Pelvic Health & Orthopedic Physical Therapy
Addressing your questions about pelvic, women's, and musculoskeletal health. Health is a journey. Movement is healing!
So we are in the final countdown leading up to my second scheduled excision surgery. New town, new surgeon, new plan. I have so many emotions leading up to this procedure. My first surgery was November 2019 where I was diagnosed with stage III endometriosis impacting my right ovary, ligaments, nerves, and ureter. The surgeon indicated postoperatively she had to "fillet" my ovary to remove the endometriosis and that she could not remove all of the disease. The recovery from the first surgery was tough. I ended up in the ER twice and had to go to do a second MRI postoperatively. I had a few months of relief, but then my initial symptoms of pain came back with a vengeance. Cue the second act. I am scheduled with an endometriosis excision specialist in St Louis in the next few weeks.
I am now in this wild emotional ride of fear, hesitancy, anxiety, and hope. I hope that this is the procedure my body needs to remove all of the endometriosis tissue. I hope this is the last surgical intervention I need to start my healing journey. But even with these hopes I also feel a sense of dread and fear. I very much remember how difficult my first recovery was. It is not something I am looking forward to reliving in the next few weeks. What if they don't find anything in my surgery? What then is causing my pain? What if the surgery does not help, but worsens my pain? I have been reading a lot of success stories from other patients who had a second surgery with my physician. That helps to ease my anxiety a little bit. I've been trying to get myself physically and emotionally ready. These past few weeks I have been organizing my house, almost nesting if you will. My endo box of resources is ready. List of these items below! I have been strategically buying comfy clothes throughout the past year for my recovery. I am filling my space with items that comfort me and bring me joy. Treating myself with Trader Joe flowers, a new candle, soft blanket. Mentally, I have been talking with my counselor. I am doing preoperative and chronic pain meditations. I am filling a journal with my thoughts and feelings. After surgery I plan on going for walks, working through my Netflix list, embroidering, and reading a few books I just ordered from the library. Also starting to play with the idea of creating my own wellness and health coaching business, so stay tuned for that! If you have any other suggestions for things I should do after surgery to support my healing please let me know! I would appreciate any prayers, good vibes, or healing energy you can send my way this month. As promised my endo go box: -Heating pad for shoulders -Ice Pack -High waisted underwear (1 size bigger) -Cotton Pads -OTC stool softners and gas meds -Biofreeze -Pillow for protecting incision site in car -Abdominal binder -Toiletries Other endo items: -Pregnancy Pillow -Loose fitting dresses, sweats, shorts -Peppermint Tea -Ginger Turmeric Tea -Squatty Potty -Compression socks I've had pain since I was a teen. I have seen more women's health provider's than I can count.... in the past two years alone I saw 6 different physicians. Each one had a similar treatment planned, which failed over and over again--birth control, pain medication, heat, topical creams. As a pelvic health provider this has been incredibly frustrating. Those things patients tell you that make you cringe, I've heard them as a patient too. "Drink more wine", "maybe the tampon is too big", "periods are supposed to be painful take some naproxen", "your symptoms will only improve with birth control", "maybe you should seriously consider whether you want to have kids", "you are just too complicated, what a mess". That last one was my favorite, let's just say that was the first and last visit with that provider. So many ultrasounds, CT scans, and MRIs all normal.
You know what isn't "normal"? Constant sharp pain in your abdoment and back that keeps you from sleeping and drains your energy during the work day. Constant fatigue. Period cramps so painful that you're tied to a heating pad. Pain with feminine hygeine products. Pain with sex. Bloating which increases your pants size by two sizes. It took me 11 years and LOTS of self research to find one physician who took my symptoms seriously and affirmed that my symtpoms were not "normal". Four weeks later I was scheduled for an endometriosis excision surgery. While I have worked with patients recovering from similar procedures, I really didn't understand the depths of recovery. November 2019 I had an extensive endometriosis excision surgery where I was diagnosed with Stage 3 endometriosis on many aspects of my pelvis and abdomen. My right ovary was filleted to remove the a majority of an endometrioma. Nerves were adhered in my abdomen and had to be freed. I knew the recovery was going to be painful, but I had no idea just how long it would take. Initially as a PT I was really angered that when discharging from the hospital NO ONE spoke with me about bed transfers after having an abdominal surgery. COME ON NOW. You are weak, your nerves have been disrupted, and there is a higher chance of developing hernias if you rely on a vaslava to get up and move. A few weeks later my chest pain was still very persistent, I was having a difficult time sleeping, and shortness of breath. I was advised to immediately go to the ER to be assessed for a pulmonary embolism. It wasn't thank GOD! Six weeks later I was feeling pretty good, I passed my follow up with flying colors and advised to start pelvic PT and resume sex. So I started some gentle abdominal tissue work to address scar tissue. Not a great idea. I started to have searing, constant belly button pain. I couldn't wear pants because any contact in that area burned. I was sent again to the ER and for further diagnostic testing, nada. I suspect I flared a nerve. It was pretty angry for a few weeks. I felt so disconnected from my body. I was having a difficult time connecting with my abdomen and pelvis, it just didn't feel like it was mine. Emotionally and mentally it was difficult to recover. Not just because my body wasn't my own, but the compounded trauma from years of living with chronic pain and the toll it takes. It changes your relationship with other people as well as your relationship with yourself. It is so disheartening to see so many proclaimed experts who try to diminish the validity of your symptoms and offer solutions you have tried for years. Six months out and I am better, but still not painfree or symptom free. I still have flares of pain which limit my ability to participate in life and disrupt my sleep. But, I am constantly building my treatment team and plan. Professionally here is who I have seen in the past 6 months:
I still struggle with connecting with my body. I am just starting to feel strength in my body again, it is definitely weak. I think this will be an ongoing journey to recover and thrive. Most days I am hopeful, some days I am not. But I plan to continue to share my journey with you all. Be well!
Endowarriors is the sisterhood of women who share the symptoms and diagnosis of endometriosis. One in ten women is estimated to have endometriosis (1). Endometriosis is when the endometrial lining of the uterus begins to grow on other organs and tissue outside of the uterus. It can cause pain with periods, pain with intercourse, infertility, pain with urination and bowel movements during menstruation, GI upset, fatigue, and chronic pelvic pain (1). Oftentimes women with this diagnosis are delayed in getting treatment because it takes so long to identify what is going on. True identification involves laparoscopic surgery to identify endometrial growth . Women with endometriosis are at a higher risk for developing ovarian cancer, breast cancer, and autoimmune diseases.
The treatment available for endometriosis targets the symptoms and effects of the diagnosis, but not the cause. It slows the progression. With so many individuals with endometriosis we can do better. March is endometriosis awareness month. If you have been diagnosed with endometriosis make sure to surround yourself with a support network. There are lots of options through twitter and facebook as well as online forums if you would rather not find a local group. http://endometriosis.org/support/online-support/ https://www.facebook.com/endowarriorssupport/ https://www.facebook.com/endometriosis.support.diet.tips/ If you feel you may have symptoms consistent with endometriosis talk with your physician. It is important to be open about the symptoms you are experiencing.
References:
1. ​https://www.acog.org/ |
AuthorHello! I am Caitlyn, Doctor of Physical Therapy and Board Certified Women's Health Physical Therapist working in St Louis, Missouri. Faculty in developing residency program. Endowarrior Categories
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