Physiotherapy with Natalia

For me, physiotherapy is so much more than just working on my pelvic floor. This is because so many other parts of the body get pulled into the endo pain process. When you’re in pain you tense your pelvic and abdominal muscles, this leads to tension in your hips, and walking in a ‘protective’ manner. Now your legs and lower back begin to ache. A combination of stretching and strengthening, rolling on a foam roller, manual release of the pelvic floor, and massage into all those areas has helped play a role in getting me back on my feet for more hours of the day. I hope to continue to share techniques with you, so you can try and achieve some of these things at home.

Today I asked my lovely physiotherapist Natalia, to share with you how to stretch out your hips and prevent pain often associated with endometriosis and other gynecological conditions. Natalia has been treating me for a few months now and I can already feel the difference. I have less pain in my hips, lower back and legs, the ability to walk for longer periods and a feeling of overall greater strength in my body. Here is what she had to say…

“When dealing with endometriosis and pelvic pain it is sometimes difficult to get moving and to know where to start when it comes to exercising and stretching.  Stretching the hip muscles can really help to loosen up the pelvic floor muscles as well because of how closely these muscles interconnect.  Try some of these simple stretches to improve hip movement, increase blood flow, and stretch the pelvic floor muscles.

The Frog stretch: Get onto hands and knees with your knees out wider than your hips, you can stay on your hands or you can move to your forearms to get a deeper stretch.  I like making this stretch more dynamic, so rock forward onto your forearms and then backward sinking into your hips.  You can also turn your head side to side and imagine bringing your nose toward your knee and alternate side to side.  You will feel a stretch in your inner thigh, buttocks and in your hips.

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The hip flexor stretch: Place one foot onto a stool or chair, and with both feet facing forward lunge forward stretching the hip on the back leg. You can place your hands on your hips or bring them overhead to get more of a stretch in the abdominals and a deep stretch in the front part of the hip.  Once again, I like to make this dynamic to increase mobility and improve blood flow, so I move in and out of this stretch as well.”

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For more information on how to get in touch with Natalia, her details are below 🙂

Natalia Farnsworth PT, DPT, CAFS

Doctor of Physical Therapy

Certified in Applied Functional Sciences

SPEAR Physical Therapy

30 Broad Street- Ground Level A

New York, New York 10004

t: 646-790-7454  f: 212-379-2076

 

Pelvic PT – The missing link in your endo treatment plan

Getting my diagnosis for adenomyosis was one of the most psychologically traumatic experiences. On the one hand, I was so relieved when the doctor said he could see this additional disease on my scans and during the lap, because it explained why I was still in so much pain after TWO excision surgeries for endometriosis. On the other hand, the treatment options according to my surgeon were hormones (which I react badly to) or hysterectomy. I was devastated. I wanted a family above all else. But I was in so much pain every day. This was the beginning of a health journey to find other ways to cope with the constant uterine cramping and contractions. I sought a second opinion from a renowned gynaecologist and was referred to a pelvic physiotherapist.Not only did she help to reduced the tension and spasms occurring in the surrounding pelvic muscles, but it provided a much needed outlet for my struggle with this disease on a weekly basis.

Today I interviewed the lovely Dr Susie Gronski to provide you with all the info about pelvic PT and hopefully help you on your journey to a pain-free life.

Me: How did you get into pelvic PT?

Susie: Funny that you ask! I think pelvic floor PT found me <chuckle>. After graduating from PT school, I couldn’t sit still. I’ve always been interested in neurology and focused my career on working with patients who’ve experienced a stroke, traumatic brain injury, spinal cord injuries, balance disorders, and vertigo (fancy term for dizziness). To tell you the truth, I was bored. I kept wringing the juice out of each job and looking for bigger challenges. Then one day a friend of mine told me about an opportunity to observe a pelvic floor therapist in my area as she was looking to hire on another therapist and was willing to provide training. At the time, pelvic floor PT never crossed my mind! My gut was telling me to pursue this curiosity of mine, so I did. I’m so glad I did! I discovered my heart’s passion for pelvic floor therapy and visceral manipulation, both of which have changed my life, professionally and personally. Since discovering my niche for such a specialty, I’ve transitioned into private practice where I have the freedom to provide care without limitations. Quality care that I believe everyone’s entitled to.

Me: What are some of the common issues you see and treat?

