Endo #Fibro #spoonie

The fatigue cycle for me has gone on since I was 16 yrs old about a year before I was diagnosed with Chronic Fatigue Syndrome, Fibromyalgia and Chronic Pain at 17 and Endo at 27. When people say they are tired to me I usually just ignore them because the extent of tired I feel is no where measured to someone who does not live in Chronic pain or suffer from CFS. The best way it has been described is feeling like you have been run over by a Mac truck and to be honest it does as well as over and over and over again.

When I wake up I am groggy usually from whatever med has been prescribed for me to use. When I am not on meds I don't have the groggy feeling just more of the extreme exhaustion. I had a sleep test done in the 90's and was told I have Restless Leg Syndrome as well as I don't enter a REM sleep stage. It has gotten worse over the years especially when I am on certain medications when it gets really bad I want to cut off my legs. The one thing I have tried is wearing baseball socks, it seems to calm down the nerves to some degree to at least yet me sleep. A couple of meds that make the RLS worse that I have tried is Gravol, Lorazepam, Cymbalta, and any kind of pain med like Percocet and some times my Jaw muscle relaxant Flexeril.

I often think that I do many messed up things in my sleep. I often think of recording myself because I have done things in my sleep like, sleep walking, talking as well as even taking a cast off in my sleep and putting in the bathroom.

Throughout the day I am exhausted and all I think about is going home to bed, but like any mother that just can't be done. Dinner has to be made, homework done, and spending time with the family this makes it really difficult for someone with Chronic Fatigue because you start to get very irritable, short term memory loss, and emotional outbursts. When its finally time for me to go to bed around 9-10 I am wide awake... UGH. This cycle drives me crazy, and I usually can't fall asleep until like 1-2 am so at the end of the day I am barely getting 5 hrs sleep a night.

I went through 5 yrs of really bad insomnia when I was first diagnosed with Fibro. I could not sleep for the life of me. I would finally doze off at 5 am and have to be up at 6:30 to be at work for 7 am. I would not take those days back for anything. I was lacking so much sleep I became depressed and suicidal. During those years I was under a lot of stress with the job I my mind would not shut of at all. I would replay anything and everything that happened during the day and there was no way to stop it and all doctors wanted to do was push me Antidepressants.

I am lucky now that I don't have those thoughts but I have a very high stress job which I am barely able to cope with which makes all my conditions worse. Pain from Endo such as bowel, bladder and pelvic pain keep me up most nights as well as the nerves all over my body that seem to be inflamed on a daily basis. No position I sleep in is comfortable. I have tried a new bed, pillows etc and nothing. My circulation cuts off on every angle and that is where the struggle comes in when I am trying to just get to sleep. Not to mention when I finally get to that point my IC kicks in and I have to constantly get out of bed to pee and start over... Someone shoot me.

It is a week before Christmas and I am so done mentally, physically and emotionally. I feel like I am on the verge of a nervous breakdown and nothing I do is helping at all. I come home now to read or watch TV.

I was told that drinking wine is better than taking meds and for the most part I have done this but lately it is really messing up my sleep. I wake up every hour on the hour if I drink wine and that is just not working for me.

I am not sure how much longer I am going to be able to cope as I debate every single morning when I am forced to wake up to even bother going to work, but reality is that I have to, there is no other way around it. I don't work for a company that I can take short term disability to see if this helps because I will be shunned and treated like crap so its better for me to suffer and hide what I go through because I need my job.

All I want to do is sleep I am in a state of tired that I don't think I will ever ever get out of. I have absolutely no energy to do anything. The only people that really understand are the ones that experience this sort of Chronic Fatigue.

Lost in my own world. #Depression #Chronicpain

It always seems that around this time of year I fall into a depression so deep that it is so hard to get out. It could be SAD but I know I struggle through out the entire year. I think in the summer I am more occupied and my mind does not sit idle but I do not like winter/cold at all so I am inside most of the time so I guess that is why it seems to be worse around the last 3 months of the year.

