Menopause Matters Forum
Menopause Discussion => Postmenopause => Topic started by: Northerngirl on December 12, 2023, 12:06:40 PM
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Well ladies I've just been told I've got a 8mm womb lining, I'm bleeding, very postmenopausal. They've said either cancer or hyperplasia ,next step hysteroscopy...any advice would be gratefully appreciated at this point as I'm absolutely devastated can't stop crying
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Of course you are worried. I don't think that 8mm is actually very thick. I am sure that some1 will be along with more info on this.
Fancy mentioning cancer risks at this stage who told you that!! Were Y told how little risk there might be? Do U have a date for the hysteroscopy?
:foryou:
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Hello Northern Girl,
I'm sorry you've had this news, it's always a shock to hear and understandably you feel on a rollercoaster and finding it hard to process.
There are three types of hyperplasia, one being benign, or with precancerous cells and then third showing cancerous cells in the lining and there are good treatments that can be done for all of these diagnoses but the main thing is you are on the track to all of it being addressed and quickly and it's important to try and plant that thought in yourself in the middle of all the turmoil you are feeling. I know its easier said than done and the brain can take over with 'what ifs' but it is just one step at at a time.
Have you had a hysteroscopy before?
Sending a big hug to you x
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:thankyou: Summer-sky
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Post menopausal bleeding also doesn't mean it is always cancer. There are other reasons for it too - are you on HRT? Did they see any endometrial polyps on the scan - was it a TVS scan done by a gynae? I agree with CKLD, at this stage it was a jump for them to say that. x
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Of course you are worried. I don't think that 8mm is actually very thick. I am sure that some1 will be along with more info on this.
Fancy mentioning cancer risks at this stage who told you that!! Were Y told how little risk there might be? Do U have a date for the hysteroscopy?
:foryou:
erm ...no date as yet ...another 2 week referral. I've booked in with private gynaecologists next week. They just said either outcome and both not good
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Post menopausal bleeding also doesn't mean it is always cancer. There are other reasons for it too - are you on HRT? Did they see any endometrial polyps on the scan - was it a TVS scan done by a gynae? I agree with CKLD, at this stage it was a jump for them to say that. x
I've had an ultrasound and vaginal ultrasound and they were the results. Yes I'm on hrt but wish I'd never taken it cuz I've done it to myself obviously
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Thanks for your advice again ladies...I'm obviously absolutely overwhelmed with shock atm...my husband's even crying and I've never seen it before after 36 years...rare I know 😂
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You haven't done it to yourself Northerngirl. IF and only if it is cancer there are many other reasons why it happens. Hang in there x
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Try not to worry you hopefully are being fast tracked. At my hospital they did the scan and biopsy at the same time. My womb lining was normal second time but biopsy came back abnormal. I had cancerous cells in my womb and had everything taken away within 4 weeks I couldn’t fault are NHS. It hadn’t spread so given the all clear afterwards. Hopefully it’s caught early weather precancerous or not. Your biopsy may come back normal just lining is thick. Good luck .
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Try not to worry you hopefully are being fast tracked. At my hospital they did the scan and biopsy at the same time. My womb lining was normal second time but biopsy came back abnormal. I had cancerous cells in my womb and had everything taken away within 4 weeks I couldn’t fault are NHS. It hadn’t spread so given the all clear afterwards. Hopefully it’s caught early weather precancerous or not. Your biopsy may come back normal just lining is thick. Good luck .
did you have any bleeding though? I've had blood in urine but cytoscopy was clear...had ct scan and everything was clear. The this news today has absolutely devastated me even though I knew it was coming
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Try not to worry you hopefully are being fast tracked. At my hospital they did the scan and biopsy at the same time. My womb lining was normal second time but biopsy came back abnormal. I had cancerous cells in my womb and had everything taken away within 4 weeks I couldn’t fault are NHS. It hadn’t spread so given the all clear afterwards. Hopefully it’s caught early weather precancerous or not. Your biopsy may come back normal just lining is thick. Good luck .
did you have any bleeding though? I've had blood in urine but cytoscopy was clear...had ct scan and everything was clear. The this news today has absolutely devastated me even though I knew it was coming
did you have chemo or anything else?
