We made the announcement recently that $10 of every Ruby, as well as $1 for every item sold in our Etsy shop, will be donated to the excision surgery fundraisers listed on our website. We rebranded our Etsy shop to reflect that mission, and have a new line of heating pads/cold packs that will be a part of that mission. We are stoked to announce that The Natural Market in Groton, MA is interested in carrying the line in their store, and will give us the opportunity to help women in our community, as well as an opportunity to speak at the store about endometriosis. Here's a look at an evening in Kelsey's sewing room, getting a custom Ruby ready to travel to her new home! Kelsey hand sews several parts of each Ruby. Parks & Recreation is a favorite show to watch while sewing. Each Ruby takes at least 3 hours to make. She now comes with our new "Crafting for a Cause" label! Ruby watches atop a large bag of flax seed from The Natural Market, which we use in our heating pads. This little Ruby was custom ordered in pink for Michelle. She's completed and ready for her journey! Here's to spreading awareness and making a difference!
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Caitlin has been an active member and amazing source of support in our online and in-person support group for New England based women, Endo Sisters Healing Together, co-founded by AMAME Founder Kelsey Chin, and Stephanie Harrison. Here, she shares her story of battling Endometriosis and seeking excision surgery in the midst of pursuing her degree.
1. Tell us a little about yourself (name, age, where you're from) Hi! I’m Caitlin and I’m 23. I was born and raised in Boston, Massachusetts. I’m currently a Clinical Social Work (Mental Health/Trauma) student living in Baltimore presently. 2. When did you first show symptoms of endometriosis? I’m not really sure if my first periods at 12 were bad, but by 15 I knew something wasn’t right and I shouldn’t feel this bad, or exhausted! 3. When did you first seek medical attention for your symptoms? I was 16 when we went to my pediatrician and asked about my pain with periods. 4. What treatments did the doctors first try? First we tried a birth control, which made me VERY moody! After 6 months of that not helping, she said, I think you have Endometriosis and sent me to a well known specialist who got me in pretty quickly. In my first visit with him, he said “I’m 80% sure you have Endometriosis, and I can get you better” and scheduled my first laparoscopy for one month later. It was so fast, and new to me. 5. When were you surgically diagnosed with endometriosis? I was surgically diagnosed with Endometriosis in December 2008. They found ‘Stage 1 Endometriosis with clear and red lesions in the posterior cul de sac, and on both uterosacral ligaments.’ He used ablation to remove the lesions. My appendix also looked abnormal, so they ended up removing that too. 6. Were your symptoms relieved, and if so, for how long? Did you use hormonal suppression after surgery? The strange thing was, my most severe symptoms (GI related) were alleviated post-operatively, but I had some new ones come up such as stomach pressure, severe pain with having a BM and a lot of stomach bloating. I was told that they got everything, and I was fine. That these symptoms weren’t from my Endo and I’d have to deal. I was offered continuous birth control, which I was told I “could stay on until I decided to get pregnant” or Lupron. I chose continuous birth control. 7. Have you had any subsequent surgeries? So after that doctor offered me no other solutions to my existing pains, I decided to leave his practice. I stuck with a really great GYN, who didn’t surgically treat Endometriosis but helped explore options with me. In the fall of 2009, I went to college out of state and was planning to play Division 3 soccer just for fun. I had no idea everything would come tumbling down. We had intensive training and I literally could not run! It caused an awful pain in my left side. So, I was allowed to do all the other exercises. It was crazy how my body physically was becoming fit, but I was so sick – vomiting, in so much pain, so exhausted. So I spoke with my GYN and the school nurse, and they advised me to stop soccer and go home. I waited out a few more weeks, and come mid-September, I medically withdrew. I expected to be ‘okay’ post-surgery and that surgery gave me even more issues than I ever thought. It was an extremely hard time, and the school was not helpful in terms of finances so I ended up with $6,000 worth of debt for 3 weeks. So over the next year, I explored many options – went to a GI doctor who did an endoscopy (I ended up having erosive gastritis from NSAIDS, causing weight loss & pain) and colonoscopy. Went to a Urologist. No answers. I found another doctor who seemed promising. He was very anti-lupron, and helped explore some other options with me (physical therapy, diet changes, different meds…) before I decided surgery was needed in May 2011. That surgery showed: “Filmy adhesions of the sigmoid colon to the left pelvic