When will the pain end?
(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).