Tissue donation for research purposes - Endometriosis UK

Endometriosis UK

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Tissue donation for research purposes

xnanookx profile image
3 Replies

Well I've been thinking about this and decided I wanted to look into it further so I found this website hta.gov.uk/faqs/donating-yo... it still didn't clear up my questions. I looked through all of my paperwork from the hospital and I definitely did not sign a consent for tissue donation and it wasn't asked before any of my surgeries so I decided it was worth contacting the hospital directly and since I didn't really know what my questions should be or who I should be talking to so I found the hospital on Facebook, they have an official page. I then took about 3 hours trying to decide what to write in a private message and I finally sent the following message;

Hi,

I'm so sorry to bother you!

I have Endometriosis and I'll be having major surgery with Mr. G B later this year.

I've got a quick question if you could advise I would very much appreciate it.

The tissue removed during the surgery is it automatically donated for research? If not my next question would be how do I arrange for my tissue to be donated to the lab for research into Endometriosis?

Any help or advice at all would be a great help.

Many thanks,

Kelly W*****.

They then replied;

Hi Kelly, we will look into this and find out for you very soon.

I feel like I'm in the cusp of a small personal victory!! Its important for us all to further research, we should all consider it and if its right for us then we should definitely try...

You're welcome to use my message as a template if you decide to contact your hospital but I will DEFINATLY update with their response ASAP xx

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xnanookx
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3 Replies
JeanOsborne profile image
JeanOsborne

Hi Kelly, when I had my lap last year some research guy actually came and asked me if I would be happy for them to have a tissue sample for research into endo. Well of course I said yes. But whether they did or not I don't know. I'd completely forgotten about it till I saw your post. 

I do remember signing a petition a couple of months ago on the other site we're on about donating tissue for research.

 Hope you well.

xnanookx profile image
xnanookx in reply to JeanOsborne

I'm good Jean, you? Well I thought with the re-sectioning, reconstruction and my ovary(ies) being removed, there would be at least a little bit they could use. It's doubtful we'll see a cure in our life time but our daughters and grand-daughters might so we HAVE to try :) xx

JeanOsborne profile image
JeanOsborne in reply to xnanookx

Exactly I totally agree. I also took part in another research study about finding an easier way of diagnosing endo and ovarian cancer. We have to do what we can. 

I've been better Hun. Bladder problems have got worse so waiting to have some tests. I'm back to see consultant on Thursday to see if there is anything he can do and to discuss hrt. The hot flushes have got so bad, I'm not sleeping and can't stop crying. I'm sure when i start hrt things will settle down. 

Take care sweetie.

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