Hi Ruth

Removing the ovaries removed was the first thing my gynae consultant wanted to do, this was to reduce my estrogen levels. He also spoke about a hormone drug that I may have to take, this reduces the estrogen levels even further, but no decision as been made about that yet.  Think when I go for my results next week they may tell me about further treatment..

As you say things can change dramatically in 7 years..

I wish you all the best for Monday and hope you get the answers that you wish for..

Take care

Dawn x

Hi Jackie

Firstly I am so sorry to hear of your news...  I totally understand how scary this is..

Having the 2 operations so close together has been a real strain.  My 2nd surgery was key hole, however they had to make an additional a 2in cut to remove the ovaries..  Been quite painful, but getting easier by the day.

I'm 45, I have a young daughter (10).  My husband and I decided not to say anything to her (she knows that I went in for an operation but nothing else).  It's been really hard trying to keep things normally at home..  My emotions are all over the place at the moment....

My consultant as advised against HRT (as this produces estrogen).  Next Thursday I am hoping to get my results of the last surgery and then to be told what, if any, treatment plan I have to follow.  I will then have scans (ultra and CAT) every 3 months - not sure how long this will continue for.

I live in the UK.  I have a fantastic oncologist, he gives you so much time and explains everything..

I really hope you appoitment comes through quickly - despite the very long journey to Houston, its good that you are going to be looked after by doctors using the latest research..

I think it is very difficult for friends and family to understand how you are feeling and to be honest whatever they say (whether its good bad or them just trying to be positive) is probably not going to be right thing to say!! ...........   We have just been told that we have this rare disease, we then have to go through a totally hysterectomy, which inturn, sends you into early menopause, my goodness, that is enough to make you stressed and I think you and I have every right to feel like this, for as long as it takes to get our head around things.

I really hope you get your appoitment sorted very quickly.

Take care of yourself..

Dawn x

The kids part is the worst. I have a 19 year old and a 14 year old. I told them after my results came back. They have taken the news well. If they were ten, that would have been another story.

Take car and best of healing to you. Keep in touch.

Hi Dawn

How are you, sorry I haven't replied before I've been caught up in things recently.  Yes I can see your replies.  This ESS is getting quite a bit of cover now isn't it?  I see we have threads all over the place and having a job to keep up with it all, so again I apologise if I am missing a reply.  I am amazed at how many of us are chatting now, considering the percentage rate of getting it.  Hope you are recovering from your op ok.

Take care

Linda x

Hello Jackie

Sorry to see you have joined in, I mean it is nice to speak to yourself, but the fact that you have ESS.  I am finding it difficult to keep up on the different threads, it's a shame they can't be combined somehow.  You have some journey to make to Houston. Will you be treated in your local hospital after your appointment there or have to keep going back there?

I  noticed (somewhere) that you and Ruth were talking about oestrogen and HRT.  I was also under the impression that we have to stay aware from it, that is why I have the progesteron tablets to combat it. It can get so confusing at times and excuse my ignorance but what are biodentical hormones?

Fortunately I am at the stage of keep taking the tablets and a yearly check up with the oncologist, which will be in July and just hope it stays that way.

I did get a bit of a shock when Ruth posted that her ESS had returned after 8 yrs, as I am just under the 10 and it was an eye opener.  I can remember back to when I first had it and understand how concerned you are, even if people think you are going on about nothing, it would be a totally different story was this to happen to them, not that I would wish it on anyone, but it never goes away, look at me, 10 yrs on and I am still talking about it.  It has been suggested to me by a couple of people that I should not be talking on this sight about it as it won't do me any good, I totallly disagree, it helps to know how others feel, although things seemed to have moved on and goes over my head.

Anway, I hope everything goes well in Houston for you

Take care

Linda x

My New ESS Friends,

There are several threads! I appreciate our commentary and the others stories. For the last three weeks I have been reading nothing but medical journals on the subject. I have worn the ears off of my friends and family, they are tired of hearing about my disease. I guess I don't blame them, so this site was really a God send.

The stories of how everyone is dealing with everything, from telling kiddos, to treatment, to dealing with medical personal. I was really surprised to see how your medical services work. Very different from here in the States. I am blessed.

I am pretty worried about the hormone issue. I want to scream, "DON'T TAKE MY ESTROGEN AWAY!" I already have a very healthy appetite and struggle staying in my weight range. I love food and love to cook. I don't need a hormone that will make me hungrier.

What other menapause symptoms have you had and how do you deal with them? I am concerned about the loss of cognitive use. I am a professor and I am in charge of a teacher preparation department. I really need my brain to work correctly! Any ideas or suggestions? And bone density, have any of you had oestioprosis because of the lack of hormones?

Thanks for all your guidance.

Jackie

Hi Jackie

I'm not feeling too bad thank you.. Got my results from the last biopsy - my ovaries were clear, which was great news. The oncologist has recommended thy I have some radiotherapy to clear the cancer blood cells, so I am waiting for an appointment to come through.. In addition to this, I have to loose weight - doctor couldn't stress this enough. The fat cells produce estrogen. So I now have to really be focused and aim to loose about 2 stone.

In terms of the menopause symptoms, suffering a bit, mainly with mood swings (although I think that is a combination of what's happened over the past few months), but also this feeling where I feel very lightheaded, feel like my speech is slurred and can't get words out (think if I was standing up I would pass out,). My friend does not think this a symptom, so I'm going to talk to my doctor.  

Have you managed to get your appointment through yet? How are you feeling? Just remind me, are the bioidenticals estrogen?

Dawn x

Hi Linda

I totally agree with you in terms of the estrogen. My consultants has told me that it has to be reduced.. I too am not allowed to take anything g with estrogen in it.

Dawn x

Hi Dawn

Just thought I would tap in  and see how things are with you these days?

Hope you are feeling a lot better and have got over the surgery.  Have you heard any more about your dizzy spells?

Anyway, hope things are okay

Take care

Linda x