Life With Endometriosis

Endometriosis has had a devastating impact on my life since I started my period at eleven years old. It has put undue stress on my loved ones and those who surround me. It has put a serious financial burden on me and my husband, and even on my parents, who are kind enough to help me where/when they can. I have lost relationships with friends who don’t understand invisible illness or feeling physically unwell 24/7. I have had strain put on my marriage, by not being the fun and adventurous person I once was, but with also physical intimacy being so painful for me that it is impossible.

No help when I needed help

Throughout the years I have sought help more times than I can count. I was always told that pain with periods was normal, or that I was being dramatic. I was told to go home and take ibuprofen and Midol. I have had mostly nothing but terrible and invalidating experiences with doctors. Not being taken seriously, not being listened to, and even having doctors and nurses roll their eyes at me.
An example of this was when my appendix burst at age 15, by the time a doctor took me seriously, it had been burst for 4 days.

Feeling like I've tried everything

My health has never really turned around since then. I began to try anything and everything under the sun to help. I saw several naturopaths, a massage therapist, I did reiki, tried Chinese herbs, did yoga, saw a nutritionist, tried crazy diets for GI issues, went to specialists, had MRIs and CT scans, had ultrasounds done, begged my gynecologists for answers, tried many different birth controls, countless medications, took vitamins to change my cycles with the moon, tried Bowen, learned meditation, ect. I tried everything, and finally, the pain was so constant and so severe that it was completely ruling my life.

And then I finally found someone to help

Now I wasn’t only having debilitation periods, but the pain was every day. I approached my doctor in desperation and finally found someone who cared. Shortly after I had my first surgery with my gynecologist. He did a diagnostic laparoscopy and ablation and diagnosed me with stage 4 endo. I finally had answers, but the surgery actually made things worse. After complaining to the doctor about ongoing and even increased pain, he told me my only options were hysterectomy or Lupron. I then sought the help of a new surgeon in a bigger city nearby in hopes that this time the surgeon would be more equipped with handling my case.

My new doctor's treatment plan

We went ahead with a second surgery only 5 months after the first, this time, excision. Again, I felt no better. After constant urging, my surgeon finally ordered some scans, and we saw that indeed, it had already returned. We went ahead with a third surgery only 7 months after the second. That most recent surgery was done in March of 2021 and it was even more extensive than the first two.

Doing everything my doctor recommended

Since March I have done everything my surgeon recommended. I see two pelvic floor pts, I see a pain specialist and receive injections, I practice meditation, I see a nutritionist and am on special diets, and I do acupuncture, among other things. Unfortunately, my pain only seems to be getting worse by the day. I have all the same symptoms as before, as well as new ones. My health has declined so much now that I have more bad days than good. My PT’s can feel that things are declining. I am in so much pain that I am I have to cancel plans with friends because I can barely move around enough to do the dishes or a load of laundry. My family had to lay me off from the company because I am in too much pain to work. Some weeks I have doctor’s appointments scheduled every day, and I am very deep in medical debt.

My plans moving forward

I have done all the research possible to expand my knowledge of all things’ endo, and to try to learn how to improve my quality of life. In doing so, that is how I found the CEC. I am now scheduled to have my fourth surgery in April of this year. Hopefully, they can give me some semblance of normalcy back.