Menopause Matters Forum
Menopause Discussion => Postmenopause => Topic started by: shrosphirelass on February 11, 2024, 10:58:23 AM
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Hi all,
I haven't been on here for a while, but just wanted to ask if anyone has any experinces they can share. I am 61 and have been on evorel conti for 4 years. I have had regular episodes of bleeding throughout and have had several transvaginal scans that have always come back within normnal (or borderline) limits. My last one was in June 23.
In Decemeber I started bleeding again, mainly spotting. After a month of this I started to flood for about a week, accompanied by stomach cramps. That stopped and I have been bleed free since. I spoke to the drs and they said I had to go on the 2 week pathway. Last week I had a transvaginal scan and 2 hours later was rung by the consulatant to say there were concerns with my scan. He said I had a thickened edometrium, (didn't say how thick) which he said could be due to HRT but additionally I had fluid which was suggestive of cancer. He mentioned hysterectomy. I agreed to have a hysteroscopy and biopsy and to have a mirena fitted at the same time (under general anaesthetic due to anxiety).
I received a letter yesterday outlining all this but with no date for the proceedure.
I can not sleep as it all keeps going around in my head. I try to rationalise with the knowledge I had a normal scan 7 months ago, but part of me goes to the worst case scenario.
Anyone had similar experiences? Sorry for the long message.
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Hi , yes I'm going through something very similar right now and I know that many other ladies on here have been through the same situation, I only joined MM in November and I'm amazed by how common this is. I found out in December I had an 8mm thickened lining after a TVs, then had a heavy bleed and pain so severe I ended up in a & e. Only 10 days ago I had my hysteroscopy/biopsy under a GA and am currently waiting for those results. I've had symptoms since October and have been seriously anxious as many of the ladies on here can vouch to as they've tried to keep me sane. I'm still very anxious and convinced that my symptoms are cancer and after 4 months of tests and scans etc I'm still waiting. I too was on HRT. This is my first experience however of anything like this so there may be others have exact similar experiences who can help.If you want to DM me please feel free if you'd like to vent further, believe me I know it's not easy when anxiety takes over. I haven't slept or eaten properly in months.
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Thanks for your reply Northerngirl. Good luck with your results which will come quickly I hope.
Can I please ask about your experience with the genral anaesthetic? I am very worried about it, though its my choice to do it this way.
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Hi, I chose GA because I'd had a failed biopsy in December and I had a hysteroscopy before and found it extremely painful (I know some ladies don't find it painful) apparently if you've had caesarean sections it can hurt...I've had 3 so maybe that is why it hurt. I didn't really want to do it this way but felt I had to as I couldn't risk another failed biopsy with a local anaesthetic.
I've had 2 GA's before this one and I'm terrified each time (don't even know why). HONESTLY if I can do it you can, the ladies on here got me through it and it wasn't too bad. It was less than a hour from leaving the ward to being awake in recovery. I found it a lot easier to be up and about than after other GA's...obviously somehow a lesser anaesthetic I'm guessing because there is no way I could have got up and walked about as quickly as I did with the others as I did this time. I was first procedure of that afternoon so I didn't have time to really think about it, when I got there it all happened so quickly....I think they did it on purpose as they knew how anxious I was and how long I'd waited for the procedure. So all in all I don't regret it. I'd probably have preferred to be in and out a lot quicker with a local but at least I don't remember how painful it was this time.
Any other questions please feel free to ask. Let us know when you get a date through.
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:bighug: 2 U both.
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Hi, I have just had very similar to you. Had my hysteroscopy and biopsy last week and now awaiting results. I’m nervous, as my lining was very thick but trying to stay positive as I have no other symptoms. I would say about the GA , go for it. 5 of us ladies were in at the same time. All just with gas and air and local anaesthetic. The other 4 were absolutely fine. Luck of the draw, I wasn’t! I fainted and was sick. If I ever had it again I would definitely go for GA. Not because it hurt, it wasn’t pleasant though. Just because now I’d be worrying about it happening again.
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Good luck Jetdav. Thanks for your reply. I do feel guilty about using unecessary resources but at leats it means they'll fit the mirena at the same time.
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Hi, I chose GA because I'd had a failed biopsy in December and I had a hysteroscopy before and found it extremely painful (I know some ladies don't find it painful) apparently if you've had caesarean sections it can hurt...I've had 3 so maybe that is why it hurt. I didn't really want to do it this way but felt I had to as I couldn't risk another failed biopsy with a local anaesthetic.
