Menopause Matters Forum
Menopause Discussion => Postmenopause => Topic started by: In pain on February 08, 2024, 07:46:38 PM
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I'm really looking for advice or similar conditions I started hrt 2 years ago and was put on different routines all the time. In September 23 I was told that I am now post menopause ( not gone 12 months without period) so not sure how I am ! So was put on continuous 2 pumps estrogel and 100mg utesteron In October had a bleed that lasted about 12 days. Was booked in for a vaginal scan and was told everything was fine except for a small cyst on right ovary but noting to worry about and rescan in 3 months to check if it had gone. So January this year had scan was told cyst had gone but lining was thick at 8mm was told probably just hrt needs adjusting. Few days later read the notes that were sent to doctor and the lady who had scanned me said lining 8mm thick and irregular and can't rule out fibroid or something more sinister. Well I am now having panick attacks can't eat can't sleep. Spoke to doctor about it and she said as long as I don't have a heavy bleed It is fine but now I've started spotting and have been for about 4 days. I am now waiting for another tvs to see what's going on I am worried beyond belief. Has anyone had anything similar. Sorry pist us long.
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Hi changing to a continuous regime can take 6 months to settle x
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Hi thankyou for replying
I spoke to a different doctor and she said because I have only been on since September she would send me for a tvs again but my previous doctor ( I seem to see a different one each time ) said if I bleed I will need to see gyne for a biopsy. I'm very confused and especially worried about the sinister part
Many thanks 😊
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My understanding was that if you are still in peri then bleeding is likely to happen on a conti regime as your own cycle is still there in the background.
Plus, as Dotty says, you haven't even done the full six months yet, within which time bleeding may well happen. Can you go back and see the GP that suggested the TVS?
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Hi
Yeh I think I'm going to have to get in touch again as was told I would be fast tracked but still waiting. :-\
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Also was told I was postmenopausal because of my age (54) but don't see how I can be.
The other thing that is worrying me is the lining is irregular is that worse! I just don't no. Sorry to keep on but I'm exhausted through worry. I have very bad health anxiety 😕
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It takes ages to settle into a regime so maybe you are still settling down. If you aren’t absorbing progesterone properly, this can cause your lining to thicken. Did the doctor say to take 200 mg since your bleed. And if still bleeding, then your body just shedding the thickened lining. It is really hard to stay calm during these times. I have just been through something similar and had my biopsy today. It is just routine these days and as the Dr said, there is so many more people on hrt that they may rethink it all. The Dr told me that my bleeding is 97% likely to be hormonal, due to a change in brand of progesterone and/or my body having a last hurrah! I’m 53, so it may be similar for you. Take lots of care.
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I don't know about your situation but I know about the anxiety. I'm the same everytime I've to have tests. I don't think the medics help with the language they use. It's their daily job and they forget the impact of what they say. I had an awful experience when a gp referred me to the breast clinic. I was physically ill by the time I got there all because of the things the GP had said. Recently I was given a diagnosis after a test, so casual, no explanation, nobody with me. My advice from my own experience is to remember that theyre talking in their daily medical language and it doesn't necessarily mean anything, they just dont think, chase up your appointments, don't just wait, the wait lists are so bad that you're just a number. Those who shout loudest get seen quicker and nobody else will speak for you. Ring up and get yourself seen. I've done it, I even rang the histology lab for outstanding results. The nhs is in such a mess, you've to push your own case.