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Hi Northerngirl, I've just had the same diagnosis as you, today. 6.5mm thickness after TVS. Have to have my hysteroscopy under gen anaesthetic due to vaginal atrophy, the gynae said combined with not having children, the pain would be too bad, so I'm glad I'll be knocked out!!
I had spotting for a couple of months followed by a massive heavy period last month. On HRT for 2 years which I decided mainly due to quality of life (or lack of it)
Gynae said to stop hrt and tbh I doubt I'll go back on after this.
Like you, I wasn't given any other diagnosis except possibly cancer. I'm having the procedure with 2 weeks and had the pre op today while at the hospital.
Try not to overthink this - with only 8mm thickness there is only 7% chance of it being cancer, so very low. I've learned over the years that the medical profession always give you worst case scenario. I had to sign the consent form which put more emphasis on what might go wrong instead of the procedure itself. I'm sure with both of us, it's unlikely to be cancer, other yhan bleeding I gave had no other symptoms. Apparently there is a high chance that I wasn't taking enough progesterone, hence thickening, too much oestrogen- 4 pumps daily, hence bleeding. It may be polyps.
Try to do some reading here if you can, lots of sound advice from women who have been through the same.
Will you update when you've had your procedure so I know how you are?
Sending you virtual hugs, I hope you can settle as you process the information you have.
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Just reading your other posts and see you have the same as me - VA. I had difficulty with the TVS today dye to ghe pain so I'm glad to hear you got through yours today.
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I think that medics should keep big gobs shut ........ although they seem to 'have' to be doom and gloom instead of explaining carefully the ifs, why's, buts. Quality of Life so HRT when required is important.
They just said either outcome and both not good. Then sent you away :-\. To my mind that's medical negligence. However, if you are having to wait for further treatment rather than being admitted immediately?
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I had light bleeding/spotting both times. I had a scan and biopsy 15mths before and given all clear then I had bleeding again. Even though then the lining was ok the nurse decided to redo the biopsy. Something I will always be grateful for. I had to have lots of scans to make sure it hadn’t spread which it hadn’t so total hysterectomy was all I needed🤞try not to worry till you have had the biopsy.
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Hi Northerngirl, I've just had the same diagnosis as you, today. 6.5mm thickness after TVS. Have to have my hysteroscopy under gen anaesthetic due to vaginal atrophy, the gynae said combined with not having children, the pain would be too bad, so I'm glad I'll be knocked out!!
I had spotting for a couple of months followed by a massive heavy period last month. On HRT for 2 years which I decided mainly due to quality of life (or lack of it)
Gynae said to stop hrt and tbh I doubt I'll go back on after this.
Like you, I wasn't given any other diagnosis except possibly cancer. I'm having the procedure with 2 weeks and had the pre op today while at the hospital.
Try not to overthink this - with only 8mm thickness there is only 7% chance of it being cancer, so very low. I've learned over the years that the medical profession always give you worst case scenario. I had to sign the consent form which put more emphasis on what might go wrong instead of the procedure itself. I'm sure with both of us, it's unlikely to be cancer, other yhan bleeding I gave had no other symptoms. Apparently there is a high chance that I wasn't taking enough progesterone, hence thickening, too much oestrogen- 4 pumps daily, hence bleeding. It may be polyps.
Try to do some reading here if you can, lots of sound advice from women who have been through the same.
Will you update when you've had your procedure so I know how you are?
Sending you virtual hugs, I hope you can settle as you process the information you have.
thank you so much for your reply, it means a lot to know that we're not alone. It sounds like you've had a lot more information than me about this. I've been on different HRT over the years and finally thought I'd solved it with 1 pump and utrogestan daily. I'm the same as you....I will never take it again...too scared now. I just hope I'm here to make that decision. I'm so terrified at the moment....it couldn't have happened at a worse time (not that there's a good time) I'm due my first grandchild in the spring and can't help but fear the worst. I didn't know you could have the hysteroscopy under anaesthetic....I've had one before and found it very painful and I too have VA.
Have they said you will have a hysterectomy whatever the outcome?
We must stay in touch...I hope all goes well for you
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I think that medics should keep big gobs shut ........ although they seem to 'have' to be doom and gloom instead of explaining carefully the ifs, why's, buts. Quality of Life so HRT when required is important.