I've had 2 GA's before this one and I'm terrified each time (don't even know why). HONESTLY if I can do it you can, the ladies on here got me through it and it wasn't too bad. It was less than a hour from leaving the ward to being awake in recovery. I found it a lot easier to be up and about than after other GA's...obviously somehow a lesser anaesthetic I'm guessing because there is no way I could have got up and walked about as quickly as I did with the others as I did this time. I was first procedure of that afternoon so I didn't have time to really think about it, when I got there it all happened so quickly....I think they did it on purpose as they knew how anxious I was and how long I'd waited for the procedure. So all in all I don't regret it. I'd probably have preferred to be in and out a lot quicker with a local but at least I don't remember how painful it was this time.
Any other questions please feel free to ask. Let us know when you get a date through.
THanks, that's reassuring
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"un-necessary resources" means what exactly shropshirelass? :-\
We R entitled to being as comfy as possible during intervention and investigations, if we don't ask we won't get! Medics no long seem to provide options.
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Hi shropshirelass
I’m another of the many being investigated for PMB while on HRT, with a hysteroscopy under GA due next week – you are definitely not alone. The ultrasound showed a thickened endometrium and polyps. At my appointment the gynaecologist quoted a statistic to me that I think was supposed to be reassuring, but it really wasn’t. I don’t know why some of the hospital doctors feel the need to mention the absolute worst case scenario as if it’s likely to happen, when they don’t have the patient’s full background and history and know about their actual risk factors. It just causes unnecessary worry.
I have been through this process before when I had a hysteroscopy for fibroid removal and biopsy done under GA some years ago - I was still having periods then. At that time, the consultant doing the procedure strongly recommended I had a GA as he said it would be too painful to tolerate while awake. I’m sticking to that advice this time too.
I was nervous as I’d never had a GA. But it was very easy. You are only asleep for about 15 mins - it's nothing like when they do bigger surgery. They know everyone will inevitably get anxious to some degree and will put you at ease, and the anaesthetist monitors you the whole time. I remember trying to count to ten, then the next thing I knew I was waking up and it was all done. I had no pain - just some abdominal tenderness for the rest of the day. Though I did have to tell my partner to take it easy driving over the speed bumps on the way home! I’m sure I’ll be a bit nervous for this procedure too, but that is only to be expected.
100% agree with CLKD - there is nothing unnecessary about this! The real waste of resources would be a failed waking hysteroscopy and having to reschedule it under GA anyway.
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Many medics haven't undergone such experiences ::)
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That is how I was made to feel last time I was suppossed to have a hyseroscopy, THe gynae actually made me cry and said If I didn't do it there and then I shouldn't expect for her to be available to treat me subsequntly. Was made to feel like a failure and a nuisance, hence why I'm so defensive.
Thank you for making me remember that we should all expect to be treated well!
I now just have the painful wait for the appointment now. The consultant rang me last Tuesday and he seemed to suggest it was urgent so I expected I would almost straight away have heard by now, but just consent form sent with no date. The worst thing is I can't sleep. I walke up between 3am and 4am and can't go back to sleep and am getting increasingly exhausted.
Good luck Violetta808.
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That is how I was made to feel last time I was suppossed to have a hyseroscopy, THe gynae actually made me cry and said If I didn't do it there and then I shouldn't expect for her to be available to treat me subsequntly. Was made to feel like a failure and a nuisance, hence why I'm so defensive.
Thank you for making me remember that we should all expect to be treated well!
I now just have the painful wait for the appointment now. The consultant rang me last Tuesday and he seemed to suggest it was urgent so I expected I would almost straight away have heard by now, but just consent form sent with no date. The worst thing is I can't sleep. I walke up between 3am and 4am and can't go back to sleep and am getting increasingly exhausted.
Good luck Violetta808.
Hi
I've got no advice re your hysteroscopy. But I do recall another member on here saying that her scan also showed fluid and like you she was very worried - turns out it was blood that was subsequently shed as a period, and all turned out to be fine. She'd not been absorbing the progesterone, that was all it was. It could well be similar for you, I hope so.
Penguin x
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Just coming on here to say that I too was told I had a thickened lining and visible fluid. They said this was blood and sure enough I started to bleed the next day. They also said this was most likely to be hormonal- when I had my hysteroscopy and biopsy.
Words and the way things are phrased have such impact! Big hugs to you.
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Thanks Bluemczoo. When I insert vagifem the applicator is coming out with pink at the end so hopefully it is the same for me.
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I thought that Vagifem is a pessary? "ovestin" is delivered by an applicator.
