My name is Steph. I have had Endometriosis since menses started at age fourteen. Nobody, including my mother, ever took me seriously when I was a teen. My mother thought I was faking the pain to stay home from school, even if I threw up from the pain. She thought Midol or 400mg of Advil would be enough to treat my pain, because it was always enough to treat her pain.
Though my mother had three sisters who also had severe period pain growing up, she just chalked it up to them being sissies, too. However, in 1996, a gynecologist told me that with the complaints I was presenting, he felt that I hit every symptom in the book for a disease called Endometriosis.
It was the first I’d heard of this disease. I spent the next eleven years fighting HMO insurance red tape, just to get a laparoscopy to officially diagnose me with Endometriosis.
And it wasn’t until I was 32 years old that I got my aunts, as well as my maternal grandmother, to tell me about their own battles with debilitating period pain. When I was 35 years old, I finally got approval through my partner’s (now ex) insurance for the laparoscopic surgery. Thanks to his PPO insurance, I was able to see a surgeon at UCSF Mt. Zion in San Francisco.
Diagnosis? Stage III Endometriosis. My left ovary had so many adhesions that it was wrapped around and stuck to the back of my uterus. Not all of the disease could be removed, because it’s also on my bladder. So the pain continued, but at least I had an official diagnosis.
After that first surgery in 2007, I enjoyed longer stretches of time between the pain episodes (three to four weeks at a stretch, rather than eleven to fourteen days between pain flares – and this benefit only lasted about six months), but the pain episodes themselves remained excruciating, leaving me bedridden just as before.
I remember meeting with my surgeon six months post-op and crying bitterly about the pain. She said unfortunately, surgery is not a cure. It’s a form of pain management, and I’d likely be looking at more surgery in the future to remove more lesions, because endometriosis grows back.
Despite having an official diagnosis, it didn’t stop the company I worked for in the cis-male-dominated tech industry from discriminating against me for being ill. I was fired for missing 1 – 3 days of work per month from this illness, despite notes from my doctor and surgeon, despite informing HR that this is an incurable debilitating illness, and despite phoning my manager each time I needed to be out of work. So I reported the company to the labor board.
After my surgery, I tried hormonal suppression in the form of a low-dose birth control pill called Yasmin. Within three months, I was suicidal and had to be taken off the pill. I have refused any form of hormonal treatment since that time, and went back to doing what I had done before surgery – taking vitamins, taking Chinese herbal supplements, getting acupuncture, exercising, and eating a gluten-free and yeast free diet, and seeing more specialists.
NONE OF IT HELPED. My pain levels still reached 10 on the scale, with me screaming and begging for death.
In early 2010, a doctor examining my surgical report said that for Stage III Endometriosis, there’s not a lot of the disease – the problem is that what was there at the time of surgery was widespread and therefore difficult to completely eradicate. And of course there’s the lesions that were left on the bladder reflection (the super thin wall of tissue separating the bladder from the pelvic sidewall) – the surgeon having told me in 2007 that she was afraid to ablate the lesions there for fear of puncturing my bladder.
In 2010, I had a second pelvic laparoscopy. This time, there were complications, and I came this close to having to have a blood transfusion. I had to stay in the hospital an extra day, and it took five weeks to recover. It was at this time that my mother finally understood that I’d been sick for a very long time with this illness.
My mother apologised to me, saying she never realised just how bad it was for me, and she cried when she heard what her mother had gone through with undiagnosed endometriosis. Now it all made sense to her – all of her mother’s miscarriages and a stillborn, and my mother having to quit school in 8th grade to stay home and help take care of her mother and siblings.
Some of my cousins came forward after that, too, speaking of the horrific pain they’d been in until they had surgery or had children. Some of my cousins were willing to talk about the pain that continued after having had children – which debunks the myth that having kids “cures” endometriosis.
The benefit from the second surgery was the same as with the first: I enjoyed longer stretches of time between the pain episodes (again; three to four weeks at a stretch, rather than eleven to fourteen days between pain flares), but the pain episodes themselves remained excruciating, leaving me bedridden.
In 2012, I began taking Gabapentin. I had benefit from this drug within a few cycles, and for the next YEAR, I was no longer bedridden from the pain!! I still had menstrual cycles and pain flares, but the pain rarely got above 6.5 on the pain scale during that first year on Gabapentin.
HOWEVER –
The side effects of Gabapentin were terrible. I could only take 200mg/day or else I would get tremors. A side effect of the drug can be epilepsy, the very condition the drug was created to combat! So, it’s not for everybody.
Beginning at the end of 2013, despite being on Gabapentin, the old endometriosis pain returned with a vengeance. I decided I wanted no further surgeries. I cannot handle the experience or the recovery time, especially now that I am alone on my own again (In 2012, my partner of 12 years cheated on me, left me for the other woman, and divorced me, stating, “I just can’t take care of you the way you need anymore”).
The pain remained until 2021 at the age of 49, and I’m not sure if it’s gone for good, yet. I’ve been in peri-menopause for the past ten or so years, but my menstrual cycle finally started dropping off in April 2020 and with it, the pain started becoming less.
It’s so emotionally and physically abusive to have to fight the pain and fight the workplace establishment that’s only concerned about their bottom line and not their employees, and fight the medical industry that’s only concerned with kickbacks from the dangerous pharmaceutical industry – for 34+ years straight, never to be heard.
May those of you with endometriosis remain strong and determined. People with Endometriosis need each other because we, unlike anyone else, truly understand each others’ pain and suffering.
Would you like to get in touch with me? Click here to email me, or type my email address into your Yahoo/Google/Hotmail mail account: steph [at] livingwithendometriosis [dot] org .
I also have a Facebook page, a Twitter page, and a YouTube channel.
More about me: I have a Bachelor of Arts degree in the field of Social Science from Madonna University in Livonia, Michigan. I have a minor in Education and have also studied Journalism. I hold an American Montessori Society (AMS) certification and taught in that field for nine years, and am currently a Fraud Analyst in the banking industry.
You can read an archive of my day-to-day personal story here, though I have not updated it as often as I used to, due to a series of relationship traumas over the past decade. I’m trying to get back to my Self again and play catch-up with this site and my endo blog. <3