They just said either outcome and both not good. Then sent you away :-\. To my mind that's medical negligence. However, if you are having to wait for further treatment rather than being admitted immediately?
that's exactly what they said...2 outcomes with a hysteroscopy and biopsy then a hysterectomy as I am postmeno. It was over the phone not in person....but don't suppose it matters how they said it, it needed to be said.
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Post menopausal bleeding also doesn't mean it is always cancer. There are other reasons for it too - are you on HRT? Did they see any endometrial polyps on the scan - was it a TVS scan done by a gynae? I agree with CKLD, at this stage it was a jump for them to say that. x
it's not just the bleeding, it's the urinary issues and the 8mm thickness.
No polyps mentioned. Yes I'm on oestrogel and daily utrogestan. Not done by gynae but I presume it has been assessed.
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Hi Northerngirl, I've just had the same diagnosis as you, today. 6.5mm thickness after TVS. Have to have my hysteroscopy under gen anaesthetic due to vaginal atrophy, the gynae said combined with not having children, the pain would be too bad, so I'm glad I'll be knocked out!!
I had spotting for a couple of months followed by a massive heavy period last month. On HRT for 2 years which I decided mainly due to quality of life (or lack of it)
Gynae said to stop hrt and tbh I doubt I'll go back on after this.
Like you, I wasn't given any other diagnosis except possibly cancer. I'm having the procedure with 2 weeks and had the pre op today while at the hospital.
Try not to overthink this - with only 8mm thickness there is only 7% chance of it being cancer, so very low. I've learned over the years that the medical profession always give you worst case scenario. I had to sign the consent form which put more emphasis on what might go wrong instead of the procedure itself. I'm sure with both of us, it's unlikely to be cancer, other yhan bleeding I gave had no other symptoms. Apparently there is a high chance that I wasn't taking enough progesterone, hence thickening, too much oestrogen- 4 pumps daily, hence bleeding. It may be polyps.
Try to do some reading here if you can, lots of sound advice from women who have been through the same.
Will you update when you've had your procedure so I know how you are?
Sending you virtual hugs, I hope you can settle as you process the information you have.
thank you so much for your reply...it means a lot to know we are not alone. Do you have to have a hysterectomy whatever the outcome?
I didn't know you could have the hysteroscopy under anaesthetic..it's very painful I found before.
We must stay in touch and help each other x
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No, Notherngirl, no hysterectomy mentioned at this stage. I told the gynae that which ever Dr I speak to about anything always want me to come in for an internal exam and I refuse due to the pain from VA. My last smear in the summer was impossible. She wanted to know why my GP didn't refer me to hospital for exams or smear, she said I could have local, sedation or GA if needed for any necessary exam. She told me to insist, in future, that they refer me. I haven't had any children so my cervix (gynae explained) will never have opened and that combined with VA means they wouldn't attempt hysteroscopy without GA. Why don't you contact them and ask for it too? I will never have anything that could be painful now.
With regards to your first grandchild, you're jumping the gun, thinking you may not be here, you will be. I know it's easy for our minds to think the worst, but it is apparently very rare that either of us has cancer. The chances are, the biopsy will come back with good results for us both. If they don't, I would think the best option would be hysterectomy. I believe I will be informed by letter of the results which is novel. I would think hearing from the specialist would be far better, but there we go.
So, please do try and focus on the fact that there is only a 7% chance with that thickness it could be cancer. If you did have to have a hysterectomy, my friend has had one recently (she's 70) because her family have a genetic propensity to cancer. She bounced back really fast as was fine.
But try to put that to the back of your mind until either of us know.
Please think about contacting the gynae depth and ask for a general anaesthetic too.
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No, Notherngirl, no hysterectomy mentioned at this stage. I told the gynae that which ever Dr I speak to about anything always want me to come in for an internal exam and I refuse due to the pain from VA. My last smear in the summer was impossible. She wanted to know why my GP didn't refer me to hospital for exams or smear, she said I could have local, sedation or GA if needed for any necessary exam. She told me to insist, in future, that they refer me. I haven't had any children so my cervix (gynae explained) will never have opened and that combined with VA means they wouldn't attempt hysteroscopy without GA. Why don't you contact them and ask for it too? I will never have anything that could be painful now.
With regards to your first grandchild, you're jumping the gun, thinking you may not be here, you will be. I know it's easy for our minds to think the worst, but it is apparently very rare that either of us has cancer. The chances are, the biopsy will come back with good results for us both. If they don't, I would think the best option would be hysterectomy. I believe I will be informed by letter of the results which is novel. I would think hearing from the specialist would be far better, but there we go.
