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A Journey with Endometriosis… From someone WITH Endo

For Endometriosis Awareness Month, we wanted to give our readers a true story to hear from. The individual that wrote this story has not been seen at the clinic, and is in no way affiliated with Warman Physiotherapy & Wellness. She, like many others, wants to raise awareness, give some of her symptoms, and hopefully, help people understand that pain is NOT normal. Onto her story….

My journey with endometriosis began many, many years ago. I just didn’t know it. As a teenager I was riddled with crippling periods involving an extremely heavy flow, and excruciatingly painful cramps that I remember eating handfuls of Midol to help get through the day. I was told “welcome to being a woman, this is normal”. Hindsight is 20:20. It was the furthest thing from normal. Thankfully, I was put on birth control, which seemed to make my periods manageable. My actual diagnosis of endometriosis was not until Oct of 2017. 6 Months prior to this I started developing excruciating stabbing pains in my right lower abdomen. A walk in doctor triaged me to the emergency room thinking my appendix had ruptured. Blood work showed no signs of infection, IV pain meds were given and an x-ray image did not show anything concerning. I was sent home with pain meds and told that I needed to poop. Exactly one month later (a month between my period) I ended up in excruciating pains where once again I ended up in the emergency room. This ER doctor again thought for sure it was my appendix but this time ordered an ultrasound. The ultrasound showed a 4cm hemorrhagic cyst on my right ovary. I was sent home with pain meds, and another ultrasound requisition. I was told to go see my family doctor in 6 weeks. I was told that a hemorrhagic cyst is nothing to worry about that it can happen with ovulation. My anatomy background and my knowledge of how a body works from also being a vet tech gave me a feeling that something more was wrong. The pain experienced during this time nearly made me pass out. Breathing hurt so I would hold my breath. I knew something wasn’t right. A 2nd ultrasound 30 hrs later showed that my cyst had grown by a couple of centimeters but that the radiologist wasn’t concerned as it’s just a hemorrhagic cyst and they can happen during ovulation. I wasn’t ovulating, I was at the end of my period. Something wasn’t right.

 

I have a really amazing gynecologist. Let me say that again. I have an amazing gynecologist. When I went into pre-eclampsia with my daughter, this gynecologist delivered my daughter and I met the most compassionate doctor who actually listened. I knew I had to get in to see her and that as long as I could get in to see her everything would be ok. But of course because I hadn’t seen her in over a year I would need a new referral. Off to another walk in dr. Unfortunately, my gynecologist didn’t have an available appointment for months. My stomach ached, and my guts ached, I would bloat up as if I was 8 months pregnant. There was a time at work where I came to work wearing jeans and by the end of the day I left in scrubs because my button wouldn’t do up. I begged the receptionist to send my gynecologist a message, begging her to understand that every month I will end up in the ER from passing out pain due to this “no big deal cyst on my ovary.” My compassionate gynecologist heard my message and within days, I was booked an appointment with her. She ordered more tests, another series of ultrasounds. Cysts usually burst and go away or at least shrink; mine wasn’t. I was still having daily pelvic pain, daily gut aches. I was put on a birth control to hopefully stop my cycle and stop the stabbing/ passing out pain that came at the end of my period. My gynecologist mentioned that she thought I had a disease called endometriosis. I had honestly never heard of it before. I went home that night and did what most people do– I took to google. Symptoms of this disease was pelvic pain, which I did have prior to these episodes but chalked it up to the many bladder infections that I’ve suffered from. Extremely painful periods was another symptom, which again I had when I was not on birth control. Surely, this disease couldn’t have started at the age of 16. I kept reading, “many women with endometriosis suffer from infertility.” 2 years prior, I had a beautiful baby girl so I couldn’t much relate to that. Back pain can also be a sign of endometriosis. Sure, my back hurt, but I had also been diagnosed with scoliosis of my spine years earlier so my back pain was from that. “The feeling of your insides being pulled down”. My gynecologist asked me during one of my appointments how I was feeling. I told her “it’s like I’ve eaten Chinese food for all 3 meals a day. Like my guts are just so heavy they are all hanging below my belly button.”