Susie: This one is tough to answer mainly because I see a variety of conditions in my clinic. I treat both men and women and generally the most common issues are pelvic pain. I also see patients with the following:

• bladder issues, such as: urinary urgency-frequency (having the urge to urinate frequently), stress urinary incontinence (loss of urine with activity), or a combination of both
• bowel issues – constipation, IBS, bloating, slowed intestinal motility, hemorrhoids
• tailbone pain while sitting
• pain with intercourse and/or pelvic exams
• difficulty with orgasm
• erectile dysfunction
• prostatitis; also known as chronic pelvic pain in men
• pregnancy related pain and post-partum care
• adhesions – from abdominal/pelvic surgery or inflammation
• pelvic pain associated with endometriosis
• post-prostatectomy related erectile dysfunction and urinary issues
• penis pain
• nerve entrapment syndromes

The list could go on and on! One of the many reasons why I love pelvic floor PT is for the variety of conditions seen and the challenge of creating a treatment plan specific for each patient’s individualized needs and goals.

Me: How can pelvic PT benefit women with endometriosis or chronic pelvic pain?

Susie: In one study I’ve read, approximately 30-50% of women with chronic pelvic pain have endometriosis. Some go undiagnosed and many have the disease but are asymptomatic. A common issue that I see with women who have endometriosis is deep pelvic pain with intercourse, disrupting their overall quality of life and satisfaction. Typically, those with pelvic pain have over active pelvic floor muscles that are guarded and shortened. Pelvic floor PT can help by releasing tight pelvic floor muscles, manually working to release tender points and connective tissue restrictions found during the exam.

Aside from just working inside the pelvis, it’s also beneficial to look at the supporting pelvic structures, such as: hips, abdomen, and spine in order to rule out any other contributing factors to sub-optimal pelvic floor function. I always say that the pelvic floor is like a trampoline. It needs to be elastic to function properly. I also think visceral manipulation has excellent outcomes when it comes to pelvic pain and adhesions (fibrous bands that form between tissues and organs) that result from the endometrial tissue itself or from surgery. Pain in the pelvis can be referred from organs, and in cases such as endometriosis, it’s important to assess the mobility of the bladder, uterus, and rectum. Endometrial tissue can proliferate in between these organs and within the pelvic wall itself, therefore mobilizing pelvic organs can definitely help create balance within the pelvis by improving fluid dynamics, decreasing pelvic congestion, and abnormal tissue tension that might be compromising sensitive nerves through the pelvis. A healthy organ is a mobile organ. Motion is lotion!

Other helpful treatments include regulating the nervous system down with deep, diaphragmatic (belly) breathing, guided relaxation of pelvic floor muscles, pelvic stretches, functional movement integration, etc. Every patient that walks through the door is unique and should be treated as such. There isn’t a cookie-cutter treatment protocol for those with pelvic pain. You kind of just have to do what works best for that patient.

Aside from all the hands-on work therapists can provide, I feel that the support and coaching that therapists provide is priceless. I’ve been blessed to be able to provide a safe space for my patients to tell their story. To be heard. To be listened to. The greatest gift is often times silence. It’s unfortunate that I still hear things like, “I tried to tell the doctor but they just didn’t listen to me.” I’m a firm believer in trusting our body’s own inner wisdom to heal. As a pelvic floor PT, I feel that it’s very important to not only educate patients about pelvic floor anatomy and function but to also support and empower them to be their own healthcare provider; trusting in their own intuition to make the best healthcare decisions available to them.

Me: Are there any strategies women can use if they are at home and in pain?

Susie: Great question! I encourage everyone to practice B.L.I.S.S.I.P.L.I.N.E

Here’s what it means:

Breathe- do practice deep belly breathing throughout the day

Laugh- laughter is therapeutic. You can only experience one emotion at a time, so laugh often!

Invest- investing in your health is the greatest gift you can ever give yourself

Silence- take 5 min out of your day to be in the moment, meditate often

Stretch- gentle stretching helps increase circulation, improves mental health and flexibility. Also helps relax pelvic floor tension.

Intuition- trust in your own body’s inner wisdom to heal. Follow your gut when making decisions about your health. Remember, you’re your own best healthcare provider.

Positiveness- your perspective is everything! If you think it, it must be true.

Let go- relax and treat yourself. Even if it’s wearing a sexy pair of underwear! A great quote: “pain is an ideal habitat for worry to flourish”- Eccleston

Ink- there’s something about writing it down on paper. Keeping a journal helps cope with anxiety and stress improving your overall mental health and wellness.

Nourish- eat real food and hydrate, hydrate, hydrate! Eliminate sugars, processed foods, and artificial preservatives. Start incorporating foods that are more anti-inflammatory.

Exercise- add in a little bit of light activity to your day. This could range anywhere from talking a short walk to just putting the dishes away. Make “exercise” fun and modify it to your lifestyle. Remember, “motion is lotion and rest is rust”- Mike Stewart

Me: Do you have any thoughts you would like to share with women suffering from pelvic pain?

