Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: LaineyWinks on May 22, 2014, 07:59:51 PM
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Sorry in advance but this is going to be a long post !
I had a smear test in April.Prior to doing it the practice nurse asked about my periods, menopausal symptoms etc, so here's what I told her.
I'm 52 and have had irregular periods for a few years now, and have been getting hot flushes on and off for about 2 years. Last year my periods where few and far between and where very short and light, as far as I can recall. However I may have had a "normal" one or two, I just didn't take that much notice, because i figured that it was just my age. In March this year I had another very short light period, but then a few weeks later I had a very heavy one it only lasted 5 or 6 days, but the flow was quite heavy. It didn't seem any different than periods I've had in the past just heavier. I got the usual spots, tender breasts and horrible disposition !
Anyhow the practice nurse said she thought this was a postmenstrual bleed and that the other lighter periods where "spotting". I told her that I'd had a blood test 4mths previously and the result said I wasn't menopausal. She said that the blood tests were unreliable and felt sure it was a PMB. I told her that I had all my regular period symptoms, but she remained convinced.
The smear test result was normal, but the screening service recommended a follow up colposcopy. I spoke to another nurse and one of the doctors who told me they had found some glandular cells in my cervix. So 7 days later I was sent to a rapid access hysteroscopy clinic instead.
I should have had a transvaginal ultrasound prior to the hysterroscopy, but the appointment went missing. So the doctor said she would go ahead and do the hysteroscopy anyway and take a biopsy. So I had the hysteroscopy (which was easier than I expected) but she didn't do the biopsy and said she wanted me to have a D&C instead, she mentioned polyps but was very vague.
By this time me and my husband were very distressed, general anaesthetics are one of my worst fears, as I've had previous bad experiences ! So I asked could I have an epidural or spinal instead, she said she would request this but couldn't guarantee it.
Getting near the end now so bear with me. Went for my pre op on Monday and my BP was sky high despite being on Atenolol. The nurse was very nice and said not to worry because a spinal had been requested, however if my BP remained so high, I would probably be sent home. Next I saw the clinician who was an @r$ehole, and rolled his eyes and tutted when the Spinal was mentioned.
So after discussing things with my OH I decided to postpone the D&C, go back to my GP, get my blood pressure sorted out and get him to support me re the spinal ( he's a great GP and is usually very supportive.)
Today I finally had the trans vaginal ultrasound and the doctor said everything looks fairly good, the endometrial lining was slightly thickened, but nothing untoward. My problem is am I postmenopausal ? If so is slight thickening a big problem ?
I'd be very grateful for any input. Thanks, LaineyWinks
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Not sure how it can be a post menopausal bleed when you are still having periods. You have to go a whole year with no bleed at all before you can be considered to be post menopausal.
It's good that they are being thorough re the glandular cells but what are the trying to achieve with a D&C. Is it just to thin the uterine lining ?.
It does thicken when you are not producing enough hormones to trigger a proper bleed.
I hope your GP supports you and you get sorted out soon.
Honeyb
x
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Hi Honeybun, thanks for the reply.
I'm from Merseyside and I don't know what it's like elsewhere in the country, but all the medical community want to do around here is stick cameras in every orifice they can or slit you up lol !
The D&C decision was made before the transvaginal ultrasound, which in itself is bad practice. I think I'll have to get Bolshy and insist on a review, I've already asked for copies of all the correspondence between the hospital and my GP.
I'm just glad it's not just me that is baffled by the whole postmenopausal thing ! :)
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Hi LaineyWinks
You sound to be in a similar situation to me. I'm 50. Still getting PMS symptoms and periods, though not as regularly. When I complained of menopausal symptoms and aches and pains my doc sent me down to a drop-in ultrasound clinic and I had a transvaginal scan. I don't think she need have bothered really as I was a few weeks after coming off a POP contraceptive and heading for a withdrawal bleed (took 11 weeks to come!) so the pains and other symptoms were related to that as far as im concerned. However like you they saw a thickened endrometrial lining and possible polyp and the next thing I knew I was being referred to a consultant for further investigation. I reckon things got confused and very scarily I waited a couple of weeks then got a letter to go in a few days to a fast track gynaecology oncology centre. When I got there they had on my notes I was post-menopausal bleeding, which I am not. The consultant was lovely, did another TVS and took a biopsy and that has come back clear and she is seeing me on Tuesday for a hysteroscopy to be prudent as she put it in her letter, so hopefully all will be okay with that. I wonder why they didn't take a biopsy when you had your hysteroscopy? I agree it would seem natural that your endometrial lining will thicken during your cycle if you are still having periods, and you would therefore not be considered post-menopausal.
