Diagnosed at 32 years old, Chenille shares her Endometriosis journey with us today, four years later. She’s had a total of seven surgeries for Endometriosis, including a hysterectomy and recurrent Endometriosis. And she has recently started seeing an immunologist. Hopefully this new course of treatment leads to long-lasting relief! Chenilles is sharing her story in the hopes that she can talk to others that have seen a similar journey of aggressive recurrent endometriosis.
I have had a long, long journey that seems like it will never come to an end. When I was first diagnosed with stage 4 endo I was experiencing very painful, heavy menstrual cycles. Within 2 years and after 2 surgeries I had a complete hysterectomy.
I thought my battle was over. Boy was I wrong.
Not only did the endo return but it came with a vengeance. I had 4 surgeries in one year to excise it from my body. My surgeon even removed as many lymph nodes from my pelvis as he could thinking it could be embedded in them. It didn’t help.
I went to see a pain management doctor at the request of a surgeon who performed one of my surgeries in Boston. I did and was also diagnosed with Small Fiber Neuropathy. I tried numerous medications, none of which worked and only made me sick. I did 1 month of lidocaine infusions which only helped my developing nerve pain and not the relentless pain in my pelvis. I am not taking any hormone replacement therapy, but I do take 5mg of Letrozole daily. I have been on it for almost seven months.
I just had my 7th surgery in November of 2019. Unfortunately the surgeon who has done most of my surgeries relocated to California so I had to fly out there because no one locally would help me.
After my last surgery I had 2 wonderful months of no pelvic pain. But just like always it started to come back and I am in the same painful boat again. I am taking medical marijuana now, however it does minimal for my pelvic pain. It does great for my increasing nerve pain. I do not want to be on a narcotic pain killer. That is my last option.
So where does that leave me? I am at a loss. I do not know where to turn.
My surgeon believes that for what ever reason my tissue lining in my pelvis and where my reproductive organs used to be is just spontaneously growing the endo. He says my case is very difficult and rare. But that leaves me still in pain and not knowing where to turn. I tried reaching out to an Oncologist but he wouldn’t see me because I don’t have cancer. I would not normally post this much personal info but I need help.
I want to know if there are other cases like me and if so what they did, or who helped them. I am willing to do radical treatments in the hopes of leading a normal life. I just can’t keep having surgery forever. I am only 36 years old. I have a wonderful husband who is beyond supportive but this has affected our relationship too. My 3 young kids don’t understand why mom never feels good. I can’t run and play with them like I want to, I hurt too bad.
I hope that by sharing this someone will help, in any capacity.
WORDS OF ADVICE:
You As hard as it is to do, stay in the fight.
If you’d like to reach out to Chenille, you can email her.
I want to send a special Thank You out to Chenille for being brave enough to share her personal story. May you find the advice and help you so desperately deserve. ❤ I’ll send ya a personal email with my thoughts.
And if YOU would like to share your story, you can do so. The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.