Author Archives: Jessica Kelley

Susanne’s Story

It happened so quickly that most days I still get scared of the diagnosis and procedure. I have to remind myself that I went through it and am doing okay. I only say okay right now because honestly, I’m still processing.

I went to the doctor in July with horrific pain and bleeding. My hemoglobin was so low that she immediately started me on iron supplements and scheduled me for a vaginal ultrasound. While waiting for the ultrasound we learned that I cannot tolerate iron pills. I ended up having iron transfusions in the hospital. The ultrasound was on July 31st and the results came in with a diagnosis of uterine polyps and a possible fibroid.

I was referred to a new OBGYN and we did an in-office biopsy in September. The results of those 3 samples were non-cancerous and the OBGYN scheduled me for a D&C, polypectomy, and Mirena IUD insertion for October 10th. I made it through the procedure fine and was feeling great physically with the hormone therapy, but deep down I still felt like something was wrong. Weeks went by and I thought everything was good, and then I got a call on October 28th. My OBGYN stated that the D&C sample came back as grade 1 Endometrial cancer. My world stopped at that point.

My OB/GYN had already sent my referral to the obgyn/oncologist over the weekend. I called the new office and got my first appointment. I was stressed and had a miserable few days waiting for that appointment. I saw the Oncologist on November 8th and was scheduled for a total hysterectomy on November 19th. He told me that they would do lymph node mapping and take the sentinel lymph nodes to see if the cancer had spread. Family and friends tried to help during this time in limbo but I don’t know if anything or anyone could have helped.

I went in for surgery Tuesday morning and was home Wednesday night. UC Health in Colorado Springs is amazing and Dr. Pikaart is the best doctor I’ve ever met. No complications with surgery.  I had to wait 7 days for pathology results.

I had pain Wednesday night into Thursday but after Thursday, no prescription pain meds were needed. Gas pain was helped with Phazyme and walking. Soft, baggy clothes were a need! Car rides were uncomfortable (even with a pillow) so I avoided that until my post op appointment. Drinking water and prune juice helped (Dr. Pikaart scared me straight about not getting constipated!) Fast forward to the post op appointment, and the pathology came back clean. In fact there was no cancer in the uterus. The cancer was all scraped out with the D&C. No chemo or radiation!! I did have to go back for genetic testing to see about Lynch syndrome but that was negative as well. I will need checkups every 3 months for 3 years and then every 6 months for the next 2 years.

The rest of the hysterectomy recovery was a cake walk. I only bled one day after overdoing it. My stitches passed a few weeks later. I had some pain in my back probably from the hospital bed or positioning during surgery. I’m not going to sugar coat it- the cancer fear is with me every day. I’m seeing a therapist, but it lives in my brain now. Not a day goes by that I don’t think “is this the day it comes back”.

The first Oncologist checkup in March was so scary and I’m sure it’ll be that way in June also. My skin has changed, my hair, and even the way food tastes. I have hot flashes and achy restless legs. After the hysterectomy, I honestly feel like I’m living in a totally different body. I cannot do hormone therapy because of the nature of the cancer and me being overweight and already over estrogenized. I’m still losing weight and the doctor hopes that will ease some of the surgical menopause symptoms. I knew I had cancer for 29 days, and cannot imagine how people can persevere through a long drawn out cancer recovery. I’m grateful for the outcome and wish the best for other people who are still fighting that fight!

Submitted by Susanne

Sylvie’s Story

I secretly battled severe endometriosis for ten years. Year after year, it got worse and in January 2019 it peaked. I began growing ovarian cysts the size of baby’s heads that would rupture and send me to the hospital. After a laparoscopic surgery backfired and made me ten times worse, it was decided that I would undergo a total hysterectomy with bilateral salpingo-oophorectomy in November 2019. In non-scientific terms, that means the removal of the uterus, cervix, ovaries, and fallopian tubes. To prepare for surgery I did a lot of research about what the surgery entails, any side effects, recovery stories from other women, etc. Knowledge made me feel empowered and less nervous. After surgery I found out that I was the worst case the operating room nurse had seen in her thirty year career. My surgeon also told me that I never would have had children because my system was too rotted. I was 23 years old.

My recovery was okay. I had a rough time in the hospital for the first five days because my pain medication had gotten messed up. I was happy to finally be able to come home. I started spotting and having discharge exactly two weeks after surgery. It lasted around three weeks. At the six week mark I began experiencing more abdominal pain and felt large lumps along my incision line. A couple weeks later I found out that I had bad scar tissue lumps along my incision and in the surrounding area. The pressure from lumps was extremely painful, and it was another couple months before I started to truly feel better. I am now five and a half months post surgery and I am starting to feel like my old self. My energy can be low, but at least I’m pretty much pain free! If there is one thing I’ve learned it’s that everyone recovers on their own time table.

The encompassing anxiety and indescribable pain that I felt last year and years past is something that will never leave my memory. I will never forget the feeling of knowing that at any second I could rupture and my body go into shock. I’ll never forget the days and nights spent reeling with pain; rupture or no rupture. I once thought that not having biological children would make me feel like my life was over, but I was wrong. Endometriosis made me feel like my life was over. Being free of that means that my life can keep going. I’ll rejoin the work-world after having to temporarily “retire”, I’ll get married, I’ll adopt children, and I’ll have a life without constant pain. I am so thankful that I get a new chance to truly live.

If you or anyone you know suffers pain, please see your doctor. This isn’t something to put off for ten years like I did. I finally put the ME in endoMEtriosis and spoke up. I encourage you to do the same. ❤️

P.S. One recovery item that I highly recommend is a Hands-Free Portable Neck Fan. It’s a USB rechargeable mini fan that has three air flow speeds. It helped me a lot with all the hot flashes while I got accustomed to them. I found mine on Amazon.

 

Submitted by Sylvie

 

Want to share your story? Click here!