So, please do try and focus on the fact that there is only a 7% chance with that thickness it could be cancer. If you did have to have a hysterectomy, my friend has had one recently (she's 70) because her family have a genetic propensity to cancer. She bounced back really fast as was fine.
But try to put that to the back of your mind until either of us know.
Please think about contacting the gynae depth and ask for a general anaesthetic too.
so have you already had your hysteroscopy?
I understand what you are saying but it's all the symptoms along with the 8mm lining...I have bleeding, nausea, lower back and abdominal pain....doesn't look good to me.
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I think that taking a list along to the appt is the way to go: ask the questions B4 the procedure that you are asking here. 'it might be' B4 the next appt is a bit harsh, was there a Nurse present who U were able to talk to afterwards?
Some medics are so used to giving 'news' that they forget the outcome to the patient/relatives.
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No, Notherngirl, no hysterectomy mentioned at this stage. I told the gynae that which ever Dr I speak to about anything always want me to come in for an internal exam and I refuse due to the pain from VA. My last smear in the summer was impossible. She wanted to know why my GP didn't refer me to hospital for exams or smear, she said I could have local, sedation or GA if needed for any necessary exam. She told me to insist, in future, that they refer me. I haven't had any children so my cervix (gynae explained) will never have opened and that combined with VA means they wouldn't attempt hysteroscopy without GA. Why don't you contact them and ask for it too? I will never have anything that could be painful now.
With regards to your first grandchild, you're jumping the gun, thinking you may not be here, you will be. I know it's easy for our minds to think the worst, but it is apparently very rare that either of us has cancer. The chances are, the biopsy will come back with good results for us both. If they don't, I would think the best option would be hysterectomy. I believe I will be informed by letter of the results which is novel. I would think hearing from the specialist would be far better, but there we go.
So, please do try and focus on the fact that there is only a 7% chance with that thickness it could be cancer. If you did have to have a hysterectomy, my friend has had one recently (she's 70) because her family have a genetic propensity to cancer. She bounced back really fast as was fine.
But try to put that to the back of your mind until either of us know.
Please think about contacting the gynae depth and ask for a general anaesthetic too.
I got letter which said my biopsy came back abnormal and I had to see a Specialist in 3 days time . It also said you can bring a relative or a friend with you which made alarm bells go for me as I really thought it would be normal. I looked up the Dr before the appointment and he was a gynaecologist oncologist so I was more prepared. Try not to worry till you get the results.
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Northerngirl, I'm sorry to come to this thread late but a womb lining measurement of 8mm is not that unusual for a post menopause woman using HRT. Sometimes the oestrogen/progesterone ratios are out and it's possible to just get a build up even if on continuous HRT.
There are several reasons this could have happened. I understand you are using Utrogestan on a continuous combined regime but perhaps you have stopped absorbing it properly. Sorry for all the questions but are you taking Utrogestan orally or vaginally? How long have you been been using this regime and why did you have a TVS? Was it just routine or have you had problems like irregular bleeding? Have you ever had a scan before and if so, what was your lining measurement?
When I was using a cyclical regime my womb lining measurement was 8mm immediately before and bleed and then it reliably went down to about 3.3mm post bleed. It could be that you need to take a strong progesterone to clear the womb lining and then switch to a different and more effective form of progesterone or have a Mirena coil fitted.
I'm glad you are being thoroughly checked out but I feel you are being made to worry unduly. It would be different if you were not using HRT.
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[/quote]so have you already had your hysteroscopy?
I understand what you are saying but it's all the symptoms along with the 8mm lining...I have bleeding, nausea, lower back and abdominal pain....doesn't look good to me.
[/quote]
No, not had the hysteroscopy....I only had the TVS yesterday and was told that I'd be in for the GA/procedure within 2 weeks, so I'm hoping it'll be before Christmas.
I hear what you are saying re the other symptoms though. My only symptom was bleeding. It seems to me that they will do a hysterectomy as a precaution if they think things have the potential to develop cancer. But either way, it's early day for you, which is good. Let me know when you get your apt for hysteroscopy and I'll update you likewise.
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I've just read that I'm at higher risk of hyperplasia/cancer because I haven't had children.