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Hi In pain , I too am in a similar situation as I'm waiting for biopsy results at moment...due anytime now, my lining is
8mm. The GP I spoke to in December after my scan results came back was very blunt and told me " I had either cancer or hyperplasia, both were bad I'd need a hysterectomy but it didn't matter as I don't need my womb anyway " he was on.loud speaker at the time and neither I or my husband could believe it. I agree with Jules the medical profession are so used to it that they don't realise how it affects us. The gynae team at hospital have been much more considerate. Jules is also right about the NHS waiting times, I'm at 4 months of investigations now and my anxiety is off the scale. There are many of us in this unfortunate position and do help each other as I've definitely found out over the past few months. Please reach out if needed
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Hi In Pain. The important thing here is that your lining is not uniform and this is what needs to be checked. I was told at my last scan that it's not so much the thickness itself but the fact that the lining has a denser patch or patches which needs to be checked. This could easily be a fibroid but you need to make sure that it's not hyperplasia which is a pre-cancerous condition. Although it is obviously an anxious time it is important that you chase this up if you don't get the appointment.
Taz x
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Hi In pain, I'm sorry you have this worry. A lot of us have been there with repeat TVS, hysteroscopies & biopsies for a thickened lining & odd bleeding & know just how you are feeling :hug: With any luck the irregularity will turn out to be due to a fibroid & the thickening & bleeding resolved by adjusting your HRT, but I agree with Taz about the importance of making sure you don't get lost in the system if you don't get the appointment within the expected timescale. You could try ringing the scanning dept yourself to get an idea of how long before you're seen.
Wx
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A lot if unnecessary worry is generated by the 'everyone is peri at 54' fairy story. It's about time they realised some women aren't meno till their early 60s. If you have a cycle of your own it can be 16mm before a period and it isn't a problem. It might be that it's too soon for you to be on conti hrt, if you were pretty regular 2 years ago it's unlikely you're meno now. Agree the irregularity needs to be investigated though bit remember the majority turn put to be OK.
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Thankyou all for your kind words. I have a doctors appointment on Monday so I will speak to them. The bleeding has stopped I now just have bloating. I'm trying to stay positive and hoping it is just a buildup of hormones. :-\
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Just come back from the doctors. She is referring me for an urgent biopsy for suspected cancer so I am having a full blown melt down right now 😭. Is this something they say for it to be a 2 week referral or is it the worst 😓😓
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This is because your lining is irregular where it should be the same depth all over. This could just be a fibroid but the guidelines are that you should be referred within two weeks as cancer can't be ruled out without a biopsy. You may have hyperplasia which gives a thickened lining plus denser patches and is a pre-cancerous condition. It's good that you are being fast tracked so that if treatment is needed then it can be started as soon as possible. Your GP sounds blunt in the way you have been spoken to with little regard for how scary it can sound.
Taz x :hug:
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Just come back from the doctors. She is referring me for an urgent biopsy for suspected cancer so I am having a full blown melt down right now 😭. Is this something they say for it to be a 2 week referral or is it the worst 😓😓
In pain,I know exactly how you're feeling honestly. I am stuck in the middle of the exact same nightmare and as I mentioned before I had a very blunt conversation with a GP who I had never even spoken to before until that day in December and his words have stuck with me for the past 2 months now. I hope you get referred quickly and don't have to wait as long as I have....the anxiety and emotional toll has massively affected me and still is, I didn't know that I could cry so much. I understand that all these referrals are standard but they scare the hell out of you(I've had 5 referrals since October and each one gets harder). I just want you to know that there are many of us going through it or have been through it and we totally understand your anxiety and emotions right now. If I can help you more please ask. :bighug:
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Thankyou
I'm just trying to understand it all really 3 months ago my lining was fine and now this . I have been reading your posts and keeping my fingers crossed for you. My anxiety had reached an all time high 😥. As I left the doctors she said most women have good biopsy results and then puts in my notes suspected C. I rather her tell me to my face. Had referral unit phone me a out half hour after doctors to say they have referred me to gynecology and should hear in 10 days. I hope so cause the waiting is awful xx
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Hiya
I'm currently on exactly the same so-called 'cancer pathway' and waiting for a hysteroscopy. It absolutely does NOT mean you have suspected cancer but just what they put on the notes in order to speed the investigations along. Your doctor said most women have good results, and that is the truth. Also your lining was fine three months ago and it is unlikely anything sinister will be going on now. But some doctors feel they have to mention the worst case scenario. I don't know why they do, because it causes so much anxiety. Also from what you say you might still be in peri and your own cycle is trying to take over and that is causing the extra bleeding. I have friends and family still having regular periods at 54.
