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Anyone had anything similar? worrying times

blueskies1971
Posts: 3
Joined: Mar 2015

Hi All,

I have been worrying myself silly since my last transvaginal scan a month ago,

Just to give you a description of my history.

 May 2013  I suddenly started to bleed very heavily, losing clots and my periods were lasting anything from 10days to 20 days.

I went to my GP who put me on medication to ease the bleeding (which didn't work) while I was refererred for an abdominal and transvaginal scan.  This took until the end of June and from that scan they noted thickening of the endometrial lining and some areas of 'concern'.  I was then referred to a gynecologist - that was the  August  I was told I was going to have a hysteroscopy to see what was going on.  That happened in the September and they found a large polyp, too large to remove then so I was booked in for 2 weeks later to have it removed under GA.  When it was removed I was also fitted with a mirena coil to lessen/stop future bleeding.

The next month I kept on bleeding and eventually the mirena coil was dispelled by my body and fell out! I then had watery discharge and was told I had an infection.  After a few weeks on antibiotics I was finally feeling ok.

Unitl May 2014 my periods started to become very heavy again, but I had just moved house and put it down to stress, by December last year things had not only become worse with the bleeding but I had also started to have breakthrough bleeding and also a blood tinged discharge when I wiped myself after a wee.  I went to my new doctors surgery and after she read through my notes she referred for another scan.  That was a month ago.

So during the transvaginal scan the radiographer was reading various measurments out to her colleague who was sat next to her on the computer. She informed me that my lining was thickened again but the ovaries were normal size.  She then became queit and was concentrating on a particular area on my womb.  I asked her what she could see and she replied with that she wasnt actually sure what it was.. She then asked her colleague what she thought it was - her colleage looked at the screen and said well I don't think its a polyp but I don't know what it is.

I asked why they thought it wasnt another polyp and was told that they couldnt see any 'stalk' and that it definately wasn't a fibroid.  The radiographer read out the measurements to her colleague and I heard her say 7 by 17.. I'm guessing that was mm.

I was told to clean myself up and that they would write to my GP suggesting referrring to a Gynecologist .  I asked her again did she think it was serious and she said that they were not experts and to wait until I see the Gynecologist. She said the GP will contact me within 10 days.

2 days later a GP from my surgery called my to say they have my scan results and that I will need to see a Gynecologist but because they were not the GP that referred me I would have to wait until the end of the week until the GP that referred me was back in the surgery.

Friday am I received a call from the GP secretary asking me to go in and collect some forms.  I did so and the forms were for me to contact the hospital to get an appointment.  I did this via the online system and the earliest appointment was for a month ahead.

So update now...

So I went to see a consultant a week ago Monday and she still didn't confirm what was seen on the transvaginal scan.. She did however examine me internally and was shocked at how much I was bleeding, pressed and prodded then told me not to worry about the mess and clean up and come and join her in the other room.

This was when she looked me in the eye and said you are not a routine case I'm putting you down as urgent.

The plan she has could be in two stages she informed me.

So under GA she will perform a hysteroscopy,biopsy and  poss polypectomy - if she thinks things look questionable 'in there' she will wait until cytology comes back and most likely go for hysterectomy.

If it looks ok and just removal of whatever it was they seen, then endometrial ablasion and again wait on cytology.

When I enquired as to what time scale she wants this done by she said by the end of March.

As I already suffer from hypertension she sent me over to pre op - In pre -op my BP was through the roof, which I expected becausr I was stressed, but pre op refused to put me forward for booking of the op because my BP was too high. Then they said they would make me wait for 3 seperate weekly BP readings from my GP before they would give me the go ahead.  Cue my BP shooting up even more! I said to them my consultant has just said she wants to see me in 4 weeks max and now your delaying it? they wouldnt budge..   So knowing my BP gets a classic case of 'white coat syndrome'  I spoke to my GP on the Tue and he agreed if we do a week of BP readings to prove my BP was under control with meds he would fax pre op and tell them to go ahead.  

That was Tue just gone, Called pre-op and they said I'd been green lighted so it was in for booking.  I called the theatre booking dept and spoke to a woman who actually had my notes in front of her.. She said she was unsure what to do.. The notes specified that the consulant I had seen had requested it was her that operated on me, and that it was marked as urgent.

However.. she didnt have any 'lists' until Middle of May available!

So the clerk decided to override the request of that consultant performing the op and to prioritise me being seen within a month.  So I now have a male gynacologist performing the operation on 1st April.

Have I done the right thing pushing for a sooner operation? 

Certainly the thought of waiting until May is a nightmare.. I can't go on with having 3 periods a month! my skin is like a teenager with acne and my moods .. well I cry at the drop of hat. 

Is there anyone that has had similar symptoms, experience..  this is driving me insane.. 

