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User

Posted 22 Mar 2017 at 18:48

But even with a specific topic area you are going to have the same few people responding to your questions Nomad - questions that are so specific only your surgeon can answer them. If you don't want people that have had other treatments to reply then just say on your thread 'replies from others that have had LRP only, please.' I think what you will find is that you don't get many replies because other members don't know why you are incontinent. You have already found that when you ask direct questions of other men they haven't responded - not because they don't care but because they are not the surgeon that cut your tubes. People like me and Johsan may not be what you want but we reply because we hate to see anyone getting no responses. I will desist if that is what you prefer

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 22 Mar 2017 at 19:46

Me too.
I have no wish to offend anyone or assume that I know (as a mere woman) what men going through PC, treatments and after effects, feel like
I answer if I think a new person wants a bit of a boost and sometimes I worry that a newbie will feel rejected if there is a delay in replying.

We can't control the winds - but we can adjust our sails

User

Posted 23 Mar 2017 at 00:15

I think Michael may have been misunderstood. As I read it, he is wanting a topic section for 'Incontinence', sub sectioned into treatment that gave rise to it. He does not wish to spend time reading about various treatments for other things from whosoever or have I got it wrong?

If I am correct, where would such refinement end. Many men also have ED, would it be sensible to have a section for this with subsections for men who had robotic and open, for those using pumps and various other ways? In the same way subsections could be introduced for various forms of treatment to the point it became absurd.

Of course men, their partners and family are foremost interested in their own situation and there is nothing to stop them asking any question and they only need read what interests them. However, this is a support forum where members not only seek support but give it to others. To do this, it helps if members increase their knowledge of the subject by reading about situations and treatment that affects others and not just them!

Barry

User

Posted 23 Mar 2017 at 00:23

I've found the general approach to who reads/answers posts works really well for me ... when I've wanted a specific answer I've just asked a specific question and have always had lots of replies (some more to the point than others, but all encouraging and friendly which is one of the things I like about this forum.

BUT the fact that very few of us use the tags option means that it's very hard to hunt for / find previous threads on a topic (which is what I tried to do when I first joined). There must be lots of useful stuff out there that hardly anyone can recall. Maybe if there was a drop-down menu of key tag topics that we could use when appropriate it would help?

User

Posted 23 Mar 2017 at 00:40

Good points - I have never used the tags but will look at them next time I start a thread.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 13 Oct 2021 at 20:02

Hi, I am a gay guy recovering from RP. I am thrilled that there will be sections where I can speak with other gay and bisexual guys. I find it disheartening that all the responses here are by straight men who seem to think they would be supportive of frank talk about gay sex, homophobia, etc. I don’t know a single gay guy who hasn’t experienced homophobia in the course of their prostate cancer experience. I am interested in connecting with guys in a safe place here we can discuss our specific issues, such as how to manage in a homophobic medical environment, and anal sex, both as a top and bottom, and how life after RP might make either or both possible. Thanks, and straight guys please stay out of these forums. We live in a homophobic world and need to feel safe from you, as much as your intentions are the best.
😊🙏🏽

User

Posted 13 Oct 2021 at 20:38

BostonMike, welcome to the forum. There are a number of threads already on the topics you are mentioning, including the differences and challenges for tops and bottoms post-RP. Have a look at the gay & bi section of the website. There has never been any indication of homophobia when other gay / bi / MESM men have posted, and I don't believe the couple of self-identified trans members have ever received a hurtful or inappropriate response either, unless they have received a private message from someone and not mentioned it.

https://community.prostatecanceruk.org/topics/48-Gay

I don't think though that we will ever get to a stage where straight members and female members stay completely out of the GBM section - as you will see, many of the posts there are queries about issues that affect most or many people with PCa and so if someone has advice or experience to share, they will respond to the query rather than hold back because the person asking the question has a different sexual orientation. Also, many of us have our page set to simply show all posts made since the last time we looked - we tend not to see which section it was posted under. If you want to ask a question about gay sex or experiences of homophobia / ignorance / lack of knowledge of medical professionals, you could always say at the start of your post - please only respond if you are GBMESM

Edited by member 13 Oct 2021 at 20:49 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 15 May 2023 at 13:40

BostonMike makes a very good point. Some of those who have commented here, including me perhaps, are a little presumptuous about what Gay men want from this site. As far as I have observed we haven't heard from many Gay men. If it is impossible somehow, may be a good idea to ask them what do they want?

I have been commenting on this site for many years. Apart from myself, I have never seen a single post from a black or Asian background, as far as I can tell. I think it is a cultural issue, particularly for most Indians, because PC involves a part of the anatomy which is a taboo subject in my culture. It is a matter of educating ethnic minorities. Recently I had an appointment with an Indian GP in our local practice about something not connected with PC. He suggested I should have my PSA checked (the surgery has no record of my having had PC, because the previous record was never transferred!). No other doctor has ever suggested that to me.

