Guest Post : What is Pelvic Floor?

I am pleased to share this article about Pelvic Floor by Theresa Wilk Feeley, PT, DPT, PRPC, NCMP, RYT, Pelvic Health & Wellness Center Director at Atlantic Pelvic and and Wellness Center / Physical Therapy.  It compliments my post on Have You Considered Pelvic Floor Therapy. 

 

Theresa Wilk Feeley

 The pelvic floor is a group of muscles that span the base of the pelvis, with the hip girdle at either side,

the pubic bone in the front and the tailbone in the back. These muscles play a critical role in bowel,

bladder and sexual function. The deeper layer works to stabilize the hip girdle and also helps to support

the organs that sit in the pelvis (bladder, rectum, uterus). They work especially hard during pregnancy

when they need to support the growing uterus while also stabilizing the pelvis.

 

The deep layer contracts and relaxes rhythmically with your breathing. As you breath in, air fills the lungs and the guts descend creating a gentle stretch to the pelvic floor muscles. As you exhale, the muscles naturally contract to lift back up and help to push the air out. When these muscles don’t work with your breathing, you might have symptoms of stress incontinence with forced exhalation (sneezing, coughing, laughing). This rhythmic up and down motion also creates a sump pump effect for the gastrointestinal system to aide with digestion and lymphatic drainage.

 

There is also a superficial layer of muscles that work for sphincter control to close the urethral, vaginal and anal openings. Both this layer and the deeper layer need a balance of strength and flexibility. They need to contract to lift up for support, and to close the opening to hold things in (urine, gas, stool). They also need to relax to allow for your bowel and bladder to empty. In a female pelvis, the relaxation is also important to allow for tampon use, gynecological exams and intercourse. There is more awareness around weakness in the pelvic floor muscles in relation to incontinence but tightness is also extremely common. Short and tight muscles lead to bowel, bladder and sexual dysfunction, as well as pain in the pubic bone, tailbone, hips and lower back.

 

Looking for your pelvic floor muscles? In sitting, use your hand to find your tailbone and then moving a little further down and towards one side. Next, contract your pelvic floor muscles by creating the motion of stopping the flow or urine or trying to hold in gas. You should feel a small movement under your fingers as these muscles activate. You can do the reverse motion by gentle pushing down like you would to have a bowel movement. A healthy pelvic floor should be able to do both motions!

There are many reasons why Kegels aren’t helping your pelvic pain or dysfunction.  And the biggest one is that you don’t need to be doing them.

But if you do have weakness in your pelvic floor that is causing dysfunction, doing Kegels correctly will strengthen these muscles.  Some of the biggest reasons they don’t work is that they are done incorrectly, not frequently or long enough or they are only performed lying down. If you have pelvic floor dysfunction that isn’t responding to Kegels - see a pelvic floor practitioner!!! They can assess your quality of contraction, dose repetitions in what positions or what movements- or discover that you don’t need to do them and get you the right treatment and exercise program!

 

Dee

Every Day is a Blessing! 

Have You Considered Pelvic Floor Therapy?

In 2018, the #gyncsm community chatted about Pelvic Health After a Gyn Cancer Diagnosis. We discussed how treatments for gynecologic cancers affect pelvic health. We also talked about pelvic floor physical therapy and how it can help alleviate many of the pelvic issues including pain and dysfunction such as urine leakage. 

"Pelvic heath involves the entire area of the bony pelvis, lower abdomen, genitals, reproductive organs, muscles, bowel/bladder/sexual function, nerves...and more." "GYN survivors often have bladder/bowel issues after radiotherapy & surgical treatment." (#gyncsm chat 12/12/18 transcript) 

When the muscles in the pelvic floor are weak or don't function properly then pelvic dysfunction may happen. In addition to surgery, radiation such as brachytherapy ( internal radiation used to treat cervical, endometrial and other cancers ) can also effect the pelvic floor muscles as well as issues due to aging, being overweight, injury and pregnancy.

Pelvic floor therapy is a specialized therapy for those with pelvic floor dysfunction. Exercises can help strengthen muscles, increase range of motion and help restore the function and eventually get you back to a normal routine. 

The Mayo Clinic , when discussing physical therapy states:

"Stretching exercises, massage and other relaxation techniques may improve your chronic pelvic pain. A physical therapist can assist you with these therapies and help you develop coping strategies for the pain. Sometimes physical therapists target specific points of pain using a medical instrument called transcutaneous electrical nerve stimulation (TENS). TENS delivers electrical impulses to nearby nerve pathways. Physical therapists may also use a psychology technique called biofeedback, which helps you identify areas of tight muscles so that you can learn to relax those areas."

