Share Your Story: Aly

Aly standing in front of a block wall

Aly was diagnosed when she was 15 years old.  Now 21, she shares her Journey with us, and she has been through so much.  She does, however, continue to fight and push ahead and raise awareness.  She’s an incredible woman.  And one hell of a Warrior.

Aly’s Journey: I have been a runner since I was four years old. It has always been my passion, but it was also where my pain began. In the spring of my junior year, I was running on the track as usual when I suddenly I fell to my hands and knees in severe pain. I vomited when I tried to get up. It was the beginning of a life-changing injury in which I would endure unbearable stomach pain that I still experience even though it has been 7 years since I was diagnosed.  At first, I tried to brush it off. Each race, I believed that I only needed to work through the pain and simply get to the finish line. I would continue running and then collapse at the finish. Oddly, it never occurred to me to stop running. Injuries are part of an athlete’s life.

At my first doctor’s visit, I was told that that the pain could stem from ovarian cysts that might be rupturing and causing extreme discomfort. I underwent a round of ultrasounds and MRIs, but each time the tests would come back perfect. They couldn’t find anything wrong with me. The doctors treated me with painkillers and, when the season was over, I did well for about a month.  But when I attended a Leadership Conference that summer, I had one of my worst attacks. I collapsed, cried and was once again in excruciating pain.

When I returned home, my gynecologist said I could have endometriosis, a condition where tissue that grows inside your uterus grows outside it. It can make it hard for women to have children. I was sixteen when they told me I probably would not be able to have children. At that age, you are just trying to live and not thinking about the future. I had to grow up fast. The doctor did not want to perform exploratory surgery because I was so young, so they began to treat me for it with birth control medication. Even so, my condition failed to improve, and my doctors began to think there might be a problem with my intestines.

After they ruled out Irritable Bowel Syndrome they began to wonder if my intestines had somehow become twisted. My third doctor, a gastroenterologist, ran more tests, but the results were the same: I was perfect.

At this point it would seem like it was a blessing that nothing was wrong, but it wasn’t.

I had been in inexplicable pain for months and no one was helping me. The gastroenterologist suggested a colonoscopy and said that even if my colon was fine he would still give me a trigger injection into the area where I usually felt the most intense pain. If I was pain free for 6 to 8 hours after, he said, then it was most likely a nerve entrapment. Of course, my colonoscopy was perfect. He gave me the injection and for eight hours I felt relief, but soon the pain returned, heightened to a new extreme.

After three weeks, my fourth doctor, a pain management/anesthesiologist, used an ultrasound and finally discovered the nerve entrapment that was causing the problem. He injected the exact spot, and, after seven long months, I finally felt relief. I had forgotten what a pain-free stomach felt like. However, this only helped for a little while.

About a month later, I was collapsing and in extreme pain again. I went back to my gynecologist and we decided to do a laparoscopy my junior year of high school. When they opened me up, I was covered with endometriosis. It had started spreading to different organs. The doctor put in an IUD, another form of birth control inside my uterus which was normal protocol for endometriosis. Having the endometriosis areas removed improved my pain but a year later I still had pain. I am on a high dosage of birth control and do not have periods, but it only helps the pain a little bit.

Though I still have pain, I continued to run. My dream has always been to follow in my father’s footsteps and run in college. I continued to push through the pain even though it got worse.

I ended up going back to the gastroenterologist because I was having a hard time eating, having regular bowel movements and the pain was severe again. I was diagnosed with Irritable Bowel Syndrome (IBS) with Chronic constipation. I am on medication for this, but it does not improve the situation. I didn’t let this stop me from fulfilling my dream. I worked through the pain and became a collegiate runner. I was so happy to have finally made it, but it was going to be a long difficult road ahead of me.

During my freshman year of college, I was doing better from the pain until mid-season when I started having extreme pain and noticed I was gaining a lot of weight. I understand the freshman fifteen, but this was different. I was running fifty miles a week but still gaining weight. I went to back to the gynecologist to find out that the IUD was causing me to gain weight and have ovarian cysts. I decided it was time to have the IUD removed. I had to be put under to have it removed because it was too painful to be awake. I also have never been able to use tampons, so the insertion process has always been unbearable. I thought I was weird because I couldn’t use tampons the way my friends could. I got the IUD removed right before my sophomore year of college and was back the on pill.

I was still having pain though. I kind of got used to always having pain that I hid it away, so no one could ever tell what I was going through daily. Every year before the season starts, we must get physicals done and my sports trainer pointed me in the direction of a pelvic floor dysfunction therapist. I had never heard of pelvic floor therapy, but I was willing to try anything. It was something new and it turned out that I was diagnosed with pelvic floor dysfunction which is the inability to control your pelvic muscles and the therapy seemed to help all my conditions.

Now I am at six different chronic illnesses and I couldn’t possibly think I could have anything else wrong until I noticed that I had a hard time releasing urine. In my junior year of college, I noticed I never had the urge to urinate and it was causing extreme pain and puffiness in my body. I was retaining urine but drinking around fifteen bottles of water a day. I went to see a urologist, who ran scans and urodynamic tests. The results showed that I had pelvic floor dysfunction which I already was treating. So, the urologist decided to put me under and do a cystoscopy with hydrodistention. She was looking for Interstitial Cystitis (IC). IC is s a chronic condition causing bladder pressure, bladder pain and sometimes pelvic pain around bladder lining. The procedure showed that I have IC and my bladder lining had tears in it.

After the procedure, I was doing the best that I have in six years. It felt good to only have mild pain. I had hope that things were getting better. I was prescribed Aloe Vera pills to help thicken my bladder lining.

But the pain returned, and no one knows how to help because there is not enough information out there.

