- Anterior Cutaneous Nerve Entrapment Syndrome (ACNES)
- Interviews
Samantha's interview
How did all start?
It started with a second C-section. My body produces a ton of scar tissue that led to adhesions and ultimately entrapped nerves.
Do you already have a diagnosis? How long did it take you to get it?
I don't yet, however I have all the symptoms to a T. It took me 4 years to find out about ACNES. After a ton of unnecessary surgeries, procedures, and appointments.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I have been to gynecologists, neurologists, a physical therapist, chiropractors, pain management drs, primary care providers, surgeons. The pain management Dr's have been the most helpful.
What has been the most useful thing for you so far?
Being off work due to the severe chronic pain. I am able to avoid movements that aggravate the pain and not stress my body and mind out to the max.
What have been your biggest difficulties?
Finding a Dr that is knowledgeable about ACNES. I have been misdiagnosed and have had organs unnecessarily taken out due to being misdiagnosed. I have 3 children to raise. Living with extreme daily pain and limited mobility has been extremely difficult. I had to quit working due to the pain. It has caused depression and anxiety.
How has your social and family environment reacted? Have your social or family relationships changed?
Socially, I have reached an all time low. I don't do anything social now. I do have friends that care and worry though. My family has had to adapt to my way of life now. They have to offer more support now and grow their patience. My husband and sons help me a lot. But I have also lost friends and my CO workers and I had a Rocky relationship before I stopped working. Honestly, my husband and I fight because I have anger outbursts and get really stressed due to pain. :(
What things have you stopped doing?
Working. I worked for 16 years and had to stop. Hiking, biking, walking, being active, photography, walking my dog, lifting things, bending down to pick things up. Basically everything I enjoy doing I had to stop because of the pain. Even sitting at church hurts too much. Cleaning my house is even too hard.
What do you think about the future?
I think my future will be a lot different than I imagined. Hopefully I will find the right Dr and find a procedure that helps the pain.
So far, which years have been the best years in your life? What have you done during them?
The years before my pain. I had three amazing beautiful boys, I was active and healthy.
What would you like to do if you didn’t have your condition?
Everything!! I'd work, and be so active! I'd love to have a life enjoying the outdoors.
If you had to describe your life in a sentence, what would it be?
Stressed anxious and painful.
Finally, what advice would you give to a person in a similar situation?
Don't give up! Be strong! Pace yourself and only do what you can. Have patience with others when they don't understand your pain. Remember your are here for a reason. Be smart about the procedures doctors want you to do. Weigh your options and do your research. Reach out to support groups for new information, support, and you never know when you can help someone else by sharing information.
