Share Your Scars: Sarah, Endometriosis
Written by: Sarah Strain
-Tell us a bit about your condition: When did it begin? What symptoms do you have?
In 2017 I started to get a persistent and mysterious ache in my abdomen. By 2018 I had chronic radiating and stabbing pelvic pain, GI issues, pain with sex, pain with bowel movements, nerve pain, bloating, fatigue, pelvic floor spasms, and the list goes on. I felt confused and scared, Especially since doctors were not sure about what was happening. One day I woke up and it felt like a knife was stabbing me in my perineum. I knew something was wrong, but the doctors I saw didn’t have any answers. I started to have days where it was very hard to get out of bed because it felt like my whole body hurt. I now know that what I was experiencing were endometriosis flare-ups.
One Gynocologist sent me to pelvic floor therapy, and my therapist was convinced that I had endometriosis. Endometriosis is an inflammatory disease where cells that are similar to the lining of one’s uterus, grow outside of the uterus. These displaced endometrium-like cells can be anywhere and cause adhesions and scar tissue to form on organs. The cells can shed and cause internal inflammation and can wreak havoc on multiple body systems. While there are no cures for endo, there are treatments. The gold star treatment for endometriosis is laparoscopic excision surgery to cut out the lesions from the body. The surgery is also the only way to get a diagnosis, which makes it hard to diagnose and treat.
Exactly a year ago I was fortunate enough to get surgery from a talented excision surgeon named Dr. Nelson in Longmont, CO. After surgery, I woke up to the news that I did in fact have endometriosis, and the surgeon found lesions on many parts of my pelvic cavity including my fallopian tubes, peritoneal wall, cul de sac and the colon. I felt so much relief to finally know what was happening to me. Since the surgery, the pain I had been experiencing every day decreased by a lot.
-How has this condition negatively impacted your life? Can you share a story where this condition was particularly difficult for you? What other emotions come along when you are having a “bad” day with your condition?
Living with chronic pain is never something that I thought I would have to deal with. It has made my good days much brighter and my hard days something that I am still working to figure out. Because of the chronic pain that I have been in for years, I now have something called central sensitization. The chronic pain has basically kept my nervous system on high alert, and now my nervous system senses pain where there is none. As I type this, I have an achey sensation in my hands and feet. To be in chronic pain means that I am always in detective mode, always trying to put out the fire or prevent one. I am trying to work on “cooling down” my system, and bring more mindfulness and stress relief to my body.
-How has your condition positively impacted your life? Has it brought you closer to a community or particular people? Has it made you grateful for your “good” days?
One of the greatest gifts to come out of this journey has been the incredible friends in my life who also have endo. I am inspired and lifted up by them constantly. These “endo warriors” have shaped how I see myself and tend to my body. They make me laugh about the weird bodily things that happen to us. We trade secrets and care rituals, jokes, and lots of love.
My good days with no pain really stand out to me now. It is very clear to me how fragile our bodies are. I am so grateful for the moments I have when my body feels vital, and when I experience pleasure.
-How do you find support both educational & within the community?
I love the website endometriosis.net for health articles and stories. Thisendolife.com is great too. There are two crucial facebook groups that gave me a ton of educational and emotional resources such as Nancy’s nook and Colorado endo girls. I met one of my best friends on Colorado Endo Girls and we got excision surgery on the same day. We have continued to support and lift each other up since the surgery and I am so glad to know her.
-How do you find relief of physical symptoms? What holistic/home remedies do you use and what Vital You products are helpful for you?
The more I read about endo, the more I understand that this acts as an inflammatory disease. Stress is a huge inflammatory factor, so I try to practice stress relief with deep breathing exercises and yoga. Certain foods can flare me up or make me feel better. I try to eat nourishing foods for my body. I drink a lot of tea, and magnesium, Getting enough fiber is really important for my body.