wall, moderate GI adhesions of the ileum to the right anterior abdominal at the lower quadrant and mid quadrants, and a 1x1 cm peritoneal window at the interior margin of the right uterosacral ligament” but NO evidence of Endometriosis. So I stayed on continuous birth control, and things DID get better. I left to study abroad in England in September and I did pretty well over there. It wasn’t til spring 2012 that I started feeling worse. To make long stories shorter- I thought I found a truly great doctor, after researching about excision, and had surgery in November 2013. She “saw no Endometriosis, no scar tissue, nothing.” She said my issues weren’t Endometriosis. She offered me no answers, only mirena and (thankfully) pelvic PT. So I started pelvic PT in January 2014, and got my mirena out after a month of worsening pains. My GI symptoms almost immediately worsened off of birth control for the first time in 5 years amongst other issues. After an annoying hemorraghic cyst came up in June/July, I decided to have it removed and realized, why do two surgeries (the cyst and then eventual excision?), I contacted Dr. Robbins in Maine and scheduled my 4th laparascopy which I had August 7th, 2014. He found Endometriosis in newer locations than before: my bladder, uterosacral ligaments, rectum and cul de sac. He also repaired my ovary and suspended it to prevent adhesions, and did a presacral neurectomy! 8. How many total surgeries have you had, and do you plan on any in the future? I have had four now, one excision. I’m hoping there aren’t any more, but am happy I now have a doctor I trust and who knows what to look for and how to remove it! 9. How are you doing today? I’m so happy I trusted myself, found support groups on facebook such as Endometropolis where I learned about excision, the research and doctors who truly care. If I had listened to my last doctor, I have no idea what would have happened to me. My surgery worked out perfectly, as I start grad school in a few short weeks. I was really nervous that I would have to struggle through school until I could have excision. My doctor gave me hope, and believed in me and proved that I did not make these symptoms up; my endometriosis was VERY real and active. I’m very excited for my future and my career, and also want to incorporate Endometriosis awareness into it. I’m trying to start a Baltimore area support group, and do something to raise hope. It makes me so frustrated that I could’ve been better a long time ago, and my doctors mislead me for so long. 10. If you could tell fellow Endo Sisters one thing, what would that be? I would say trust your body. You know you best. Always, always get another opinion and do your research! 11. If you could tell medical professionals one thing, what would that be? NEVER tell a patient to “deal with pain”! That is not okay. I was told that by numerous doctors. Thankfully I’m very head strong and don’t take no for an answer, but some patients really do trust in their physicians. 12. What would you like the next generation to know about endometriosis? I would like them to know painful periods are not normal and not something you should deal with. I’d love for them to know about excision, and how successful it can be as well as the co-existing illnesses (IC, Adenomyosis, PFD…) that go along with Endo. I hope that more providers will start doing excision and steer away from Lupron/hormones especially in young women like myself. 13. Has living with endometriosis brought about any positive things you may not have experienced without living with this disease? It has made me a lot stronger and I think has made me work even harder to get where I have in terms of my career and schooling. School was my big distraction from pain, and gave me a lot of hope. I have also met a lot of wonderful people around the country and world who are some of my closest friends. Endometriosis and pain pushed me to fight harder, and to raise awareness and education to make sure the future generations don’t suffer or feel lost. 14. Please describe any awareness, advocacy, or support efforts, and how this changed your outlook. I’m planning to start a Baltimore area support group, and hope that we can have some in person meetings. Ideally, I’d love to start a walk or something to raise awareness since so many (especially women!) don’t know what Endometriosis is, how serious it is or about excision. I’m still recovering from my excision surgery but plan to start these things ASAP! 15. What do you recommend to women who are looking for help? Joining the facebook group “Endometropolis” – it’s more of a research based group, but I learned so much wonderful information! That was where I first heard about excision and thought “huh?! Why didn’t my doctors do this!? Hormones aren’t my only option?” Endopaedia.info is another great resource, as well as the centerforendo.com! The internet is such a powerful tool, especially for a disease like this that is far too common but ignored. Always do more research and be informed. I’ve heard from many doctors at 22 and younger: ‘we can remove your ovaries’, ‘try lupron’, ‘get pregnant’ or ‘just deal’. I’m so glad I did more research and didn’t listen to them, otherwise I would have given up. Don’t be afraid to reach out to others – whether it’s online in support groups, to your friends, teachers, family or doctors. *** Thank you Caitlin for sharing your story! For our list of recommended support groups, informational websites, and specialists, check out our Resources page. Endo Sisters Healing Together meets in Sharon, MA every second Saturday of the month. Join our Facebook group to learn more! Amanda is our second contributor in our Ask Me About My Endo Interview series, and I have to say how profoundly I identified with her story. It's amazing how often we hear our own stories from other Endo Sisters, and yet not much seems to change in the way endometriosis is diagnosed and treated. Stories like Amanda's remind us how essential it is that we raise awareness for endometriosis! Want to help us raise awareness? Check out our video challenge! Here's Amanda's story:
1. Tell us a little about yourself (name, age, where you're from) My name is Amanda. I’m 35 years old, single, and I’m a first grade teacher from Michigan. I was just diagnosed with endo a little over a year ago. 2. When did you first show symptoms of endometriosis? I didn’t know at the time, but I was showing symptoms of endo at 12 years old (1992). From the start my periods were heavy and painful and I always felt awful, but I just assumed this was “normal” because I never experienced anything else. 3. When did you first seek medical attention for your symptoms? I actually asked a doctor at a clinic about being put on birth control for heavy bleeding back in 2004. She mentioned the possibility of endometriosis and asked me a few questions, but I didn’t really have the other “classic” symptoms and since I didn’t have insurance at the time a laparoscopy to diagnose me was not an option. I never thought about endo again until I was rushed into emergency surgery and diagnosed in 2013. 4. What treatments did the doctors first try? I can no longer take regular birth control due to other health conditions (which leaves out a lot of treatment options), so my first treatment was a progestin only pill. We tried a few different doses, and a higher dose seemed to control my pain, but the side effects were worse than the pain and fatigue from endo. A few of my doctors want to try other hormonal treatments like Mirena or Lupron, but because of the severity of the side effects I have already experienced, I have decided against this and am now beginning to plan on excision surgery. 5. When were you surgically diagnosed with endometriosis? Please include any pertinent information about locations of lesions, organ involvement, stage (if given), type of surgical intervention done at first surgery (ablation, fulguration, excision). On April 26, 2013 I had noticed a slight pain in my right lower abdomen that had been there for a few days and hadn’t moved. I went to the doctor thinking I might have appendicitis. After hanging around the hospital all day waiting for tests and doctors, I was surprised to find out I had an almost 9 cm ovarian cyst that had flipped over my ovary and cut off the blood supply! I was rushed into emergency surgery that evening, which took over 3 hours. The next morning, the surgeon told me that they had had to remove the cyst along with the right ovary and fallopian tube, which had been flipped over and “glued” to my uterus from scar tissue, and she also told me that I had severe endometriosis. The endo had already caused extensive scarring on the pelvic sidewall, cul-du-sac obliteration (uterus and rectum stuck together), an enlarged left ovary, and adhesions of the left ovary and colon to the pelvic wall. I was rated at stage IV due to the involvement of the cul-du-sac and removal of one ovary. Since finding endo was unexpected and the surgery was primarily to remove the cyst, no excision was done at this time. 6. Were your symptoms relieved, and if so, for how long? Did you use hormonal suppression after surgery? I didn’t have many symptoms before or immediately after surgery, however, I began having daily pain about 4 months after my surgery. I did try Norethindrone after surgery at different doses and it did greatly relieve the pain, but the side effects lowered my quality of life so significantly it was not worth continuing. 7. Have you had any subsequent surgeries? Please include pertinent information about location of lesions, adhesions, organ involvement, stage (if given), type of surgical intervention. I have not had any further surgeries but am planning to have excision soon, hopefully at the Center for Endometriosis Care in Atlanta. 8. How many total surgeries have you had, and do you plan on any in the future? One so far (ovary/tube/cyst removal and diagnosis of endo) and hoping to have at least one more for excision. 