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Hi Violetta
Thankyou for your reply it's very reasuring to read your comments.
Thankyou to everyone who has replied I don't feel so alone. My husband has been very supportive and caring but Its good to be able to talk to people experiencing the same thing. Sending hugs to you all xx
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I think that it is routine for anyone who has bleeding/thickened lining to go through the ‘2 week referral’ they do take biopsies to see what your cells are doing, very rarely it is cancer. The language they use creates lots of anxiety. To be honest, when I had mine done, it was really good to speak to the gynaecologist who was very reassuring. Using words like Urgent referral is really scary. Oh, the things we go through! This group is very supportive though, takes the scariness away, I’m glad I found it.
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Hi I am 54 and was taken off sequi on to conti as supposedly should be menopausal and I did nothing but bleed came off hrt altogether had tvs which should lining of 11mm so had hysteroscopy 5 wks later lining fine.fast forward 5mths had another bleed so hormones checked and I am still in peri so bleed is a normal period had all the pmt too.so at 54 you may not be menopausal and now gp thinks that’s why lining was thick as my own cycle was in play
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Hi Donna69
When the doctor said I should change to conti I told her I didn't think I was postmenopausal but she said cause I'm 54 I must be. I've stopped all my HRT at the moment until my gyne appointment. I think the think I'm worrying about the mist is the lining is irregular is that worse than just being thick ? Xx
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I had to have a scan last year my lining was 11mm and a possible polyp when I finally got my hysteroscopy he found no polyp and thin lining.it was the worst 3 mths of my life.not sure if mine was thick all over or not only just found out after been able to access my medical file I have several fibroids too that no one told me about at the scan.I have gone 5mths no bleeding then 2weeks ago started very heavy bleed after pmt,dr did blood tests which say I’m still peri but I am still spotting if it hasn’t stopped by next week I have to go back and then I imagine I will have all the tests done again I’m so anxious.But if you are still peri your womb lining will fluctuate or it may be a simple fibroid.I hate going through all this it’s the worst thing ever
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So I'm still waiting for my 2 week referral appointment with gynecologist and going out of my mind with worry. I had full bloods done 2 weeks ago and they have all come back normal. However I am now feeling bloated and keep having clear mucus on the tissue after I've had a wee. Not sure if this is normal or hormonal or what. Stopped HRT 3 weeks ago. Any words of advice will be gratefully appreciated 🙂
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I'm slightly different in that I was using vagifem pessaries. Had a small bleed, examined thoroughly and told to come off it for 4 weeks as she thought it was the estrogen. If I didn't stop using vagifem, she would have to refer me on the 2 weeks pathway as per guidance. That scared me and even though she seriously doubts its cancer, I've asked for a scan. She said I'll be waiting about 8 weeks. It's very worrying. I've had no more bleeding but I want to be sure. I think the 2 week thing is standard if your post menopause. Sorry I can't help with the mucous. Is it different to normal vaginal discharge?
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It's more like I'm ovulation just on tissue clear no odour and sticky 😕
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It could be ovulation? Some women have periods into their late fifties and you weren't post menopausal when you started HRT.Now you have stopped it maybe you have ovulated.
Taz x
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Yes it might be hormone related.
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Or it could be the start of vaginal atrophy, I think that comes with clear discharge.
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Or it could be the start of vaginal atrophy, I think that comes with clear discharge.
It does but I found mine was watery.
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This may sound silly but What is vaginal atrophy ?
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It's when things become dry down there because of a lack of estrogen and, in time, the skin starts shrinking/shrivelling up. It can also create urimary tract problems. It usually is treated with a very low dose of topical estrogen inside the vaginal canal and outside on the lips and vulva to plump the tissues up again with estrogen.