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It is a pessary but is inserted with an applicator
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That is how I was made to feel last time I was suppossed to have a hyseroscopy, THe gynae actually made me cry and said If I didn't do it there and then I shouldn't expect for her to be available to treat me subsequntly. Was made to feel like a failure and a nuisance, hence why I'm so defensive.
Thank you for making me remember that we should all expect to be treated well!
I now just have the painful wait for the appointment now. The consultant rang me last Tuesday and he seemed to suggest it was urgent so I expected I would almost straight away have heard by now, but just consent form sent with no date. The worst thing is I can't sleep. I walke up between 3am and 4am and can't go back to sleep and am getting increasingly exhausted.
Good luck Violetta808.
That's shocking. We shouldn't be threatened like that. Who do these people think they are and who do they think pays their salaries. It's frightening enough without being frightened more
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tnx shropshirelass - could you put some KY Jelly on the end B4 insertion to enable it to slip inside easier?
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Great minds CLKD, I coat it with Yes moisturiser as otherwise it just falls out!
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Gt minds indeed ;D we make a good Team ;D
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Hi all, just jumping on this thread as I'm currently awaiting an appointment.
Been on Lenzetto spray and utrogesten pills for 2 yrs (I'm 53) no problem until 3 weeks ago I had a bleed for about 5 days while on holiday in Spain. Made an appointment with GP and soon as I got back and have been referred under the 2 week regime. Its been 8 days since I saw my GP and still waiting for a date to see specialist but in this time I've convinced myself it's cancer (thanks to trawling Google). I now have what I'd describe as cramps and backache plus going to wee more often and worrying myself silly. I'm not sure if these pains are real or if I'm just imagining them because I'm so stressed and thinking about cancer symptoms.
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This is exactly my problem didn't have any problem 3 months ago had scan in Jan told I had irregular lining and needed to be put on 2 week referral for cancer and now I have cramps backache period pains more frequent trips to toilet and have feeling that I need to go all the time plus had so many panic attacks that my bowels have slowed down due to ibs. I'm such a mess. Have my appointment on Friday and I'm terrified 😨
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I'm still waiting for my urgent hysteroscopy. I can identify with the general pain and discomfort but I tend to think (when I'm being rational) that I'm just hyper vigilant and normalish sensations are heightened. In the night I'm less rational! The waiting is awful.
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LosMos and In Pain - R U using any appropriate vaginal atrophy treatment?
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I'm not using anything stopped all HRT out of fear Told doctor this and she didn't say that was wrong she just said ok. Doctor hasn't really been particularly helpful just made me feel I had nowhere to tutn
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There seems to be no parity in what we're being told by different doctors. I was told I had to stop vagifem for 6 weeks but could continue ovestin externally otherwise I'd be referred on the 2 week rule. Others are not being told to stop but are being referred. It seems there's still no clarity about use of HRT
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In Pain - do U have a date for your appt.? I would ring the Dept to see what their policy is about stopping VA treatment prior to being seen. There really does seem to be all kinds of 'advice' given which is both a worry and confusing!
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My appointment is tomorrow. My symptons only started about 4 days ago
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Good Luck. Take a list of worries with you and let us know how you get on.
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No I'm not using anything - what is appropriate vaginal atrophy treatment??
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Hi LosMos - do read the 'bladder issues' thread and any connected to vaginal atrophy. Make notes ;-). Several ladies insert 'vagifem' into the vagina and use 'ovestin' on the labial area. I find 'ovestin' internally and smeared on anywhere externally as necessary.
The idea is to insert every night for 2-3 weeks then as necessary. Many find that they need to use every night, others manage symptoms several times a week.
Let us know how you get on. U don't need an exam or blood tests and if your GP suggests not prescribing both, then push for them - we cannot overdose on VA treatments ;-)
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My appointment is tomorrow. My symptons only started about 4 days ago
Good luck for tomorrow. Let us know how it goes x
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My appointment is tomorrow.
Good luck and try not to worry (easier said than done, I know). I have my hysteroscopy/biopsy/polyp removal tomorrow too. Bright and early! 😬
Everyone on this thread - I know that stats (and too much Googling) can be unhelpful, but I found this on the South and West Devon NHS site, which I find reassuring:
‘Unscheduled vaginal bleeding with HRT is relatively common and statistically unlikely to be associated with cancer.
The finding of cancer in women with unscheduled bleeding on HRT is less than 1:200.
There is no increased risk of endometrial cancer in women on HRT unless unopposed oestrogen is used in a woman with an intact uterus.’