I have really learned to cope with Depression when I feel it coming on throughout the year, I trick my mind which took a very long time to learn and I wish I had learned how to do it sooner. As soon as I feel depressed I started tweeting funny pictures to help other people in their struggles then in turn it helps me not focus on what is happening in my own mind.

The last month I have gotten so deep that I am afraid but I do not want to take medications, they just don't work for me and I have tried many.

My eating disorder has gotten so out of hand but it is the only thing that makes me feel better. It stops me from thinking and it stops the pain from Endometriosis. Nothing makes me happy and I have always felt that way. If I become happy about something, something bad happens. I know that sounds just so ridiculous but that is how it has been in my life. I wish that I could find some joy but it is like I was not born with it. I have to really force myself to be happy and it helps but deep inside I just feel lost in my own world. I don't get close to people and I like to be by myself. I do like my own company a lot, maybe too much?

I am not much to go out and socialize and when plans get cancelled deep inside I am happy.

I have lived with Chronic pain as long as I can remember. I have known nothing but pain, physically, sexually, mentally and emotionally. Life sucks yet I am afraid to die. I just want to live with out pain and mental illness. I really don't know what came first but I always remember not really being happy or content with anything. How fair is that for someone to live like this? Depression you can't just snap out no matter how hard you try. I am convinced that I am wired completely different than other people. I am not normal but I guess, what is normal? No one is I suppose.

It has been hard even being a parent to my daughter. I know there are Endosisters out that that can't conceive and it kills me that I did and that I can't cope. I have no idea how I even made it this far being a mother because mentally and physically I can barely manage to get out of bed and my mind is all over the place all the time. If my daughter ends up with Endometriosis or any form of Chronic illness I don't know what I would do. I literally don't think I would be able to manage the both of us.

I am hoping that in 2014 I will be free from all of this, but I have to accept reality that this is who I am and I need to accept this is person I will be for the rest of my life. I can't seem to want to accept that, as there is always a fire and hope that one day the pain will end. I have clung to that hope for 23 yrs and I can't see me doing this another 23.

My Battle With Food

As long as I can remember I have had a love hate relationship with food. As a baby I would vomit everything up or I could feel it coming back up all the time with certain foods. I ended up with an emergency laparotomy at age 7 for intestinal volvulus, my small intestine started to grow inside the large one taking out my appendix was the only option along with a bowel resection.

When I was 15 I developed an eating disorder. I wouldn't say this phase lasted long (anorexia) but I know when I was getting my period the pain was so bad for at least 10 days I didn't/couldn't eat. I was around 110 lbs most of my teenage years. People would always comment on how skinny I was and I would just stop eating just like that. I never thought about it to be honest until later when Endo started to effect my bowels. The rectal pain was so bad I could not stand it. I started to hate food because food meant rectal pain. I had so many tests done and they could find nothing.

I started to gain weight during my pregnancy. At that time I was 23 yrs old and I had only eaten once a day before this so I started to eat more because I had to for my baby. Well I gained 75 lbs. It wasn't something I was aiming to do of course but I was already battling with Fibromyalgia and was in an abusive relationship so food is what I turned to.

By the time my daughter was 2 or 3 I had gone full out Binging and purging every single day.

During this time I was so sick with Endo but had not be diagnosed, I was nauseated all the time, I had migraines that would last well over 48 hours with the longest being 100+. I felt so sick and the pelvic pain was way to much to bare. During this time I did a colon cleanse as nothing seemed to work at all for the bloating and the bowel/rectal pain this was almost like it was something that was meant to happen because if I had not done that cleanse and suffered so much pain that the 10 cm Endometrioma would never have been caught.

I did find out I had stage IV Endo in 2007, deeply infiltrating, Rectovaginal cyst, Sigmoid colon Mensentric cyst which is rare. My insides were glued together and I had kissing ovaries. I had a PSN (Presacral Neurectomy) done at the same time and the one main side effect? constipation. YAY!