I suffer from endometriosis, but I also have a nerve entrapment, ovarian cysts, pelvic floor dysfunction, chronic IBS with constipation, colon spasms, gastritis and interstitial cystitis.

I suffer from severe pain daily that hinders my way of living.

All my issues stem from endometriosis. It has changed how I live and makes it very hard to be an average twenty-one-year-old.

I, like so many other women, suffer from an illness that gets overlooked every day.

Even when they find out what is wrong, there are barely any ways to help.

Endometriosis is incurable, but I hope one day my story and all the other stories out there will bring awareness and the importance of trying to find a cure for endometriosis. As a designer, my goal is to spread awareness so that women voices can be heard so that we can find a real solution for our real pain. My journey is not over but I keep fighting so that one day my pain will be gone.

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If you wish to contact Aly, please feel free to email her.

I want to send a special Thank You out to Aly for being brave enough to share her personal story, struggle, and victories with us today.  I am so grateful that you continue to fight and look forward to helping you with your project!    Thank you!!!

a paper that reads Tell Your Story

And if YOU would like to share your story, I’d love to share it.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Reader’s Choice : Pelvic Floor Dysfunction

pelvicfloorbirdseye

A bird’s eye view of the pelvic floor muscles

Have you heard of pelvic floor dysfunction?  I hadn’t; not before meeting women who suffer from it.  And I’d never heard of a pelvic floor before that, either.  We’re going to focus today on pelvic floor dysfunction in women (although men can get it).  But what is it?

The pelvic floor is made up of a lot of little muscles, nerves, and tissues all working together for your body to function.  Imagine it as a tightly-woven basket at the underside of your pelvis, sweeping from front to back, and side to side.  Not only does it support the organs of the pelvis, but it also wraps around the urethra, rectum, and vagina.  When these muscles, nerves, and tissues stop working properly (they are too tense or too lax), it’s called pelvic floor dysfunction.  It can cause pain and difficulty with urination, defecation, intercourse, and lower back pain.

Doctors aren’t sure what causes pelvic floor dysfunction, but know that it does exist…and can occur for a lot of different reasons.   Data shows that almost 50% of people that suffer with constipation actually suffer from pelvic floor dysfunction.

The symptoms of pelvic floor dysfunction vary:

  • Feeling like you have to poo a lot over a short period of time
  • You feel unsatisfied about a poo and feel like you’ need to go more
  • Straining to poo
  • Constipation
  • A frequent need to pee.  Sometimes once you start peeing, you stop and start again mid-stream
  • It hurts to pee
  • You feel a need to bear down to pee
  • Lower back pain
  • Ongoing pain in your pelvis, genitals, or rectum
  • Painful sex
  • Muscle spasms along the pelvic floor

Many women with Endometriosis and Interstitial Cystitis suffer from pelvic floor dysfunction.  Some of these women treat with antidepressants, which may worsen the symptoms of pelvic floor dysfunction.

If you suspect you have pelvic floor dysfunction, your doctor will get a complete medical history from you, including your symptoms.  He/she may conduct an internal physical examination to determine how well you can control your pelvic muscles.  Another test may involve the use of an adhesive pad with electrodes between your anus and vaginal opening which measures muscle contractions (this does not sound pleasant).  A perineometer may be used, which is a small tampon-like sensor that is inserted into the vaginal canal that takes readings of muscle strength and weakness.  An x-ray test may also be conducted:  you’re given an enema and your muscle contractions are visible to the physician as you push out your poo (I’d die of embarrassment).  Another test may check the weakness or strength of your ability to control urinating.

You’ve been told you have pelvic floor dysfunction.  Now what?  Several treatment options are available to you:

  • Physical therapy : internal or external manipulation of the muscles, trigger point release, massage, nerve release, and skin rolling.
  • Biofeedback and electric stimulation : working with a physical therapist using electrodes to measure and improve muscle coordination and relaxation.
  • Ultrasound therapy : using sound waves to help reduce spasms and reduce inflammation.
  • Cold laser treatments : may be used to reduce inflammation and pain.
  • Medication : low-dose muscle relaxants may help ease pelvic floor dysfunction and restore muscle control
  • Relaxation techniques : warm baths, yoga, breathing exercises, and stretching exercises may also help realign and restore whacky muscles
  • A change in diet : eat foods that are well-known to aid in the pooping-arena, such as high-fiber fruits and vegetables.
  • Surgery : in extreme cases, such as rectal prolapse, surgery may be required to repair dysfunctional pelvic floor muscles.

Several of the gals in our local support group had the pleasure of going to a pelvic pain & pelvic floor therapy workshop hosted by Comprehensive Physical Therapy in San Diego.  It was wonderfully enlightening, and a few of the therapists also suffer from Endometriosis.

Prevention Magazine ran a story in 2014 (careful, lots of pop-ups) about pelvic floor dysfunction and followed the story of “Lisa.”  The article also points out several tips and tricks you could do to help aid in the healing of PFD.

If you suffer from a pelvic floor disorder and want to meet a community of people who also know what you’re going through, you may want to check out Voices for PFD.

Thank you, Toni, for suggesting I read up and write about PFD.  I learned a lot today.

Resources:

Cleveland Clinic

Interstitial Cystitis

Mayo Clinic

Mayo Clinic – (Article; Feb. 2012) Recognition and Management of Nonrelaxing Pelvic Floor Dysfunction

Monterey Bay Urology Associates

Prevention MagazinePrevention Magazine – (Article; April 2014) Why It Hurts Down There. What You Need to Know About Pelvic Floor Dysfunction

The University of Chicago Medicine

Vital Health Institute

Voices for PFD

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 🙂 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa