Being Positive about your future and Endometriosis or Chronic illness

When someone is dealt the cards we have been we often feel relief at first that finally something was found and that you are not going crazy however after that happens comes the anger, frustration and negativity and sometimes that takes priority over everything and we focus on the negative aspects instead of trying to forge ahead. I am guilty of this completely and I think because of the medical neglect and lack of compassion I have developed an obsession with Endometriosis to be honest. The negativity surrounds me with this disease and I can't focus on anything else but what it is doing to me physically and mentally.

I have had many Endosisters message me about how good social media has been through their journey and some that find it so negative and they can't seem to find hope with all the negative tweets.

So with their inspiration as well as one girl in particular I am making this blog post about the positive things that I have encountered or dealt with while battling this disease we call Endometriosis.

Since my surgery was done well before the time of me getting into the social media aspects like with Facebook and Twitter I landed at a place called Medhelp in the ovarian cancer forum. I was just told I had a 10 cm complex ovarian cyst. I was scared and needed some advice. To this day I could not thank them enough. I have known them now for over 6 yrs, some have cancer, some have thyroid issues, Endo etc. The advice I remember the most... well there were two. The first one was that 99.9% of cysts are benign. That was repeated over and over and over again. The other one was that you have one chance to get it done right so do it the first time, find the best surgeon for your disease because it is your body not theirs. They helped me through dark times and we have all remained friends. We have lost some cysters throughout the years to ovarian cancer, brain cancer and a couple right now battling ovarian and breast cancer. We are a tight unite who always end back up meeting up in our private Facebook Group. We are the BBBC (The Bulge Battling Battalion Cysters) We are a united front and I think having positive friends like that are crucial to your journey no matter what disease you have. They have saved my life for so many years just by being there.

Another positive thing that has happened is that I remained on Medhelp answering various questions for others since 2006 and had the Endometriosis Forum opened just over a year or two ago and am now the Forum leader there. Most people come and go and never stay so someone needs to be there to help and in return it has helped me mentally because I am able to be there for others who are lost and need answers. I have learned a lot since being the Forum leader thanks to the Dr. Redwine, the CEC and various websites and my knowledge about the disease has been key and for me that is a positive thing. knowledge is power.

In Feb 2009 I signed up for Twitter however did not tweet hardly anything because I just didn't like the format at all however Nov 2012 I took to twitter again and for some reason searched "Endometriosis" and that is where my life changed. I met so many wonderful women who have been so supportive over the last year and not all Endosisters. I have met many men and women with Lymes, MS, EDS, Lupus (spoonies) that have changed my outlook on many things. My goal was to try to be positive and and help others during their journey but sometimes when I am in a dark place because of various meds or seasonal depression I can't seem to be positive but then I think of my friend @_EndoHappy that always posts positive things and its then that is when I realize that I need to keep focused on the positive as it will do no good me dragging everyone down with my own contagious negativity.

So besides all that above the positive things have been; Being diagnosed and finally getting answers after 14 yrs, A very successful surgery in 2007 for Deep infiltrating Endometriosis and recto-vaginal septum. The relief I got from that surgery was amazing. I am lucky and happy that on top of a great surgeon operating on me I found a pill that has worked since 2007 which is Marvelon. It has changed my life completely. I am no longer bedridden and in crippling pain anymore, I haven't had a period in 7 yrs !!!  I no longer get the hormonal migraines that plagued and hospitalized me for 12 yrs, I no longer get the rectal pain that would stop me in my tracks, no more chronic nausea everyday and most of all the hormonal fluctuation are pretty much under control. I refuse to be a victim of this disease or be negative because when you focus on the bad things you stop living. So my advice for everyone battling Chronic pain or illnesses is that focusing on what is important everyday and think of the positives that have come out of diagnoses and try to be happy. When you focus on the negative that is what your life becomes and you dig yourself deep into a pit of loneliness and depression. Don't think of the things you can't do anymore, focus and be happy about the little things that you did do. Try to encourage other Endosisters new to the disease or old that there is hope and we are that much closer than we were yesterday. There is no cure but there is hope for pain to be decreased dramatically through proper surgery with proper tools and proper surgeons, we need to be the voices that make that happen and the voice to the newly diagnosed that there is hope but it is harder to obtain but not impossible to get to. Yes I still need another surgery not because the surgery in 2007 was not successful, it is because I had it so deep and in order not to cause more damage to the nerves and other organs they went as deep as they possibly could. So the Endo didn't spread it just kept growing in two spots however the disease is not as bad as it was before the first surgery but because I also contracted PID 2 yrs after my first surgery it made my insides also like glue with severe adhesion's so the pain I have to this day is not 100% Endo related. So I urge all of you to think before going into surgery and to find the best possible surgeon to operate and do not accept anything less because when you do, you are most likely to suffer a lot more  and a lot longer than if you had got the first surgery done right the first time and for those that have had horrible surgeries focus on the best now its never too late. Save, raise money, have bake sales etc and do whatever it takes to get to the see the best surgeon you can and you will be happy in the end that you did. I am not saying that some people don't have aggressive Endo but what I am saying that most of the people I talk to on social media and in person have not had a surgery done by one of the top surgeons and to be honest how many are there about 10? We are limited and its hard but it is not impossible. If you can't get to one of the top ones at least find a reputable surgeon who has done a lot of Endo surgeries and that excises the disease and that can take it off the bowels, bladder etc. 

My final words for all of you is to Focus, Be positive and push forward. Don't stop until you get to where you need to be and make it happen because only you have the power to change things no one else. 

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.

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?