Sunday, October 23, 2011

Confusing, Frustrating, disappointing!

Today is my wonderful and amazing boyfriend's birthday. I planned a nice lunch with his friends and got him a huge cake and some sparkling wine. It was a wonderful day, even though the day before I had an attack after having the worst service at Whole Foods. I ordered a cake a week in advance so it would be ready the day before and all I would have to do is be in and out. Lately, getting in and out is about all I can handle. I arrive and they charge me for a small instead of a large cake which I didn't realize.

After I paid they the tell me to go back in line and pay more, so I wait again. While in line I am looking at the paper which has the wording for the cake and they had spelt his name wrong to. It was a simple name and I told them five times on the phone the correct spelling.

So now they have to fix the cake. Maybe for someone else this delay would mean nothing but to a sick person like me it was exhausting. No one even appologized until I found myself at customer service complaining; they did nothing to compensate me for their mistakes. It seemed like forever and a Friday at  Whole Foods at 4 pm is literaly a nightmare! I kindly told the man what happened. He said sorry I will look into it and sent me on my way. I stood there looking at him, getting more upset due to the stress of even just planning any sort of event I began to bleed profusely - through my pants and so embarassed I am forced to run to the car.

Today is my boyfriend's actual birthday. After all these events I am now too tired to even accompany him out on the town with his friends. I feel terrible. I feel like I am letting him down. I worry what will his friends think? They are still just getting to know me.

I know he completely understands because he is a great and wonderful man who has seen what endo can do to me but most people have not. I just want to be out there with him but I cannot. This is sad.

I am 26 years old and cannot go out on the town with my boyfriend for his birthday because my body will not allow me. I so desperately want to be there with him, instead I am lying in our bed cramping, bleeding and crying from the pain. And then the disapointment that I am not normal and endo wins again.

What a life sentence. I never get a day off and I can'teven particapate in normal activities. I feel like I am a prisoner in my own body. I just so want to be there with him!

Erin Ross Coward

Wednesday, October 12, 2011

Confusing, frustrating and disappointing!

Wow, it has been a very long time since I wrote. 

Life has been so confusing, frustrating and disappointing. 

After months of being on bed rest too sick to function, I was given the chance to have my fifth surgery in August. I had to go through several doctors to finally return to Dr. Catherine Allaire. 

She is the best in town by the way after visiting many great doctors. After many scheduling difficulties I was given a day, which then was canceled and rebooked. To the woman who gave up her spot for me, thank you. 

I had been told in the summer I had been accepted to UBC for a two year program in the Education department in Elementary studies. I was so excited. 

I had worked so hard to get my first BA in art history and had dreamed of returning to school to become a teacher. The woman who gave me her spot saved me from having to have my surgery in the fall which would have meant I could not proceed with school and my dreams. 

Well, the day came and after five hours waiting hooked up to an IV I was told there was not enough time to do my surgery. I was heartbroken. My new boyfriend and I cried as he helped me get dressed. It felt like my life was begining to cave in on me. 

My dreams were disappearing and the thought of spending another month or two in bed horrified me. The next day I decided to just go to the ER and make them do it. I was lucky Allaire was there and I got my surgery. 

I had to stay in the hospital for a few days to recover which is usually rare. After my release I found out that I had a bladder infection and the hospital had forgot to tell me or treat me. I ended up back in the hospital. Finally I was on the road to recovery! Then another road block. 

In my first week of school I lifted a book bag which was too heavy and I ripped my ab wall near my incision. I ended up missing school and had to go back on meds. Meds in which I had worked extremely hard to get off of after the surgery. I felt helpless. I thought I was going to be kicked out of the program.

I have not yet but it is always in the back of my mind. Then my bleeding started up again. The surgery did not work. I was so upset. Most of my endo was removed except for a piece that was on my bowel. 

It was too dangerous to remove it. So now I have worry on my hands. What is wrong with me? This is not my Endo flaring up, I have been told my gushes of blood is something different. I just had my cervix cauterized, which is extremely painful. 

Again I am missing school. I am so afraid I am going to loose my spot in the program and my dream will be gone since I have a disease that I cannot control. Everyday I worry will I bleed. I have spent months thinking positive but now I am filled with worry. I work so hard at school and I never give up. 

I hope they do not give up on me. I keep trying to believe everything will work out but as some of you know, when you aren't in control of your own body anything can happen. 

-Erin Ross Coward

Wednesday, August 10, 2011

Erin's latest

Since the beginning of this year Erin has been living daily with severe chronic pain. She has also been diagnosed with adenomyosis which has caused a further increase in pain and bleeding. Due to thes factors she has been unable to work at all and spends a great deal of her time at home resting.

After a number of brief ER experiences, a plethora of narcotics and other drugs, along with all of the alternative therapies. she is now opting for surgery on August 17th under the skill and expertise of Dr. Allaire. We are hoping that this will alleviate the adhesions and growths from the adenomyosis and reduce her pain. Removal of the endo will occur as well.

Thanks for all of the support and I hope for a brighter future!

Wednesday, March 16, 2011

World Endometriosis Society launches first ever video for endo week March 11

The World Endometriosis Society (WES) today launched a  film to help an estimated 176 million women across the globe to recognise symptoms of endometriosis before their long-term health and quality of life are affected.

Vice-president of the European Parliament, Diana Wallis, urged women to take action:

“Don’t be like me. Don’t take no for an answer. If you feel something is wrong you could have endometriosis. There are things that can be done to help you. Go and get advice, but also make others aware, because I don’t want you to end up like me”.