So for me I have never known what it is like to eat without pain because I always have it.

Since that surgery I have had so many complications and have been addicted to enemas for the last 4 yrs. I can't stop. They make me feel better when I am bloated or can't go it is just something I do. I hate myself for it because at first it was because of the pain now its both and now I don't want to stop. Nothing will ever stop the bowel pain I get. No surgery, nothing. My bowels from day one have not liked me. Endo sure as hell didn't help with that.

I was diagnosed with a Wheat, Dairy and Spelt intolerance and I know these effect my bowels a lot but when you are bulimic and you are on all these meds that make you want to eat anything and everything there is no way to stop yourself. I feel like I want nothing but whats bad for me and when I try to eat healthier things I start gagging literally. I am sure its because I have been on and off so many diets to help the endo and the though of some foods like lettuce makes me want to be sick. I will force myself to eat it but I do not like it at all. It is not like I don't like healthy food, but for me stress, endo and meds trigger such bad things and I feel like there is no control whatsoever on my part, I just can't stop.

I am 36 yrs old with an eating disorder that shows no chance of ever stopping. I have lived this cycle for so long that I wonder why I was chosen to suffer so greatly from birth. Why is my body so fucked up? Every inch of my body there is one problem or another and I want to scream my face off.

Well I haven't posted in a while and I will call today Confession Thursday lol.

Why Should I help other Endo Sufferers?

I often think "How on earth can I possibly keep up with all the awareness and helping others on Twitter, Facebook and Medhelp" There is no real response I just do.

People in my own life that are in my family or inner circle have no clue what I have been through in the last 23 years. If I asked them how many doctors I have seen in the last 23 years they would probably say 10. Most people who walk among you daily don't even have a clue to what you have been through, how many doctors you have see or how many tests have been done.

I started seeing doctors at the age of 14 on my own. I found that my regular GP wasn't all there however she was the first to say the word "Endometriosis" after a TVUS when I was 13 but only gave me Anaprox and Naproxen to treat it.

Unfortunately by the time I was 17 I had full blown Fibromyalgia which to this day I feel was brought on by undiagnosed Endometriosis and had seen 40+ doctors and specialists by the time I was 32 years old.

Every doctor made me feel like I was making this pain up. My second GP I was with for a couple of years and he did try by sending me to all of these specialists and put me on various drugs but by the time I was 17 he said "I can no longer see you because you cry too much"

So here I am at 17 years old. I have Fibromylagia and no one knows what the hell it is and I start to get even more depressed. The pain is unreal and its all over, no wonder Endo took so long to diagnose because I could not specifically tell them where the pain was because it was EVERYWHERE.

I have had 3 colonoscopies, 2 MRI's on my head, 5 CT scans on my head, nose, and abdomen, 2 upper and lower GI Series done, ANA testing, Celiac testing, a Cystoscopy, 2 colposcopies, 1 leep, a sleep test, about 20 or more PAPS, I can't even count the amount of X-rays, Ultrasounds, TVUS and blood tests from head to toe. I have had nerve testing, multiple ECG testing, instruments stuck up my nose, in my ears, etc. I could really go on but I think you get the point. All of this and nothing really substantial came up. I was told I had Chronic Sinusitis and I was missing a frontal sinus, I had a deviated septum, tinnitus (Tubes put in my ears prior in my teenage years which did nothing), Possible MS, Possible Lymes, Possible Elhers Danlos Syndrome, Restless leg, Major Depression, Generalized Anxiety, Chronic Yeast infections, Thoracic Outlet syndrome, Sciatic Nerve compression, SI joint was seized, Osgood Schlatters Disease, TMJ (surgery), Intolerance to Wheat, Spelt, and Dairy.

