Hi Mariaz,

I'm the third member of the group!  Would also love to have you join our group!

Hope the mapping biopsies go well, I've had them a couple of times now.  I was treated with the cream. Twice now but different lengths of times.  I'm happy to talk to you and share my experiences and try and asnwerany questions too.

I know it's such a rare disease and felt so amazing to connect with Eunice and Jacie and be able to talk to others.  Made such a difference.

Shars x

i was absolutely fine after my mapping.  Wasn't too uncomfortable at all :  )

The very first set I had I had 13, then they had to repeat them after I finished the cream, I think they took 9.

Then after it returned they only took a single biopsy and I began the cream again (but for much longer) and they did mapping biopsies again but just 6.

Hopefully your surgeon won't go down with COVID,  but if they were ever unable to do them I think a different member of the team would step in.  I've actaully had 3 different surgeons do mine.  Only the most recent time was it my actaul consultant who did it!

All 3 were very good.  I really didnt experience much discomfort at all immediatly afterwards at all. After themost recent set i was swimming in the sea 11 days later. Hope that helps.

X 

x

Thanks that's a great help.  Been told no swimming when using cream not very happy about that but will have to go with advice.

Yep I couldn't do much when I was using the cream was so lovely each time I stopped and I began to feel normal again.

The second time around I learnt to manage the side effects slightly better than the first time. I contacted my GP and they were much more helpful than my consultant. Would be great to find out how you managed the side effects. x

Thanks for that info,  my GPs so will probably message you but the Consultant I'm with seems good hoping will get specialist nurse help if I need it. 

Good afternoon Mariaz 

Hope all goes well with your mapping tomorrow , good luck and let us know how you get on . 
Best wishes,   Jacie.

Thank you, very unexpected the Surgeon said he had another case here this week, as I talked about this being rare !!!  
 

with COVID so bad here won't believe it's being done until in anaesthetic room !!!

Hi, at home now went well.   How do I join your group please

Hi Mariaz, glad it all went well, hope you don't have to wait too long for your results. 

It would be great for you to join our little group as we chat occasionally on Facebook and communicate via private email . Firstly I think you have to request me on this site as a friend also  Euni and Shari and then we are able to start to communicate privately. 
It's been a while since I did the same thing so can't remember exactly what i did but I'm sure Shari and Euni (when she returns)   will remember what the procedure is .  
jacie x