Two Fierce Women with Endo who have dedicated their lives to help others in pain.

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Being in the Pelvic Pain circle, sometimes I run across women who truly deserve a shout out. Two women who on the daily, are trying to help other women who suffer while they themselves are fighting the pelvic pain battle.

I met Heather and Sylvia in their Facebook Group they run called Pelvic Pain Sisters and Supporters United. They both have Endometriosis, which is something I have had many surgeries for as well.

The support and love that these women show to the members of this amazing group is heartwarming.

Meet Sylvia Brown

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 sylvia

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1. Tell me about your history with Endo. When it started and your journey with doctors/good and bad.

I can remember being 12 years old, at home in my parents’ bed all day sleeping on a Saturday, sick with the flu. Later that evening around 8pm or so, I woke up to go use the bathroom. When I stood up, I felt very dizzy, nauseous, weak and felt an unusual pain that I had never felt before in my abdomen. When I got to the bathroom and sat down on the toilet, I immediately knew what was going on… I had gotten my very first period. My mother was out of town in Pensacola for a church conference, so my Daddy was home taking care of me. I called him into the bathroom to tell him, and he immediately freaked out and called my aunt, who went to the store and picked up some ibuprofen, midol, and pads before coming to check on me. I got cleaned up, took the medications, and went back to sleep. Little did I know, that was the beginning of what is now my current hell. Unfortunately, I tossed and turned in pain all that night, and when my mom got home a few hours later, she immediately knew that I wasn’t exaggerating the pain, because growing up she had dealt with excruciating, crippling pain during her periods (although she was never diagnosed). She and my aunt both had pain so bad that every month when they got their period, my grandmother would have to take them to go to the doctor only doctor in town that would treat people of color and get a 100mg shot of Demerol that would knock them out for a whole day and miss two days of school. That Monday, she called and set me up an appointment with her obgyn to be seen, because she knew that I wasn’t exaggerating the pain and that something was wrong.
I continued to see the obgyn regularly for the next 8 years. I was told things like “Some women just have bad periods”, “Sometimes it just takes a while for a young girl to regulate”, “Every woman has cramps”, “Painful periods are normal”, “It can’t be that bad”, “Are you sure that some of this pain isn’t just a part of your imagination?”, and a host of other ridiculous, demeaning, untrue statements. At age 13, I started on a birth control pill that was supposed to regulate my cycles and “cure” the pain… obviously , this didn’t work. Over the course of the next eight years, I was basically put on different types of birth controls and given things like Naproxen, Ibuprofen 800, Tramadol, and Darvocet for the pain, which either didn’t work or I had a reaction to. Throughout my middle school and high school years, I was back and forth between the obgyn and the gastroenterologist due to my lower abdominal pain, nausea, and vomiting, missing several days of school, and hospitalized more times than I can count. At age 14, I was diagnosed with Celiac Disease and told that this was the cause of my problems, although my GI doctor felt there was more to it.
Fast forward to age 20, going into my third year of college. I decided to switch obgyns due to insurance changes. I decided to go see the doctor that had delivered my godson, because she seemed very nice and helpful. At my first appointment, she asked me about my history and symptoms. After telling her everything, the first thing out of her mouth was “I can’t say for sure or not, because I would have to do surgery to be certain, but from what you’ve told me, I’m 98% sure that you have endometriosis. I had never heard of that word in my life and didn’t know what to think or how to feel about it. But after discussing things with her and deciding to schedule surgery, I felt somewhat relieved and validated that all of my symptoms finally had a name and that I was finally going to get the help I needed. Little did I know, that day would forever change my entire life. A few weeks later, I had my first surgery and sure enough, she saw endometriosis and confirmed it through pathology. My mom and I were happy, because we were told that this would take care of my problems and that I would finally be able to get some relief. We were wrong.
Since then, I’ve seen several specialists, including skilled excision surgeons in Atlanta and Chattanooga. I’ve had 9 surgeries within the last 5 years for Endometriosis alone, not including the procedures/surgeries done during some of the surgeries. Seven of these have been ablation/cauterization laps with regular obgyns and two were excision with well known endo specialists. Unfortunately, since my first failed excision in 2015, I’ve also been diagnosed with adenomyosis, PCOS, interstitial cystitis, vagismus, vulvodynia, and severe pelvic floor dysfunction, all of which contribute to my continuous every day chronic pain and suffering.

2. What treatments have you found to be most helpful?

Honestly, Endometriosis is still a very complex, misunderstood disease. Most people, including medical professionals, see it as being just a “painful period”. Unfortunately, it is a debilitating, chronic illness with many signs and symptoms, that has absolutely NO cure. In my opinion, the most helpful/effective form of treatment is excision of endometriosis by a well trained, skilled excision specialist; not a regular obgyn and continued management of symptoms such as pain management (which is very hard to find because most pain specialist are biased towards women’s/pelvic pain), pelvic floor physical therapy, and other therapies and procedures.
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3. If you could say one thing to doctors about Endo, what would it be?

