Truly inspired by the optimism amid the physical and emotional pain experienced by Sara in her story below. So honored to have her write so openly about her journey with endometriosis. I hope those of you suffering from symptoms of endometriosis will find a bit of solidarity through her story.
Endometriosis was a new word introduced into my vocabulary and medical record about 6 years ago.
I started my period around the age of 13. Every month I dreaded “IT”…my period. Pain, throwing up, a lot of blood, missing school… it was miserable. But, it’s a period so it’s supposed to hurt, right? That’s what I was told. But this was a lot more than a normal period, looking back.
Once I got engaged to my hubbie, I started on the pill. Everything got a lot better with less pain, less blood, and missing less work. This was the course for 8 years.
Then we decided it was time… time to have a baby. I got off the pill and got pregnant two months later. Wonderful pregnancy, delivery, and baby. I felt amazing during my pregnancy. I breastfed my little girl until she was about 14 months and stayed off of birth control during this time. Periods were not too bad at that point because looking back on it, the endometriosis had not gotten out of control… yet.
After I was done breastfeeding for about 6 months, I started getting this awful, intense pain monthly. The first time was when I was sitting in a college class. I felt nauseous, had intense lower abdominal pain, started sweating, doubled over so much that I sat on the bathroom floor at school… didn’t care how disgusting the floors were (and they were disgusting!!!)… I was hurting so very bad I almost passed out. Curled up in the fetal position, I had to call my mom to come pick me up (I was 30 years old, but mom still came to the rescue).
As time went on, this pain continued – sometimes it would coincide with bowel movements, sometimes it would happen exactly one week after my period, or sometimes during my period. I wish I could explain exactly what this pain felt like – it’s hard to describe unless you have felt it yourself.
I went to my OB/GYN who told me it was probably an ovarian cyst and said if it is still bothering me in a month or two to come back. I went back a month later… she did an ultrasound showing “sesamoid cysts” on my ovaries (needless to say she was shocked when she saw the ultrasound) and that I needed surgery to remove.
I remember bits and pieces of my doctor talking to my mom and husband while I was phasing in and out of post surgical anesthesia… “she had endometriosis all over her ovaries instead of sesamoid cysts like originally thought. She also had endometriomas along her bowels and the inside of her pelvis. Endometriosis can’t be fully diagnosed until surgery to retrieve and clean the tissue. She is in the moderate to severe category.” That’s all I remember and that was all I needed to hear.
Ah-ha moment: This explains everything… the painful periods growing up, the monthly intense pain, the reason I got pregnant right after getting off of the pill when the endometriomas were more dried up, and now why I can’t get and stay pregnant.
We were very blessed to have conceived our daughter and we have tried since she was about a year and a half old. Multiple miscarriages. Multiple bouts of birth control. Pain. Emotional turmoil. It’s not easy and won’t be, but we feel very blessed to have a beautiful 8 and a half year old daughter. I have also been very blessed and encouraged by my multiple friends who also have endometriosis, PCOS, or other problems who have had pain or difficulty conceiving. It is wonderful to have loving support from friends who have experienced the same or similar. As women we can support each other as we strive to tackle these problems. I can truly say that I have been able to have an unspoken love between friends who understand me and I understand them.
Being a physical therapist assistant for 17 years and occupational therapist for 3 of those years, I have been able to interact with and learn from PTs (who I consider friends) who have specialized in or had a lot of experience in Women’s Health and who have a great love of helping others. They have helped me to understand the importance of core stabilization, how to strengthen my pelvic floor, and the techniques to release scar tissue or tightness within my lower abdomen or when muscles are spasming. This knowledge helps a lot – understanding what is going on inside of our bodies helps us to better help ourselves. Unfortunately, this doesn’t fix endometriosis, but I can do things to help me live my life and have less pain.
– Sara Jones
Sending lots of love to those of you who have had a similar experience to Sara’s.
2 thoughts on “Endo(my)triosis: A Personal Journey”
Thank you for this post, I found it very helpful.
I’m so glad it was helpful to you! ❤