When I saw my advanced practice nurse last year I discussed some issues I was having. She thought it was a good idea to try physical therapy and gave me info on a physical therapists in North Jersey. 

When I got home I remembered a zoom workshop I watched during Covid on Menopause and Pelvic Health given by the same physical therapy group I had used when I had issues with my knee. So I reached out. 

In December, I started the pelvic floor therapy with Theresa Feeley, DPT from Atlantic Physical Therapy. I had thought I had been doing the Keegal exercise correctly but I had not. The physical therapist went over the correct way to do it as well as  breathing techniques while laying down and standing. She also asked me to keep a diary of what I ate and what I was doing when issues occurred. I found that I would use the restroom before I left the house even if I might have gone 15 minutes before. It didn't matter if I was going to be out for a few hours or a quick run to the post office I would go. In effect I had programmed myself to go and of course my bladder worked accordingly. So I was "going" more that I really needed to.  I had to consciously tell myself that in most cases I did not need that extra trip to the rest room. 

Using the diary I found that I had more issues when I had caffeinated beverages. So I have cut back on caffeinated tea, soda and coffees.

Between visits I perform the exercises and follow the breathing techniques especially when bending over during yoga and Jazzercise.  Here I am, a few months later, and I have seen a significant improvement.  

 I urge other women who have issues with leaking etc to speak to their health care provider and ask for a referral for pelvic floor therapy. I'm happy I did!

 

Dee

Every Day is a Blessing. 

Hello 2023!

As I begin 2023, I have hope for the future- for my health, my family and my advocacy. 

As many of you know, I begin each year with a few aspirations.

I have a bucket list that includes visiting all 50 states. I have 16 to go but the one that has been on my aspiration list since 2015 is Maine. It is the  only state I have not visited east of the Mississippi. I would like to visit the Wyeth museum, Acadia national park and of course some light houses. 

I aspire to continue to exercise - Jazzercise, yoga and this year bike riding. My friend gave me one of her extra bikes last fall. I've only ridden three times since then but look forward to getting out and riding around my town when the weather is nice this year. 

I aspire to do more art work. I'll continue working in watercolors and I'll add Barn Quilts. I've been following a group of Barn Quilters on Facebook and just love what they are creating.  I made small wood quilt ornaments for my friends for Christmas this year

 

 and would like to try larger 1' x1' or maybe even larger 3' x3' paintings.

When it comes to my advocacy work I already am registered for the SGO meeting this spring. Let me know if you are attending. Big news is that an abstract Annie Ellis, ovarian cancer survivor and advocate, and I submitted has been accepted for presentation. This is really exciting! I also was nominated and submitted my application for a task force position and will let you know if I am chosen. 

There may be some advocacy activities that I will cut back on as I spend more time with my grandsons and kids but you will continue to find me chatting along with Christina Lizaso as we take the #gyncsm ( Gyn Cancer Social Media) community on Twitter to every other month chats at 8pm ET. See you on January 11 when we chat about "Survivorship".  Or check out what we had done in the past on our blog- http://gyncsm.blogspot.com/

Wishing you all good health , love and friendship in the year ahead.

Dee

Every Day is a Blessing!

 

 

 

  

15 Years !

 

It is hard for me to believe that here I am in 2022 writing a post celebrating 15 years as a blogger. I know this year I posted less than one quarter of what I posted in 2008, my first full year of blogging.  But I did post from two oncology meetings,  SGO, which I attended in person ,and ASCO which I attended virtually due to a case of vertigo. In other posts I shared research news, FDA drug approvals, a book review and two posts by guests. 

As I looked back on what I wrote about this year, I realized I completely forgot to share two endeavors that were very exciting for me.  

I was a co-author with other amazing advocates of an article in JCO Oncology Practice.   

The Rise of the Expert Patient in Cancer: From Backseat Passenger to Co-navigator https://ascopubs.org/doi/full/10.1200/OP.21.00763 

Please give it a read when you get a chance and see the expanded role advocates play in their care as well as in cancer policy and research.

Along with #gyncsm co-founder, Christina Lizaso,  researchers from Duke University and SMART Patients we had an article published in Gynecologic Oncology Reports. 

