Dd had her op on November 9th and we went up to the RM yesterday for the results of the biopsies that were taken and to find out exactly what was done at the op. A fairly big (no dimensions given) endometriosis cyst was removed and found to be full of old blood when opened. The biopsies showed that glial cells from the mature teratoma are still present. Basically the situation remains the same - minus the endometrial cyst. There is always a danger that a cyst can reform and we have been told that if that happens they will go ahead and do the big operation that they have always tried to avoid - hysterectomy and bowel resection, which could mean a permanent stoma. We know this would not be the end of the world, but they have hesitated to do it when she is so young (19). They are hoping that she will not get any more problems with the endometriosis and since the removal of the cyst her pain has gone. She still has some post-op pain, but the pain that was waking her up is no longer there, for which we are very grateful.
Plus ça change, plus c'est la même chose!
Honey xx
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Honey3
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Very pleased that the operation has gone well and this is now behind her..sending you all my best wishes and praying that she will no longer have problems with the endometriosis...
Thank you for the update... as I am sure we have all been concerned love x G x
Thanks for letting us know how Dd got on. It sounds good news - though we should all hope and pray the cyst will not return so a full hysterectomy and bowel section will never become necessary.
Hi Honey! Let me add my wishes and thoughts to the others. I know a young woman who had a similar experience, just before I was diagnosed. It must have been in about 2000. She had a similar op and has been well so far. I used to work with her Mum. Let's hope it's all good for your Dd.
Just echoing all the good wishes the others have sent. I've noticed there's also a Health Unlocked group for endometriosis sufferers, in case you or your daughter haven't come across it.
Sorry this response is so belated. I was in hospital for a couple of weeks and only just getting back into the swing of things.
I hope that by now DD is completely pain free - life is much rosier that way. I am v ignorant of these things but isn't there anything they can do to deter the endometriosis from coming back - presumably not. It doesn't sound as though a cyst will definitely come back and that you can realistically hope that this is the case.
I hope that you can all have something approaching a normal Christmas and that pain-free DD can let her hair down a bit and think of frivolous 19 year old things.
I could not get into the web-site yesterday to reply to you!
Thank you so much for your kind words. I hope you are recovering well? Dd is doing so well now that she is out of pain - energy levels are better, despite her ME and Fibromyalgia - and she looks better. The little crease in her forehead (from wincing in pain) has smoothed out and she is smiling much more. Such a relief. The treatment dd is on should prevent cysts from forming by slowing down the oestrogen production, but, that said, whilst taking away her natural oestrogen they are replacing it synthetically, (tibolone) so I am confused as to how that works regarding endometriosis? What I have read about tibolone says it is used to treat endometriosis - so a big puzzle as to how that cyst developed - another question we should ask next time!
I hope you are able to enjoy Christmas and that 2013 is a better year for us all.
What a lot Dd has to contend with, but being out of pain is wonderful. Asking the hows and whys about treatment takes a while but if you're putting your trust in anyone then the RM are the best.
I've been on an RM trial for over a year and although it came to a sticky end (hence the hospital stay) I know that they are my best hope. Now back on more traditional chemo. Hopeful of happy Christmas and for all you too.
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