9. How are you doing today? Please include any information you feel comfortable sharing about your quality of life, fulfillment in your career, relationships and family life, and outlook for the future. I feel lucky that although I have advanced disease, I am able to still work full time and function normally for the most part. Doctors have suggested that because I have probably had endo for a long time, I have become conditioned to the pain and therefore have a higher tolerance and am able to cope with more than normal. I also feel incredibly lucky to be able to take over the counter and occasional prescribed pain medications that help with the pain and do not cause any drowsiness or side effects. I do still experience pain every day – sometimes a little, sometimes a lot - but I still enjoy my job teaching, traveling to spend time with my family, and I even began dating again a few months ago! One big thing that has changed since my diagnosis is my favorite pastime, running. I had begun a 10k training program 5 days before my surgery, and it had to go on the back burner while my incisions healed. It was hard to get back into running as I adjusted to hormonal treatment, suffered a ruptured cyst this past winter, and dealt with varying levels of daily pain. Just yesterday I began the training program over again - I hope to someday be able to run 10ks or even marathons for endo awareness!! 10. If you could tell fellow Endo Sisters one thing, what would that be? You are not alone – take it one day at a time and lean on the rest of us for support! 11. If you could tell medical professionals one thing, what would that be? PLEASE educate yourself on endo – it is unacceptable how few doctors know how to treat this disease, and those who do not don’t seem to bother to refer patients to someone who can. 12. What would you like the next generation to know about endometriosis? Early diagnosis and treatment can change your life! Periods SHOULDN’T be painful. They will be uncomfortable, but if you are in severe pain, it’s a sign that something is wrong. Find a doctor that will listen and fight for your body! 13. Has living with endometriosis brought about any positive things you may not have experienced without living with this disease? I have developed a passion for endometriosis awareness. Talking about my experience has led some of my friends to discuss endo with their doctors as well! I know that I can change lives by being open and honest about endometriosis. Meeting a ton of wonderful “endo sisters” through support groups has been a big plus too! 14. Please describe any awareness, advocacy, or support efforts, and how this changed your outlook. At the advice of my doctor, I joined several online support groups for endometriosis patients. I wouldn’t be here today without them. I have learned the truth about endometriosis through these groups, even while doctors were trying to tell me I was not sick or that there was nothing that could be done. Not only did the women in these group listen to my struggles, they’ve helped me find good, experienced doctors who listen, understand endo, and are willing to treat me. I “came out of the disease closet” this year and began publically talking about having endo, first through Facebook and I am hoping to begin an awareness blog in the near future. Talking openly about it has connected me to others with the disease and informed other women too! My mom has been my biggest supporter and travelled to help me at home after my surgery and a recent hospital visit. I bought her an endometriosis awareness shirt this year, and she scheduled her weekly errands for the same day as the Worldwide Endo March so she could wear it in public and talk to everyone she met about endo! 15. What do you recommend to women who are looking for help? Be prepared to fight. SO many women have their pain and symptoms dismissed by their doctor – they’re told periods are supposed to be painful and/or that the symptoms are in their head. They’re not! Endometriosis is very real, and if your doctor doesn’t believe you, find one that does. Reach out to support groups and endometriosis webpages online to help you find someone who will listen. The right doctors are out there and there is hope! 16. Please include any additional information you would like to have in the post. I included this picture because it is the last picture of me taken before my diagnosis, less than a month before my surgery. I didn’t know it, but in this picture I already had a growth the size of a softball in my belly and in less than a month, my whole life would change. I think it really shows how aware we need to be about endometriosis! *** Thank you SO much for sharing your story and advocating for endometriosis awareness! We would love to see your blog when it is created! :) One of our goals at Ask Me About My Endo is to spread awareness by getting people talking about their experience with the disease. We have begun a new series on the blog where we interview people with endometriosis to hear first hand what it is like to live with this disease. For this installment, we spoke with a woman from Florida who is fighting against the odds to have a life changing surgery.
