Endometriosis story


  These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.





When will the pain end?

by Courtney
(Frederick, MD, USA)

This is just a summary of my experience without the nitty gritty details:

- I started having chronic pelvic pain in early 2015. Initially, they found a cyst. But once the cyst stopped showing on my imagining examines, my pelvic pain continued. I was sent to a GI and got a colonoscopy. All my tests came back normal. I was told I may have minor IBS and to pay attention to 'trigger' foods.

I was able to manage my pain, I thought, after taking fish oil. But a few months later, a week before my period, the pelvic pain had become excruciating and worsened during my period which was the heaviest it had ever been. I knew immediately that this could not be a GI issue but a GYN issue and I made an appt with my GYN.

I was put on birth control, I was on for a month but the pain was still so bad that I contacted a surgeon after hearing about it on the radio. 4 days after my consultation, I had a laparoscopy and was diagnosed with endometriosis.

- I have continued to experience issues after surgery. Now, I have a different type of pain. It is difficult to have long periods of standing or walking without limping. I have to extend my left leg while driving to relieve pain. And after going dancing one day, the pain became chronic again.

- Living with endo has been a humbling experience. I am a person who is on the go and I never realized that when your body says no, you cannot do something it means no. I am tired all the time from dealing with pain and discomfort that it is trying to do things others take for granted - like doing laundry (I have a lot of stairs), running errands, etc.

I have given up my activities such as martial arts. After my diagnosis, my cousin reminded me how when we were young, how I always had really bad periods, and my mom thought I was exaggerating. It made me consider that maybe I had undiagnosed endometriosis since I was young and didn't have any major symptoms except bad periods.

The chronic pain and not having a clear plan for treatment has been frustrating. And because I have stage 1 endo, my doctor is not at a point of prescribing me pain medication. So I have been self-medicating using children's benedryl (5 tsp at night). Especially since getting an appt with my surgeon is difficult and requires long wait time.

I stay positive - I work in healthcare and research - so learning about endo has been exciting. But, I am admittedly experiencing a decrease in quality of life.

- I do not date because the last time I had sex, I did not enjoy it because it was uncomfortable due to my pain. I am also tired by evening time when most guys want to meet for dinner. They also have a difficult time understanding how chronic pain impacts what I can participate in (i.e. I had a date take me to an exhibit where adults could play in balls even after I told him my physical activity was limited - he got upset that I wasn't as engaged).

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