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Blueskies, I am sorry to hear about your situation and can certainly understand how it is driving you insane.  My only symptom of uterine cancer was two small fresh drops of blood on my underwear.  I am post-menopausal, so I knew that this was not a good sign.  My subsequent Pap test surprisingly showed that I had adenocarcinoma-Pap tests are designed to assess for cancer of the cervix and not uterine cancer- and my gynecologist referred me right away to a gynecologic oncologist. I also had an ultrasound which didn't show any problems.    I then had a uterine biopsy which confirmed that it was uterine cancer and not cancer of the cervix.  It seems to me that a biopsy should be done to determine if you have cancer or not and perhaps a CA-125 blood test would be a good idea.  Are you seeing a gynecologic oncologist?  I recommend that you do see this specialist as gyne-oncs are the experts on below-the-belt female cancers and the surgery required.  You shouldn't be waiting so long for assessments and treatment.  From the time that I discovered the blood to when I had my hysterectomy was one month. 

I am hoping that you find out that you don't have cancer.  Please keep us informed.

Best Wishes,

Cathy  

blueskies1971
Posts: 3
Joined: Mar 2015

Hi Cathy

 

 

Thank you for you reply.

 

I am in the UK and the NHS waiting times are typical of this.. When I asked my consultant what defines 'urgent' rather than routine she said urgent means a 4 - 12 week waiting list opposed to routine of 18 weeks...

My GP was very quick in referring but thats as speedy as it gets over here unfortunately.

 

Fingers crossed its just a normal polyp or similar thats benign but the waiting and stress can't be doing any good..

 

Jaine x

nempark
Posts: 683
Joined: Apr 2010

Blueskies:  I guess you are in England.  I am in shock that they would treat your symptoms in this manner.  You were being seen almost one year.  When I was diagnosed within the two weeks I had surgery. Kaleena is right I hope you have a gyn/onc but having the operation on April 1st is still good rather than May. I am sure your gyn who will be doing the surgery is skilled, these Doctors are well trained even if he is not an oncologist he will do his job and then if need be refer you to an oncologist. So don't worry, I think you are doing the right thing. I do hope all goes well.

 Crying is good but try not to send your pressure up.  Hope you have a good support group.  Wishing you all the best.  Please let us know how you are doing.

Talk to us anytime, the friends on this board are more than happy to comfort you.

blueskies1971
Posts: 3
Joined: Mar 2015

Hi Nempark,

 

 

Thank you for your reply, yes its a long drawn out porcedure with our health service unless you go private and pay through the nose for it.

 

My long wait is typical from other forums here in the UK and often has an unhappy ending because they system to get to the experts is just so slow,

 

I'm completely fed up :( 

 

Jaine x

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Hi, Jaine x,

This entire screening process is emotionally difficult even here in the U.S. where it appears that services are provided somewhat more quickly.  Try not to get ahead of yourself and think the worse, as you may be perfectly fine following further assessment and possibly surgery.  I know that is easier said than done, but try not to dwell on the "what if's" because what will be will be and there isn't anything we can do about it.  Apparently, your medical system is like the one in Canada where everyone has healthcare but it often takes time to receive the care needed. Here in the U.S. the "haves" usually have healthcare and the have-nots often don't.  I think everyone deserves good health care whether they are rich or poor, working or unable to work.   I probably would be dying by now if I didn't have decent health insurance because the cancer treatment I received was very expensive.  I live in Florida and our state government in it's infinite stupidity did not accept the millions of dollars the federal government was willing to provide for low-income folks to receive Medicaid health insurance benefits. Of course, now, the hospitals in the state are furious about that as that's where many low income folks go to receive medical care.   I guess no healthcare system is perfect anywhere. 

ConnieSW's picture
ConnieSW
Posts: 1471
Joined: Jun 2012

I am so grateful for my insurance.  My out of pocket expenses so far (3 years into this)  have only been $60. i want everyone to get the care they need.  On the other hand, I wish we could get all the waste and graft out of the system.  Guess I want a perfect world where all humans care about and take care of each other.  Sigh.

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Hi, Connie,

I know what you mean. Wow, just  $60.00? I paid about  $3000 in out- of -pocket expenses last year alone . Thank God I can afford it otherwise what would have happened to me? Well , now, Connie I have been wondering what SW is after your name for a while now. Social Worker by any chance?  You exhibit the loving philosophy of those in social work and other similar social service professions. Just curious!

;-)  Cathy 

 

 

 

would 've

have happened to me? 

ConnieSW's picture
ConnieSW
Posts: 1471
Joined: Jun 2012

is just my a initials.  I am a retired nurse so I've had a lifetime of seeing how financially devastating it can be for those not blessed with good health or good insurance.  It's a double whammy and so unfair.  At 68 I'd like more time with my grandchildren but am prepared for whatever comes.  Again I feel so bad for the young women here.

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