New here - awaiting diagnosis

I had this the first time I had PMB…GP referred me, ultrasound came back with slightly thickened womb lining, GP then referred me hysteroscopy…I presumed it was on the urgent pathway still but when I hadn’t heard anything I rang the hospital who told me the wait for routine hysteroscopy was 16 weeks..I went back to GP and asked why I’d been put down as routine and they said they didn’t think it was anything to worry about but would change it to the urgent list,

Things then happened pretty quickly…hysteroscopy showed polyps so I had those removed, results all normal, so put it all behind me…

Welcome January 2023 and some more PMB, this time everything was done correctly, biopsies, hysteroscopy, more polyps found, Myosure procedure (eventually, first attempt BP too high), polyps removed, another womb biopsy taken, womb biopsy normal, one polyp contained atypical hyperplasia (precancerous cells), recommended treatment was a hysterectomy…first attempt at that and nope, sent home due to high blood sugar, Mirena coil fitted and another womb biopsy taken, biopsy normal.

Had hysterectomy on18th September, home on 19th, still recovering, have a large haematoma which is causing a few problems but seems to be getting better slowly,

Got my histology at an unscheduled appointment with consultant when I saw him about haematoma last week and results were all good,..no cancer, no hyperplasia.  Just need to fully recover and hopefully can get on with my life.

I always say keep badgering for appointments etc, sometimes you have to make a nuisance of yourself.  I have a very good relationship with my consultants lovely Secretary and she has been really helpful whenever I’ve had queries or worries.  My consultant is also fabulous!

I hope you get everything sorted and all results come back normal x

Thanks Duffersmum - I don't know whether it's exactly reassuring to hear that someone else's GP also behaved like this, but at least it makes me feel not alone!  Thing is, he also knows that I'm moving house (out of the area) in three weeks so really needed to get this diagnostic part done before I go.  I was hoping that when the hospital saw the reason for the referral they'd automatically put on the right pathway, but from your experience it sounds as if I'll have to tackle the referrals secretary again.  Not the first time she's been the culprit - a few years back she "forgot" to send an urgent brain scan referral! 

Good luck with your recovery - you must be very relieved.  I am crossing everything that I don't need a hysterectomy.  The thought of my stomach being opened up again doesn't bear thinking about!  

Thank you x keeping everything crossed you get it all sorted 

Hello Lolac

Welcome to the Online Community. I hope that you will find it as supportive and as informative as I have done. It is absolutely fine to post on here without a diagnosis and hopefully we can support you.

I feel that you should be seen on the urgent referral due to the continue bleeding and thickened womb lining. Where I live they have just piloted a self referral system for PMB and if you meet the criteria you are able to self refer for an appointment with the 2 weeks. From what you have said- you meet this criteria.

I would call the secretary/number on the hospital letter first and check why you are not on an urgent list and ask whether your appointment could be moved forward. This would probably be the quickest way as they have your details in the system. 

If they say they can not move it due to the GP referral then I would be inclined to go back to a different GP in your surgery and ask to be put onto the urgent list. If they say they are unable to do this I would be asking why. I would also be explaining that the bleeding has now happened again.

The only other thing that I thought is that the GP said that they would redo the referral to make it urgent. I wonder whether the appointment letter was for the original referral- before it was changed- as the letters can sometimes take a while to come through. 

Also if this is just a standard letter saying to call if nothing heard before Nov- then does that mean a possibility that you will be called before then. Also how long is their urgent appointment list- perhaps this is also affecting it. 

That is why I think it would be an idea to call the hospital in case there is another one on its way?

I hope this helps, but I found being persistent does help in these situations.

Good Luck- I hope you can get the appointment moved forward.

Jane

Thanks Jane that's really helpful.  Just to clarify that the letter the GP redid to make it urgent was simply for a scan - what is called a direct access scan for GPs.  According to NHS guidance that's for postmenopausal women with unusual vaginal discharge as they wouldn't  ffit the criteria for the two week pathway (I have become an expert in the guidance!).  That's why I had to wait for the scan results to go back tto him and have a further referral (again not supposed to happen). 

But you're right that the hospital may have picked this up so I think they will be my first stop tomorrow.  Thanks again for the welcome and the advice. 

Hi Lolac

    I am in a similar situation I was on sequi hrt got to 54 and my dr wanted me off it and on to conti hrt unsure why your dr still has you on it.I started conti then had an horrendous bleed so took myself off hrt bled for 7 weeks my gp told me probably a build up of lining due to the sequi hrt so that could be the cause of your thickening

Anyway my gp sent me on the 2 week pathway for a scan which showed a polyp still referred for hysteroscopy was told it would be 6 to 8 weeks even on the urgent pathway so luckily through my husband’s employer I went private but still 5 weeks from scan to hysteroscopy which found no polyp and very thin lining took a biopsy which now 2 weeks on no results as he is on holiday.The waiting is the worst part of this whole process but the ladies on here have been so helpful.

I would try your gp and the hospital to try and get this speeded up as the stress of waiting is the worst part of all of this 

Thanks Daisy - agree the waiting is awful. I'm not sure GPs realise quite the toll it can take on  people.  But I'm also kicking myself that I haven't paid enough attention to the drugs I'm on. I've been lucky not to ever have any gynaecological issues and even my perimenopause symptoms were fairly mild, but I have had lots of joint problems.  But went on continuous HRT pretty much as soon as they started when I was 54, encouraged by my then hip surgeon, largely as protection against osteoporosis.  My GP changed me to sequential hrt a couple of years later after it was found that my hrt appeared to be raising my blood pressure.  But I haven't had any regular bleeding in the "off" weeks for ages now.  And am only just discovering that it's generally more recommended to be on the continuous type after 55 - my GP has never reviewed my prescription.

anyway, will contact first the hospital then the surgery tomorrow,  Good luck with your biopsy results. 

Yes I had to chase mine to change prescription as no one ever reviews you just keep churning out prescriptions.But it may just be a build up of lining and hopefully nothing sinister.I bled for 7 weeks when I came off it my gp kept telling me it was normal to have withdrawal bleed coming off sequi hrt but I pushed for a scan as it’s scary bleeding that length of time only got referred for hysteroscopy due to a small polyp that wasn’t even there when I had the procedure.

The waiting has taken an enormous toll on me mentally they just don’t get it even now my consultant away on hols so no biopsy results til his return he just said he is fairly sure it’s all ok but that’s not a 100% so my head still all over the place.I hope you make some progress to get things moving faster

Hope you get your biopsy results soon and fingers crossed that your consultant is right.  

To update on my situation I phoned the hospital on Monday - the number on the letter which was for gynaecology appointments.  They hadn't yet got my referral on their system (it was sent the previous Weds).  Until they do they can't help - apparently it's taking 10 days for E-referrals to get through!  Beyond my comprehension!  So I emailed the person in charge of referrals at my GP surgery asking if he could resubmit as a 2 week urgent referral. Apart from confirmation that my msg was forwarded to my GP, no response yet.

So, given it's looking less and less likely I'll be seen before we move - now 2 wks, after speaking to a lovely receptionist at the surgery where we're moving I've taken the drastic step of registering there now.  I might have to start again but a two week referral to Oxford seems likely to be quicker than the current process with Frimley and my GP.

All this waiting I really feel for you.I too am no further on consultant still on holiday all this week and he has no secretary who can look at my results either.I’m trying to keep strong for my husbands sake but underneath I’m a wreck just feel like I exist at the moment and my life on hold.I hope you get an appointment soon