 

Understanding the needs and perspectives of ovarian cancer patients 

when considering PARP inhibitor maintenance therapy: Findings from two online community events

https://doi.org/10.1016/j.gore.2022.101050

In this article we found women with ovarian cancer in online communities have educational needs regarding PARP inhibitors and they would likely benefit from educational tools.

I'll catch up with you in January for my aspirations for 2023.

Dee

Every Day is a blessing!

New FDA Approved Drug for Ovarian Cancer Recurrence - Impact on Patients

On November 14, 2022 the FDA granted accelerated approval of mirvetuximab soravtansine-gynx (Elahere, ImmunoGen, Inc.) and antibody drug conjugate. (https://www.fda.gov/drugs/resources-information-approved-drugs/fda-grants-accelerated-approval-mirvetuximab-soravtansine-gynx-fra-positive-platinum-resistant) . Women who have received one to three prior treatments and have folate receptor alpha (FRα) positive, platinum-resistant epithelial ovarian, fallopian tube, or primary peritoneal cancer can receive the drug. The FDA also approved the companion assay device (VENTANA FOLR1 (FOLR-2.1) RxDx Assay ) for determining folate receptor alpha (FRα). The device is made by Ventana Medical Systems, Inc.

The approval was based on the results of the SORAYA Study NCT04296890), a single-arm trial of 106 women who had up to three other treatments and also received bevacizumab. Patients who had ocular, corneal, grade 1 neuropathy or lung infection issues were excluded. The Overall Response Rate (ORR) was 31.7% and median Duration of  Response (DOR) was 6.9 months. 

Women who are given the drug will receive a dose of 6 mg/kg adjusted ideal body weight every 3 weeks by IV. I wondered what adjusted ideal body weight was, so  I found this formula for calculating it. Adjusted body weight(ABW) = Ideal Body Weight(IBW)  + 0.25 * (ABW - IBW)                         Source: (https://pubmed.ncbi.nlm.nih.gov/22836946/)

Some side effects women in the study experienced included vision impairment, fatigue, nausea, abdominal pain, peripheral neuropathy, diarrhea, decreased albumin, constipation, dry eye, decreased magnesium, etc. There is a warning for ocular toxicity. You may learn more at https://ascopost.com/issues/december-10-2022/fda-grants-accelerated-approval-to-mirvetuximab-soravtansine-gynx-for-fr-positive-platinum-resistant-epithelial-ovarian-fallopian-tube-or-peritoneal-cancer/ .

 I often wondered how fast drug approval translates into actual use in the clinic. It has been one month since the approval took place. The following is anecdotal information but I thought it was interesting enough to share. In that one month's time,  I have offered peer support to three women dealing with recurrent ovarian cancer. Two of those women brought up to me that their oncologists told them about the new drug "with the very long name". It seems like no one called it , Elahere. One has been already tested to see if she was folate receptor alpha (FRα) positive. One was told about it but will continue with her current treatment which is going well for her. But she was happy to have another option  for the future. One did not mention the new drug during our conversation. 

In the ASCO Post Article noted above Ursula A. Matulonis, MD, Chief of the Division of Gynecologic Oncology and the Brock-Wilson Family Chair at Dana-Farber Cancer Institute and co-leader of the SORAYA study stated “There have been no approved therapies for platinum resistant ovarian cancer since 2014, so [this] action by the FDA is a very significant milestone.”  I agree and I am happy to see how quickly oncologists are sharing the information about the drug with the patients. 

 

Dee

Every Day is a Blessing!

 

 

 

Powell-Drescher Foundation - Ovarian Cancer Research, Advocacy and Education

A few weeks ago I had the pleasure of having a zoom call with Sachia Powell. Sachia is an ovarian cancer survivor, advocate and founder of the the Powell-Drescher Foundation www.powelldrescher.org. We discussed the foundation she founded with Dr Drescher and a number of advocacy and education ideas. Here are two opportunities coming up for advocates.

The Powell-Drescher Foundation is hosting a free Zoom presentation on November 20, 2022, to provide information about research advocacy.  During the Zoom presentation, ovarian cancer researcher Dr. Kristin Anderson will provide information about how to navigate a research conference, as well as details about the AACR’s Scientist-Survivor Program (SSP).  Ovarian cancer survivor/research advocate Annie Ellis will share her experience with the SSP as well as her insights as an experienced research advocate.   To apply to attend the presentation click here. 