Edited by member 19 May 2023 at 12:55 | Reason: Not specified

'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate

User

Posted 16 May 2023 at 04:43

I note that the Profile of BostonMike shows the sole post this member contributed was on 13th October 2021. I think the opinion is likely to have been based on experience in the USA rather than what is the case in this UK based forum.

Like many here, I just look at recent conversations, so if I have commented on a post from a verboten section this was unintentional.

As regards the comment by VacuumPumps/Re-establishing Sex Life, it is not clear to me whether the statement that 'Apart from myself, I have never seen a single post from a black or Asian background, as far as I can tell......' relates to a restricted section post or to the general sections of the forum. In any event, how do you know that some of those posting were not black or Asian? There is no requirement to state your colour and most people in multicultural UK would not necessarily state it.

These special groups were set up as a trial in early 2016, so it would be interesting to learn how successful the Charity judge them to have been.

Barry

User

Posted 16 May 2023 at 09:26

There are two LGBTQ+ local prostate support groups in the UK (or possibly now three as Tackle were trying to resurrect one which didn't survive COVID shutdown). The conversations in these group are quite different from the standard support groups (which are predominantly white English, with many having no other members).

The situation with support groups for Black men is very similar.

I'm not aware of any local support groups for other ethnic minority groups. Very few will join the standard support groups, so if there are none locally, they miss out. If you take a look at a local support group and you don't see any members like you, whether that be age, ethnicity, sexual orientation, etc, then you will not feel that group is for you.

User

Posted 16 May 2023 at 09:47

In case anyone else - like me - hadn't noticed, this thread dates from 2016, so the new sections discussed were set up many years ago

Chris

Edited by member 16 May 2023 at 10:04 | Reason: Not specified

User

Posted 16 May 2023 at 23:34

Oh, that explains why I was thinking, but these sections already exist !!!

User

Posted 19 May 2023 at 13:55

I couldn't agree more - that is the point I was making in my post when one of the members was offended by it.

'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate

User

Posted 19 May 2023 at 14:07

Hi Barry

Thank you for your response. Obviously I did not express myself clearly. My reaction was to the general discussion about whether there should be special sections for 'minority' groups such as black men, gay men etc. Of course, I don’t know that men who post here are black or Asians. It was a subjective judgement on my part and it wasn’t meant to offend anyone. My intention was to point out that in our multi-cultural society there are some cultures which would benefit from being identified and made aware of PC (PCUK does this so well) so that they take early action when they experience certain symptoms. From my personal experience, I know that some of my fellow Indians are not willing to even talk about the subject when I suggest to them that they should consider having their PSA checked because they are over 50/60/70. One guy said to me, ’I don’t want anyone to stick a finger up my bottom!’ In contrast, my white friends are quite willing to talk about this issue. In the past, many times, my GPs have suggested that I should have a regular test for my blood-sugar level because I am an Indian and at greater risk of developing diabetes; I am never offended by that. I see nothing wrong in identifying groups of people by colour of their skin, culture or habits if it helps them to be aware of their health risks. I don’t think political correctness has a place in this forum when discussing health issues. However, I do apologise because you were offended by my comment.

Regards

Pratap Mehta

Edited by member 19 May 2023 at 14:08 | Reason: Not specified

'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate

User

Posted 19 May 2023 at 18:06

Hi Pratap,

I was not offended by anything you said but was just seeking clarification. I do know that we occasionally have had members join us and post from India and Pakistan as well as other countries because they show this in their Profiles. They are not necessarily Indian or Pakistani but it is sometimes evident from what they write and tell us, that their first language is not (UK) English. Then there are members of nationalities wherever they live where their written English is so much like that generally written in the UK you could not tell the original Nationality/Culture they identify with, unless they say so. Therefore, there could be more members identifying with being of other Nationalities/Cultures that have posted than you might assume.

Regardless of the foregoing, the important thing is that information/support is given to all those who seek it, regardless of Nationality/Culture, or Sexual Orientation and without discrimination. I think this is accepted and has been been followed on this forum. However, this is a UK based Charity and members experiences are almost entirely based on the way PCa is dealt with in the UK. The choice is there for members to post in one of the specialised sections or one of the general ones but should they exclude members, they will lose the benefit of replies from the majority of the most experienced members. There are some differences with the disease itself whereby some groups are more at risk, black men who are more likely to have PCa and sickle cell for instance and this has been acknowledged on more than one occasion. As regards the attitude of men and their families towards PCa, I appreciate Cultural differences exist as they do in other things. However, I must say overall, the extent and scope of posts on this forum is very wide. The question I would ask is whether the specialized sections have been successful in bringing men to the forum and answering their needs of those that become members; also whether they would have got better support by using the general topic sections instead?

Barry

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