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
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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