Pain a year after treatment - has anyone found a specialist physio in the UK?

Former Member over 4 years ago

7 replies
70 subscribers
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Hello

This is the first time I've posted a question. It feels strange sharing such personal information when I've barely said 'hello' but this is bothering me, so here goes....

I finished radiotherapy and chemotherapy nearly a year ago and bowel movements are still extremely painful although I have 'healed'. My oncologist says this is unusual but I'm not entirely convinced it's that unusual. Does anyone know how common long term pain is or has anyone found anything that helps?

In March 2021 I watched a webinar run by the anal cancer foundation called 'Tips and Exercises to Restore Your Pelvic Health after Anal Cancer Chemoradiation'. (It is still available on their website if anyone missed it https://www.analcancerfoundation.org/2021/03/30/pelvic-pt-webinar-2021/). The speaker was a specialist physio who treats people after anal cancer treatment in the US and she strongly recommend seeing a physio after treatment. At my last Oncology appointment, I tried to discuss this but they wouldn't discuss it for some reason.

I have been referred to the pain clinic, but months later I haven't heard anything so I need to chase that up (again). There's a lot of admin involved in being ill and trying to recover!

Has anyone tried physio to treat long term pain after treatment? And if so, how did you find someone with experience in treating people following anal cancer treatment? So far I haven't found a physio in the UK who refers to treating people following anal cancer on their website. I'm not sure whether this is because there aren't any physios who specialise in this in the UK or simply because so many people are uncomfortable with the word 'anal'...

Toni8776 over 4 years ago

Hi & thanks for the link to the anal cancer foundation. How frustrating it must be for you that BMs are still painful. Long term side effects are sadly not that rare & I expect others here will tell you about their own experiences.

The physio who visited me was part of my palliative care team; she was honest about not having experience with anal cancer & came to help with general bed exercises.

I have an ongoing problem with tenesmus - see my profile for details - which blights my everyday, & the combination of having a less common & less researched cancer along with less common symptoms makes it hard to find expert help especially during the Covid crisis when all routine treatment has long delays. And I guess you’re right that “anal” isn’t everyone’s favourite word;)

Hopefully you’ll get a couple of suggestions from the fab people in this group. For now I’m contemplating the serenity prayer - I’m sure you know it but I’ll copy it here in case anyone doesn’t...

Grant me the serenity to accept the things I can’t change, the courage to change the things I can, and the wisdom to know the difference. (Reinhold Niebuhr)

It’s the wisdom bit I have a problem with xx Toni

Toni8776 over 4 years ago in reply to Toni8776

ps - have you tried the PRDA pelvic radiation disease association? Might be worth browsing their website...

https://www.prda.org.uk

Nikki65 over 4 years ago

Hi there ,

I’m sorry you’re still experiencing some pain but like you I’m not convinced it’s that unusual at all considering the nature of our treatment! I’m almost 3 years post treatment & still have to take a stool softener (laxido) each day to keep things soft enough to stay comfortable & not cause me pain, broken skin & bleeding. I do wonder why your oncologist is unwilling to discuss this! Seems odd don’t you think?

Toni8776 has given you a great link there to the PRDA, they have some really good advice etc.

I too watched the webinar you’re talking about, it made for an interesting watch. I think as far as specialists are concerned it’s a pelvic floor therapist/physio that you need to be looking for, I know someone that was referred down in London & I’m sure this was on the NHS, I’m not sure if they’re part of the gynaecology department maybe? I think being as your oncologist seems a little unhelpful I would make an appointment with your GP & discuss this with them, they may be willing to offer you a referral. If at all possible you need to be managing the issue you have not covering it up with pain medication so like you I’d be seeking another route rather than just the pain management clinic.

Good luck & keep us informed on how you get on, if you’re successful in getting a referral it’ll be good information for others that may be suffering similar long-term side effects.

Nicola

Former Member over 4 years ago in reply to Toni8776

Hi Toni

Thanks for your reply and sorry to hear about your tenesmus. I do wonder if more could be done about issues like tenesmus and ongoing pain. Surely early intervention would lead to better outcomes...

On the webinar I mentioned in my original post, they made the point that there is so much stress to the tissues in such a small area that most people would benefit from some form of rehab post treatment. I find it surprising that we are not offered physio for any pelvic issues after treatment and nutritional therapy for bowel issues etc.

I do like the serenity prayer. Don’t tend to feel that serene about this though

Thanks for the PRDA link - I’ll have a look at it.

Sarah xx

Former Member over 4 years ago in reply to Nikki65

Hi Nicola

Thanks for your reply.

I couldn’t understand why my oncologist was unwilling to discuss physio either. I normally find them helpful so perhaps they were just having a bad day. I was already in a state of anxiety about scan results so when they shut the subject down I just cried (which didn’t really help my communication skills for the rest of the appointment)!! Getting scan results is so stressful that I’m not really in the right frame of mind to ask sensible questions after that. I sometimes wish I could have a brief (possibly online) appointment for scan results and a face to face appointment a week or so later once I’ve had a chance to absorb the news (good or bad). I wonder whether others feel the same (or not).

For me I think the issue is more scar tissue than stool consistency

and one phrase that was used by the oncologist was I ‘may have healed with a pain reaction’.

I found the webinar really interesting too. In fact I just rewatched some of it this morning. Unfortunately the physio who was speaking is based in California so I really need to find someone closer to home!

Yes, I think it may be a pelvic floor physio I am looking for. It seems that people who specialise in ‘women’s health' are most likely to have experience in this area even though it affects men too. I might contact the PRDA that Toni mentioned and see if they have any suggestions. And you’re right I probably should speak to my GP too - I just imagined the oncologist would know the best type of specialist to refer to. And I agree I’d much rather improve the underlying issue than cover it up with pain medication.

I’ll let you know how I get on.

Sarah xx

Caravan1956 over 4 years ago in reply to Former Member

Hi Sarah, just scrolling through the site looking for answers re my pain 1yr + after treatment. My 1yr review scans were good but my pain is as bad as it were at the beginning. I have had pain free periods.

Seeing your posts makes me realise that I am not alone. I will look at the sites mentioned in the previous posts.

Thank you, Jeanette

Former Member over 4 years ago in reply to Caravan1956

Hi Jeanette

Sorry to hear you're also still coping with pain over a year after treatment. Yes, definitely worth watching the ACF webinar. It's the only place I've found really helpful and achievable suggestions specifically related to pain after anal cancer treatment so far. What they say about scar tissue and specialist physio makes so much sense I find it hard to believe this is not a standard intervention in the UK. But maybe I'm just not looking in the right place...

If you find anything that helps with your pain, do let me know.

Sarah xx

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