I use Foria’s CBD vaginal suppositories and lube for pelvic pain relief. For severe pain, I use a mixture of diazepam, baclofen, and CBD vaginally for pelvic floor tension and inflammation. I also use Vital you’s bath bombs and goddess body butter for everyday pain relief and a feeling of decadent self-love and self-soothing.
There are a few things I absolutely have on hand for flares. I use CBD internally, I have a heated blanket, and I take a soak in a bath with a Vital You Bath bomb and magnesium salt. I have had some flare days where a bath bomb totally turned my day around. My favorite bath bombs for pain are the Warrior bb, formulated especially for people with pelvic pain, and Deep, which has a cooling effect of inflammation in my body. Right before I had endo excision surgery, Jenna, the owner of Vital You made me a special version of the Zen toner with comforting flower essences. This blend continues to be my favorite way to refresh my skin and lift my mood throughout the day.
-Is there anything else you wish to share about your condition?
Living with chronic pain or illness is one of the hardest things I’ve had to deal with. I feel lucky to have the support and love of people in my life. There is so much misinformation about this condition still being taught in medical schools, and people with endo often go many years without a diagnosis. It’s an incredibly common illness, affecting 1 in 10 people who are assigned female at birth worldwide. If anything, I hope sharing my story with endo will help someone else who is searching for answers. Thank you for creating a platform to share this story <3
Anna Darata on
Hi Sarah – what a story! I felt and feel so bad for you and I pray for you to heal.
I too have excrutiating chronic pain – from my lower back specifically the last two discs are non-existent, severe stenosis, spondylolessthesis (spell?), facet joint ‘stuff’, and of course, arthritis.
I’m almost 65 and was a workout fanatic and sports-oriented all of my life which can probably be blamed for my back issues. I’ve been dealing with it for 7 years and each year I reach a new height in pain or should I say a new ‘low’. This workout queen can’t even go for a slow walk now. I’m pretty housebound. I retired 3 years ago so I don’t have work stress any more (I’m a former Director of IT for a large company). I’ve seen 7 surgeons both neurologists and ortho over the years hoping for medical technology advancements that would fix me. They all recommend surgery and make it sound like a piece of cake- disc fusion – I see too many post-surgery folks in doctors’ offices still complaining of pain and some regretting the surgery. So to me surgery is a horribly risky option – scares me to death.
I just had knee replacement surgery which has worsend my back pain due to my new gait I am being told but it’s been 3 months and I have no idea how long my back needs to get used to the new gait, if that is what is causing the extra pain. Hence I feel the chronic negative affect – frustration, anger, sadness, anxiety, irritability and self-consciousness = all difficult to control but yet I never let my friends or family see that. I live alone with my 14 yr. old cat who I love more than anything in life. She’s truly the only comfort I have.I just started using these bath bombs – Deep and Sleep – together with some CBD epsom salts. I soak for 30 to 50 min then apply 750- 1500 mg CBD creams. This all helps but not for more than about an hour…I’ll take it! I just received my recent order and am dying to try Warrior tonight. Jenna was so kind and sent me a sample of the deep salve and I am about to order some.
PT helps but most days I’m not motivated to do the exercises, chiro kills, massages kill, my muscle relaxer helps a little, and worst of all I don’t sleep more than 3 hrs a night. I’m trying to learn how to microdose my CBD pills ‘cuz I have this nasty habit of over-comsuming hoping for relief; the THC stuff makes me hallucinate but takes some of the pain away temporarily of course.
Anyway, the mental debilitation and depression over these 7 years has turned my pretty positive attitude into wondering why God keeps me alive. This is no way to live. I don’t like taking drugs and I really can’t anyway because I have chronic kidney disease so I can’t take ibuprofen etc. I will take a Tylenol PM to help me sleep an extra hour or 2 every now and then and I apologize to my kidneys and liver when I swallow that pill but it does help.
That’s it in a nut shell. I hate complaining and rarely do because it embarasses me and what good does it do?
Thank you for sharing your story. You went through so so much. I will pray for your healing.