I hope you are able to get some sense out of them. I too feel as though I've been un-necessarily worried by all of this. However I also know it is best to be cautious and know that nothing untoward is going on at this really tricky time of our lives. Let us know how things go. I'm trying to keep busy until my hysteroscopy on Tues as am v nervous about it :-\ x
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Thanks for your reply Positive thoughts, I'm going to my GP next week and going to ask for everything to be reviewed.
Re the hyteroscopy, I was worried before having it but it was surprisingly easy, in fact I'd be more than happy to have another.
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You certainly dont sound post menopausal at all and a thickened lining or bulky uterus is very common esp if you have previously had children, so I wouldnt stress to much, pity about your Dr with the bad attitude, try not to worrry and all the best.
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Hi Cassie, thanks for the reply. As well as going back to my GP, I've requested copies of all the letters sent between the hospital and the GP's so I can find out what has been found or not, because up to now all I've had is vague answers.
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Hi Laineywinks
I've been away and not caught up with posts but just to add re what the others have said. You are not postmenopausal at all!!!
Why is a practice nurse deciding this and sending you for worrying investigations? You should be seen by a doctor about this sort of thing. She is right that the blood tests are not reliable but you are only 52 - the average age of menopause. If you have been having irregular periods then it is likely that you are heading towards menopause but just not there yet.
As the others have said - you will expect a thickened lining because it changes by a considerable amount during the cycle. Also if you are peri-menopausal, it can become thicker than usual, when you don't ovulate (which happens as the ovaries begin to pack up) - then when you do bleed it is often heavier - but nothing to worry about.
There is an excellent article about peri-menopause here:
http://www.menopausematters.co.uk/article-perils-of-the-perimenopause.php
I agree with you. Go back to your doctor and start again. Maybe have another blood test just to see what the reading is this time. The hysteroscopy looks in details at the surface of the uterus. I can't remember if it measures the thickness as well? If so then you don't need a TVS anyway. If not - then maybe agree to have one - but as long as the thickness is within normal limits (for peri women) - again nothing to worry about.
The polyps are a different issue. Have they found polyps on the womb surface? You should be able to discuss treatment for these before even having to think about the type of anaesthetic. Perhaps the D & C is to remove them if you have several. When I had a hysteroscopy last year (no anaesthetic) I signed a form to say if they found any polpys they would remove them - but D & C was not mentioned. I would really query this and get a full explanation before going any further!
Good idea re the letters - mine were read out to me or follow up letters sent. You have a right to know all of this - and especially if they are starting under the wrong premise - that you are post-menopausal.
On the positive side - if you were experiencing post-meno bleeding - it is good to be investigated and treated, but you deserve, as we all do, to be treated as an intelligent woman and able to make decisions based on the best possible information.
Good luck and keep us posted!
Hurdity x
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Hi, just thought I'd update you all. I spoke to my GP last week re everything that's been going on and he suggested that I made an appointment with a registrar who's doing a short stint at our surgery, she's worked extensively in oncology/gynae at Arrowe Park hospital on the Wirral.
So I saw her this afternoon and she was fantastic. Firstly she agreed that I wasn't postmenopausal and she also agreed that the decision to do a D&C was made far too quickly, in fact she was appalled at the way everything had been handled from start too finish.
It turns out the glandular cells on my smear test weren't even abnormal/atypical but had been flagged up because they were under the impression that I'd had postmenopausal bleeding !!!
The doctor who did my hysteroscopy has reported that she saw areas of thickening on my endometrium that she thought could be suspicious, but she doesn't say why and also doesn't say why she didn't take the biopsy there and then as had been discussed.Really the hysteroscopy should never have been peformed before the transvaginal ultrasound and a biopsy should be taken rather than jumping to surgery !
So the lady I saw today has booked me an appointment with a general gynaecologist and has asked him to review everything, she has also told him that I've been very stressed by this ordeal and that today my BP was 190/110, which is pretty bad and she has told him that I really don't want surgery unless absolutely necessary.
One last thing that shocked both her and me, she decided to update my info and remove the postmenopausal bleeding statement, as that seems to have set everything off, whilst she was looking she found someone had also put "Suspected cervical cancer" on my file ! So off that went ! Cervical cancer has never been an issue, it's my endometrium they've been bothered about !
It just show's how things can escalate by someone jumping to conclusions !
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Just a quick update, got the results of my biopsy today and it wasn't what I wanted to hear. I either have very early stage cancer or the worst stage cell changes. Either way it's a hysterectomy for me. I'll be seeing the surgeon shortly, but I'm adamant that I want epidural/spinal anaesthesia and will pay private if I have to.
