March is Endo Awareness Month. So, I’d like to share a little bit about my story, as well as some useful knowledge about the disorder. This is very personal to me, but I know a lot of women need to hear my story as well as read more into Endometriosis. It’s really not a very well known diagnosis, I was one of those who didn’t know anything about it. And there are a lot more women who do have it than it’s put off to be.
What is it?:
- Chronic pain condition, where the lining of the uterus is growing on the outer side, either on the fallopian tubes, ovaries, bladder and other areas of the women’s reproduction area
- If you have Endometriosis you may also have Interstitial Cystitis
- Interstitial Cystitis is a chronic condition that adds pressure to your bladder, bladder pain and sometimes pelvic. It also burns while you urinate and you may have blood in your urine. (It’s like having an UTI when you flare up, it just doesn’t reach your kidneys)
- 176 million women are affected by Endometriosis- 1/10 women
- There is no known cure for Endo, but birth control, pain medicines and some surgeries may help
- It’s passed through genes- most likely your mother or sister will have it as well
- More commonly found in women in their 30s & 40s but can happen at any age
- Pregnancy may relieve the symptoms
- Hysterectomies may relieve symptoms as well, but may not be a definite cure. If you get your ovaries removed as well, it may increase pain relief but you will go into immediate menopause.
- Yellow ribbon is to show awareness of Endometriosis
- You’re more likely to develop it if you:
- began your period at an early age
- a close relative has it
- have heavy periods
- have periods that last more than 7 days
Some women have very few symptoms, some have many. One of the biggest signs is infertility or reproduction troubles. I’ll put an * on the symptoms I experienced.
- Lower back pain*
- Pelvic pain*
- Extreme Cramping*
- Pain during/after intercourse*
- Pain during bowel movements*
- Pain with urination*
- Excessive bleeding
- Irregular menstruation
- Chronic Fatigue
It mostly started happen around the age of sixteen (2013), I began having severe menstrual cramps. I usually took off school and stayed in bed for at least three days every month, when my menstrual cycle happened. It’s hard to describe someone else the pain, but how I’ve always said it felt was someone stabbing me directly into one of my ovaries (usually the left one) and those cramps would last at least a day to three. Sometimes ibuprofen would help, sometimes it would just dim the pain a little. I remember a couple periods being so extreme for me that I would throw up from the pain, and most times I would just cry. It is a horrible and painful way to live. The worst was when I was actually at work and I couldn’t lift or bend it hurt so much, I ended up going to the ER since we weren’t sure what was going on. That was the first day of a few tests I had to take, the biggest problem with Endo is most times it’s self-diagnosed or guessed by a doctor. You can’t 100% know for sure unless you get surgery. Anyway, I was diagnosed with severe Endometriosis, and I had a 50% chance of having Interstitial Cystitis (which they called the “evil twin”, most people with endo have this as well.) I was put on birth control to regulate my menstrual cycle, as well as taking it so I’d only have a period once every three months instead of every month. Fortunately, we learned that it does run in the family, so my mom, aunt, and sister have it too. Though it made more sense with their reproduction/menstrual cycle problems were from Endo. We did a lot of research and found a surgeon who does a special surgery. We learned that instead of lasering off the growths, he would cut them out. Which minimizes the scar tissue afterward. Also, this surgery isn’t permanent, it only lasts about 10 years, before the pain returns. But, it was long enough for me to get through school and get into a steady adult life. I had the surgery the summer after my first year at college. I am so so thankful I had this surgery. Well one, I have no more painful periods (just the normal pain most girls get). Secondly, my left ovary was actually “glued” with endo growths to the side of stomach, and I almost lost it if we’d waited longer. Also, not really good news but I learned I have Interstitial Cystitis, aka Painful Bladder Syndrome, when he was doing the surgery. Which I have a minor case of (I’m so sorry to those who have it severe!!), but it still sucks. Lastly, it was weird but before I had chronic migraines, and now I get them every so often, it’s as if I had it literally in my head as well.
I do still technically have Endo, though I don’t have the symptoms I had before. I try to spread the word as much as I can, though it can be hard to tell personal stories.
Picture after my surgery!
( Main image from menstrationresearch.org)