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What is unopposed oestrogen?
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When you don’t take progesterone to thin the womb lining
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This sounds silly please bear with me my mind is working over time so I was on 1 pump of oestrogen gel and 100mg progesterone tablet continuously so that is not unopposed ?
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This sounds silly please bear with me my mind is working over time so I was on 1 pump of oestrogen gel and 100mg progesterone tablet continuously so that is not unopposed ?
That was exactly the same as what I was taking continuously ,that is enough supposedly. I personally don't think utrogestan does it's job...from what I've heard on MM.
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And the nhs website says
"Vaginal oestrogen helps with vaginal dryness. It does not increase the risk of breast cancer, blood clots or other conditions.
The dose is low and very little of the medicine gets into the rest of your body, so it's safe to use it for a long time"
Everything I've read so far differs slightly.
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Just an update. My appointment has been brought forward to a week on Sunday at 7.30am. I'm quite anxious about the actual procedure but Just want it over and done with
I have had a week of severe bleeding with clots and cramping but all that stopped a couple of days ago so hopefully the thickened lining has been shed and there will be no concerns.
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Sometimes our bodies really play up don't they! Without any obvious reason :-\
Is some1 going to the appt with you shropshirelass? It may seem a long week ahead, do take a note of your symptoms with you. Let us know how you get on!
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Shropshirelass :tulips2:
I’ll be thinking of you a week on Sunday. I hope all goes well for you :yes:
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Yes I'll be thinking of you too....glad it's an early appointment so you'll be up and straight there and won't spend all day worrying as you've had enough of that.
Hope all goes well and let us know x
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I’ll be thinking of you tomorrow too. Hope it all goes well x
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Good luck for tomorrow Shropshirelass x
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Let us know how you are tomorrow.
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:bighug:
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Thanks all for your kind thoughts, it is much appreciated. Well it is over and done with!
The good news is that the lining was thin and everything looked normal. They didn't even do a biopsy of the lining. So much for panicked phone calls hugely raising my anxiety levels. They removed a fibroid and fitted a mirena. They are sending the fibroid for analysis.
As for the experience it showed the NHS at its best (for yesterday that is). I had to go in at 7.30 and went into a room on my own where my husband was invited to stay until I went to theatre. All the nursing staff were very kind and friendly. My blood pressure was through the roof but I was lucky that I was 1st on the list, went down at 10.00 and was back in that room at 11.35, having been in recovery for a short while. So it took a bit longer than I thought.
Well today I feel pretty awful. Yesterday I was extremely nauseous and quite dizzy. This has started to ease off now and is probably down to the anaesthetic and probably not helped by my acute anxiety and lack of sleep the previous week. I have a sore throat which they say is caused by the tube that was down my throat. This should improve in the next couple of days and is not too bad. The worst thing is the constant severe stomach cramps. It kept me awake all night even with back to back painkillers and a hot water bottle. Does anyone know is this due to the removal of the fibroid? I have known lots of women have hysteroscopies and they didn't have pain. I also don't seem to be able to wee. I don't understand it, I was fine yesterday but today despite drinking loads I don't seem to need to go. Very strange.
Anyway good news in the long term and hopefully I'll get to feel a bit more normal in the coming days.
Thanks again for the support.
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Have U Peed yet, if not ring the Dept for advice. It may be that the whole body is taking up fluids, however by now I would have expected to pass urine. Did U 'go' B4 you were discharged?
Treat yourself with soothing drinks/yoghurts/milk. How is the pain now? If in doubt, ring the dept.; then let us know.
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Hi Shropshirelass, glad everything went well yesterday and you can now relax a bit after a few stressful months (I know how that feels).
I'm sure your current symptoms will start to settle down soon. I had a sore throat...like you say its normal from the tube they put in. A bit of pain/discomfort is also normal for a while, as is some bleeding. I can't comment on the fibroid as I didn't have any of those.
Make sure you try weeing as you don't want any issues with it....I'm sure they made you wee before leaving hospital yesterday so hopefully that is just a short term problem but make sure you contact the ward or your gp if it continues...I'm sure they told you all this....they did me on the info leaflets.
Take care of yourself and I hope you get back to your normal self soon :bighug:
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I'm really glad to hear it went well for you. I bet you're so relieved. When I had a fibroid removed 10 years ago I had crampy, dragging period pain sensations and bleeding for a few days but it settled pretty quickly. I hope you are managing to wee now - like the others say do ring the department if it continues to be a problem. Fibroids can cause a lot of bleeding so hopefully with that removed and a Mirena in you won't experience any more after everything has healed.