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Hi Laineywinks
So sorry to hear about this news - hopefully it is just the cell changes - which is the one that can lead to cancer I understand but which is successfully treated at this stage.
It does go to show how difficult it is to work out what's going on without a proper investigation and that when doctors err on the side of caution - even in a situation like yours when you did not think that you were post-menopausal. It is often worrying but rightly so because it means problems and cell changes can be picked up at an early stage.
Do hope it all goes OK and I imagine the op will take place fairly soon. Wishing you all the best.
Hurdity :hug:
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Sorry to read your news. They really been on the ball with this and that means you will be treated very quickly.
All the best from me too.
Honeyb
x
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Sorry to hear your news.
The main thing is it will be sorted out and treated quickly.
Hope everything goes well.
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Thanks for all the kind words :)
Gotta admit when she mentioned possible early stage cancer I was gobsmacked ! I was expecting some kind of bad news cos my endometrium was slightly thickened, 8mm, but nothing too excessive. It's hard to believe what can be going on inside of you when you have hardly any symptoms.
Anyhow I've got an awful lot of stuff to organise because I care for my severely disabled dad and I have to get my self together and decide where I want it done and whether to blow a load of savings going private. At the moment I'm seriously thinking about trying to be treated in the Liverpool Women's Hospital, as they specialise in gynae and obstetrics and it's only 12 miles away. So if any of you ladies have any experience of the place, I'd love to hear from you.
So thanks once again and I'll keep you updated.
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Sorry to hear your news but glad its been caught early, let us know how you get on with the anaesthetic, i also have a fear of generals and ended up having fairly big abdominal surgery under epidural, I figured, that if they can remove a baby then they can do a lot else and it was fine, although I also had a pre med so dont remember much of the surgery at all which is probably a good thing but I did not have that horrible post op drama that so often goes with GA's... stand your guns, you prob will get a lot of eye rolling but its your body and you are entitled to ask for what works best for you...
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Hi Cassie, thanks for your encouraging post. Can I ask how you got the surgeon and anaesthetist to agree to the epidural ?
Also at the risk of sounding nosey whereabouts are you located ? I only ask this because I know it's more common practice in the America ( lucky things !) :)
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I went privately.. :)
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I went privately.. :)
Thanks, for the reply, I'm considering going privately too,but I've not even seen a surgeon yet, so I'll wait and see what is said then. Apparently I have to wait until my case has been reviewed at the MDT meeting.
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Just wanted to wish you well Laineywinks... i have had a hysterectomy 2 years ago and it seems surgeons prefer to do an epidural these days, less risk involved i suppose. I'm a bit of a coward and went for a general but all went well and that's all you can hope for so no complaints. I used a website called Hystersisters.com...got me clued in about what i should prepare for before and after surgery, during recovery etc., Sending you big hugs and best wishes Annika xx
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Just wanted to wish you well Laineywinks... i have had a hysterectomy 2 years ago and it seems surgeons prefer to do an epidural these days, less risk involved i suppose. I'm a bit of a coward and went for a general but all went well and that's all you can hope for so no complaints. I used a website called Hystersisters.com...got me clued in about what i should prepare for before and after surgery, during recovery etc., Sending you big hugs and best wishes Annika xx
Thanks Annika. That's a very informative site and it's already got me thinking about something that hadn't crossed my mind before. What knickers are best post op ? LOL !
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Had a phone call from the nurse specialist this afternoon to see how I was coping etc. There will be a MDT meeting on Monday morning and my results will be looked into again and a plan of action will be made. She will then see me on Monday afternoon to discuss everything with me.
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Thanks for the update LaineyWinks and good luck on Monday.
Hurdity x
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Thanks for the update LaineyWinks and good luck on Monday.
Hurdity x
Thanks :)
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Hi Laineywinks. I'm just catching up on this thread and I'm sorry to hear your news but pleased that it has been discovered and that you will soon have your treatment,
I am a week after post hysterectomy, vaginally, so if you have any queries I may be able to answer please ask.
Taz x
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Hi Laineywinks. I'm just catching up on this thread and I'm sorry to hear your news but pleased that it has been discovered and that you will soon have your treatment,
I am a week after post hysterectomy, vaginally, so if you have any queries I may be able to answer please ask.