Diana Wallis had a full hysterectomy, as a newly wed; an operation that could have been avoided with earlier diagnosis and treatment of her endometriosis.  She was never able to have children. Today, she urges young women not to compromise their fertility, like she did, and get help – and treatment –  early.

Check it out!

Saturday, March 5, 2011

Endometriosis Week March 7 to 13, 2011 affecting 176 million women worldwide

March marks Endometriosis Awareness around the globe.

Endometriosis Awareness Week is an annual event which gives women with endometriosis a real focus to raise awareness regionally, nationally and within local communities. Please check out the link below to find out more and support women who are struggling with this disease and wear yellow in support!

Friday, February 18, 2011

Georgia Straight newspaper features End Endo BC & Erin Coward's story

Erin Coward - Georgia Straight photo  
 Many thanks to the Georgia Straight weekly newspaper in Vancouver and health columnist Gail Johnson for their excellent article on endometriosis, featuring Erin Coward.

You can read the article at: 

We really appreciate all the kind comments from all around the world and hope this will be the start of creating a support group in Vancouver!

Erin says:

Thanks again for all the support and sharing your stories with me and others. I have been sick for over a week and I'm sorry for the late response. I hope in a few months we may be able to collectively, if your comfortable that is, come together and create our own support group. Maybe even meet face to face and help each other deal with our suffering.

I can tell you I have been through the ringer. Just came off all my opiates and have been dealing with an Endo attack with no masking of the pain for the first time since I was 18. It has been extremely scary and painful, but I was on so many meds and it was time for me to look at alternative ways of dealing with my pain again. This is not easy for anyone. I can tell you, I've cried everyday since stoping the drug therapies. Many people who have been present this week say they can see a different person in me since I've stopped taking the drugs and I see it too.

I know this is not a complete long term option because the pain is so sever, but I'm at least going to try and make a go of it. I have a great support group and wonderful friends who have been there this week encouraging me on. I guess this is going to be a new journey for me. I know I can't control the pain, but maybe through alternative medicine I can find new ways of trying to make peace with my pain. I guess i'm ready to feel now and not be doped up all the time. There is no other option for me I can't return to the ways I've been coping, because it was too deadly and made me a whole other person. If you can find the strength to do it, please try. I can tell you from the deadly experience I faced, sometimes drugs aren't the answer.

It totally sucked going through this last week. What has kept me motivated is that I'm not alone and hearing all of your stories. If you say to yourself you can do it, you can do whatever you set your mind to do. I've been telling myself this all week. I can do this. I can fight this. My grandma Ellen, if she were still alive would be incredibly proud of me and as we all use to tell her, "Your a tough old bird," I can now say I'm a tough young bird for trying this.

Please keep going and maybe one day we won't have to be in so much pain and suffering. Maybe one day there will be answers. We can only get these answers if we all keep pushing for them, so don't give up, find the strength to push through your pain. The answer is out there, we just have to find it and we can only do that by sticking together and not giving up.


Saturday, February 12, 2011

Thanks - from Erin Ross Coward

Hi Everyone:

I just wanted to first say thank you for the first few blogs and support. I want to let everyone know that there isn't enough being done to increase awareness of this disease.

By doing this blog, I hope we will be able to reach out together, share experiences, medical and or holistic treatments, but also create a better awareness of this horrible chronic pain illness that effects many women on an everyday basis.

There is not enough being done to create awareness and understanding about the disease and I can only hope that in time, we can all share our experiences and get the word out there so that maybe one day there will be a cure.

Right now Endo suffers are stuck to turn to drugs to mask the pain. This just gets us through the day and its not a solution but a band-aid to that covers the problem for a short time.

Our pain is constant and the flare ups are a million times worst.

When people ask me to explain to them the pain of having Endo I say: "Imagine everyday of your life you have the worst period you have ever had, now times that by ten and you have Endo."

Many of us resort to treating the Endo through drug therapies (some of which are extremely exhausting and have horrible side effects - I personally lost 22 pounds in one week after taking the drug Lupron, had hair loss and terrible headaches).

These treatments can be very draining and the failure of them frustrating. Sometimes they will work for one person, but not for another.

Then there are surgeries. I have had four to remove cysts and scar tissue. The problem with this is that it helps for a few months, but the scar tissue eventually grows back and so comes back the pain.

Please spread the word. There is no support group in Vancouver and I hope that within time and with this blog we can create one.

I also wanted to note that I would like to include in this group other diseases of chronic pain that affects females, since there are so many other chronic illnesses that can accompany Endo. I have two others now and may have a another.

Thank you for all your support and please continue to spread the word about the blog. If you have any questions please feel free to ask. I have had many operations, tried numerous treatments and am taking many meds to control the pain.

I have also tried holistic treatments and yoga/meditation. Right now I have a team of five different kinds of doctors working on my case to ease my pain.

I know various medical and naturopathic/holistic doctors and can try to answers your questions as best as possible.

I hope together we can make this blog a success and find a way to end Endo or in our life time control the pain factors and find better approaches to treat this disease

- Erin Ross-Coward

Friday, February 4, 2011

Welcome to End Endo BC! Please bookmark this blog and keep checking in for support on endometriosis

Hi everyone,

Welcome to End Endo BC - a new blog for women to connect with one another who are living with endometriosis and other chronic pain syndromes. Currently there are limited options for local young women to chat to one another about thier diagnosis, treatment options, lifestyle changes and successes!

I have been fortunate to have a great team of medical and alternative practitioners, as well as a supportive family and remain hopeful that by sharing our stories collectively we can become strong enough to overcome the challenges we face daily.

Please join me in this search for pain free health!