NHS? Long waits? Problems? Re: Cysts - Diagnosis

[wendy322]

I appreciate this forum is international but has anyone in the UK had a US Scan and/or been referred to Gynae? Did you have to wait long, did you get treatment quickly, are you still waiting etc etc
Any feedback gladly appreciated - had 2 scans now, have been referred but still no word. Many thanks.

[wendy322]

Just read a post that briefly mentions thyroid problems - is this related to cysts? i have hypothyroidism (underactive). I'm very anaemic, partially pernicious anaemia (can't absorb b12 naturally), and partially cause unknown. Of all the weird symptoms i've had like reflux, shoulder pain etc i keep finding posts about them on the forum and it would seem cysts are the cause of most, or certain 'ailments' are linked. Is this just due to Auto-immune deficiency? Anyone know?

[Bananie22]

It sort of does seem like quite a few women have thyroid issues and cysts...but is that an age thing or related?  I'm not sure.  I wonder if a study has been done.  Not all thyroid issues are auto immune right?  So many questions, not that it really matters (unless they can cure that!), just curious as well.

[raidermom]

I have been reading with much interest the suspicious "connection" between thyroid issues and ovarian cysts, and in my case I most definitely believe there is a connection.  I was diagnosed with Graves disease which causes my hyperthyroidism in June 2003 and 18 months later I developed a persistent ovarian cyst.  I asked my GP, endocrinologist, internist, and gyno if there could possibly be a connection since the thyroid and ovaries are both part of the endocrine system, and each said possibly but not conclusively. It is like someone said in an earlier post, each doctor is so specialized in his/her area of expertise, it seems like maybe the big picture is being overlooked, at least for some of us. After reading so many posts from women on here who just "happen" to have autoimmune disfunction along with ovarian cysts, I am even more convinced of the connection.  Just my humble opinion, I am definitely no specialist!

[Curls]

I remember reading someplace a while ago a list of drug most frequently perscribed in the U.S. and syndroid for thyroid was the I think second (maybe first) on the list.  So, thyroid problems in general are very common.

That aside, studies have shown a connection between autoimmune conditions, and the like, and endometrosis.  There is now belief that immune process has something to do with the development of the problem (including endometromia cysts).  (I can't find the link right now, but I posted it sometime before.)

I was part of a lobbying effort last year to get NIH to fund more cross "body area" research.  Funding in general got cut, so it didn't go that well yet, but we'll try again this year.
Cheri

[sueg]

Hi Wendy.I'm in the UK. I had an Ultrasound on the Saturday I was fast tracked then and saw a Gynae/Oncologist on the following Tuesday.My longest wait then was for a CT scan-18 days,saw the Gynae/Oncologist the next day,told I had Ovarian Cancer probably stage 3c,operated on a week later.It was all very quick and excellent I'm very happy to say.Had chemo from last April until August then the cancer recurred in the December and I'm back on chemo again now,but I feel really good at the moment.Things will move quickly if they need to,so don't worry.
Sue.

[JGMom]

I know there is a connection b/t thyroid (esp Graves), PCOS (polycystic ovaries) and diabetes.   Unfortunately, that triad often goes together.  I know a few people who don't offically have considered to have PCOS b/c they "only" instead get cysts here and there that persist, but they have the other 2 parts of the triad.  I've seen a regular endocrinologist and a neuroendocrinologist and a reproductive endocrinologist.  It just kills me that they all seperate out their parts and won't look at the relationship b/t them.  Maybe now that many centers are doing electronic charting, some Drs that are paying attention will notice constellations of symptoms/diseases going together and that may roll into better understanding in how all our systems are connected?

[wendy322]

Thanks Sue. Good to hear they didn't take their time and pleased to hear you're being well-looked after - you sound very positive which is very reassuring. I wish you well!

Did you know that thyroid problems aren't hereditary - they just run in families...!?!?! I cannot believe I was told that more than once by more than one health professional.

When pregnant with my now 15 year old, my thyroid specialist also saw all the pregnant women with thyroid, diabetes and some heart problems within the ante-natal clinic. This is the only time i can recall wide spectrum knowledge, as you've all said it seems everyone concentrates on their specialism, and we just connect the dots.

[Barney22]

Hello I'm from the UK too.  I think they push things through very quickly if they suspect cancer (as in my case eventually when things moved very rapidly - 2 weeks to surgery after an MRI).  If they don't suspect cancer you might have to keep checking and pushing a bit to get quicker responses to see a consultant.  If your ultrasound doesn't show anything you might want to ask for a CA125 if you aren't satisfied - a tumour marker blood test which although not entirely reliable for pre menopausal women, is definitely worth it just in case.  I wish I had!
good luck jenny

[finkaz]

you ladies in the uk, im worried after hearing you all had surgery pretty quickly, my mum has just been diagnosed and they say they are going to debulk with chemo first and then MAYBE operate if neccessary, everyone seems to have a hysterectomy with ovca, i hope they arent avoiding surgery due to cutbacks.

[Curls]

Hyster is the standard for ovca.  Ask why they are choosing the other order.  Is there some other risk for her with surgery?  Did they at least remove the growth or biospy it so they could diagnose it as ovca, and what type, so they could best pick the chemo drugs?

[Barney22]

UK practice on radical hysterectomies and chemo - I think we were just cases that could have surgery first.  I've met a number of people in the clinic who had chemo first, mainly to shrink the tumour so it could be removed more sucessfully, especially where the tumour(s) is large or may be stuck to other organs.  I had interval surgery - hysterectomy first, chemo for 4 cycles, then further surgery to remove the omentum which couldn't be removed safely in the first op, then the last 2 chemos.  Known as 'interval de-bulking' which I think is hilarious.  It's not to do with money in my experience.

[Barney22]

I should have added that I know a woman who has only had chemo -she has other earlier bowel and kidney problems which prevent her having surgery.  In fact she has just had oral chemo, not intravenous (kidneys wouldn't stand that).  It seems to have been OK for her so far - she was diagnosed same time as me, has had less intrusive/toxic treatment and the tumour has not continued growing.  It's not ideal in treatment terms I gather as the tumour hasn't been removed but she is OK.  I'm not suggesting at all that this is the treatment planned for your mother but sometimes other things can work.

[wendy322]

UK ladies - thanks, good to know they act swiftly once problems identified. Everyone - Thanks too, especially re:-thyroid. From literature i've read, doctors think there are many more people with thyroid complaints in UK than reported, with some potential patients not realising symptoms & reporting them, mis-diagnosis, etc, etc. Perhaps we need a screening programme with no more than a thorough blood test every 5 or 10 years, to pick up the 'lesser' problems that might contribute to the bigger ones?

Update:I see a gynaecologist in a couple of weeks - 29 days after last US scan, 24 days after GP referral, and 14 days after consultant processed my scan results and graded my case. But whose counting? Lol. Bit scared as i'm down to be seen by the Consultant and not his registrar, and was told his non-urgent cases usually have a 5 week wait but could just be they are managing their caseloads well. i guess i'll find out soon enough? Reassuring thing has been this site - i'm worried but not half as frightened as i was intially. Not just because so many people have had positive outcomes but because I don't feel i'm on my own - without offending anyone or belittleing everyone's 'problems' - it's made the fear less significant because so many women have been through it. That tiny portion of peace of mind gives me less time to worry and more time to concentrate on more important things.