Taz x
Hi Taz, my mind's in a complete whirl at the moment. I went to see the nurse specialist yesterday who was lovely. The results of the MDT meeting where, that I have definite pre cancerous cells and some others that are highly suspicious and are probably a slow early stage cancer. I've been put on Provera 100mg twice a day just to keep a lid on things. Yesterday the plan was to do a vaginal and laproscopic procedure but the surgeon said that I would have to have a GA. Of course this was the worst possible news as the GA is my biggest fear. So there was talk of sending me to a psychologist and all kinds to try to get me over this fear
To day she rang and said they had reconsidered and would now do an abdominal op with spinal and epidural. Actually they are bending over backwards for me. Also Because I'm classed as a cancer patient I will get preferential treatment, such as private room with phone, TV and wifi. I will get more flexible visiting hours and she says I can even take music and headphones into theatre with me ! I hope this is all true !
The protocol on the ward I'm going allows patients to take clear fluids up until a few hours before the op and then they like to get you eating an drinking 2 hours after. If all goes well I could be home after 2 days ! At the moment this is all sounding to good to be true ? Was your experience anything like this ?
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Excellent news indeed. They will possibly give you some Dormicum or a pre med to calm you which is what I had as I was so anxious and although it was all done under epidural I dont remember a thing yet did not have a GA so the moment, I was back in my bed I was wide awake and ate lunch an hour or so later, so much nicer! With a GA one does not usually bounce back so rapidly and it takes a while to get out of ones system.
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Excellent news indeed. They will possibly give you some Dormicum or a pre med to calm you which is what I had as I was so anxious and although it was all done under epidural I dont remember a thing yet did not have a GA so the moment, I was back in my bed I was wide awake and ate lunch an hour or so later, so much nicer! With a GA one does not usually bounce back so rapidly and it takes a while to get out of ones system.
Cassie, your post has cheered me up and reassured me. BIG THANkS ! :)
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Hi - I was an NHS patient but headphones or tablets are allowed into theatre if you are having a spinal block/epidural to keep you occupied while the surgery is taking place. Headphones are advised anyway as surgery can be quite noisy apparently.
I had a GA because I have a fear of vomiting which can be more likely for some people under spinal block and this proved to be true on the ward afterwards with the two spinal block ladies taking longer to recover than myself and the other GA patient. I was back on the ward at 2 and eating sandwiches and drinking tea by 3. I think that everyone reacts differently to both types of anaesthesia and also the pain relief offered so you have to go by what is considered best for you. I didn't want morphine as I had friends who had suffered sickness as a side effect.
Have you discovered the Hysterectomy Association UK forum? The ladies are great over there and you are put into a "club" with other ladies who are having their procedures at the same time. It's great to chat to others who know exactly how you feel.
Taz x
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Hi - I was an NHS patient but headphones or tablets are allowed into theatre if you are having a spinal block/epidural to keep you occupied while the surgery is taking place. Headphones are advised anyway as surgery can be quite noisy apparently.
I had a GA because I have a fear of vomiting which can be more likely for some people under spinal block and this proved to be true on the ward afterwards with the two spinal block ladies taking longer to recover than myself and the other GA patient. I was back on the ward at 2 and eating sandwiches and drinking tea by 3. I think that everyone reacts differently to both types of anaesthesia and also the pain relief offered so you have to go by what is considered best for you. I didn't want morphine as I had friends who had suffered sickness as a side effect.
Have you discovered the Hysterectomy Association UK forum? The ladies are great over there and you are put into a "club" with other ladies who are having their procedures at the same time. It's great to chat to others who know exactly how you feel.
Taz x
Hi Taz, I went on the site you recommended, it's very good and I've ordered an abdominal support for after the op, my daughter's friend used one after a C-Section and said it was marvellous, especially when you have your bowels opened.
Booked in for my op on the 15th Aug, I just want to get it over !
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Glad it was helpful to you Lainey.
Taz x
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Not long to go now LW and it will all be behind you. Are you still opting for the spinal? All the best and let us know how things went, before you know it, you will be back home again!
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Thanks Cassie, Friday morning can't come quick enough, but I'm dreading it at the same time.I had a bit of a wobble yesterday, met the anaesthetist and got the feeling she was trying to talk me out of the regional. But I spoke to the nurse specialist today who then spoke to my surgeon and they both felt the anaesthetist was just being a bit over zealous about making me aware of what can go wrong, both she and my surgeon say the risks of it not working a small and my surgeon is more than happy doing it that way,
I also spoke to my lovely GP and said I was worried that the anaesthetist and said there was a good chance she wouldn't be able to block pain from my ovaries. My GP, who has a lot of gynae experience said, that was very very unlikely, she's done loads of cesarians where women have their tubes tied at the same time and never encountered this.