Susie: No one ever said the journey would be easy but they also didn’t say that you can’t love yourself along the way.

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Dr. Susie Gronski, DPT, PRPC is a Doctor of Physical Therapy and a Certified Pelvic Rehabilitation Practitioner. She has a private practice in Willow Springs, IL where she treats men, women, and children with pelvic health conditions. She loves blogging and staying connected with her followers. Her mission is to spread the word about taboo health subjects with a little twist of humor. If you’d like more health tips from the pelvic expert please join her community and connect with her on:

  https://www.facebook.com/drsusieg/

 @dr.susieg

@drsusieg
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p.s. check out Susie’s website www.drsusieg.com for my interview with her on living with endometriosis.

Coachella for the chronically awesome

I wanted to share my Coachella experience with the spoonie community. I was so excited to see so many fantastic artists, but it turned out to be a lot of hard work. Luckily, there are a few simple ways to make it an enjoyable experience for someone with a chronic illness.

Day 1

Was a total disaster. We had no idea where we were going. Our uber driver was a lunatic, swearing at the traffic monitors, so we ended up getting dropped off about 2 miles out from the festival. It was a long old journey to get to the stages, without about 3 check points involving waiting for 20 minutes in each line. Our wrist bands didn’t work, so we had to treck across from one end of the festival to the other in order to get them activated. This is no mean feat, Coachella is almost 30 square miles! By the time we got to the stages I was exhausted. My back and abdominal area were aching. I lasted about 15 minutes before I called quits and made the journey back out to the uber station.

Day 2

I spent some time researching Americans with Disabilities Act (ADA) and their provisions at Coachella, turns out there is a golf buggy that can come and pick you up!  However, I didn’t plan far enough in advanced, when I got there it was a 30 min wait until the buggy could come and get us. My partner and his friends were going to miss one of their favourite musicians, I felt too bad to make them wait, so trecked again from the uber drop off (at least not as far as the day before.) I managed to stay a little longer than Day 1, and i got to see Disclosure! Sam Smith came out and I would be lying if i said I didn’t have a little dance to Omen and Latch 🙂 but the standing and walking around again left me very sore and ready to put my feet up.

Day 3

We finally figured our shit out! I called the ADA unit in advance, there was a golf buggy waiting for us on arrival. At first the guy looked at me and didn’t believe I was there for ADA because he has so many people hassling him for a ride all day. When he realised I was legit, he felt terrible and apologised profusely, saying they don’t discriminate #invisibleillness. We skipped all the queues and got dropped right inside the festival! I couldn’t have been happier to arrive there without already being in pain. He also took as to the ADA tent, where I got a wrist band allowing me to skip the lines and give me access onto the viewing platforms (if you want to do this make sure you arrive 20 minutes before the show starts to get a seat.) I had an incredible day 🙂

What I learnt is that most big organizations will go out of their way to help people with a disability, and Coachella certainly does not let down the spoonie community! You just need to do some research and be prepared.

For more information on how to make next year and enjoyable experience visit their site.

Feel free to contact me if you have any questions about my experience at Coachella.

Hugs,

Nat xx

 

Fighting For Our Life

Endometriosis isn’t just excruciating pain each month, mind numbing fatigue and frequent nausea that inhibits my ability to enjoy any food, it is also an extreme emotional rollercoaster and something has stopped me enjoying life in a way that most people would take for granted.

Not only do I have monthly labour-like pain, but since I did not receive early treatment for horrendous period pain and excessive bleeding (despite hundreds of tests and medical appointments), the condition became chronic. Now I suffer every single day. My day goes like this… I get woken up by a deep pulling pain just under my belly button, I stumble to the bathroom but that just makes the pain worse. So I scramble to get some painkillers. Within 45 minutes I finally feel a slight reduction in pain, enough to allow me to prepare something to eat (something plain of course, because otherwise I’ll spend the rest of the morning trying to subside my nausea). At this point, I will either still feel pretty terrible and resign to the fact it will probably be a non-eventful day, or pull my broken self together and try to do an activity – get the groceries, clean the bathroom, go for a walk. By the time I get home, I have an ache in my back so intense that I have to lie down. It doesn’t really go away until I have been horizontal for an hour and taken some strong painkillers again. Then I will try to get up again – I am stubborn like that. I will keep trying to get up, because the alternative is that my life is pretty pointless. I might try and prepare dinner or meet a friend for coffee. Either of those activities will trigger my lower back pain again. Otherwise, I’ll just cancel plans entirely, unable to get off the couch because I am too exhausted to even lift my own arm and change the TV station. As a result of this daily struggle I can not pursue a career, I can not have a social life, I can not play sport, I can not be an active and contributing member of my family or my society. And I am not alone. Although my case is extreme, there are 176 million women worldwide that endure what I described above to some extent. Firstly, no one should have to go through that suffering. But secondly, think about how many women are then spending money on costly treatments and simultaneously are unable to contribute to a world that desperately needs strong and passionate people. The estimated financial burden of endometriosis is $22 billion in the United States[1], yet the funding for research going into this disease according to the National Institute of Health was only $10 million last year[2]. That makes no sense. We need to stand up and say ENOUGH! Enough suffering endured by my sister, wife, girlfriend, mother or friend. I demand answers. Women battling in silence, please speak up. People who know loved ones suffering, please speak up. Talk about it, post about it or take up the yellow challenge by posting a yellow photo every day this month. Until we create a conversation loud enough to be heard by those in a position to fund research, there will be no change to the archaic diagnosis and treatment methods currently being used.