I wasn’t convinced. I kept thinking that this disease would have shown up on my previous CT scan, my previous abdominal ultrasounds I’ve had for a tumor I have in my liver. Surely, it would have shown up when I had a previous laparoscopic surgery to remove my gall bladder.

I went in for surgery in October to have this cyst removed. Upon waking up from surgery, I was told I had endometriosis bad. Really, really, bad. I was told that it was so bad another surgeon had to be called in to help. I heard the words “you are the worst case of endometriosis I have ever seen”. My surgeon(s) spent hours cutting out the endometriosis that they could. They removed the cyst on my ovary that was larger than my uterus. They spent hours and hours cutting off endometriosis off major blood vessels, my uterus, this cyst. I was told when they opened me up they found a pool of blood in my abdomen. That is the thing with endometriosis, when you have your period and shed your endometrial tissue from the inside of your uterus, your endometriosis that has grown outside of your uterus also bleeds.

The bad news didn’t end there. If someone is going to have endometriosis it usually stays in your pelvic area. Attaching to and growing on your uterus, ovaries, bladder, colon, pelvic floor. In rare cases, endometriosis grows outside of the pelvis. I happen to be one of the rare ones. Many, many endometriosis lesions were found along my ribs and my diaphragm. My gynecologist had no idea that I had this disease this bad, and neither did I. After all the first ER doctor told me that pooping would solve all of my pain.

I read online that someone compared endometriosis to cancer. That it can spread like cancer does, the only difference is that there is no cure for endometriosis. There were days I was in denial that the diagnosis seemed like a bad dream. The one thing that brought that dream back to reality is that I still suffered pain. You see this disease has two options, cut it out and try to suppress it with medication. I am doing both. And yet it seems with myself and many others even with excision surgery and suppressive medication, there is still pain.

I look back at my journey of my diagnosis and I thank God each day that I did not accept “it’s nothing to worry about” for an answer. Thank God I insisted on seeing my gynecologist sooner vs months later. I am thankful every day for the medical background I have in my personal career that gave me the knowledge that “something isn’t right.”

 

 

My journey with endo isn’t over, I don’t think it will ever be over. I will be on hormone suppressing pills for the rest of my life. I will have more surgeries in the future, some life threatening ones where they shut down your lungs one side at a time. I’ve been sent for MRI and CT scans to see if they can find endo in my lungs. Yes, this endo can invade your lungs. I’ve often told people that endo is a silent disease. From the many support groups that I have joined; I’ve learnt that it’s not uncommon to go years without a proper diagnosis. Endo isn’t always detectable on MRI, CT, Ultrasounds, or X-rays. A laparoscopic surgery performed by an endo specialist is the proper way to diagnose endometriosis. I’ve even heard of some peoples endo only being found under a histological biopsy.

 

I truly believe there needs to be more endometriosis awareness seeing as how 1 in 10 women suffer from this disease. Heck, I was that 10% and I didn’t even know it. I am very open with others about my endometriosis hoping that maybe I can raise awareness and make someone realize that pain doesn’t have to be “being a woman.”

 

Wonder how Physiotherapy can help you with endometriosis? We will be completing our follow-up on what physiotherapy is capable of assisting with for those that have endometriosis before the end of the month. If you want to start now, schedule in with Kendra HERE.

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POP: Getting Those Pesky Organs to Stay Put!

This past weekend I received several messages related to pelvic floor dysfunctions that are not being taken at face value. “Well you’ve had kids”, “it’s all in your head”, “this is a psychosocial problem not  a physical problem”. I have said it before and I will say it again, women need to be listened to, trusted, and most importantly, respected when they bring problems to healthcare providers, family, and friends. Although it may seem helpful to say that “this is something that happens when you have had kids”, it can be less than helpful AND is often not the case.

