Pelvic floor physical therapy is a treatment option available that may help with pain related to endometriosis, polycystic ovary syndrome (PCOS), interstitial cystitis (IC), and other illnesses that can lead to pelvic floor dysfunction. It's understandable that those who are suffering with endometriosis can have pelvic floor dysfunction as it's hard to relax when your abdomen and/or other areas are in constant pain.
I was diagnosed with endometriosis in 2010 and never heard to words 'pelvic floor physical therapy' until 2013 from a doctor at the Mayo Clinic. No gynecologist had even mentioned it to me before this time. When I first heard it, I had mixed feelings about it, but I was also desperate to be out of pain. I made an appointment with a pelvic floor physical therapist. The closest one to me is about a 6 hour round trip.
I first started going once a week because my physical therapist felt this was the best option for me until I could get rid of some of my spasming and pain. She did an initial assessment for my first appointment to see where I was so we could compare it when I was discharged and hopefully see improvement. During each appointment, she did internal biofeedback and connective tissue manipulation. Internal biofeedback helps patients to learn how to relax their pelvic floor and strengthen it. Something that a lot of people who have pelvic floor spasms struggle to do is relax because of disease or trauma. This is why every time I had a Papsmear, I would be in excruciating pain because I was unable to relax before they started the exam. In my case, the biofeedback sensor was connected to my therapist's computer and inserted vaginally. A graph displayed to show how relaxed my pelvic floor was, which was very little during my first appointment. She would do stretches and exercises with me to help me learn how to relax as well as send me home with some to do to help in between sessions.
Connective tissue manipulation involves stretching tissue to allow for more mobility and blood flow. She used this technique from my back and my stomach to my thighs. This would also help decrease my pelvic floor spasms because everything is connected. It can be difficult to do this on yourself because when you are rubbing your skin and feel pain, we tend to stop because we want the pain to stop.
Pelvic floor physical therapists may recommend that you purchase a dilator to help with stretching at home as mine did and it was helpful.
Heal Pelvic Pain: A Proven Stretching, Strengthening, and Nutrition Program for Relieving Pain, Incontinence, IBS, and Other Symptoms Without Surgery by Amy Stein, M.P.T. is a great book that my pelvic floor physical therapist recommended that I read.
Personally, I think anyone who has surgery, pelvic disease, or gives birth should be referred to a pelvic floor physical therapist because these can all be traumatic to the pelvic area.
After about six months of going to pelvic floor physical therapy, I was discharged because my spasms had decreased significantly. However, some of my abdominal pain was still there because I had endometriosis on my ovaries. This was before I had my hysterectomy. I'm so thankful for my pelvic floor physical therapist as she made me feel comfortable during each of my appointments and was able to help me decrease my pain. I still do some of the stretches at home six years later.
Talk to your doctor about referring you to a pelvic floor physical therapist if you think it would be helpful for you.
If you do go to pelvic floor physical therapy, I want you to know kind of what to expect, there is nothing wrong with you, and that you are not alone. I felt so alone because at the time, I hadn't even heard of it let alone know anyone who had went or was going.
Let me know if you have any questions!
I hope you find this information helpful.
Picture from Amazon
I think when people hear that someone has a chronic illness there's a stigma and we automatically get stereotyped. I want to share some myths that I have seen the chronic illness community have to face and fight alongside their illness.
I hope you find this information helpful.
It can be hard to decipher what's true and helpful and what is false and spam in the endometriosis medical community, especially for those who have just been diagnosed. I think it's important to know as much information as possible upfront as it's something I wish I would have known.
ANYTHING that claims to be a cure for endometriosis is spam and should be ignored. Medical professionals have some theories about the cause of endometriosis, but as of right now they DO NOT know the direct cause of the disease even though there have been some theories ruled out. How can you have a cure for a disease when you don't know what causes it? If there was a cure for endometriosis, I along with at least 176 million people worldwide who suffer with it would be SCREAMING it from the roof tops! At the end of the day, anyone claiming to have a cure for endometriosis is only trying to take your money. They do not have your best interest at heart.
There are things that may help reduce inflammation and pain, but they will not cure endometriosis. Excision surgery is our best weapon against endometriosis as endometriosis specialists use this technique to cut the diseased tissue rather than burning it. Excision surgery has the highest success rate of all other treatment forms.
I checked my filtered folder on Facebook about a week ago, which I didn't know was a thing and saw this message. This in turn prompted this blog post in hopes that it would help you to decipher what's true about endometriosis and what's spam. This message was sent almost three years before my book was published. There are so many things wrong with this message. I'm glad I didn't know about this message on the date it was sent to me because it was sent six months after my excision surgery with an endometriosis specialist. Unfortunately, I don't know who sent this message or they would be getting an ear full.
Another form of spam that I feel like needs to be addressed is AbbVie/SpeakEndo/Lupron/Orilissa. I've seen ads that say something like "click here to find out more about a new drug for endometriosis" and when you click on it, it has something to do with AbbVie/SpeakEndo/Lupron/Orilissa. Personally, I think all of the information should be presented like the name of the drug and company before someone clicks on it. But they don't do that because they want to be deceitful. They want people to click on the ad and honestly, get their hopes up. Unfortunately, drug companies do not have the best intentions for those who suffer with endometriosis. It's about how much money they can make off of us. For one, there's not enough data to support that Orilissa is a new and improved drug for endometriosis as it wasn't studied long enough to gather all of the necessary data before the FDA approved. Two, AbbVie has lawsuits against them for how they have tried to get Lupron in patients' hands so what's to stop them from continuing to do the same with Abbvie when they can continue to profit?