Starting will excruciating period pain at 11 due to endometriosis followed by awful menopause issues and now this...oh goodness me, tbh I'd be quite glad to see the back of that part of me!!!
I'm presuming if I did have to have a hysterectomy that I could continue with oestrogen pessaries to control VA. The thought of the pain going back to what it was pre diagnosis is daunting.
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so have you already had your hysteroscopy?
I understand what you are saying but it's all the symptoms along with the 8mm lining...I have bleeding, nausea, lower back and abdominal pain....doesn't look good to me.
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No, not had the hysteroscopy....I only had the TVS yesterday and was told that I'd be in for the GA/procedure within 2 weeks, so I'm hoping it'll be before Christmas.
I hear what you are saying re the other symptoms though. My only symptom was bleeding. It seems to me that they will do a hysterectomy as a precaution if they think things have the potential to develop cancer. But either way, it's early day for you, which is good. Let me know when you get your apt for hysteroscopy and I'll update you likewise.
[/quote]Thank you....I will keep you updated. Wishing you all the best with everything
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Where did U read that information - I've not had children and use localised ovestin for vaginal atrophy.
We 'don't do this' to ourselves! At the time we make those decisions: whether it's over food, holidays, medication : we do so with the information to hand on that day.
It's the way that you have been told that bothers me ........... :o
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Northerngirl, I'm sorry to come to this thread late but a womb lining measurement of 8mm is not that unusual for a post menopause woman using HRT. Sometimes the oestrogen/progesterone ratios are out and it's possible to just get a build up even if on continuous HRT.
There are several reasons this could have happened. I understand you are using Utrogestan on a continuous combined regime but perhaps you have stopped absorbing it properly. Sorry for all the questions but are you taking Utrogestan orally or vaginally? How long have you been been using this regime and why did you have a TVS? Was it just routine or have you had problems like irregular bleeding? Have you ever had a scan before and if so, what was your lining measurement?
When I was using a cyclical regime my womb lining measurement was 8mm immediately before and bleed and then it reliably went down to about 3.3mm post bleed. It could be that you need to take a strong progesterone to clear the womb lining and then switch to a different and more effective form of progesterone or have a Mirena coil fitted.
I'm glad you are being thoroughly checked out but I feel you are being made to worry unduly. It would be different if you were not using HRT.
Thanks Mary G for your reply. Don't mind all the questions at all, any advice on this is gratefully received. I take the utrogestan orally every night for about 20 months alongside one pump of oestrogen. I had the tvs as they are being thorough after having blood in urine and uti symptoms from Oct but all urology scans etc clear. Only this week I have started with bleeding, back and abdominal pain (not had any sort of bleeding since 2012 and I'm 55 now. Never had my lining measured before. I really appreciate your advice.
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If the back and abdominal pain are recent and associated with your current bleed it looks more positive. And the bleed may be good as it will thin the lining. How much utro were you on?
I know I don't take my own advice :o but do try not to worry. Many women have hysteroscopies and only a few find something frightening. And in the unlikely event that they do it's been caught early so there's every chance you will be OK.
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The day gets worse now....I've had a referral through to go gynae/oncology on 28th December....not even had a hysteroscopy or biopsy done. Bang straight to oncology. I'm in bits atm
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Give the Dept a phone call, speak to the Secretary of the Dept and ask the questions. It's too soon to C.mas to be distressed and worried! It may B that they will do the explanation and any treatment/investigations required. If U don't ask you won't get and if you do, it may well stop the worrying.
Make a list of your worries, pick up that phone - and let us know. :bighug:
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Pointless they won't tell me anything before anyway. Gp is ringing tomorrow about it
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Oh dear Northerngirl, that must be a huge worry for you. Not sure where you're based, unless your username is a clue, but I expect I'll have a follow up apt with gynae which will be for after hysteroscopy. I'll let you know who/what type of specialist I'm seeing if I get notice.
I know it's difficult but if you can try to take on board comments on here about there only being a very slim chance you have cancer etc etc. Hard to do I know, but very miserable of them to send you that just before Christmas.
Hopefully your GP will help tomorrow. Thinking of you.
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Thinking of you too Northerngirl. Gynae-oncologists also deal with complex non-cancerous gynae conditions. Hold on to that thought.