That is just part of the testing that I can remember but next is the medications they put me on. First one I can remember is Naproxen, Anaprox, Paxil, Zoloft, Celexa, Cymbalta, Wellbutrin XL, Marvelon, Lupron, Visanne, Amitriptyline, Gabapentin, Oxycodone, Percocet, Flexeril and enough Advil and Aleve to really kill a liver.

After doing this all alone and I mean alone. I know my mother cares now but I don't really think at the time she believed me. So I battled Chronic Headaches, to migraines, to Massive pelvic cramping and rectal pain at the time I was 10-15 yrs old, I would say around that time is when 100% I did the rest on my own.

So when I look back on what I went through the amount of times I contemplated suicide, the side effects of all the medications and the Endo pain that wasn't even diagnosed with until I was 27 years old and what I had to go through I had no choice but to speak for those who couldn't. There was and is no way I was going to keep silent. I will never let my daughter who possibly could end up having Endo go through this or any other person. I was alone, I was depressed and even my family would call me a Hypochondriac. You as Endosisters know what I am talking about and I am sure you have all been through so many of the same situations and/or different.

How can I keep quiet? Why do they not want to help us?

Anyways because of all that I went through I could not imagine for a second someone else going through the torture that I went through. So this is why I help others and not even just Endosisters but my Fibro friends, and anyone with Chronic illnesses because I know what it is like and I would never want someone to go through this alone like I did.

Where would the Pharmaceutical companies be without us #endo sufferers?

I posted an update on Facebook because something bothered me recently and it struck me that we keep all these companies in business and at what cost to us? 

From the time I was diagnosed in 2007 I spent $4500 on 9 months of Lupron injections, almost $2000 on BCP, and around $5000 on various meds such as Visanne, Antidepressants and pain meds. 

So imagine it......179 million women spend around $10,000 in 6 years just on meds alone to treat Endo not including, surgeries, tests etc. Imagine!!!! 

What if we said, enough is enough and we stopped? That would bring down so many Pharmaceutical companies it would be maddening. I wish this is something we could all do but I know there would be no way for this to happen since we suffer so greatly, however if we keep these companies in business and the government really controls those companies we will never get the surgeons we need.

This is so upsetting yet so clear on how we have been taken advantage of and swept under the rug just for the sake of money. We are worth nothing to them and we will continue to suffer because at the end of the day the only thing that matters is money in the pockets of the Pharmaceutical companies and Government.

That is just my thought for the day.

Don't Touch Me! #Endometriosis #exams #TVUS

At the age of 13 was the first time I had experienced a trans-vaginal ultrasound and boy did it even hurt back then. There were no cysts found and the left side hurt a lot when she did the exam and she said that it was possibly Endometriosis but did nothing again for it just gave me some meds to take.

From that day forward I have been subjected to so many Physical exams either by hand or by machine, vaginally and rectally. I even got lucky to have most of them done twice at one time because of interns and because they need to train and what better person to train on than me right? UGH

I approached my last exam recently which happened to be a leep. It wasn't so much that I was afraid of what they were going to do but I really started to get severe anxiety about someone touching me down there period. I started to panic and in the waiting room a lady looked at me and said "are you okay? You seem to really nervous." It was then that I realized that I am done. I want people to stop touching me period. I don't want another pelvic/vaginal/rectal exam I want to be left alone almost to the point that I am probably not going to go see a doctor again because I am that done.

I have had every exam in the book from the time I was 13 to 36 yrs old and all of you who not only suffer with just Endometriosis can totally understand this. If it wasn't the painful sex it was yeast infections, cysts, Endometriosis, PID, High grade lesions on the cervix, rectal pain, bladder pain etc. How many times can someone be subjected to this? I feel so completely violated that I can barely stand my husband to even touch me. I hate it. I want no one to go near me.

It's sad when you think about what this disease has done to us because its not only the physical pain but its also what it does to us mentally. This disease has stolen my life and I want my life back but how? Is that even possible at this point?