Jules may be right though in that perhaps it is only watery discharge that is indicative of va.
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So had my gyne appointment today and I've come away upset and disappointed. The Dr was not very sympathetic didnt have any of my notes on my scan from my doctorsI felt like just another number. Went through lots of general questions how many children, smoker etc then said he is going to take a biopsy but don't worry cause most of them come back fine.
So couldn't do biopsy as cervix closed after lots of pushing and prodding ( didn't really hurt though ) so now have to have a hysteroscopy. Dr said cause I coped with what they had just done it would be outpatient 😥
He also found something on my cervix that is secreting mucas so need a colposcopy for that but he said it didn't look sinister so he's not really worried.
So I'm no further forward with an answer.
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That must be so disappointing and another waiting game. How long will you have to wait?
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2/3 weeks
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2/3 weeks
You would think the colposcopy could be done at the same time, Ive had one of those donkeys years ago. I didnt feel anything but I understand we're not all the same. The waiting is so stressful and can make you feel ill. Im waiting for a scan. Im also waiting for stomach biopsy results from 4 months ago. Its plain to us that if the NHS systems were more effective, everybody would be spared time and stress. Im sure the way it works now just makes more work because people have to have repeated GP visits, treatment for stress etc. Anyway that doesnt help you but id take something from the fact he wasnt too worried. He will have seen absolutely loads in his days.
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In pain, I'm sorry to hear that today didn't go as planned. I know how disappointing this can be, this how my appointment went in December. I too had a failed biopsy for the same reason as you so that's when I chose to have a general anaesthetic incase it failed again....was this offered to you??
I don't think they understand how worrying these things are and how agonising the waits can be.
Sending you big hugs and support if you need it :bighug:
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In pain, my understanding is that you can ask for a general anaesthetic if that's what you prefer. I told them I couldn't have the hysteroscopy and biopsy as an outpatient due to acute anxiety and after PALs intervention they arranged for me to see a different gynae who agreed to GA. As it happened the follow up scan was ok so I didn't need one but after this recent episode of bleeding and subsequent "worrying" scan they agreed straight away. Still waiting though and it definately slows the process down.
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No GA was not offered he said I would be fine because I coped with him trying the biopsy. I'm just fed up with it all .Also he asked if my vagina was ok I said no it was sore felt dry and that I needed to wee more often ( which I thought was VA) but he offered no advice on what I should do for it.
He suggested a mirena coil to keep my lining thin but how can I have that when my cervix is closed ? 🤔
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PALs ?
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Hiya, PALS is Patient Advice and Liaison Service - an independent advice and advocacy service. Worth giving them a ring perhaps.
That’s such a shame about your appointment yesterday. The gynaecologist sounds like he needs serious refresher training in bedside manner.
You are absolutely within your rights to have a hysteroscopy done under GA, if you want to. It is completely your decision and your consent. Gynae should have made that very clear yesterday.
That said, he is right that you might tolerate it very well awake, if you didn’t find the attempts to do the biopsy too painful. They use a different instrument to open up your cervix gently, so it won’t be a struggle like yesterday. They can put in the Mirena coil at the same time as doing the hysteroscopy, if you choose to have one. Also they will stop if it becomes too painful.
It is really disappointing that the gynae couldn’t take time to explain all these things properly and give you the facts you need to make informed choices!
Oh and ask your GP for Vagifem and/or Ovestin for vaginal/vulval dryness, it really works.
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Yes I agree with the others you can have a GA if you want one...I didn't know this until the ladies on here mentioned it. I didn't want to risk it failing again under a local and then having to wait longer for a GA again....I'd been waiting long enough as it was. They said the same to me as you "that I could tolerate it as I was so close" but didn't want to risk it. Don't let them force you into something that you're not happy with. I was anxious about the GA but was glad I had it. Do what you feel comfortable with.
