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! :)
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! :)
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