Pelvic Organ Prolapse (POP), is becoming a more well known topic of discussion in various mom groups, and in particular postpartum fitness groups. A large part of the impression I get as I am tagged, mentioned, and participating in these various forums is there seems to be significant panic associated with POP. People become paralyzed, hyper vigilant, and fearful of movement (also known as Kinesiophobia). So let’s break it down to dispel some of the hysteria that seeps into many pelvic health related issues.

Your top three organs that prolapse are (typically) your bladder (cystocele), your rectum (rectocele), and your uterus (uterine prolapse). Although most commonly occurring after child-birth, even those without children can have POP. Let’s focus on pregnancy and post-partum phase.

During pregnancy your uterus grows from approximately 5cm in size (which would hang out below your pubic bone), to what seems impossibly large to house the tiny little growing miracle (all the way up to the rib cage). This feat in and of itself does a few things, but thinking of organs specifically – they get moved, pushed and pressed all over the place because there just isn’t room.

How is this possible? Imagine your organs are like little boats at the dock. The boats (organs) wouldn’t do well in inclement weather (movement) if they were tied tightly or cemented to the dock; instead they have ropes (ligaments) to attach and hold them in a relatively stable position relative to the dock (abdominal wall/pelvis/ribs), and the other boats. Your organs aren’t cemented in place either, they essentially float being guided by ligaments, general positioning and support from other organs and the pelvic floor, as well as all the other connective tissue. So, when you are pregnant and the uterus is forging its way through the pelvic and abdominal cavity, everything else is able to move into new positions to compensate.

 

Once baby is born (vaginal or C-section), the organs suddenly have a lot more space to move around in – their ligaments and fascia have stretched, and there is no longer a tiny human occupying the extra space. As everything settles into a ‘new normal’, if everything is coordinating well, the organs will be situated in a similar position to pre-pregnancy with some slight variance. If the pelvic floor isn’t able to support, or other muscles around the rib cage are having difficulty relaxing, we can get changes in pressure that contribute to pushing these organs down and create POP and various symptoms.

What do we watch for? Feeling of heaviness, falling down or falling out, pressure, discomfort, or bulging, difficulty inserting a tampon, or keeping a tampon in, are all common complaints of POP.

There is much that Pelvic Floor Physio can do to assist with POP, and in many instances resolution of symptoms is possible.

Haylie has been practicing women’s health and focused in prenatal and post-partum care since graduating from the U of S MPT program in 2011. Advocating for treatment for women, ensuring appropriate and effective care throughout pregnancy and post-partum, and helping all expecting and post-partum moms brought her to open her family-friendly clinic; where clients are encouraged to bring their infants and children to treatment. Warman Physiotherapy & Wellness has been nominated for the 2016 WMBEXA and ABEX Awards, is a WMBEXA award recipient of 2017, and Haylie was recognized as YWCA Women of Distinction for Health & Wellness in 2017.
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What YOU want to know about the Pelvic Floor: Part 1

Q: How do I know if I should see someone?

A: There are many different signs or symptoms that children, women and men can watch for to know if they should be seeing a pelvic floor therapist. Some of the big things to think about include:

  • leaking (urine or feces)
  • urgency and frequency (many trips to the bathroom, or getting to the bathroom and voiding small amounts)
  • pain with intercourse
  • pressure in the pelvic floor
  • feeling like things are falling down or falling out
  • needing to ‘lift’ the pelvic floor or ‘help down there’ to void the bladder or evacuate the bowel
  • inability to increase activity due to any symptoms
  • low back, pubic symphysis, hip or SIJ pain
  • recurring tightness of the hips and pelvis
  • you have been pregnant
  • you have delivered a baby (vaginally or via c-section)

… and this isn’t necessarily an exhaustive list, just the first things that come to mind for clientele that frequent the clinic. Essentially if you feel there is something that is ‘off’ or ‘wrong’ within the pelvic floor, abdomen or pelvis, seeing a pelvic floor therapist may be of benefit.