Endometriosis is a very debilitating, devastating, painful, often lifelong disease that has the potential to affect every aspect of a woman’s every day life. Although one in ten women suffer from endo, it is still very misunderstood and patients with this disease are treated very poorly by most medical professionals. Out of approximately 58,000 doctors worldwide that specialize in obstetrics and gynecology, less than 150 of them are skilled in excising endometriosis.
While our periods are beyond what most people could even begin to imagine, endometriosis is MORE than just a painful period or bad cramps. Not only do we deal with severely painful periods, but many of us deal with intense pelvic pain on a daily basis, irregular periods and ovulation, painful urination, painful defecation, grinding fatigue, bloating, painful sexual intercourse, heavy bleeding, anemia, infertility, and more.
Healthcare should ALWAYS be individualized, especially when dealing with chronically ill patients. Nobody should be lumped into a category or taken any less seriously than the next person. When we seek help, whether or not it be through an OBGYN, pain management specialist, primary care doctor, urogynecologist, or an emergency room physician, it is because we are at our wits end with dealing with excruciating pain. Most of the time, we opt to just suffer in silence and deal with the pain instead of seeking medical attention, in fear that we will be treated poorly, viewed as drug seekers, told that it is “all in your head”, or humiliated. With that being said, when a woman with endometriosis says that she is in pain or that “the Endo is back”, BELIEVE HER.
Furthermore, while there are some treatments out there that do help to minimize our pain and symptoms, there is absolutely NO cure for this disease. What may work for one woman doesn’t necessarily work for another. The use of Lupron and a full hysterectomy as a cure for Endometriosis should NEVER leave the lips of any medical profession, period, because that is false information. Currently, there is no definitive cause nor is there a cure. It can not be seen on lab work or on imagining tests. The only way to definitively diagnose Endometriosis is through a diagnostic laparoscopic surgery. Women with this disease are far from weak; in face, we are warriors!
The best things that any doctor or medical professional can do to help women with this disease are to listen to and believe the patient, raise awareness, conduct research, advocate for a cure, and never give up on that patient.

4. What advice would you give others who suffer from Endo?

My biggest advice to fellow endo sisters would be to be your own advocate and never give up. This disease is relentless, misunderstood, and can completely incapacitate your entire life if you let it. You have to constantly conduct extensive research and educate yourself on the truths and myths surrounding this disease. Also, do NOT suffer in silence. There is a lot of stigma attached to periods, vaginas, and women’s health in general. THIS ENDS NOW! It’s time to stand up and speak out not only for ourselves but also our fellow sisters and future generations to come. Don’t be afraid to correct and educate anybody, including doctors about this disease. I’m thankful that while my current obgyn, Dr. Michael Christie, isn’t an Endometriosis specialist, he is very knowledgeable about the disease and takes the time to not only listen to his patients but also learn from them and include them in planning out their treatments. That is one of the most important things you can do for yourself. If a doctor doesn’t believe you, tries to minimize your pain, or tell you that your symptoms aren’t possible or related to Endometriosis, FIRE THEM and find somebody who will take you seriously.
Last but not least, join support groups and reach out to fellow endo sisters, including me. One of the beauties of social media is the ability to network and meet new people who just get it. If it wasn’t for Facebook, I wouldn’t know half of what I know now nor would I be an advocate for women everywhere. Sometimes just having other people who know exactly what you’re going through helps more than you know. If it wasn’t for this crazy disease and Facebook, I would’ve never met my fellow PPSASU cofounder/administrator, my endo sister, my best friend Heather Young. I can honestly say that meeting people like Heather, Tara, my other PPSASU admin, and all of my fellow Endometriosis/pelvic pain sisters has been the biggest blessing to ever come from such a devastating tragedy in my life.
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Meet Heather Young

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1. Tell me about your history with Endo. When it started and your journey with doctors/good and bad. 

I would say that my journey started with endo when I first got my period. It was never normal, even though at the time I thought it was. I was always in excruciating pain, I had to miss school due to the cramps & because of how heavy the bleeding was. It continued this way all through my teen years and into adulthood.  

It wasn’t till I was about 18 that I really started looking for answers. I’ve seen more doctors than I can count, and that’s not a lie, I’ve literally lost count of how many I have seen. It wasn’t that all my doctors were bad, I just felt like nothing was being done so I would move to the next one. I’ve had a few laps done to clean up the endo, as well as several D&C’s because of the bleeding/clotting. 

In June 2016, I had a hysterectomy. My decision to have one wasn’t because I thought it would get rid of the endo all together – As we all know, there is no cure. I had one because of the bleeding, it was just too intense and it was ruining my life – So much so that in 2015, I found myself in the ICU getting 5 blood transfusions because my hemoglobin was so dangerously low. It wasn’t until then that doctors really started taking me seriously. I finally found doctors who listened to me and what I wanted – Which is where the hysterectomy came into play. I can’t say things have been smooth sailing since then, because I ended up having both ovaries removed in 2017, but things have been “better”. 

2. What treatments have you found to be most helpful? 

I’m not sure that any treatment I did was helpful, as sad as that is to say.  

3. If you could say one thing to doctors about Endo, what would it be? 

Please educate yourselves more.  

It’s not in our head. We are the ones dealing with this every single day, not you – Only we know how bad it is.  

4. What advice would you give others who suffer from Endo? 

Do NOT give up. Keep fighting. You are NEVER alone. 

Advocate for yourself, do not take no for answer. I can’t even remember how many doctors told me “no” regarding my hysterectomy but I knew deep down that it was the right decision for me. So, I just kept pressing forward till I found a doctor who would listen and agreed.  

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Thank you Sylvia and Heather for all the work you do! You both are awesome and you make the world a better place.

If you would like to join their Facebook page:

Pelvic Pain Sisters and Supporters United

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VuVagirl is a blog started by Tara Langdale-Schmidt, the President of VuVa Neodymium Vagina Dilators. She has Vulvodynia and Endo and created a product that helped her so much with the painful sex she was experiencing, she started a company and now has helped over 7,000 women. To learn more visit www.vuvatech.com 

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