Possible womxn 8/12 Vanessa – Has Endometriosis
Damn. I am proud to have this incredible womxn be a part of the Impossible Boudoir Project. Vanessa has struggled for years with endometriosis and continues to struggle hard to this today. I was shocked and surprised at all of the things she has been through while trying to figure out what was wrong with her for so many years and the things she continued to go through when she knew what was finally happening. You think to yourself, there is something wrong with me internally; a doctor should be able to fix me, right? Wrong. Vanessa voiced so many times in our interview that she HAS to be her own advocate for her body and her endo. After all the hoops, medication, debilitating weeks and life altering “almost” new’s doctors would tell her, she realized after almost 15 years that the only person she could trust with her medical condition was her.
I’ve said it before and I’ll say it again for the people in the back… listen to your body. Only you can really know and understand what’s going on. Just because someone in a white coat tells you you are this or you need this, get a second opinion and that second opinion is you. Listen to your body.
“It took me 15 years to get diagnosed with endometriosis.” – V
Growing up Vanessa was always “too” much. She was too tall, or too thin, or too big, had too many freckles, was always too x,y & z. At one point in her developing years, she was told by medical practitioners that she was too thin which confused her so much as a child because she felt totally fine in her body. One of the last times she ever has felt fine in her body.
Ever since Vanessa started her period in 5th grade, that’s right, 5th grade, she has always remembered them to be incredibly painful. Her mother, aunts and grandmothers would just tell her it was normal. Periods suck. Which they do. You’re just having a bad period. That’s all it is. Some girls just have harder periods than others.
“I used to be really active growing up but it all caught up to me when I was in high school. I was super fatigued all the time and would stop going to practices. My parents thought I was just being lazy and wanted to stay home and watch TV all day or something. Then my doctors would just tell me the same thing everyone always had been telling me, that I was just having bad periods.” – V
For years and years of her formative life, Vanessa thought she just had really bad periods and that there was nothing she could do about them. “I used to think I had done something wrong to my body to have experienced such painful periods.” – V
It wasn’t until Vanessa went to hair school in 2014 that she really realized something more was going on with her. After years of experiencing….
-trying every birth control out there to find none of them helped
-spending countless money on period pads and super tampons to bleed through all of them, some within 30minutes to an hour
-developing cysts on her ovaries from all the mensuration
…she had had ENOUGH.
When Vanessa was working one day at her new hair school up in Seattle, she had gotten her period and her body went into this short of shock.
“I started slurring my words when I thought I was talking completely normal like we are now. My stomach started to get these sharp pains, then a migraine set in. I couldn’t feel temperatures of water and nobody knew what was going on with me.” – V
She went to the ER and you’re not even going to begin to fathom what happened next. At first they thought she was experiencing a heart attack which they then told her that she might have a pulmonary embolism due to said heart attack, and to ‘get her family here because she might bleed out and die.’ Then they came back 20 minutes later after Vanessa had already alerted her friends and family or her possible imminent death, that she just had a lung nodule. 13 hours later in the ER, they released her basically with a see yah, don’t know what’s wrong with you. We think it’s just your period. The next morning the Seattle Cancer Care Alliance contacted her telling her that her doctor thinks she might have lung cancer and her email inbox was now being flooded with ‘how to live with caner’ type emails. She then confirmed with her doctor again that it was just a lung nodule and not lung cancer.
They told her it was a heart attack. Then they said it was a migraine. Then it was her period. Once again Vanessa was back to the same spot she had been in for the past 15 years… It’s “just” a period. She said to herself, “OKAY. I need to figure this out. I’ve been sick my entire life. I need to figure out what the fuck is going on.” – V
She said to herself she was done going the ER countless times just to be told you have periods, or to actually be told that you might die and/or have cancer which none of it was true. It was now time for her to start figuring stuff out on her own. She got WA Apple Healthcare which she is so thankful for and finally got a primary care physician to try to help her out. She was excited to see her physician and she recommended Vanessa take a pelvic cat scan, something the ER never had her do. Upon looking over the cat scan, keep in mind, this is weeks after her emotional rollercoaster of false news, that she now, get this, had ovarian cancer. Vanessa jumped on her next move which was to now find a gynecologist which she had to wait over a month to see. Finally Vanessa was, yet again, confirmed to not have cancer of any type, but to have endometriosis.