 

Q: Do you recommend that all women see a pelvic floor physio? Or just if they are “leaking”?

A: There are a great many symptoms that can be indicating factors for pelvic floor dysfunction that doesn’t have anything to do with leaking in particular. To answer this question in short: yes. In long, I would say that many women would benefit from a pelvic floor assessment regardless of their “leaking” status, especially for women who have had children, or anyone who experiences pain with intercourse.

A big reason for the general answer of “yes” is the fact that what we know about pelvic floor is not necessarily functional working knowledge. Rather, most women ‘know’ they are supposed to do ‘kegels’, and yet no one has taken the time to explain or ensure that they are being done correctly. What we know about kegels is that they are meant to strengthen the pelvic floor, and most women describe that they imagine SQUEEZING the pelvic floor. As my clients know, the pelvic floor to work functionally needs to LIFT UP and IN, not squeeze, as well as RELAX down and out.

Just because you aren’t leaking, doesn’t necessarily mean that the pelvic floor is functioning well. Just the same as even though many people do not have knee pain, they often have weakness or tightness that could be addressed to prevent issues arising in the future.

 

Q: When do you recommend women be seen? During pregnancy? Post-partum?

A: Women can and should be seen whenever they are having issues. Issues are bound to arise during pregnancy and post-partum. So long as there aren’t any contraindications to a pelvic floor exam by the treating physician or OB, assessment during pregnancy is possible as well (after the first trimester). During pregnancy some women will choose to attend an assessment for labor and delivery preparation after 32 weeks gestation to help get a better handle on relaxing the pelvic floor; we do want a baby to come down and out after all!

Post-partum we are able to see women that are painful as soon as they feel up for leaving the house, and specific for pelvic floor assessment approximately 6-8 weeks post-partum. Pelvic Floor Therapy is able to address c-section healing and recovery, as well as perineal healing and recovery. Tearing, surgical incisions, other birth traumas can all be addressed in the post-partum phase.

Q: What if I haven’t had children in a few years but am experiencing problems? Can physio still help?

A: YES YES YES! The absolute best thing about the body is it’s propensity to change. It is never too late to see a pelvic floor physio, 8 weeks, 8 months, 8 years or longer we can always see what changes can be made to help resolve any complaint

Q: What are some signs of a weak pelvic floor?

A: The simple answer for this one is leaking or incontinence. The long answer is – it depends on whether it is loose and weak (not very common) or tight and weak (much more common). Often we equate something being tight or taught with being strong, but this is definitely not the case with the pelvic floor. A tight but weak pelvic floor often progresses through one or a combination of: discomfort or pain with intercourse, constipation or difficulty completely emptying the bowels, discomfort or bruised feeling through the perineum or tail bone, hip tightness and restricted movement, low back pain… and more. One client had neck pain (right by the shoulders) that she had had since her second was born (5 years previous) and nothing seemed to help. Ultimately this client had pelvic floor weakness that was driving her neck pain!

Do you know someone having issues with this area? Maybe they have some of the complaints listed above – share with them! Are YOU someone suffering with these symptoms? Contact us today to get started your path to resolution!

Do you have some BURNING questions you want answered that wasn’t covered? Send them our way and we will get them going in Part 2!

Haylie has been practicing women’s health and focused in prenatal and post-partum care since graduating from the U of S MPT program in 2011. Advocating for treatment for women, ensuring appropriate and effective care throughout pregnancy and post-partum, and helping all expecting and post-partum moms brought her to open her family-friendly clinic; where clients are encouraged to bring their infants and children to treatment. Warman Physiotherapy & Wellness has been nominated for the 2016 WMBEXA and ABEX Awards, is a WMBEXA award recipient of 2017, and Haylie was recognized as YWCA Women of Distinction for Health & Wellness in 2017.
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