One in Eight Million Girls and Woman are affected by this disease and often go undiagnosed for 6-10 years before it is discovered.
Time to End the Silence
Most women have suffered pain during their menstrual cycle at one time or another. It can be mild to moderate. Some, however, experience such blinding pain that it can render them unable to move, unable to speak, and in tot he degree it can end in an emergency room visit. Most ER doctors may understand, some even will be good about giving pain medication to ease the pain. But what if you’re someone who suffers every month, worse and worse as time goes on?
My daughter, Michaela, has suffered pain like this since age 13. She went to multiple doctors, female and male alike, to find out what was wrong. She was a great student in a Magnet School, but due to her absenteeism, she had to drop out or risk being failed. None of the counselors understood. None of them would listen to me when I told them, “Something is wrong. I don’t know what, but I am trying to find out.”
We went to over 7 doctors before the 8th doctor finally caved when she was 16 years old and said, “Let’s do surgery.” It was the greatest relief, even though many view surgery as “scary”. What is scary when your daughter is in so much pain she is curled in a ball, screaming, asking her Daddy to help her and saying to me, “Mom, help me, what’s going on?” and I have no answers for her.
My daughter suffered 3 solid years of excruciating pain each month. One female doctor, which I have found is much worse (in my experience than male doctors, sat in the examining room with her back to me, speaking to my 15 year old daughter at the time, explaining what a period was. Mind you, she had hers since age 11 and I educated both of my children early on so they wouldn’t fear becoming a woman. She was rude, ignored any question I asked as if I wasn’t sitting there, and finally, I asked her if she was going to examine her. She was going to send my daughter out the door with birth control pills without even an examination!
My daughter gets up on the table and the look on the doctor’s face said it all as she murmured “Oh, you poor thing, no wonder you hurt” as she was bleeding so heavily the doctor gave her a shot of Toradol on the spot. What I would have liked to say to that doctor I didn’t out of wanting help for my child, but she never went back to that doctor again. No way was I going to allow someone in the medical field treat my child as if she were uneducated and rude to me when I am there as her mother to make sure she gets the care she needs. That was MY responsibility.
A couple of months later, my daughter had been to Children’s Healthcare of Atlanta for pain in her back and feeling like fainting after taking Aleve. On the drive there, she was motionless and pure white. Her blood pressure was extremely low and tests were run. They checked her kidneys and this time did an ultrasound of her uterus and ovaries. The young woman intern looked at me and said, “You should consider the pain might not be her kidneys and could be from ovulation. She might have endometriosis.”
That was the first time I had heard it for someone so young. My sister had it and was diagnosed at age 18 and I also had been scheduled for laparoscopic surgery in August of 1995 to see if I had it and why I couldn’t conceive. Instead of having the surgery, my pre-op blood tests showed I was already 3 months pregnant-with Michaela! I didn’t think, however, my own child would be in the position I once was in and at so young of an age. I remember as a young girl, though, having the pain and suffering.
We tried doctor after doctor with no answers. How we came about the 8th doctor was ironic. One day she called me from school only fifteen short minutes after dropping her off.
“Mom, something is wrong. I don’t feel right. Can you come right away?”
My husband and I rushed to get her. She was staggering and couldn’t stand up. We rushed her to her pediatrician and they tested her blood sugar, which was in the low 70’s. They boosted her up with some sugar and her blood pressure was very low. The PA saw I was upset and I blew up about how she had been sick and nothing had been done. I explained what the person at Children’s Healthcare had said, and she referred me to her gynecologist who specialized in women’s diseases.
Our first visit, we went through the whole birth control blah blah blah and said she could not be on them because of the side effects. He said, “Well, try Beyaz, just one more.” I was desperate to help her even with the surrounding controversy of the sister to YAZ. She was on it just a short time and the pain became even more intense. She came home from school about 2 days after that visit and went into the bathroom screaming on the toilet for someone to help her straight off the bus…I called her doctor and he said he would schedule laparoscopic surgery right away.
My heart sunk and I was furious. It turned out, her teacher wouldn’t let her use the bathroom so I called the school and ripped them a new one. I made sure they heard my child screaming on the toilet asking for help. I warned them they were ion hot water and I would be filing a complaint about the teacher. They said it was “routine” and would need a doctor’s note…to go to the bathroom! I knew right then and there school was not going to be an option for her any longer with the way they treated her. This guidance counselor had not taken me seriously when I had told her she was having medical issues and how bad they were related to her period. It was embarrassing for my daughter to discuss it, but I felt that since she was a woman, she would understand. What a joke. She said, “Well, everyone has pain with their periods.” A standard response from age-old rhetoric that needs to be shattered. Some of the older women I have met sometimes are just as bad as ignorant doctors.School, however, was not my priority at the time.
After my daughter’s first surgery,(video link-graphic) we found she indeed had endometriosis. She ended up finishing out that school year for 10th grade and I signed the papers for her to drop out. I was done with the public school system and the way they handled things. I was done fighting for my child to get an education and to be able to get the help she needed. Michaela got her first job and started just 2 mere weeks after her first surgery, then took on a 2nd job to help pay for online school. Since it was a Christian based program, the science was a joke and I knew she would never pass any standardized tests. That is when we discussed getting her GED. I wasn’t happy and I had always dreamed my daughter who was so smart she beat out others to be in a Magnet School was now getting a “Good Enough Diploma” as she now jokingly calls it.
She worked hard and met the qualifications, graduating with high honors for the GED including getting a plaque for the highest score for the GED for the entire year on that campus. She has worked hard since, having fought through a marriage young and domestic abuse (which is a whole other story altogether) which resulted in separation from her husband at 5 months pregnant, and even was blessed with a pregnancy resulting in my grandson even though she was originally told she would probably never have children.
Before her second surgery last September, she went through the Hell of dealing with the doctor who handled the delivery of her son “trying” Depoprovera for her endometriosis. He was not well versed in the disease and said surgery was out of the question. It resulted in her passing a mass the size of the palm of her hand a month after receiving her first shot. When tested, the lab results came back simply “endometrial tissue” and “other”. The usage of Depoprovera can result in the endometrial lining coming out as a mass. Not much is known and not much has been reported of incidences such as Michaela’s. She had to finally say goodbye to that doctor and search for another one. The pain had gotten bad again like before her first surgery. She could barely work and care for her baby boy, Gary.
After a couple of ER visits, the last a rush in late August 2013 to the ER where she couldn’t even drive herself home, resulted in being flagged by the local hospital for narcotic usage because I had mentioned she went to another county ER since that is where her gynecologist was located and we knew at that point it was her endo again. She has been given a cockatil of morphine and lilaudid at the time to deal with the horrible pain. The ER doctor from the local visit was rude and verbally abusive toward her. She was left, literally, lying in pain in the emergency room with just a shot of Toradol, with her blood pressure dropping several times over to 57/43 and her heart rate skipping from 63 down to 47 beats a minute. They did NOTHING but SENT HER HOME!
We went the very same day to my general practitioner, Dr. Abassi in Covington, Georgia. He saved her sanity. He was told the background and what had been going on. He even said to go to the ER and that is when I explained to him we had COME from the ER that morning. He called in his partner and a student that was there. He didn’t dismiss her. He didn’t think she was dramatic. He took a look at her and the sympathy from that wonderful man almost had me in tears. He patted my shoulder and said he understood how upsetting it was or me. I told him I felt helpless and he said to me, “We will figure out what to do..what to do..” half talking to himself. Not IF he could do something, but WHAT he could do to help.
He referred her to a wonderful gynecologist that did her 2nd surgery. He sat there the first visit, took all the information, and gave her the options. He started out talking about birth control and I saw the back of my daughter go rigid, like “Not again” and then said surgery was what he think was necessary.
And the tears poured down from her face in utter relief. I started crying, too. THIS was the kind of care my daughter deserved. Not the rude and abusive treatment she had received from other doctors or acting as if she were an experiment for this drug or that birth control pill. When it gets to that point, surgery is necessary.
Her divorce was finalized this past November and still she struggles with her job. She had to go on medical leave from a warehouse job she loved, and since it was through a temp agency, even though they said they would save her position for her, just 3 short days after surgery, she was told her place had been taken. She was out of a job. She has been having to fight for child support and the county is no help in getting her ex-husband to pay. She has had to fight for everything she has been through and everything she has.
But she refuses to give up. She tells others-speak out. Get a second opinion. Be treated with respect. Tell the world you’ve had enough of being told it is all in your head, it isn’t that bad, or you “can’t handle pain”. Unless you have walked a mile in your shoes or anyone else’s, you know NOTHING of the pain and suffering they have gone through. But you CAN make a difference.
Now it is her choice to fight for others as well. The Million Woman March for Endometriosis is March 13, 2014. After illness and a 2nd surgery this past September, resulting in a double diagnosis of not only endometriosis, but also adenomyosis and after hearing about it, Michaela signed up to be precinct manager for Georgia. She hasn’t been able to do the duties to the best of her ability going through her divorce and battling financial issues and the disease itself, but she wants to make good things happen., Michaela wants to go to Washington to represent the state of Georgia and all the young women out there who have to fight for healthcare, respect for their symptoms and concerns with this disease, school who will not listen, education for the parents and the girls themselves, so their lives can be more meaningful.
“Maybe if I go to Washington D. C. and tell my story,” says Michaela Savoy, “I can save another girl from having to go through what I went through. Maybe she won’t have to drop out of school or miss out on opportunities like I did because she hurts too bad to go. I want to help.”
We have set up a Go Fund Me Account for Michaela to try and raise funds for Michaela to attend to her duties as precinct manager and for us to go as moral support. We didn’t think it would be possible since her last job she was let go from replaced a position they said they would hold for her after taking medical leave for her 2nd surgery. She still works but in a minimum wage job when she knows she is capable of so much more and misses the job she once had. Due to financial reasons and medical issues myself (I currently am saving up to have a hysterectomy that I was supposed to have in January), my husband and I want to support her in her quest for making the world a better place but need your help in getting her to DC. We HAVE to make this happen for our daughter, one way or the other. She has been through too much to stop now…
(l) Michaela’s older sister Jole, a PCOS sufferer with daughter Lillian
(r)Michaela with her son Gary and boyfriend Aaron
If you can donate, wonderful! If not, sharing her link and sharing her story is something that can make all the difference to this girl and potentially many others. You can find out more about the March at the link at the beginning and if you like, support the women in your state or my daughter in making a difference. If you are anywhere in the world, this cause has been something women have suffered from worldwide, and is now a worldwide event!
Stephanie March and Sheryl Crow Support the Million Woman March
I want to thank actress Stephanie March of Law and Order SVU for being spokesperson for this cause, as well as entertainer Sheryl Crow for supporting us. They will both be in attendance for the March. The March also has several organizations that support this endeavor that you can see here.
And last, but definitely not least, Dr. Camren Nezhat for making this happen for all of us.
If you would like to join the event, please go to the website above and contact your state precinct manager!