3/19/2020 0 Comments
Laura Padgett and Endometriosis
Laura Padgett is my next guest for the Chronic Illness Support Guest Blog! You can find information Laura has provided about endometriosis as well as some of her journey. We hope you find this information helpful in your journey with endometriosis and/or chronic illness.
Tell us about yourself, what illness we are talking about today (definition, symptoms, etc.) and when you were diagnosed, how, what led to diagnosis, etc.
My name is Laura Padgett. I live in Columbus, Ohio with my husband, daughter and two dogs. I have spent most of my professional career working in public policy in state government here in Ohio, and I’m also a life coach. I love supporting others in taking charge of their own lives in order to live their best life!
I was diagnosed with Endometriosis when I was 23. I had suffered from extremely painful periods and other symptoms since I was around 13, however I thought most of that was just “normal” for women to go through each month. In my early 20’s, however, my doctor discovered a strange mass on one of my ovaries, and recommended surgery. At that time, I was diagnosed with severe stage IV endometriosis. My life turned upside down! What is this crazy disease? I had so many questions swirling, and I felt pretty helpless as to how to move forward and take care of myself during this time.
Endometriosis, as I learned, is a disease that causes tissue that is similar to the endometrial lining of the uterus to grow in all sorts of places in the body. I had endometriosis on my uterus, tubes, ovaries (along with endometriomas - a kind of cyst), peritoneum - all over my pelvic region, basically. It affected my bowel and bladder functions, as well as my menstrual cycle. I had severe pain with ovulation and menstruation, that radiated down my legs and across my back. It affected my fertility, sexual function, my moods, and everything about me, really.
How long did you suffer with symptoms before you were diagnosed?
I had symptoms for nearly 10 years before I received a definitive diagnosis. I had seen a couple of doctors complaining of my pain prior to diagnosis. I felt like I was just dismissed, laughed off, and offered birth control pills to help manage things. It was rather traumatic, really, looking back on those early visits!
What treatments have you tried? Did they help? Did you have side effects? Etc.
I have tried so many different treatments, with varying success, and loads of side effects!
When I was 23 and 24, I had two ineffective surgeries, that may have actually caused more harm than good with the proliferation of scar tissue and adhesions that followed. I spent a year on Lupron, that threw my body into a state of menopause. This was a pretty miserable year - not only were the menopause side effects rough, but it also took quite a toll on my mental and emotional health. After Lupron, I embarked on a series of birth control...shots, pills, rings… with a lot of side effects as well. The worst for me was nausea and recurring, hard to treat yeast infections. I also became quite depressed after several months on the pill. While it did help some of my symptoms, especially when I took them continuously so that I didn’t have a period, I still had daily pain and pressure in my lower abdomen.
Several years later, I discovered some research on excision surgeries and read about the Center for Endometriosis Care in Atlanta. I sent in my records for review, and traveled from Ohio to Atlanta for 2 more surgeries when I was in my early 30’s. These were extensive surgeries: the first excised endo and and the second dealt with severe adhesions.
Around this time, I also discovered pelvic floor physical therapy. I had never heard of this before and had to request a referral from my doctor at the time. It was extremely helpful in managing the muscular pain in my pelvic region caused by so many years of extreme pain. When I was 38, I made the final decision to have a hysterectomy. My uterus was a mess of adenomyosis, endometriosis, fibroids, and adhesions. It looked like a lumpy pocked-marked alien creature, rather than the smooth pink tissue of a healthy uterus. Immediately upon waking up from this surgery, I noticed a significant difference! The heavy pressure and pain in my pelvis was not there! What a crazy and amazing feeling! A year later, I went back to have my ovaries removed as well, due to recurring and rupturing cysts. I’ve been on low-dose estrogen patches now for a couple of years.
I also see a therapist, do yoga, and meditate - these things have been vital to my healing process.
What are five must haves that you can’t live without that help you cope with your chronic illness (Ex. book to read, coloring book, heating pad, bath, etc.)?
I’ve coped by finding good care and support - taking charge of my health and standing up for myself has been transformative for me! I attend group therapy with some amazing women who have been my rocks over the past few years.
