cramps pains / scar tissue

[Fulana]

hello;

Just wonder if somebody experienced cramps pains

I had external radiation 25 rounds and 3 internal radiation..

I had uterine cancer in 2020 and I had a total hysterectomy.

I didn’t have any problems until three months ago I experienced cramps pains ( similar to period cramps) I had a CT scan and was clear, everything look fine.

So they told me this is a scar tissue pain, it just doesn’t go away often on ..and I just get so worry.

Is anyone with this problem?

[Mariecapp]

Sorry that you are experiencing this. Yes, from what I have heard, scar tissue can cause pain. I don't have this kind of pain but maybe your Primary Care Dr can suggest something. I have terrible digestive issues. Best to you

[RoseTyler]

I get that often :/ usually as a precursor to diarrhoea attack or having to rush to the loo.

I didn't really get PRD symptoms til about 8 years after my treatment (endo-cervical adenocarcinoma in 2008-09), but now it's cramping, urgency, frequency, diarrhoea, trapped wind/bloat and fatigue.

It's rubbish. I live on Loperamide and Buscopan now and have a very limited (read: boring ) diet.

Good luck getting it sorted!

[jude-the-obscure Community Pioneer]

Hello Fulana

This all sounds very familiar! I had uterine cancer in 2010 with uterus tubes and ovaries remove in December . In 2011 I had radiotherapy om 30 days + internal radiation x2 . 3 lots of chemotherapy to follow. In 2014 I had a colonoscopy after a long period of constipation. This showed scar tissue in my sigmoid colon, just before the rectum. A diet with daily milled linseed and Fibogel x 2 daily helped a lot. But radiation damage is "the gift that keeps on giving" and problems change in time. Now I have bloating and pain , diarrhoea especially if planning to go out and occasional constipation - usually after taking Loperamide to stop my gallop! I have been advised never to allow a further colonoscopy because of the dangers of perforation of the colon.

I have attended a Special effects Clinic in Bristol just over 6 m9nths ago and found them very helpful. You need to work out your own help with support from your GP and other professionals. My dietician was good and I have seen two gastroenterologists with some success!

Best wishes

Jude

[Fulana in reply to jude-the-obscure]

hi Jude,

I have a oncologist appointment in two weeks , let see what they said.

I can eat everything, I go almost every meal but not all the time, I go usually 2 time maybe three..but not diarrhea

I can said the period pain comes , usually if I do exercises or lying on my stomach , sometimes feels like pressure in the pelvic bone..

Just want to be healthy and no worry about a recurrence.

Just want to know if this pain is normal?

How many CT scan you have after radiation?

Thank you for read me.

[Skellige Community Pioneer]

Hello there

Yes, I’ve had exactly those symptoms for 9 years. They began about a year after I had 15 sessions of pelvic radiotherapy. I can go for a few weeks, even a month without but then I’ll get an attack, severe cramps, often with a fever, and in the past with vomiting as well. At the ‘end’ of the attack there is generally a severe but short bout of diarrhoea. I don’t take any medication as I find Buscopan doesn’t help - I just go to bed with a hot water bottle, an audio book and swear a bit under the blankets. Luckily I’m retired so I can do that (go to bed, not swear!). I think I also have scar tissue from an infected drain after hysterectomy.

I’ve managed to get the ‘attacks’ to be less frequent and less extreme, and generally without the vomiting by using the FODMAP diet and avoiding a few key foods which seem to trigger things (onions and garlic are two of them). I still eat a good mixed diet, now I know greens like green beans and courgettes are fine, cabbage and cauliflower are not. It’s an odd diet, because you are minimising fermentable elements, but there’s a good app by Monash University which helps. I began my diet with St Thomas’s hospital advice and input - I think a proper medical introduction is probably best.

I’m afraid I do think stress is also a factor, which is annoying because people think you can manage that with ‘mindfulness’ whenever you need to, and can get a bit close to ‘victim blaming’ (as in “why did you let stress make you ill, you should have done some yoga”). However, I do think it is a factor, and at the least I try to be extra careful when I have extra stress. Doesn’t always work!

It’s a nasty shock to find the very treatment that helped with the cancer has created new problems, and it can take a while to find help. I find it works for me to be very open with friends and family about what I can & can’t eat, and that there will be times when I just disappear for a few days at short notice.

Do keep in touch with the PRDA and use all the resources available. You are not alone.

[jude-the-obscure Community Pioneer]

I had a CT scan to confirm I had no secondary cancers in 2014 but none after that. I hope your oncologist is helpful. Skellig's advice and observations are very helpful,, keep in touch xx

[Eee123]

Hi Fulana, I am sorry you are dealing with all these things. Yes - those pains are normal after pelvic radiation. Mine started immediately during the external radiation and the reaction has never let up (i.e. if I eat any food which my radiation injury reacts to). I had radiation in 2019. Stage 1B uterine cancer. Desperation led me to the internet and that's how I discovered FODMAP (which helped maybe for a year before the symptoms returned). When the symptoms returned, I had liquid bloody diarrhea at least 12 times a day. In my desperation, I approached a medical doctor who is a Functional Medicine Specialist and he introduced me to two additional food groups (high histamine and nightshades) and based on questioning how my gut responds to foods from those two groups, he advised that I do not eat food from those two groups and FODMAPS. That restricted my diet severely but it had the positive effect of stopping the diarrhea completely. I do not take any medication now because I do not have any gut reaction to the food I eat. Now, I live on a very limited food diet and nutrition supplements, and it has been a great relief. Best wishes for good health as you move forward.

[Fulana in reply to Eee123]

Thank u!! Webalie

I finally can said I feel 💯 better, they cramps are gone..

My doctor told me that was pelvic floor issues, send me to take physical therapy.., other wise I don’t have other issue, my stomach is fine and bowel are fine too.

[Eee123]

That's great, Fulana. I am very happy for you. Cheers!