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That's good news. Sorry you're feeling uncomfortable but hope you're much better by tomorrow. Did you know you had a fibroid before you had the procedure?
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Glad it went well, you must be relieved. I can only comment on the Mirena fitting and I had a couple of days of cramps after that. Do get checked out if you haven't had a wee yet. Hope you feel better soon. xx
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I've just read your original message. It's shocking. Scaring you to death. Why on earth did they say that? Are these scans not reliable? And the radiographers conclusions? I'm now wondering if I can trust what I've been told.
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After my op yesterday I went for a wee absolutely fine and actually was running back and forwards to go frequently. Today I just haven't seemed to need to go which is great in one way and for moths I've had that horrible urgency feeling all the time. I am going but just less flow and less often than usual.
Jules I did know I had a fibroid but they haven't been concerned about it in the past. The surgeon said they removed it in order to be able to fit the Mirena, so thank goodness I had a general. I don't think the scans are unreliable in themselves. I think what happens or seems to have with me on more than one occasion is that the lining builds up, probably due to HRT use and the gynaes panic and then for me I start flooding and passing clots and it sheds the lining. So 2 scans in a reasonably short time scale look completely different.
It seems to me that the main issue is that the gynaes refuse to acknowledge that HRT is one of the major causes of PMB and therefore carry on doing frequent and often unnecessary invasive procedures and use frightening language to report initial findings. Obviously they need to err on the side of caution, but I had investigations 6 months previously and nothing sinister was found and this has happened more than once.
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After my op yesterday I went for a wee absolutely fine and actually was running back and forwards to go frequently. Today I just haven't seemed to need to go which is great in one way and for moths I've had that horrible urgency feeling all the time. I am going but just less flow and less often than usual.
Jules I did know I had a fibroid but they haven't been concerned about it in the past. The surgeon said they removed it in order to be able to fit the Mirena, so thank goodness I had a general. I don't think the scans are unreliable in themselves. I think what happens or seems to have with me on more than one occasion is that the lining builds up, probably due to HRT use and the gynaes panic and then for me I start flooding and passing clots and it sheds the lining. So 2 scans in a reasonably short time scale look completely different.
It seems to me that the main issue is that the gynaes refuse to acknowledge that HRT is one of the major causes of PMB and therefore carry on doing frequent and often unnecessary invasive procedures and use frightening language to report initial findings. Obviously they need to err on the side of caution, but I had investigations 6 months previously and nothing sinister was found and this has happened more than once.
Okay. There seems to be a few people on here with the same worry. I'm still waiting for the gyny team to get back to my GP. As it wasn't classed as urgent I'm expecting a wait but really don't want that procedure. I think we sometimes have these invasive things just through caution and sometimes end up with discomfort we didn't have before
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Jules, a couple of years back I had bleeding which was classed as PMB and the scan showed a lining of 5mm, I was on HRT at the time and only just going through the menopause (which they refused to believe as i was late 50's) They said I had to have a hysteroscopy there and then and were horrible to me making me feel like a failure when I refused mainly due to anxiety.
After PALS intervention I had a meeting with a dr who agreed the risks were extremely low given my clinical data and agreed to a follow up scan in 6 months time and offered a future general anaesthetic if need be. The follow up scan was within normal limits.
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Jules, a couple of years back I had bleeding which was classed as PMB and the scan showed a lining of 5mm, I was on HRT at the time and only just going through the menopause (which they refused to believe as i was late 50's) They said I had to have a hysteroscopy there and then and were horrible to me making me feel like a failure when I refused mainly due to anxiety.
After PALS intervention I had a meeting with a dr who agreed the risks were extremely low given my clinical data and agreed to a follow up scan in 6 months time and offered a future general anaesthetic if need be. The follow up scan was within normal limits.
My lining was normal. It's just this tiny thing inside my cervix. As nobody seems to think it's concerning I'd rather leave it and have a scan in a few months. I'll have to see. I've not had anymore bleeding, just that once 6 weeks ago.
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Glad all went well for you and I hope you feel better soon shropshirelass x
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Just an update. I had my biopsy back today, all clear. This is what I was expecting as the gynaes had already discharged me following a hysteroscopy which showed a thin lining. It's still good to get it confirmed.
Thanks everyone for your support, just got the constant bleeding from the mirena to contend with now!
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PHEW! :foryou:
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Glad it's all done with, for now at least!
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Hi Shropshirelass, so glad you've had the all clear and you can completely relax now. Hope the coil is starting to settle down for you also :)