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[kateJ]

Hi All,

I have been glued to the form for weeks now and have read some terrible things about hysteroscopies. I have also read some positive things too to be fair

I have an urgent gynae appointment on Saturday 22nd to investigate a thickened endometrium of 4.8mm and continuous spotting on a changed regime to continuous ( 4 pumps of estrogel and 100mg utrogestan vaginally) i was told to take painkillers before the appointment  and they obviously intend to carry out a hysteroscopy even before speaking to me!

 The spotting started about 3 months after I had changed from sequi to cont continued for weeks every day. Doctor advised me to up the utrogestan to 200mg every night but the spotting continued until I stopped the utrogestan, had a bleed went back to sequi and now blissfully nothing.

I really believe the spotting is due to hormones and nothing sinister ( this happened when I tried to change to conti a few years ago), and so do not want to subject myself to a hysteroscpy. But the 4.8mm endometrium is  now a red flag according to the new guidelines and i do not know what to do.

i am terrified of having this done - with or without GA . I also do not believe it to be necessary.

Has anyone actually refused one? What was the reaction of the doctor/team? Am I being silly?

I am really sorry, but this is really bothering me and I would be grateful for any advice anyone can offer.

Thank you

Kate

[DottyD68]

Hi KateJ,

My understanding is that any bleedng or spotting within 6 months of changing/starting a new regime is considered "normal/acceptable". Anything after 6 months is flagged for investigation. How long have you been on this new regime?

[Jules]

Hi All,

I have been glued to the form for weeks now and have read some terrible things about hysteroscopies. I have also read some positive things too to be fair

I have an urgent gynae appointment on Saturday 22nd to investigate a thickened endometrium of 4.8mm and continuous spotting on a changed regime to continuous ( 4 pumps of estrogel and 100mg utrogestan vaginally) i was told to take painkillers before the appointment  and they obviously intend to carry out a hysteroscopy even before speaking to me!

 The spotting started about 3 months after I had changed from sequi to cont continued for weeks every day. Doctor advised me to up the utrogestan to 200mg every night but the spotting continued until I stopped the utrogestan, had a bleed went back to sequi and now blissfully nothing.

I really believe the spotting is due to hormones and nothing sinister ( this happened when I tried to change to conti a few years ago), and so do not want to subject myself to a hysteroscpy. But the 4.8mm endometrium is  now a red flag according to the new guidelines and i do not know what to do.

i am terrified of having this done - with or without GA . I also do not believe it to be necessary.

Has anyone actually refused one? What was the reaction of the doctor/team? Am I being silly?

I am really sorry, but this is really bothering me and I would be grateful for any advice anyone can offer.

Thank you

Kate

Hi Kate. I'm replying just because this is very pertinent to me. I had one last week.  I didn't agree at the first request to refer so GP asked the gyny team for advice and they wanted me referred. I agreed because I knew id never have peace of mind if I didn't.  One thing though, when I got my travel insurance,  they asked specifically if I'd ever refused a test that was suggested. I think if I'd said yes, they wouldn't have covered that issue or at all.  But I understand your dilemma

[Dotty]

If you are on Sequi then the cut off is 7mm.

These are new guidelines :

https://thebms.org.uk/publications/bms-joint-guidelines/management-of-unscheduled-bleeding-on-hormone-replacement-therapy-hrt/

They might perform a pipelle biopsy which is not as difficult as a hysteroscopy. I’ve had two of those and they were a bit uncomfortable but over quite quickly.

[Penguin]

I have never had a hysteroscopy awake, but wondering why you wouldn't want a GA? Not saying you need the hysteroscopy at all, it sounds like you don't, but please bear in mind you are perfectly within your rights to turn up to the appointment and decline the procedure, and / or insist on it being rescheduled for a later date when you can be put on a GA list. It is your choice, and you can take someone else with you to support you if you think it'll be hard to advocate for yourself on the day. To be clear, I am not commenting at all on whether you need the procedure or not, just that you can totally insist it is done on your terms and you can also say no at any point.

[kateJ]

Hi KateJ,

My understanding is that any bleeding or spotting within 6 months of changing/starting a new regime is considered "normal/acceptable". Anything after 6 months is flagged for investigation. How long have you been on this new regime?

Thank you for replying.

I was on the new regime for a total of 5 and a half months. I was fine until 3 months in when the continuous spotting started, and that apparently is another red flag according to the new guidelines. I then went back to sequi just at the 6 month mark after upping the utrogestan to 200mg nightly. I just couldn't take the spotting or the effects of so much progesterone any longer. I feel so much better now, despite the anxiety now re the hystersocopy.

[kateJ]

Hi All,

I have been glued to the form for weeks now and have read some terrible things about hysteroscopies. I have also read some positive things too to be fair

I have an urgent gynae appointment on Saturday 22nd to investigate a thickened endometrium of 4.8mm and continuous spotting on a changed regime to continuous ( 4 pumps of estrogel and 100mg utrogestan vaginally) i was told to take painkillers before the appointment  and they obviously intend to carry out a hysteroscopy even before speaking to me!