1. Tell us a little about yourself (name, age, where you're from) Brandie, 31years old, and I've lived in Jacksonville, Florida my whole life. 2. When did you first show symptoms of endometriosis? 12 years old, when I started my menstrual cycle. 3. When did you first seek medical attention for your symptoms? At 15 years old I went to a gynecologist and told them what was going on. They put me on birth control to see if it would help with cramps and heavy bleeding. 4. What treatments did the doctors first try? They first tried birth control pills when I was 15 years old. I stayed on birth control pills for 3 years, and at 18 they put me on the depo shot. I received 1 shot, but then I put on weight. I was bleeding all the time, so I contacted my hemo-oncologist because I have Von Williebrand Disease. I thought something was wrong with my bleeding disorder. My doctor asked what I was taking for birth control, so I told him about the depo shot. He explained to me that my gynecologist should not have put me on that...it could have killed me! So I went back to gynecologist, and told her what my hemo-oncologist said, and she put me back on birth control pills again. 5. When were you surgically diagnosed with endometriosis? Please include any pertinent information about locations of lesions, organ involvement, stage (if given), type of surgical intervention done at first surgery (ablation, fulguration, excision). In June 2011, I had a nodular knot in my c section scar. A general surgeon went in and got the nodular knot out, but he looked at my ovaries, fallopian tubes, and uterus, and said it looked horrible. I had black cysts on both ovaries, scarring in my uterus, and both fallopian tubes were clogged. Then in September 2011, my OBGYN did a laparoscopy, and confirmed the findings. I had endo on my uterus muscle; both ovaries had big black cysts on them; both tubes were clogged. I had an ablation done on my uterus to try and slow my periods down June 2012. Eventually, my doctor did a full hysterectomy. My husband and I knew it was a possibility, so we signed the paper work...my gyn said it would cure me. 6. Were your symptoms relieved, and if so, for how long? Did you use hormonal suppression after surgery? I was put on hormonal suppression a week after surgery which was a nightmare. It did not improve my pain at all. I felt like I had been betrayed. 7. Have you had any subsequent surgeries? Please include pertinent information about location of lesions, adhesions, organ involvement, stage (if given), type of surgical intervention. In July 2013, I had a CT scan done because I was having intense vaginal pain. The CT showed my intestine was on my vaginal wall. When my gynecologist did a laparoscopic surgery on August 26, 2013, it lasted four hours. She told my husband that I had endometriosis on my intestine, bladder, vaginal wall, abdomen, and on my rectum. 8. How many total surgeries have you had, and do you plan on any in the future? I have had 4 surgeries so far. And yes, I am doing one more with Dr. Ken Sinervo at the Center for Endometriosis Care in Atlanta, Georgia. 9. How are you doing today? Please include any information you feel comfortable sharing about your quality of life, fulfillment in your career, relationships and family life, and outlook for the future. My husband tries to understand. He is supportive of me, but we are both upset with the way my gynecologist treated my endometriosis. She did not explain or educate us about this disease. I am in a lot of pain everyday. Everything hurts so bad, it is hard to get up in morning and take care of my 3 children. I have lost friends over this. My children don't understand why I hurt...they just see their mom crying and curled in ball, or with a heating pad on my stomach. My family just tells me go to the doctor, get pain medicine, or suck it up. Having this disease drains you physically, mentally and emotionally. My quality of life sucks. I can't go walking far. I can't exercise because of the pain. I have gone to ER, but the doctors there don't care; if you are not in a life threatening situation, they will not help. There are times when I do not want to fight. I have been fighting my whole life! I was born at 27 weeks, I have an eye disease called Retinopathy of prematurity on top of having endometriosis. Having the issues I have is not easy; between me being in pain all the time, my blood does not clot very well, and the eye disease I have could cause me to go blind at anytime. 10. If you could tell fellow Endo Sisters one thing, what would that be? To my endo sisters: keep fighting! 11. If you could tell medical professionals one thing, what would that be? I would tell them to listen to your patients, and research current information about Endometriosis. 12. What would you like the next generation to know about endometriosis? Use your voices! Do not take no for an answer, and listen to your bodies. 13. Has living with endometriosis brought about any positive things you may not have experienced without living with this disease? The positive thing is being able to speak to Dr. Sinvero, and I found Nancy's Nook Discussion and Education on Facebook. Also having wonderful endo sisters to talk to. 14. Please describe any awareness, advocacy, or support efforts, and how this changed your outlook. Being in Nancy's Nook has helped. They give some wonderful advice and educate you about endometriosis. Plus the Endo Sisters group is a blessing. They are very supportive, caring, and kind. 15. What do you recommend to women who are looking for help? Use your voices. Do not stop until you find the right doctor that will listen to you. Join groups. Talk to others. Bring awareness of this disease to others. 16. Would you like to share anything else with our readers? I want my life back. I am over this pain. I wish more people would take this disease seriously. I am a fighter, an Endo Warrior. I am trying so hard to get this surgery done with the CEC. I have read wonderful things about Dr. Sinvero and the staff. I hope to meet everyone very soon and get my life back! *** Thank you to Brandie for sharing your story and your perspective about this disease. If you would like to share your story with our readers, please send us an email on our contact page and mention the Ask Me About My Endo interview! For more information about support groups and specialist care, check out our resources page |
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