It Shouldn’t Be This Hard- A Mothers Voice

My daughter’s issues began early, around age 9.  At that time, she started having stomach issues and had passed out at school.  The endoscopy performed showed some irritation and inflammation in her stomach.  We were going through a very stressful time, and we just thought it was stress.  Her issues really ramped up when she was about 14.  Her periods were very severe along with her mental and emotional well-being.  Along with these issues were the added stresses of many school absences.

Being a single mom of two who received no financial assistance or emotional support, it was very difficult to navigate through this.  Thankfully, but also to my daughter’s detriment, we had Medicaid.  It helped in many ways but hindered her treatment severely because I believe she only received the minimum efforts of the doctors because of the lack of financial benefits on their part. 

Our appointments were always rushed, and we were given very little true help.  It was basically, try this pill or try that pill and when those didn’t work, we were told there was nothing more they could do.  I was often told she was just seeking attention, which really upset me.  I knew my child and I felt unheard and dismissed as her parent.

It was heartbreaking not being able to “fix” my daughter or “make it all better”.  I also missed a lot of work which added to my stress because literally every penny counted.  I had a very understanding employer which I was and am still thankful for because my own issues were worsening and coming to a head. 

I had been bleeding excessively for a few years also having horrible cramping and practically giving birth to clots.  I always had bad periods, but this was a whole new level.  I was put on birth control (even though my tubes were tied), and a few other medications for about a year.  At this time I was anemic and was still bleeding so I was given a uterine ablation.  This was very painful and only mildly helped for six months.

By this time, I was also having digestive issues, and it was decided that my gall bladder would be removed.  It had also been decided that I was going to have a partial hysterectomy.  Because of insurance reasons, I had my gall bladder removed on a Friday, and my hysterectomy was scheduled for the following Monday.  It was understood going into the hysterectomy that my doctor would make the final decision of doing a complete when she was able to get a good look at everything.  Needless to say, I was heavily entwined with endometriosis, so a complete hysterectomy was done.  That was some recovery!  I had developed a sever allergic reaction to the skin glue used on my gall bladder incision and my mind and body were in shock from the hysterectomy.

I was starting to slowly improve and ironically, my daughter’s gall bladder was removed a few months after mine.  It did not improve anything for her.  She continued to suffer, and we were back at square one with her misery.  It was torture seeing my child being tormented by her own body with no explanation.  The mental toll it took on her was horrible.  The doctors made us feel crazy and acted as though we were asking for too much.  They chalked it up to her being an overemotional teen.

As far as coping, I had A LOT of late-night crying sessions.  I had been experiencing my own health issues for a long time on my own, but I didn’t want my kids to worry so I pushed through as best as I could.  I was not at my best and had little to no patients with many things, including my kids at times.  I was at my wits end.  It was a lonely and scary time that to this day, leaves me with guilt and anger.

In going through this nightmare with my daughter, I have realized that many women in our family have been cursed with this horrible disease.  I believe we were all misdiagnosed as well.  My grandma had a hysterectomy at 26, my mom at 33.  I was 40 and my daughter was 28.

My advice is to fight and demand proper care.  You know your child, they don’t.  You know your own body, they don’t.  FIGHT!  FIGHT! FIGHT!  It is sad that is has to come to this and I have pissed off more than one ER doctor by demanding more from them and even demanding a new doctor all together. 

It has been amazing watching my daughter, Chelsea Hardesty, become the survivor and advocate she is.  I learn from her every day and admire the hard work and time she devotes to this horrible and underestimated disease.  I hope the very near future brings much needed education, government funding, and understanding about Endometriosis so all that suffer will be seen.

Written by Jennifer Cordova, Patient, Mother and Board Member of Getting the Better of Endometriosis.