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Radiation Fibrotic Syndrome after hysterectomy for uterine cancer Radiation Fibrotic Syndrome after hysterectomy for uterine cancer

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Unread 01-13-2021, 10:23 PM
Radiation Fibrotic Syndrome after hysterectomy for uterine cancer

Join Date: Dec 2014
Posts: 14
Hysterectomy: February 24th, 2014
Surgery Type: DvH
Ovaries: Removed both
Re: Recovery Progress Reports for Hysterectomy dates Feb 24-Mar 02,2014

I would like to give an update on where I am 6+ years out from my hysterectomy for uterine cancer followed by 2100CyG of intravaginal radiation. This will be a long post but I hope it helps someone avoid the pain and issues I dealt with. I developed post treatment in this order:
1. sciatic back pain later followed by hip pain when walking and falls
2. UTI and vaginal itching
3. lymphedema
4. vaginal scarring so bad even after PT that intercourse was impossible. Use of vaginal expanders always lead to UTI like symptoms within a couple of days.

What I have found out in my journey. Most of these problems actually stem from a progressive condition called RFS (Rradiation fibrosis syndrome). My doctors did not really properly inform me of the risks of this condition prior to my radiation or tell me that the problems I experienced post radiation were due to it. The radiation can damage the blood vessels that nourish the skin, ligaments, tendons, muscles,nerves, bones. It is a continual battle and as new issues crop up I have to find solutions. some of the solutions that have worked for me are:

1. For the severe back and hip developed about two months after radiation. I got the original severe sciatic pain under control with gabapentin which is specific for nerve pain. The oxycodone and hydrocodone were completely useless for pain control and can be addictive. I weaned myself off of the gabapentin within 2 months and started yoga and other exercise. I started hiking and gradually built up to 5 miles with a 1000 to 1500 ft elevation gain during the hikes. I use poles, lymphedema support (I like knee high 20-30 psi socks with 2XU 20-30 PSI workout leggings). It is critical to keep up your exercise routines and maybe even use a trainer from time to time to make sure you get the right muscle groups. If the muscles get weak your hips will get out of alignment, your walking will change, and you will start to fall.
When I didn't keep my routine up my leg started to have tremors and my rt. foot turned out which caused falls.

2. UTI and vaginal itching. This started about 9 months after radiation. A real problem for me as I have multiple antibiotic allergies. My surgeon recommended Astroglide for the dryness. WRONG!!! WAS LIKE LIQUID FIRE INSIDE ME!!!!! From hystersisters I discovered coconut oil and KeyE vaginal suppositories. This helped at first but over time failed to help. I finally after over 5 years of looking, I found a doctor who specializes in these issues. She did a Endoscopic urethrotomy which removed scar tissue from the urethra. She diagnoses lichen sclerosus in the external genital tissues which can occur due to the lost of hormones, radiation, and perhaps some autoimmune issues. The treatment is 2X weekly estradiol tabs in the vaginal canal and .05% Clobetasol Propionate cream external 2x a day. This must be carefully monitored as prolonged use of steriod cream can also thin the tissues. I did not start the estradiol until I was over 5 years out from my uterine cancer treatment as my cancer had estrogen receptors. I now can pee with a strong stream and so far no UTI.

3. Lymphedema. This was gradual onset in the first year post surgery. My shoes started to get tight and I had to get extra wide shoes. I really can't recall when I was finally told it was lymphedema. I did a lot of research on my own and found the British and Australian information to be more useful than the US. I did get some stocking and PT from my US doctors but the best thing was a flight to AU to visit cousins about a year after my surgery. I developed cellulitis within 24 hours of my flight despite following all the lymphedema flight advice. Lucky for me the AU doctor who saw me took a complete medical history and pinpointed the problem of my blood pressure medication, Norvasc, as making my lymphedema worse.as it causes swelling of the ankles and feet. He suggested I use Inspra for blood pressure control. I got my doctor to switch me when I returned to the US, immediately lost about 10 lbs of water weight, was able to wear my normal shoe size again, and have been able to keep my lymphedema under control ever since with daily exercise, self lymphedema massage, and support hose.

4. Vaginal scarring - This has been the most difficult problem. I was given PT for the scarring and vaginal expanders following the surgery but was only able to have intercourse with my husband once following surgery. It was just to painful. I was never able to insert the largest vaginal expander. Then with the constant UTI symptoms following expander use, I used them less and less because I didn't want the UTI symptoms and antibiotic exposure. I had cystoscopy, bladder CT, you name it. Probiotics for UTI, the coconut oil , nothing helped. Then I learned about RFS and suddenly everything I had gone through made sense and it all was one issue. Dr. has told me she can treat the lichen sclerosus and the vaginal scarring (with Kenalog injections into the vaginal scars) and I will be able to have intercouse again without pain. I am just about to start this path and have great hopes for it. I have a friend who has used it and it worked for her. Think good thoughts for me and hope this helps anyone on a similar journey.
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Unread 01-18-2021, 10:03 AM
Re: Radiation Fibrotic Syndrome after hysterectomy for uterine cancer


I'm very sorry you've faced these issues, but thank you for sharing your experiences with your sisters here as I'm sure it will help others in their journeys. Wishing nothing but the best for you moving forward, dear sister!

Unread 01-19-2021, 03:20 AM
Re: Radiation Fibrotic Syndrome after hysterectomy for uterine cancer

Thanks for your post pdr.

Now I'm worried - I had a hysterectomy on Nov 30, 2020 for Stage 1 endometrial cancer and am due to have internal radiotherapy (vaginal brachytherapy) starting on January 28. My doctor did mention the possibility of fibrosis but I had no idea it could be as dreadful as your experience.

I'm saving a copy of your post so that I can refer to the treatments that you have found useful.

Thanks, again, for the helpful advice - I'm sorry that you learned it the hard way.
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Unread 01-25-2021, 12:47 AM
Re: Radiation Fibrotic Syndrome after hysterectomy for uterine cancer

Thank you for sharing. I had never heard of this.
Please keep us updated. We're for you

May God bless you with complete healing and His perfect peace
Unread 06-21-2021, 03:55 PM
Re: Radiation Fibrotic Syndrome after hysterectomy for uterine cancer

Finally, a name for it!!

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