I pray and meditate. I’ve developed my own sort of meditation for pain, probably adapted and borrowed from some others along the way. This meditation includes noticing the pain, acknowledging the pain, and allowing the pain to be. Often pain will dissipate and my body and muscles will relax enough to provide relief. I have recently learned that hating my pain is hating a part of me, and hatred is not really the best place for me to look for healing.
I love my heating pad and my hot baths - warmth is so comforting to me! I have a million colored pencils and gel pens for my coloring books - being able to focus on coloring has been a great redirect for pain and emotional distress many times!
Do you have other illnesses? If so, would you like to mention them? What are they?
I have also had adenomyosis, severe abdominal adhesions, symptoms of interstitial cystitis (but was never really sure if I had it or not!), irritable bowel syndrome, and ovarian cysts.
What is something you wish you would have known when you were diagnosed?
I wish I would have known that nobody knows my body better than me - that I can trust myself, and that I’m allowed to say no to treatment, tests, or anything that makes me feel uncomfortable. I wish I had known that it was okay to take my time, research, and wait until I had a plan that I felt good about. I wish I had known about excision surgery much earlier in my journey and felt confident in pursuing excellent care from an endometriosis specialist, rather than just doing what my ob/gyn recommended when I was first diagnosed.
How does it affect your daily life?
A few years ago, I would have answered differently than I do today. Throughout my 20’s and 30’s, I had almost daily pain, and I was almost incapacitated by severe pain. I carried a bottle of narcotic pain pills with me at all times “just in case.” I got to a point where I only had 2-3 “good” days a month. It affected my ability to take care of myself, attend family functions, work, and do just about anything.
How are you doing now with symptoms etc.?
Now, I still have some nagging pain almost all the time, but I put away the pain pills after my oophorectomy surgery in 2017 and haven’t looked back! I have done a lot of physical therapy - and still use many of the exercises and techniques I learned there to help with my pelvic pain.
I also regularly see my therapist and chiropractor, do yoga, and meditate - and I feel pretty good in general. I’m thankful for the expert surgeons and physical therapists, as well as my mental health team!
Is there any other information you would like us to know about your illness?
Endometriosis is a total person condition - it affected me biologically, psychologically, sociologically, and spiritually in deep and challenging ways. It isn’t just “bad periods” or physical symptoms, but a whole person illness that needs whole person care and treatment.
I have felt traumatized by well-meaning medical professionals, exams, tests, and treatments. I have felt helpless and hopeless for so many years of this struggle. I also struggled with infertility and was never able to conceive. My daughter is adopted - and she’s been an amazing addition to our little family.
What piece of advice do you want to give readers?
I’ve been dealing with this disease for nearly 30 years at this point and it is only in the last few years that I’ve really started to feel like I was able to take charge of my health. This seems unacceptable in so many ways! I would love to be an advocate and support others to take charge and feel empowered in the face of this disease.
My main advice would be to trust yourself! You know your body better than anyone. Find good care and support for all aspects of your health and well-being that you feel comfortable with and confident in.
How can someone show support (awareness colors/ribbons, etc.)?
As you probably know by now, March is endometriosis awareness month. I would encourage you to find a march or a support event to attend, but I think most of those are canceled at this point! There are support events on social media - where you can wear yellow and show your support publicly.
Endometriosis affects 10% (or more) people, so chances are you have someone in your family or a friend with the disease. I’d encourage people to be open to conversation about the disease and just really listen. It can be a hard disease to talk about, because of the parts of the body that are most often affected. Things like infertility and sexual function can also be really difficult to talk about. Having an open, listening, caring friend can be so meaningful and valuable.
I’d also encourage people to try not to give advice or ask things like “have you tried…?” People mean well, and want to help...and I’m sure I have probably used this phrase myself! It can be best to remember that we’re not here to solve problems for each other, but to support and encourage and empower others.
How can readers connect with you (Ex. Instagram, Twitter, Facebook, Website, etc.)?
I’d welcome readers to connect with me on social media or through my website. You can find my contact information online at www.lprofessionalcoaching.com. I’m also on Facebook: https://www.facebook.com/LProfessionalCoaching/, and you can find me on Instagram: @LifecoachLP.
Guest Chronic Illness Blog coming soon! Guests will be asked to provide information about their illness and must haves while experiencing pain and other symptoms.
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.Write something about yourself. No need to be fancy, just an overview.