Natalie xx

P.S. If there are any women who believe they have a few of the endometriosis symptoms or have received ineffective treatment, please contact me and I would be happy to try and help you on your journey.

[1] Simoens, S., Hummelshoj, L., & D’Hooghe, T. (2007). Endometriosis: cost estimates and methodological perspective. Human reproduction update,13(4), 395-404.

[2] https://report.nih.gov/categorical_spending.aspx

 

Trying to get the best out of my body

I take an insane amount of supplements. They are like a meal in themselves. But I definitely notice the difference when I don’t take them. Anything to help with fatigue and overall feeling unwell is worth it to me, even if it only helps 10-15%. So I thought it might be worth running through some of the things I take, and maybe they could help you too.

Without fail I always take omega-3 fatty acids. I did my research in nutritional neuroscience on omega-3. I have read so many scientific studies on its benefits and have seen first hand how powerful of an anti-inflammitory it is. I will probably always take it. Just a quick re-cap on my thesis, last year I had a colony of mice (don’t worry I treated them like my children), and we gave them a high fat diet. After 3 months we tested their memory. The ones that had been on the high fat diet could not remember how to get out of a maze. The ones that had received omega-3 as well were significantly better at remembering. The reason that I knew it was related to inflammation, was because the ones that also received aspirin were equal to omega-3. Ok nerd rant over!! Anyway, omega-3 fatty acids appear to be helpful for any inflammatory condition. When you take this make sure it is refined (you don’t want fish oil with mercury in it) and always take the recommended dose because too much can be bad on your liver.

In addition to omega-3, I also take magnesium powder. It helps to reduce muscle cramping. This was recommended by my endo surgeon to help with chronic adenomyosis pain. I also have lots of fibre everyday, which is important because I am on some pretty heavy pain killers. I also have a multi-vitamin in powder form (it gets absorbed better than tablets). And finally I take a few additional things recommended by my alternative health doctor. She has instructed me to take N.A.C to support my liver in processing panadol/acetaminophen. I also take a digestive enzymes due to IBS type symptoms, calcium (I don’t have a lot of dairy in my diet anymore) and a natural anti-histamine called Quercetin which helps with my hot flushes.

Please let me know if you have any questions 🙂

Endometriosis and autoimmune diseases

I am a member of several discussion boards and support groups on Facebook for endometriosis and adenomyosis, and I started to notice a pattern. Many women are also suffering from several co-morbid conditions, especially auto-immune diseases. So I did some of my own research, and I found some interesting statistics. There is a distinct association between endo and auto-immune diseases. For example, women with endo are 100x more likely to develop chronic fatigue syndrome and twice as likely to also have fibromyalgia – characterized by widespread pain, fatigue and mood alterations (see link below). They are also more likely to develop disorders such as rheumatoid arthritis, multiple sclerosis and lupus.

I personally believe this has something to do with the increased inflammation associated with endo. Multiple studies have linked elevated levels of inflammatory cytokines with endometriosis tissue (I dug into this while researching cytokines for my neuroscience honours research thesis – let me know if you would like to read any of it.) I am not sure whether we genetically inherit increased levels of inflammation, whether it is caused by events in our life or caused by the disease itself which has a flow on effect to other conditions. But I do believe that reducing the inflammation can help us manage these illnesses. I take omega-3 fatty acids to reduce the inflammation (this is what I was testing last year at university), and also try to eat a diet rich in fruit and vegetables to give my body the nutrients it needs to fight the inflammation. By doing this I hope to prevent the development of any other auto-immune diseases. Please let me know if you have any questions about my research, theory or diet. I am happy if I can help other ladies in need ❤

Sources:

http://www.medscape.com/viewarticle/442245

I want to be well to make the world a better place

I have noticed a certain amount of pressure on bloggers suffering from a chronic illnesses from non-sufferers. For example, to post about what we have learned from our illness and approach it from a positive outlook. And while there are gifts I have been given from being sick, I have lost a heck of a lot too. I want people to know just how debilitating it is to suffer from stage IV endometriosis and adenomyosis. 

