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
Hey Erin, I'm 24 and from New York and I found your blog because I have a google alert on Endometriosis. It is debilitating for me as well but yours sounds much worse. I just wanted to write you and encourage you and let you know that you aren't alone. I think far more women are suffering from this disease than necessary and not enough funding and attention has been given to it. Keep up the fight!
ReplyDeleteHi Erin,
ReplyDeleteI read your article in the straight today. I myself had very painful periods for many years and although I wasn't diagnosed with endometriosis, I know how much it can effect your quality of life.
I myself found relief with bio-energy healing, an alternative energy therapy that I am now a practitioner of myself. The therapy changed my life and my career path, so I wanted to take a moment to connect with you.
I wish you the best with your health and happiness!
Kaia Duggan
www.bio-energy-clinic.com
Hi My Name is Fabiana and I'm 35. I'm From Brazil and I know exactly how you fell. I had 3 surgeries and I'm up to do one more next month.
ReplyDeleteI also have a baby but the pregnancy didn't help me to get better, the opposite happened. My Endometriosis and pain got worse. Sometimes I think the doctors doesn't believe how painful it is.
We have some specialists here in Brazil but the treatments is just like the one you mentioned.
I'm taking Zoladex (It is similar to Lupron). And they want me o use IUD. We can keep in touch.
Erin, I know exactly what you have been living with, I have been living with it myself since I was in my early teens, and I will be fifty later this year. I will follow your blog and twitter, please follow mine at:
ReplyDeletehttp://tigerlilly61.blogspot.com/
Together with others who life with this disease can raise enough awareness so another young girl does not have to suffer the consequences of this horrible disease.
Cheers,
Tiger Lilly
Hello Erin, my name is Valeria I am 29 years old, I am from Brazil but living in Seattle and I have been experiencing a lot pain due to endometriosis since the age of 13. I am glad I found your blog as many others. We need to spread the word, and maybe one day we will look back and see that we made a difference in spread the awareness about this disease. Hugs from Seattle, WA.
ReplyDeleteHi Erin,
ReplyDeleteI just read the Straight article. Thank you for starting this blog. I'm very sorry to hear how terrible the condition has been for you. I wound up in hospital last fall with appendicitis, and they discovered a massive ovarian cyst (I'd had a large one before that ruptured without damaging anything, but it hurt like hell) and severe endometriosis. The ovary with the cyst was too damaged to save. I know my hormones have been out of whack for years and they seem normal now thanks to my naturopath, but I can empathize with the emotional roller coaster.
In January my period was so bad I couldn't move and burst into tears over the pain and the worry. February gave me one of the easiest ever. Now I don't know what to expect! But if it helps, my naturopath told me to take calcium supplements every day, suck on as many as I need the day of, and keep taking magnesium. For the pain I take arnica 200 ch. My naturopath also gave me injections in Dec and Jan for scar tissue (that's mostly where it hurt) and will be giving me neural therapy in my pelvic region -- it's a frequent treatment at his clinic, apparently.
Good luck to you and I hope I can be a part of something here. I'm 25. - Erika
i too suffer from Endo as well as Dysmenorrhea and was diagnosed back in 2004. I am from Vancouver as well and my husband found your story in the Georgia Straight and after reading it and checking out your blog I started my own blog on my Endo suffering. I would like to connect with others that are going through this so we can all support eachother and make some new friends.
ReplyDelete-A