Male pmp symptoms advice needed by newbie

Hi and welcome to the online community

It sounds like you've gone through an awful lot and it must be hard still not knowing what is wrong. I'll be keeping my fingers crossed that whatever it is it isn't cancer.

I'm neither a man nor do I have pseudomyxoma peritonei (PMP) but I noticed that you hadn't had any replies to your post yet.

You could have a look at the profiles of other members of this group to see if they are men and contact any that you find to ask about their symptoms. However, as the online community is anonymous most people probably won't put whether they're male or female as that doesn't usually affect treatment, etc.

I have found this information for you from Macmillan on the symptoms of PMP but it doesn't say if men have different symptoms to women.

Do come back and let the group know how you get on with the further tests and scans you are waiting for.

x

Hi there up North

it sounds like you are having a tough time with those symptoms and I hope you get some idea of what’s happening soon. Waiting can be challenging and patience doesn’t come easy! 
Stay strong x

1. Hi I am a man with pseudomyxoma and was diagnosed in July 2020. I had symptoms of bloatedness and a very hard belly. My belly was getting bigger even though I was losing weight. Vomiting during the night also. I'm assuming you have been having CT scans and not regular ultrasound. A CT scan is what you need for clarification but if your worried you really must speak to your nurses or GP or consultant about your concerns. I was mis diagnosed with crohns disease over the telephone before I got my worsening conditions and then needing the CT scan.

Hi there,

I am male and have been treated for pseudomyxoma.

I had my "grumbling" appendix removed in 2011 and thought that was that, fast forward to Feb 2020 when I suffered a bout of severe constipation and acid reflux. A colonoscopy and gastroscopy revealed nothing abnormal except that the shape of the stomach as viewed from the inside was not as it should be, something outside was pressing into the stomach. I had a CT scan which revealed that there were deposits of a jelly like substance throughout my abdomen. 

I was referred to Basingstoke and diagnosed with Pseudomyxoma Peritonei, and told that surgery followed by HIPEC would be necessary but that there was no rush to operate. Apparently it had been bubbling away inside me since my appendix had been grumbling 9 or 10 years ago. Covid also meant that  hospitals were cutting back on their workload. I was reviewed with a further CT scan after 6 months, there had been hardly any further increase in the amount of mucin but surgery was advised. I was operated on in June this year, spent 3 weeks in hospital and the recovery took just over 3 months by which time my appetite had returned and my energy levels were almost back to normal. Now 6 months down the line I would say that apart from what I have been told are occasional twinges from scar tissue I have now fully recovered and I feel healthier than I have for years.

The treatment and care at Basingstoke was first class, it is a long operation and initially the recovery is tough, but there was no pain and the whole team at the specialist unit there were marvellous and filled me with confidence. I will have a follow up scan next June.

Before my eventual diagnosis other than the bout of constipation and acid reflux I had no symptoms, although in retrospect I did on occasion have some episodes of abdominal discomfort and loss of appetite but they quickly passed and I did not pay much attention to them. It was a bit of a shock to me that this had been going on for 9 or 10 years and had I not had the gastroscopy it might still be undiagnosed.

It is a mysterious disease and from what I have learnt can be very difficult to diagnose, but if you have been referred to Basingstoke then you need not worry unduly, they are are world renowned centre for this rare complaint.

If you have any questions about treatment, then this forum is a good place to come for advice and information.

Good luck to you and I hope that by now, 5 months after your post, you will have been given some  answers and reassurance.