I'm new and a little afraid

[pagodaswan]

Hello everyone

I am 53 and had the fright of my life last week, its a bit long winded so I apologise in advance, but I do not know what to do

A little background...

In 1996 I had a hysterectomy for severe endometriosis, the gynae consultant assured me that "everything was taken away" and that I would not have any more issues....I believed him, why shouldn't I?

A couple of years went past and I was still getting the familiar cramping at "that time of the month", saw the GP and was told "everything was gone, probably just a tummy bug or IBS"

Years went by, cramping, bloating, needing a wee and altered bowel movements...still told it was IBS

Moved house in 2004, went to new GP explained again what my symptoms were, he referred to me colorectal consultant who had an MRI done (first time this had happened despite ongoing symptoms)..."there is your problem....your ovaries are working overtime messing with everything!"

Ovaries....don't be silly....they were taken out in 1996...weren't they?

Referred to gynae consultant in total disbelief and yes, they were there, covered in cysts, endo tissue all over the place, bowels stuck like cement to everything

On June 4, 2010 I had my second hysterectomy (as I call it), the ovaries or at least 80% of the wreckage of them was taken out

Few months, symptom free, then I started all over again...cramping, bloating, weeing, constipation/runs....

Roll forward to July 14, 2017....needed wee, mid cycle and all the symptoms raging

Went to the loo and lost around a litre of fresh red blood and clots like cherry tomatoes.....instantly freaked out

Saw GP at 0730 next day, referral to gynae on fast track, appointment made for July 26

Today, July 18, got called by hospital, appointment change to "more suitably specialised consultant" for the following day, July 27

So I looked the new consultant up...he is lead gynae oncology consultant for the local hospital trust...the only listed gynae oncologist for the hospital

So now I am really scared

Can anyone please calm my nerves....and maybe explain why after all this time of trying to persuade the medical boffins that something is wrong, that now I am facing an uncertain and frightening future...I have no family to lean on, so all help, advice is more than welcome

Thank you....and sorry for the length of my post

[Lily-Anne]

Please don't worry. My gynae oncologist also sees non cancer patients as a specialist gynae surgeon. The only way of diagnosis is a biopsy and I'm guessing you've had one on your last surgery as it's routine. So if it was bad news you'd already know

LA xx

[pagodaswan in reply to Lily-Anne]

Its 7 years from my last surgery which was taking the ovaries out but the surgeon told me she was unable to take all out cleanly due to being stuck down so badly with everything else

So for the last 7 years the symptoms have been back each month only last week I lost a huge amount of blood and clots over and above the cramping, bloating, weeing and pain in the pelvic area.....even the external scar from the 1996 original surgery that was reused for the 2010 surgery is playing up now

I keep telling myself its OK and not to worry...but.....

[Hidden in reply to pagodaswan]

How could you not worry? At least you've now got a proper referral by the sound of it. And remember you can always ask for a second opinion - there's guidance on how to do that in the box top right, whatever she tells you.

One of the things we learn on this forum is that many of us go all around the houses before we get a clear diagnosis. And the more we learn, the stronger we are.

Hoping things turn out better for you than you fear. x

[Sassie13]

So sorry you are having these problems. 27 July seems so far away and the waiting is such an anxious time. Don't be too freaked out by the fact that you are seeing a gynae oncologist. When I had my first appointment with my gynae oncologist most of the patients in the waiting room were young pregnant women! So although it is their speciality they don't only see cancer patients. I think they tend to be more experienced in gynae surgery so more complicated cases are referred to them. That being said, you are in the best hands no matter what the ultimate diagnosis is. I won't tell you not to worry because that is impossible. Try to calm yourself with the fact that the time will pass, it always does, and you will get through each day until your appointment arrives. Don't try to look too far into the future, deal with one thing at a time when it happens. Stay strong and know you are surrounded by teal love in this group xxx

[thesilent1]

Goodness, you have had a rough time. As the others have said, by getting a gynae oncology surgeon, be assured that you are getting the best. I do hope he will have some answers for you and hopefully get this resolved for you. Ann xx

[Nicky100]

You have been through a lot and are feeling worried. This is so normal and many ladies have been there trust us! And we still go through these periods of worry stil, it is like rolling waves. My best advice is to try and find ways to relax and unwind. I found hypnotherapy (strange I know) amazingly helpful, along with Reiki and massage and meditation. These will calm your mind. Or maybe a walk in a nearby forest? Or sitting looking at a lovely view? Or stroking a pet? Fill your time with these things that raise the happiness chemicals in your body and the stress feelings will lessen.

Keep a good contact with your GP too and do not hesitate to go and have a chat with them if you are not coping with worry.

We are ALL here for you! These ladies are my inspiration and there is so much love in our unfortunate family xxx

Love Nicky xxx