Wednesday, November 13, 2013

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.

Monday, November 11, 2013

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?  

Sunday, November 10, 2013

The Faces of Endo

When I first started this project I didn't expect this many women to take part. Already there are 343 and I think its so amazing. It really puts things in perspective doesn't it? I am so thankful for all these women I have met via Facebook but mostly Twitter. Twitter has been my life line, and whenever I am low there is no other places I would rather be then with thousands of women on at the same time supporting each other. Facebook you have to watch what you say but on Twitter I can be me and it doesn't matter to me what people think. I don't let people I know follow me because I would prefer to have that place as somewhere I can go without being judged. The Faces of Endo has made me realize that there are so many of us and that our voice really needs to be heard. Enough is Enough already. Our own families believe what these doctors say and expect us to get better after surgery or through meds, pregnancy and hysterectomy. They don't seem to understand that 80% of Endo sufferers know more than them. It is really sad to be honest, but what is really sad is that we are living it and at times barely hanging on. When will the world know what this disease is? How loud are we going to be when march together at the Million Woman March? I am going to be loud that is a give in, but I hope that our presents is what does it and catches the attention all around the world. We will not back down, We will be heard and we will not suffer like this anymore at the hands of untrained skilled surgeons or tormented by doctors that have no idea what Endo is and make us feel so little instead of just listening to us. 


Monday, November 4, 2013

Coming off the continuous BCP after 7 yrs

Every now and then I get fed up and want to come off the pill. I have been on it so long and I don't want any medications in my system, I want to go natural. This has been a fight for me since I have been on them.

For me it is great that I don't get a period, I could care less to ever have one again and that is a plus being on the pill however the main reason I have stayed on it is because my body for some reason can't level its hormones on its own. Between the Progesterone and Estrogen one of them elevates and dominates the other. I used to think I was estrogen dominant since I had Endo but lately I have been thinking its more progesterone because when I was on Visanne which is progesterone only after a month I started to break out in red pimple like spots on my face, neck, back and chest. My breast would start to hurt and become overly sensitive and my mental state would deteriorate. When I come off the pill this happens to me like clockwork after the first month, then I get scared and go back on. I just remember mentally how I used to be before being diagnosed and it was hell. I had no control over my emotions however I want off. My body for some reason needs to feel pregnant.

What I find funny is that a majority of Endo sufferers are the opposite, very sick during pregnancy and deathly ill on the BCP. So why is my body different than the majority? People have migraines on them where for me it stopped them.

I used to suffer from chronic headaches from the age of 10 and migraines from the age of 15. The migraines were so debilitating I would end up in the ER because they would hit me and wake me up from my sleep and nothing I took would help and at first they used to last 24 hrs but the last one was 100+ hrs. Once being on the pill I never had a migraine again so that scares me too.

I want to feel normal again, but I also don't want to feel like this if I come off of it.

Have any of you had the same symptoms as me or were you the complete opposite?