 

Along with that education program the organization will provide details about their new program an opportunity for an advocate to attend the American Association for Cancer Research (AACR) Annual Conference in Orlando in April 2023.To learn more or apply click here. The deadline is December 31,2022. 

You can read more about the organization on their website:  www.powelldrescher.org or follow  them at  @powelldrescher on Instagram  and Facebook, and @powerovarian on Twitter. 

 

 

Dee

 

Every Day is a Blessing! 

 

Guest post By Molly Lindquist: Another Cancerversary, Another Reason to Celebrate!

I am so pleased to be able to share with my readers this guest post by friend and advocate Molly Lindquist (@LindquistPDX). I recently spoke to Molly and Samira about Manta Cares. It offers helpful information, planners and coaching for not only gynecologic cancer survivors but all cancer survivors and their caregivers.  

ANOTHER CANCERVERSARY ANOTHER REASON TO CELEBRATE!

Next week is my 11-year cancerversary, which brings a mixture of feelings. I’m incredibly grateful to see another year. My daughters were just 3 and 5 years old at the time of my diagnosis, and I was so scared that I wouldn’t see them grow up. 

Now that they are teenagers, and my main job is annoying the heck out of them, that thought shifts further to the back of my mind.

But along with the gratitude comes the eternal question that never seems to dim with time: why me? 

 

Clearly there’s no easy answer to that one. My cells decided through some combination of genetics and environment (and bad behavior!) to mutate and grow into cancerous tumors. There’s nothing I can do to change that. While 11 years have passed since the day I heard, “You have cancer,” that doesn’t change the fact that the little “cancer devil” is always on my shoulder when any ache or pain pops up. Is it back? Or is this just a normal part of getting older? Is my life about to be derailed again? Or do I just need to pop some ibuprofen and accept that sometimes I can tweak my back just by sleeping on it funny?

 

While I’m not in the “cancer is a gift” camp, I do believe that we have control of how we react and channel our personal experiences, crappy as they may sometimes be. The major silver lining of my cancer experience has been the people I have been fortunate to meet along my journey; people who are taking their challenges and using them as a force for change. Recently, one of my favorite pay-it-forward inspirations has been my friend Samira. 

Samira was diagnosed young like I was, and like me, her life plans were derailed. Samira is a bio-engineer and healthcare product designer by profession. Even with her strong science background, her cancer diagnosis dropped her into the terrifying land of the unknown -- she describes it as going for a long hike without a map. To take control of this process, and stay organized, she created a planner for herself – an old-fashioned, paper planner – the simple tool this techie bio-engineer couldn’t find anywhere to help her stay organized and better communicate with her care team. When other patients, nurses and doctors saw her planner, they asked if they could share it with people in their communities, because they were certain it would be very useful. So, what started as a simple tool to help navigate her own breast cancer journey has turned into a company, Manta Cares. 

 

I have been lucky enough to join Samira on this new, Manta Cares adventure, and couldn’t be more proud to use my own experience to help make the cancer journey just a little bit easier for patients and caregivers. The goal of Manta Cares is to create tools for cancer patients and caregivers that we (and our loved ones!) were missing.

 

We recently launched Cancer Coaching with Dr. Maeve Baechler, a physician, coach and most importantly, a cancer survivor herself (Maeve is also on my pay-it-forward inspiration list!). As anyone with cancer knows, that diagnosis makes you rethink your entire life - dreams, goals, professional path - you name it, cancer impacts it! So Maeve helps coach people through this huge life change. I wish I had had a coach like Maeve 11 years ago (and grateful I get to utilize her advice and guidance now!).

 

We are also launching a monthly free resource to the Manta Cares community. Our first free resource is a Chemotherapy Checklist for Caregivers, with information about what to think about before your loved one starts chemo. There is also a free Caregiver Guide with tips and strategies to facilitate better communication with your loved one during this incredibly stressful cancer journey.

 

And we’ve only just started! More resources and tools will be rolling out over the coming months, so we hope you’ll keep in touch with us and share with anyone in your life who might be dealing with cancer, either as a patient or caregiver.

 

So as I prepare for my 11 year Cancerversary, I do so with a full heart. I know that I can never repay the kindness that has been shown to me over the years by my family, friends and even strangers, but I will continue to pay it forward for others on this rocky road. It is the only way I can turn my two bad lemons into lemonade (and yes, I will continue to chuckle at that joke for as long as I’m around to overshare it with you!).

by Molly Lindquist

 

Dee

Every Day is a Blessing!