Things like diet, supplementation, and exercise may help decrease pain and other symptoms, but they aren't going to diminish endometriosis implants.
We spend so much money on treatments and are extremely desperate to find something that will diminish or eradicate our pain. It's awful that there are people out there preying on us to make money rather than help, but it's our reality and something we have to be on the lookout for.
Have you ever received a message similar to mine? Have you ever been told something would cure you of endometriosis? Leave a comment below and let me know your thoughts.
I hope you find this information helpful.
Have you ever heard of The Spoon Theory?
Do you know what it means?
Early on after being diagnosed with my first chronic illness endometriosis, I came across "The Spoon Theory". So many of us who suffer with chronic illness use 'spoons' to talk about how much energy it will take us to do a certain activity like take a shower, fold laundry, go to the grocery store, go to doctor appointments, and so much more. We have to plan what activities we do when because if we do too much in one day, we will be exhausted and pay for it the next day. This is something a healthy person doesn't have to think about often.
"The Spoon Theory" is an article written by Christine Miserandino that describes her story with chronic illness and an analogy she began using to try to convey her energy level and how she felt to others. You can find the Spoon Theory here: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
In the article, she gives her friend 12 spoons and immediately her healthy friend wants more spoons. Don't we all! Christine started taking away one spoon for each activity she described starting with getting out of her bed first thing in the morning. When it was time to go to work, her friend had half of her spoons left and honestly, should have probably had less because some activities require more than one spoon or energy. I know sometimes when I take a shower, I feel like I've used three spoons!
Anyway, by the time Christine's friend arrived at work, she started having to make decisions about what she was going to do while at work, for dinner, and the rest of the evening; decisions she had probably never thought twice about making before. After this, Christine knew her friend understood more because her demeanor changed. I encourage everyone, whether you have a chronic illness or know someone with one to read "The Spoon Theory" as it will help everyone understand what chronic illness sufferers go through every day. When I first came across "The Spoon Theory", I had my family read it to try to help them understand how I felt when I was tired/exhausted and why I plan as much of my day as possible. It put how I was and continue to feel in much better words than I could.
I hope you find this information helpful.
(picture from patientsrising.org)
Setting boundaries can be extremely difficult, especially when suffering with chronic illness. Having a chronic illness doesn't mean we don't want to be included in plans with our family and friends. It means that when asked to do something, we may have to turn it down because we're in so much pain or experiencing other symptoms related to our pain.
With chronic illness, you never know when symptoms are going to pop up or worsen, which isn't our fault. But, we still feel guilty if we have to cancel plans or unable to do something. It's OKAY to say NO. If you say yes to something and then feel miserable later wishing you hadn't said yes, you are hurting yourself. Nobody knows how you feel so it's important to speak up for yourself. Boundaries ARE healthy and necessary. Physically, mentally, and emotionally one person can't say yes to everything in life. We have to decide for ourselves no I don't want this in my life. An example: you get asked to go hiking, but don't feel up to or like the idea of hiking. This is a boundary, you're not going hiking. So you say something like "no I don't want to go hiking or feel up to it, but thank you so much for asking".
Some things we have to do no matter what like eat, sleep, etc. We don't have a choice in that, but we do have a choice with how we spend our time and with who. It's okay to help your friends and family. It's not okay to let them walk all over you.
One boundary that I've set is scheduling time for myself, usually watching Netflix. I usually go to my room around 9pm and if I don't go to sleep then, I'm in my room watching Netflix or listening to music by myself. I do a lot during the day to help me and my family so scheduling me time has helped me relax and decrease my stress, which is a boundary. Another boundary I've set for myself (probably because of my health) is not agreeing to plans until the day before to see how I feel. I say something like "I would love to do that! Is it okay if I let you know the day before if I feel up to it?". That way I'm not committing to something and don't have to back out of plans if I don't feel up to it. I can talk with the person the day before or the day of if there's enough time and say something like "I'm so sorry I don't feel up to it. Can we try another day?". It's also important to set boundaries for you and people who may be stressful, toxic, or draining. You only get one life and have to make yourself a priority.
Once you've set a boundary, you have to enforce it. So for my example with going to my room at 9pm, if I don't do that, I might not get time to myself that day and my suffer physically, mentally, or emotionally because of it. That only hurts me. If you say you don't want to go hiking and someone tries talking you into it, you have the choice to either stand by your boundary or cave and go hiking. Also, it's important that you don't feel guilty when you set boundaries. At the beginning you may feel guilty, but it's important to stick with it as it will get easier with time.
Three books that I highly recommend anyone read that is struggling with boundaries are pictured below: Boundaries, Beyond Boundaries, and Safe People. I have struggled with boundaries my entire life so my counselor recommended that I read Boundaries. It helped me tremendously with how to effectively set boundaries and I hope it helps you, too. After writing this post, I think I'm going to go back and reread them!
Samantha Bowick, MPH is the author of "Living with Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options" and "Living with Alpha-1 Antitrypsin Deficiency" as well as a fellow sufferer of multiple chronic illnesses and patient advocate.