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I'm having my "urgent" hysteroscopy under GA and they are fitting a mirena at the same time to hopefully prevent future issues. As I said, only down side is that it will be a longer wait, I'm still waiting for a date. So push for one if that's what you want.
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So spoke to hospital today as they phoned me with an outpatients appointment for tomorrow. I asked if I could have the procedure done under ga and the lady was ever so nice and said that wouldn't be a problem but not sure how long I would have to wait. Just out of interest how long have people had to wait for ga ?
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Hi In pain, I waited 5 weeks for mine under GA.
I'm glad you've been able to have it that way and they were nice and understanding for you.
Hope you hear soon
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I was offered an appointment for 5 and a half weeks after being contacted by the consultant stressing the urgency of it! Unfortunately, we are on holiday then so I am now waiting for them to reschedule which is really frustrating. I said I'd take a cancellation at short notice so I'm hoping I hear soon.
Can you ask them how long the wait is likely to be?
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Little update
Had my hysteroscopy, biopsy, colposcopy and coli fitted under GA yesterday.
Ended up having biopsy of cervix as they found minimal HPV cells so had those scraped away a nathobian mucas cyst ( think that's how to spell it ) so had that scraped away. A biopsy of my uterus a. polyp removed and a D&C and a coil fitted. The consultant came to see me just as I was waking up and explained what they had done she said not worried about cervix and everything else looked OK wait for the biopsy results. So I'm taking that as slightly better than the sinister comment i got right at the start of all this. I guess it's still a waiting game. The hospital stuff were amazing so that helped a lot.
🙂
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I’m so pleased to hear it’s all done and went well. And that they were so thorough and gave you the full gynae MOT (much nicer to be asleep for all that).
After my hysteroscopy the consultant also told me everything looked healthy and normal and he fully expected a normal biopsy - and he was right, it was all fine. So I hope you are feeling reassured (and you get the results quickly).
So many of us on this forum have been told the absolute worst case scenario at the beginning of the process - a highly unlikely outcome when investigating bleeding on HRT. It just causes us so much needless anxiety!
Enjoy your weekend! 🙂
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That sounds positive and a relief for you that everything was done together. If you dont get biopsy results as quickly as you expect, chase it up. They seem to be taking longer in some areas
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I was also given an exempt from working certificate for 3 days due to the procedure I was having . it was very unexpected. It says not fit to work for 3 working days. Does this mean it starts from Monday as I don't work Sat Sun. Just wondering if anyone knows the answer. My boss will not be happy but hey-ho
Thankyou for all your advice and support. It has got me through some very bad thoughts xx
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Hi In pain, so pleased it all went well for you yesterday, it does sound like you had the full gynae MOT like violetta808 says. At least everything was done together. I'm glad you had a GA for all that.
Hope you're feeling ok today and not too sore. I'm sure your results will be fine but I know this waiting game is a nightmare for us ladies.
Sorry I can't help regarding the work exemption certificate but sure someone will be able to advise you.
Let us know when you get the result x
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I was also given an exempt from working certificate for 3 days due to the procedure I was having . it was very unexpected. It says not fit to work for 3 working days. Does this mean it starts from Monday as I don't work Sat Sun. Just wondering if anyone knows the answer. My boss will not be happy but hey-ho
Thankyou for all your advice and support. It has got me through some very bad thoughts xx
Im sure it covers weekends if I remember rightly
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All sounds positive and hopefully your MOT will have sorted you out going forward. Good luck on the biopsy.
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Finally after waiting since January I finally got my results back from my hysteroscopy/MOT. Both biopsies are normal and no more action needed. It's been a hard emotional journey and I would like to thank everyone for their support, advice and kind words. :)
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So pleased for you!
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Thankyou
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Great news in pain! xx
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Finally....great news Inpain
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Thankyou