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!


  1. Great idea Erin and Shirley - this can be an excellent resource for women in Metro Vancouver, BC or anywhere! Good luck with the blog!

  2. Good idea. I'll help spread the word.

  3. Way to go ! As a female working on a gynecology ward I realize the importance of sharing info, experiences and contacts. This exchange will help so many and instill a feeling of hope.

  4. Way to go ! What a wonderful idea. As a female working on a gynecology ward I realize how important the exchange of experiences, resources and contacts can be. This can not only normalize the feelings of frustrations associated with endometriosis but provide hope for women with this dreadful condition.

  5. What a wonderful idea to blog about endo. As a female working on a gynecology ward I think this exchange of experiences, information and resources will be so helpful. Endometriosis is such a frustrating condition and being able to share those feelings with others will help alleviate some of the emotional pain and offer hope.

  6. Great initiative, Erin. Check out CBC radio's Sunday Morning show from February 6 - excellent segment on chronic pain management.

  7. .
    It's a brave and wonderful thing you are doing, Erin.

    Best wishes for your blog and for your happy future life.

  8. Wow! What a gorgeous daughter and mother team! Go Girls!

  9. 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 fourth.

    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 natural 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

  10. great job on the blog Erin! you are so amazing! keep your chin up,

  11. Have you checked out It might put you in touch with a wider network of women in similar situations while you establish a local support group.

  12. Hey,

    Thank you for this blog. I have battled endo for the last decade. I am 33 now. And now while I have no new growths as of my last lap, I have Chronic Pelvic Pain Syndrome. Three laps, pre sacral neurectomy, IUD, Synarel, NSAIDs, antispasmodics, anti depressants, anti convulsants and long term opiods daily. I was an RN myself til I had to go off on LTD. The stress of getting my work/disability carrier to take my condition seriously left me stressed to the point of developing Shingles at age 26. Eventually an appeal got me my benefits, with much support from my GP and the specialist at the Endo clinic. That was over
    four years ago. I've been seen at the Endo/pelvic pain clinc many times and they are amazing people. Dr. Williams was so kind and empathetic and my confidence in her made trying some of the therapies less scary.

    I don't have time to say all I want to, just wanted to leave a note to thank you for this. It's bookmarked. And your story seems so much like my own I'm getting emotional. It really is an isolating illness and many people do not want to hear about it. As awful as it is to hear you have it too, I just want you to know you really are not alone. And I'd like to compare notes one day with you, and any other woman with this, as I've learned a few things over the years. Conventional and 'alternative'. Diet has made a big difference, as well as CBT and supplements. Not enough to get me working again, but enough to affect the abdominal swelling I get daily.

    Thank you so much

  13. Thanks for sharing your story.
    I am wondering if you tried classical homeopathy. Many people say they have tried everything but never tried it, though it is one of the most popular and effective medicines in the world (just not well known in North America.)Here is a good article by an expert homeopath about the treatment of endometriosis:


    Sonya McLeod, BA, DCH
    Little Mountain Homeopathy

  14. Yea Erin! I am so thrilled that you started this blog as there is definitely strength in numbers & if so many of us have this disease, what's up with the lack of local support?? I live in Victoria & had to finally come to Vancouver for treatment for my stage 4 endo (Dr Allaire) but couldn't believe there were no support groups there! I have felt very lonely waiting in pain for: first an appointment, and now, finally, surgery. My best advice to any women who have endo or think they have it, is first have a laparoscopy so pathology can give you a diagnosis & then get multiple opinions from several doctors re treatment. You don't have to sign over your girl bits if you don't want to! Many (most) docs are old school and still in Dark Ages with treatment. If I hear the H word (hysterectomy) one more time... as if this is a cure. It isn't & it can lead to MORE complications. I know because I just dodged a bullet and am finally getting surgery that will excise the endo & let me keep my lady stuff! It just has to be done by someone who recognizes endo in all it's forms & colours, so it HAS to be a specialist & not your average surgeon.

  15. I suffered years with this disease. I had several surgeries and refused hormonal treatment due to the family risk of breast cancer. My Mom died of breast cancer when I was a young girl, so I had no one to turn to when I was diagnosed with Endo. I found the depression that went along with the chronic pain, painful sex, cancelling social events at the last minute, sleepless nights, and exhaustion absolutely frustrating.
    The worst part of all of this for me was that I had a female boss who continually humiliated me by saying "I have employees who have cancer who don't call in sick as often as you". She tried to have me fired on several occasions and I had to produce all medical records of surgery, medications, and Dr visits. I needed to keep my job as I lived alone.
    This is a terrible disease that has so many implications that people don't understand. This boss also used to say to can you be sick one day and then look so good the next day........I spent many, many days alone crying feeling hopeless. I too had many visits to the emergency room for demerol shots to quell the pain. I hope you can form a group and help each other.