So it's going ahead as planned with the regional and I'm trying not to think about it, I wish I could take my GP with me she's been an absolute star ! So me and my daughter are having a trip out tomorrow to try and keep my mind off things.
Thanks for your kind thoughts, keep everything crossed for me on Friday please
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Good luck on Friday LW.
Enjoy your trip tomorrow.
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Good luck from me too - the waiting is the worst part. Don't forget to take your music and headphones into theatre with you.
Taz x
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You will be fine, its just easier for them to zap someone to sleep than to do the spinal but dont let her worry you. I have had several Caeasars as well as my ovarian cysts, D&C and a hysterscope and an adjustment to my uterus done under epidural and never felt a thing, all will be fine. Enjoy your day out tomorrow and let us know how things go, will be thinking of you. x
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Thanks for all your support ladies. I had a lovely afternoon out with my daughter which kept my mind off things.
However late last night and then again this morning I got into a right state and decided I didn't trust my anaesthetist and convinced myself she would ambush me into having a general.Anyhow I spoke to my nurse specialist who was very sympathetic and reassuring. But best of all she is going to be waiting for me when I arrive at 7:30am and will stay with me why my anaesthetist does her stuff (so no chance of ambush, which is probably me being a bit mad anyway!). And she is doing all this even though it is her day off ! I feel extremely grateful and stupid at the same time.
But like she say's you can't mess around and waste time when cancer is on the horizon so she'll do anything get me in there tomorrow and get me sorted. What a Star ! Soon as I am well I will make some kind of grand gesture to thank her.
So I'll sign off now ladies and let you know how things go, hopefully in the near future.
Thanks again to everyone.
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Good luck, will be thinking of you, let us know how you got on and take it easy, let the family spoil you.x
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Hi, I'm home, got home this afternoon. Everything went as planned the regional anaesthetic was a complete success. It was a very relaxed and informal affair and I felt no pain whatsoever, bloody sore now though !
Every one involved was excellent, friendly and efficient.
Now I need. To keep my fingers crossed that they got it all and iit hasn't spread !
So I'll say good night, and thanks for all the support and kind thoughts :)
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Wonderful news LW, you are so brave, and I am sure that all will be 100%. Were you wide awake or did you have a mild sedative to relax you? So good, that you pushed for what you wanted. Now rest up and look after yourself, do not rush into anything for a good few weeks.
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Well done LW.
Do you have painkillers to combat the discomfort now?
Take it easy and look after yourself.
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Well done - as has been said you need to try to take it easy now. This is the recovery plan I've stuck to as much as possible.
Step by Step to Recovery
Week 1
after getting home from
hospital
No household tasks at all
Lie on (or in) the bed as much as necessary
Sleep when you need to
Do as many of the light exercises as possible
Shower daily
Walk around the house 2-3 times daily – on one floor if
possible
Lie down, rather than sit
Sit, rather than stand
Week 2 Lie on (or in) the bed as much as necessary
Rest for at least two hours per day
Avoid long periods of sitting or standing
Help with washing up/drying dishes – sitting down if possible
Sit down to prepare vegetables
Daily walk outside – 10 minutes per day
Walking around the house – 2-3 times daily, including stairs
once
Boil just enough water for a mug in a kettle
Week 3 Increase your walking by a 2 minutes daily
Try using the stairs at home 2-3 times a day
Light shopping in immediate vicinity – ie magazine or
newspaper
Boil enough water for 2 mugs in the kettle
If you have any pain – stop immediately
Week 4 Start walking further outdoors – up to 20 minutes twice a
day
You can probably go out in the car by now
Should be able to make tea and coffee for three people
Help with dusting
Week 5-6 Can probably start some light routine housework
May be able to drive a car
Can possibly use an upright vacuum cleaner
Try gentle pelvic floor exercises – stop if you feel pain
Try vacuuming with a cylinder cleaner (week 6-7)
Try bed making (but not changing duvets)
(with either, stop if you have pain)"
Taz xx
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Well done LW.
Do you have painkillers to combat the discomfort now?
Take it easy and look after yourself.
I had 5mg of Midazolam, felt nice and relaxed but didn't nod off, no pain whatsoever just felt like I was being rocked from side to side. I listened to Paul Simon's Shining Like A National Guitar and David Bowie's Greatest Hits and it was all done.
No grogginess or sickness and I was out of my bed standing brushing my teeth at 10 o'clock that evening. Now I'managing on paracetamol and one dose of tramadol a day for Paine relief.
I would recommend regional anaesthesia, to anyone :)
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I've been away and just caught up with this - so glad it went well Laineywinks and hope your recovery runs smoothly and following Taz's advice!
Hurdity x