Taz x
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Great advice from Taz Northerngirl
These gynae oncologists, do indeed deal with other more complex, but benign conditions.
Fingers crossed for a positive outcome for you (albeit rubbish timimg I agree!)
xx
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Northerngirl, I'm trying to hit the right note here and I'm all for women having uterine scans and being checked out but this all sounds very alarmist.
So you had a UTI that has been checked out and come back clear thankfully. Your had a TVS and your womb lining was 8mm despite the fact you take the recommended dose of Utrogestan (which you may not be digesting properly) and you are on a low dose of Oestrogel. And that has led to this? It's a bit of a knee jerk reaction and sounds like someone is following an extremely rigid protocol and not taking account of the fact you use HRT.
I had a very interesting conversation with a Spanish gynaecologist over here who used to work for an NHS hospital in London and came back to Spain a few years ago to set up his own private practice. He said that women who use HRT often have a higher womb lining measurement and it's often because their HRT regime is out of sync. It's not definitely deadly and not the same as a woman who is not taking HRT at all. Because he was a bloke I was slightly uncomfortable with him at first (particularly when he did the TVS!) but he turned out to be very nice, pro HRT and extremely switched on.
I'm not trying to overly downplay this in any way but unless you have something else that would indicate endometrial hyperplasia, I would have thought the first port of call would be a strong dose of norethisterone to strip the womb lining and then another scan.
This is not helped by the fact the NHS don't routinely scans women so you have no idea what your normal post bleed measurement is.
Can you find a private gynaecologist on the hurry up?
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Hi Northern Girl,
I’ve had scans which have shown my lining is 4-5 mm and multiple fibroids, . I too had menopausal bleeding and on HRT. I was on utrogestan and patches. However, when I had the hysteroscopy, earlier this year, I was told my lining was atrophic ( so no lining) and I had zero fibroids. When I asked why the scan showed something completely different, they told me that scans can often be wrong as they can distort things….please bear that in mind. I think they are so wrong to make judgements like this purely based on your scan results.
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I was a Medical Secretary and answered many such calls.
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Got my hysteroscopy next Wednesday the 20th in the afternoon.
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Just another update ladies. Ended up in A &E the other night , then spent the day on the gynae Surgical ward . After speaking to the gynae dr (don't think it was a consultant tho). She explained the results. Don't think they'll do a hysteroscopy(apparently you shouldn't have them if you've had c sections....I've had 3 over 30 years ago. Guessing that's why the last one hurt so much. She said I might have a pipelle biopsy (think that's what it was called) she said she had double checked my ct from 3 weeks ago and it is all clear. Nothing concerning with my blood tests. Just have to go to gynae/oncology appointment in 2 weeks time.....so maybe she'll go straight for a hysterectomy., I don't know. Surely they have to biopsy first to see if it is the C word. They did say that my GP should never have said what he did and definitely not the way he did or over the phone. I feel a little more reassured ..... not crying every half hour now. Still very anxious. Just wanted to say thanks for all the support again....there is only so much talking about it to the family ....bet they're fed up hearing about it....don't get me wrong I have an amazing husband, 3 sons ,their wives and lovely friends :)
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If the back and abdominal pain are recent and associated with your current bleed it looks more positive. And the bleed may be good as it will thin the lining. How much utro were you on?
I know I don't take my own advice :o but do try not to worry. Many women have hysteroscopies and only a few find something frightening. And in the unlikely event that they do it's been caught early so there's every chance you will be OK.
They haven't said that the bleed is the lining shedding or anything like that so I don't know. I took one pump of the gel and 100 mg utrogestan( think that's right...1 tablet)
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Hello Northerngirl,
Sorry you ended up in A&E but it sounds very encouraging about the scan being clear. Good news. The pipelle biopsy is like a thin tube that goes through into the womb and takes a bit of the lining to sample They don't tend go straight to hysterectomy as first line treatment if you have Endometrial Hyperplasia Without Atypia - ie no precancerous / unusual cells or cancerous cells as they tend to treat with progesterone therapy, coil, or continuous progesterone tablets first and monitor, of course there might be exceptions. I'm glad the Gynae doctor acknowledged that the original doctor jumped the gun in what and the manner you were told. You are further on with what is going on than a few days ago, so hopefully that has helped a little with processing things.
Mrs Mitch - all the best for your hysteroscopy next week x