  16. Hi Erin! Thank you for creating this blog! It takes a lot of courage speak so candidly about chronic pain and Endo. 2 years ago, I started developing chronic pain due to undiagnosed colon problems. I used to be an incredibly active and vibrant person... but physical pain has changed me and affected every area of my life quite dramatically. It has been challenging to stay positive. I have never had the courage to speak publicly about it, and I do feel quite isolated dealing with the chronic pain. I am so inspired by your story of perseverance! Thank you for reaching out. It is comforting to know that I am not alone in my journey to find ways of coping/living with/curing my chronic pain. Thanks again! I will continue to check this blog as a resource. Keep up the good work! (also, BIG CHEERS to your mom for providing such amazing support!! :)

  17. Please Please go to They have answers that are not widely known! I am now endo free because of excision surgery that got every last piece of endo so that it cannot recur! People travel from all over to this center. Please visit the site!

  18. Hi Erin
    I am an endo 'survivor' and spent many years in debilitating pain. At that time, there were very few doctors who had heard of it and fewer who knew how to treat it.
    I have always thought that endo information should be available to young women as part of their High School education. I think it is one avenue to help inform women about this terrible disease.

  19. Hi Erin,
    This is a wonderful blog, and I was very happy to read your story in the Georgia Straight. I have recently been diagnosed with Endo. and I am pretty freaked out not knowing much about it. I have been reading a fantastic book called "Women's Bodies, Women's Wisdom" by Dr. Christiane Northrup. It is an amazing book and gives more of a holistic approach to women's illnesses.

    Thanks again!

  20. Hey Everyone,

    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.


  21. My Story - Part I

    I was struck by your story, when I read it for the first time a few days ago in the Georgia Straight, as your story mirrors in a lot of ways my own experiences and struggles.

    I do not have Endo (as far as I know), but my struggle has been with uterine fibroids for many years and now with ovarian cysts.

    It takes a lot of courage to share your own struggle with Endo in such a public way. And I was inspired by you to post on this blog.

    I know in the beginning of my own struggles with fibroids a few years ago, I felt very alone and isolated and I felt like I was facing an uphill battle with some of the people in the medical profession, to get some much needed help. I did not know where to turn or what to do.

    The most common feedback I got from the medical professionals in the beginning was to get a "hysterectomy," after I found out that I had fibroids. As if my uterus was an inconsequential organ, that did not serve any purpose. It was extremely frustrating advice, as I wanted to have children and I was still young.

    And the other advice I received, as I was progressively getting worse from other people in the medical field was "there is no reason, that we can see why you can't get pregnant, just keep on trying."

    Well with all due respect to those people in the medical profession, that gave me this advice over and over again, the reason that I found out that I even had fibroids was that I was already bleeding heavily and I could not get pregnant. So I would think with my non-medical knowledge and background, that logically speaking, that would have counted as a reason. But that is just one person's opinion.

    But I have also been very lucky, as I educated myself more on fibroids and the symptoms, asked questions and spoke more openly about my story and what I was going through, to get much needed advice, support and help from other people both in the medical profession and outside the medical profession as well. I cannot thank those people enough who supported me and helped me through such a trying period in my life.

    I too have faced the years of constant haemorrhaging and it was happening to me on a monthly basis, though at the time I did not realize what was happening, till the haemorrhaging got so bad that I ended up in emergency and I had to be put on IV's and facing possible blood transfusions. I could bleed and frequently did bleed profusely for many days in a month, with just a few days break in-between from the bleeding and the haemorrhaging. And as there was no rhyme or reason to when or where I would bleed, it was hard to plan things. I was constantly having to cancel plans.

    And the constant pain that I faced for years was just indescribable. I have never felt pain like that in my life. Pain so bad, I would be doubled over and gasping for breath.

  22. My Story – Part II

    I also ended up so severely anaemic, that I was almost comatose from the years of heavy bleeding. I had to be put on iron which did not really help, as the bleeding was just too bad.

    And there were days on end, where I was just too weak to even have the energy to lift my head. On the days that people saw me, when I seemed fine or looked relatively fine, there were many more days that I was non-functional.

    There was also the unexplained and rapid weight gain, that I faced during this period. And for someone who had always been considered either underweight or at a healthy weight my whole life, it was alarming and I knew that there was something wrong. No matter what I did, I gained weight. I went up 8 sizes in a period of a few years. And I would get helpful comments like "wow, you have really let yourself go", "are you pregnant?" - this because, the fibroids had so distended my belly that I looked pregnant.

    And as one medical professional said to me during this period, it was like I had been pregnant at the time that I saw him for 3 years straight with the attendant changes, without actually being pregnant and instead I was bleeding heavily and hemorrhaging and growing fibroids.

    Numerous blood tests later, ultrasounds, acupuncture, yoga, dance classes, alternative medicines, changing my eating habits (though this particular change had started, before I had even been diagnosed with having fibroids) and four surgeries/procedures in a period of about 2 years, with one of the surgeries being the removal of the fibroids (an abdominal myomectomy) and with a nice network of scar tissue, here I am.