She told Vanessa, “plenty of womxn have it, even I do!” Vanessa thought she had finally met her goddess, her savior, someone who had finally diagnosed her after 15 years of confusion and someone who she could finally trust. March 2015 Vanessa was scheduled for laparoscopic surgery to help clear out her endo and figure out what the mass in her pelvic area was. The mass that her doctor thought was ovarian cancer turned out to be an endometrioma which took over her entire ovary that she unfortunately ended up losing during surgery. Along with that, there was endometrial tissue all throughout her pelvis, on top of her uterus and on her ovaries. Thinking she might finally have some relief of pain after having the surgery, she unfortunately did not.
“After all of that, I was still in a lot of pain from my endometriosis, everyday.” – V
Her doctor then recommended her to take an injection called Lupron. “Lupron is basically medicine for all womxn who have endometriosis, this should help.” -her doctor. Lupron, described by Vanessa, is an injection that sends you into false menopause to chemically stop your body from having periods. She wanted to have Vanessa on Lupron for about six months. Vanessa did three months. Why three? You guessed it, Vanessa kept having periods, bad ones. Not only was she still having insanely painful and heavy periods, she also gained a lot of weight over the course of a couple months, almost 100 pounds due to being on Lupron.
On top of dealing with her regular, painful periods, she was now also dealing with a crohn’s flare due to the medication she was on that was supposed to be helping her with her endo pain. Instead it was just creating a whole new world of pain for Vanessa in her abdomen. Her doctor told her she was just experiencing, you guess it, her period and having endometriosis. She was living in restrooms basically, always just waiting for the pain to go away so she could try and be a normal human who wasn’t dealing with what felt like a monster tying to claw out of her insides. She dealt with continued intense periods and stomach pains from the medication for those three months.
My doctor thought I needed to go to a pain management clinic to try and help with this because she thought it was all in my head. She would say “Vanessa, you just have endometriosis, you have a chronic illness, the pain will be there, this is just your life.” ” -V To have a doctor tell you this is just what it will be like, get used to this, it’s a hard pill to swallow. When you’re going through so much pain and someone who is supposed to have the answers and is supposed to help you tells you all things are hopeless, just deal with it. I can’t imagine how earth shattering that would be. To know that something is very wrong in your body but to have no one really believe you, especially a doctor, I really can’t imagine.
Being on Lupron not only made her gain weight rapidly, but she was losing it almost as fast as she gained it. From having her chron’s flair, she wasn’t able to keep anything down. She put nearly 80 lbs on in two months, then would quickly lose 40 lbs in a matter of weeks. She thought because she had been losing so much weight that something again was wrong with her. Something had to be. Her doctor reminded her there wasn’t anything wrong and that it was just her endometriosis. She then told her to piggy back on that weight loss though. She also told her to be excited because her body was losing the weight that it wanted to. “Why don’t you just let it lose weight.” ( ROLLS EYES HELLA) Vanessa’s pain kept becoming worse and worse and she decided to leave her gynecologist and move on to an endometriosis specialist to see if someone, god forbid, SOMEONE out there could help her. In October of 2018 Vanessa got her second laparoscopic surgery which was highly recommend by her new endo specialist. Her specialist found a lot more endometrial tissue in Vanessa and also found that she has adenomyosis, which means her endometriosis is now also located within her uterus. So she now has endometriosis inside her endometriosis basically.
Seeing as her second surgery wasn’t too long ago, Vanessa is still dealing with her this and her pain every day. She now has an IUD which she says help a little with the pain, but her periods are still rough and incredibly abnormal. She’ll either be constantly spotting, or will bleed for two weeks, or like she said in our interview, “Right now I’m on my second period of the month.” – V (We had our session on June 18th, 12 more days left in the month.)
December of 2018 Vanessa was finally diagnosed with crohn’s as well which explained all the uneasy bathroom visits and insane weight loss.
On an average day Vanessa is never quite sure what it will look like. She describes her day to day like a rollercoaster. “I can be on top of the world and then I’ll take a shower and it’ll hit me like a sack of bricks and I cannot move.” – V
On a bad day Vanessa has to wake up two hours before she should normally wake up to get ready for the day and deal with the insane amount of nausea she has. She will either wake up nauseous from her crohn’s or in pain from her endo. Her abdomen and pelvis are basically on fire all the time and when she is on her period, as you can image, she feels much worse.
“Imagine if you had a gallon of water in your uterus and you were just walking around with it all day.” – V