I'm new here, 19 year Uterine cancer survivor

Gina K 15 days ago

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89 subscribers
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Hi,

I had Uterine cancer in 2006, at age 48, and a full hysterectomy. After 6 weeks of recovery, I started a 5 week course of radiation. Radiation treatment was recommended by the hospital's tumour board since my mother had breast cancer at age 35, and my paternal grandmother had Uterine cancer.

I see a urologist yearly since I have microscopic blood in my urine, and am on a bladder control medicine.

My bowel issues have gotten worse over the last 5 years. In searching for help, I have had a colonoscopy, had pelvic physical therapy, seen an allergist, been tested for celiac, worked with 2 dietitians, one specializing in the Low FODMAP diet, and seen a colorectal doctor.

I started the Low Fodmap diet in 2021 and over-all it helped a lot, but lately I have had more issues with urgency, incontinence and diarrhoea.

I am so tired of it, and am planning on doing the elimination phase of the Low Fodmap diet again, to look for new triggers.

DidiOntario 15 days ago

My goddaughter had success with the FODMAP diet. She was losing too much weight with her normal diet. Now she is still very slim but no longer looks emaciated. I just finished pelvic radiation treatment and did not have many issues with diarrhea. I have been taking probiotics to protect my gut biome after reading about success for cervical cancer patients. Perhaps that could help you.

goodcards 14 days ago

Hello! I signed on because of you! I am also a uterine cancer survivor and it has been 10 years. I too was treated with radiation therapy. At first I had lactose intolerance as a result of the therapy, but that cleared up pretty much in the subsequent 2 years after radiotherapy. All that radiation really does do a number on our intestinal lining - but I think it is worth it to minimise the risk of return of the cancer anywhere else. My real intestinal problems began about 8 years after radiation. I also went through a whole barrage of diagnoses and treatments, I know the fodmap diet well which helped only a little bit, and the cramping and diarrhoea were quite disabling. Mainly I wanted to stay close to a bathroom most of the time. Have you ever heard of BAM? This is bile acid malabsorption. It works like this: bile is released in the duodenum to digest fats, but it is later reabsorbed in the ileum to go back to the liver. When this last step does not work, the bile acids move on into the colon and raise havoc there. I was given a powder to take every night called "Ipocol" and that worked pretty well on me. Right now i am on ozempic- and as a surprise it really works well for this problem. It seems that ozempic slows down the movement of the intestines enough for much of the bile acids to be reabsorbed. So this is my story and maybe it is the same with you. I wanted to relate my story to you because it is not only painful- but the solution was hard to find.

jane2511 14 days ago

Welcome to the Womb group.

I am sorry to hear that you are having Late effects from your pelvic radiotherapy after such a long time.

My radiotherapy was in 2022 and I still have issues daily. I have found diet is really important.

I found Pelvic Radiation Disease Association really helpful for resources.

Jane

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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