    And a month after the abdominal myomectomy, I went down eight sizes. I did nothing else different, the only difference being the abdominal myomectomy surgery. And at the present time, I am still losing weight. I was gaining weight till the day of my surgery.

    I am fibroid - free so far, as of my last ultrasound, but I am growing cysts like weeds (it seems), which brings with it, its own set of problems. But compared with what I experienced for so many years, with the fibroids, what I am facing now seems a lot more manageable.

    I also stopped taking any medications about 6 months before my abdominal myomectomy (which was my second surgery). The medications were getting stronger and stronger with awful side effects and these medications were having no discernable effect on the pain, I was experiencing and the fibroids were still growing rapidly. And I was still bleeding profusely.

    In the months leading up to the abdominal myomectomy surgery and after the surgery, I only took vitamins and iron. I still take the vitamins and iron, but I still take no pain medications (unless, absolutely necessary) and the most I will take is an Advil or a Tylenol and only once a day.

    I am not a big fan of pain, in fact, I would rather do without pain, but I refused to keep on trying temporary stop-gap measures that were not really helping the situation.

    I still have pain, I still bleed heavily, I am still anaemic and I am still not pregnant and I still get tired easily, but it is just not on the same scale. So I would say my "quality of life" has improved.

    And I would be very interested in being a part of a support group, where there is more face to face meetings as well.

    Too many women are suffering in silence. I know I did suffer in silence, in the beginning.

  23. I too suffer from endo and started my own blog too. I was given your article to read in the Georgia Straight by my husband and I must say that I commend you for posting your story and I have been wanting to get a support group started for years but haven't been able to really figure out how to do that. I am in for starting a local group here in Vancouver and the GVRD. Maybe we can find a community centre or library or church room we can use so we can get together and share our stories.

  24. Wonderful to hear that the real you is emerging Erin. Keep it up!

  25. Just had my laparoscopic excision of my severe stage 4 endometriosis-my left ovary was tethered to my sigmoid colon with a 3cm choc cycst w/ some add'l adhesions to remove. (I had previously had a bowel resection 10 months earlier, whereupon I was diagnosed with the disease. (Although my ex-gp ignored all my classic endo symptoms for years and kept misdiagnosing me. Also put me on SSRIs. She refused to refer me onto a gyne, because she thought she knew more than me- ignoring the fact my sister had had a hysterectomy at 39 for endo.) Three & a half weeks after this latest surgery, my chronic pain is gone & there's an 80% chance it will not return, since it was cut out, not ablated. Go see Dr Catherine Allaire at BC Women's Hospital. She's the top endo surgeon/doc on the West Coast, maybe in all of Canada. I researched her background, training, she is on the committee board for Society of Gynecologist and Obstetrics of Canada. Her care was on a higher level of expertise than I had previously encountered. ie She performed my untrasound herself, with another consulting doctor assisting, and gave me the most thorough pelvic I had ever experienced. Prior to coming, I had to fill out an extensive endo questionaire to assess pain, symptoms, etc. She's a fabulous doctor, who actually listened and gave me choices, instead of an ultimatum. With my 5 previous docs all recommending a complete clearing hysterectomy, she never once said the "H" word during our consult. A month later, I was a day patient at UBC & now on the road to wellness with all my sexual organs in tact. She aslo does in vitro for endo pts w/ fertility issues. Not to take advantage of her talent in treating this disease would be a shame.

  26. Hi everyone,

    I also have suffered from stage 3 endo. it begain in highschool and continued into my adult years.I was one of those girls would would be absent the first day of my cycle due to the dibilitating pain in my abdomen and the heavy bleeding I faced. the only medication that helped some of the pain was extra strength motrin. To now I read can impact your fertility.

    I thought everything would be fine after the surgery to remove all the endo, the cysts on my overies, the fibroid tumour that was growing inside my uterus and the repositioning of my overies for my husband and I to start TTC but wow was I mislead. It has been a year and 6 months since the surgery, 3 Chlomid cycles and 3 IUI cycles with fertility injections all to which resulted in BFNs..

    I recently found an article that a Doctor in California wrote regarding Endo and IVF, he gave me more information about Endo then my own OB and Fertility Doctor did. I really can not understand why Doctors still recommend 3 tries of each form of assisted fertility knowing that IVF could be the only answer to a women with severe Endo. it has frustrated me that none of the doctors could have given me ways to help elieviate the symptoms except throw out a 5 year plan if you want children before recommending a hysterectemy.

    My husband and I are trying to get a petition started to get the government to consider covering IVF for more than just blocked tubes.

    It is time we all take a stand and we all fight for our health. I can not believe that my tax dollars go to help people who are unemployed for whatever the reason but will not go towards helping people who can not have a family due to medical issues that are out of their control.

  27. Hello,
    My name is Meredith Woolley and I'm a Women's Counsellor specializing in Chronic Pelvic Pain. If you are looking for support in the form of counselling, please visit my website at I am located in downtown Vancouver, BC Canada.

    Meredith Woolley, MC CCC #7215