Before getting chronically sick, I worked hard at everything in my life (maybe even a little too hard). But as a result I was reaping the benefits of some great accomplishments. I had a great job in a supportive environment, I was studying psychology and researching nutritional neuroscience, I was modelling for some of Australia’s best designers, I was involvement in charity work, and a member of the local touch football team. But this disease has robbed me of everything – especially my ability to contribute positively to society. There is no way I could now raise $120,000 for cancer research (as I did in 2011),  I can’t get out of bed for more than a few hours most days. I want to invest my energy into creating a better society, instead of battling excruciating pain and fatigue every day. I want back those things that defined me.

We need to spread awareness about endometriosis and try to increase funding. If you ever get the opportunity to sign a petition for either of those things, I would be very grateful if you could put your name to the cause. In some way we are all impacted by the devastating effects of endometriosis or adenomyosis, whether it is personally, through the suffering of a loved one or through the inability of a sufferer to make their mark on the world. 

Why is it so hard to get out of bed these days?

Over the past year I spent a lot of time researching endometriosis and adenomyosis. I wanted to know why I am so tired all of the time. Why is it that now I can only do 1-2 activities a day when I used to do 8? Why do I feel like curling up with a cup of tea and not getting out of bed for days on end? Previously it would take a pretty bad flu or infection to keep me away from work/school/uni/projects and friends. Well I think I figured it out.

Have you ever heard of something called cytokine induced sickness behaviour? Cytokines are the inflammatory markers that are produced when you have an infection (or a condition like adenomysosis). They are designed to encourage the person to rest until the infection is healed. They trigger symptoms such as loss of appetite, sleepiness, withdrawal from day-to-day activities, fever, achey joints and fatigue. This could be why we always feel like we are fighting something off! Endometriosis and adenomysois have both been associated with drastically increased inflammatory markers.

Hats off to us for even getting out of bed today at all.

We need your help!

Women see 8-10 physicians before receiving a diagnosis – severe physical pain is misdiagnosed as mental illness or IBS and left untreated over and over again. It is not good enough!!!!! With an impact on the economy of $190 billion dollars annually, even governments should be interested in relieving that burden and finding a cure.

Please vote for EndoWhat? so we can educate women and doctors on how to manage endometriosis and hopefully find a cure through film. 

“Until the group that is affected stands up and says ‘ENOUGH ALREADY’ it will not stop” – click here to watch the preview of the film that will hopefully change the lives of so many.

Excision vs laser surgery

My period pain was so severe before excision surgery that my sister called the ambulance in response to my agonised screams. I was rushed to emergency and administered morphine – I have not had pain this severe since the surgery 🙂

Ok. You’ve got the diagnosis for endo. Now what? There are a range of options that your doctor may suggest, but how do you know which option to choose? I will first explore the two surgical options for endo: excision vs. laser. Both are performed laparoscopically, meaning small incisions are made on the abdomen, allowing surgical tools and a camera into the pelvic region to perform the work. This mean that the surgery will not leave large scars across our belly and it is also a lot safer.

Excision surgery

The only real treatment for endometriosis is excision surgery. This involves cutting out the endometriosis right down to the roots. It is currently the gold standard for treating endometriosis. If you have excision surgery keep in mind that it can take anywhere between a few days to a few months to see results. My first few cycles were very painful and improved after that. After this time, most women find a decrease in their pain and other symptoms. However, in some cases (about 5%) pain may continue due to other gynaecological conditions such as adenomyosis (in my case) or very aggressive cases where the endometriosis grows back quickly.

Laser removal 

If your doctor recommends this – get out of there and find a surgeon who will perform excision surgery. In most cases laser removal will lead to regrowth of the endo because it doesn’t remove it down to the root. Unfortunately, there are not enough surgeons trained in excision surgery for the number of women who require treatment. This is where we need to stand up and demand better care from the medical profession and our government (this coming March is endometriosis awareness month and will be a good time to start this conversation.)

My next post I will talk about hormonal treatment and pain management. Feel free to ask me any questions. I will always do my best to find you accurate and scientifically backed answers.