 The spotting started about 3 months after I had changed from sequi to cont continued for weeks every day. Doctor advised me to up the utrogestan to 200mg every night but the spotting continued until I stopped the utrogestan, had a bleed went back to sequi and now blissfully nothing.

I really believe the spotting is due to hormones and nothing sinister ( this happened when I tried to change to conti a few years ago), and so do not want to subject myself to a hysteroscpy. But the 4.8mm endometrium is  now a red flag according to the new guidelines and i do not know what to do.

i am terrified of having this done - with or without GA . I also do not believe it to be necessary.

Has anyone actually refused one? What was the reaction of the doctor/team? Am I being silly?

I am really sorry, but this is really bothering me and I would be grateful for any advice anyone can offer.

Thank you

Kate

Hi Kate. I'm replying just because this is very pertinent to me. I had one last week.  I didn't agree at the first request to refer so GP asked the gyny team for advice and they wanted me referred. I agreed because I knew id never have peace of mind if I didn't.  One thing though, when I got my travel insurance,  they asked specifically if I'd ever refused a test that was suggested. I think if I'd said yes, they wouldn't have covered that issue or at all.  But I understand your dilemma

I  have been following your story, Jules, and I fully empathise with how you feel about this.

Very interesting about the travel insurance - I will definitely keep that in mind.

Thank you

[kateJ]

If you are on Sequi then the cut off is 7mm.

These are new guidelines :

https://thebms.org.uk/publications/bms-joint-guidelines/management-of-unscheduled-bleeding-on-hormone-replacement-therapy-hrt/

They might perform a pipelle biopsy which is not as difficult as a hysteroscopy. I’ve had two of those and they were a bit uncomfortable but over quite quickly.

Thankyou for this.

I was still on the continuous regime when my GP referred me - albeit just within the 6 months -  so the 4mm is what they have to go with, unfortunately.

[kateJ]

I have never had a hysteroscopy awake, but wondering why you wouldn't want a GA? Not saying you need the hysteroscopy at all, it sounds like you don't, but please bear in mind you are perfectly within your rights to turn up to the appointment and decline the procedure, and / or insist on it being rescheduled for a later date when you can be put on a GA list. It is your choice, and you can take someone else with you to support you if you think it'll be hard to advocate for yourself on the day. To be clear, I am not commenting at all on whether you need the procedure or not, just that you can totally insist it is done on your terms and you can also say no at any point.

I have asked myself the same question and  I think it is down to past experiences. It is just something I really want to avoid and sounds completely irrational!

Thank you for taking the time to reply.

kate

[sheila99]

Can you delay it? The longer you can go on sequi with no spotting the more likely it is that nothing is wrong. We're you definitely meno when you went on conti? If you weren't it's more likely you'd bleed.

[shrosphirelass]

I refused to have a hysteroscopy several years ago. My lining was very similar to yours, just over the cut off. Following the scan they immediately said I needed the hysteroscopy there and then. I said I would not have it without some kind of sedation. They said they didn't offer sedation. The gynae was absolutely horrible to me and said she may not be able to treat me at a later date ( I wouldn't have wanted her to, she was so bullying and severe). They failed to take into account that I was on HRT and probably not properly menopausal ( but because I was late menopause they didn't seem to believe this possible). I was made to feel a failure and got very upset. It was an awful experience. In the end I went through PALS and they arranged an appointment with another gynae who went through the risks and benefits and agreed that the risks were very low. She agreed to rescan me in 6 months in order to monitor. When this was done my lining was with the recommended limits.

I have recently had a hysteroscopy again because of bleeding and following a scan which showed a thickened lining and fluid. The consultant rang me on the day of the scan telling me my scan was suggestive of cancer and it was urgent. They agreed to do it under general. When I had the procedure they found that my lining was thin and they had no concerns!

I personally think that for women who are on HRT who experience bleeding they need to take a different approach. Potentially I could have had countless hysteroscopies as I have had many instances of bleeding during the time I have been on HRT.. I know that there are risks but it was explained to me for women on HRT unscheduled bleeding tends to be low risk unless there are other factors involved.

[Jules]

I felt under pressure even though my GP said she couldn't make me have it, she said they couldn't ignore it. They have to cover themselves havent they. The consultant said I didn't have to have it on that day but I needed to know to stop worrying and i didn'twantto worry any longer nor miss my estrogen treatment. It is a really hard position to be in.

[kateJ]

Can you delay it? The longer you can go on sequi with no spotting the more likely it is that nothing is wrong. We're you definitely meno when you went on conti? If you weren't it's more likely you'd bleed.

I am going to suggest exactly this. I have been on HRT for about 15 years  so definitely meno) and have never got on with Continuous; always okay on Sequi, despite at times heavy bleeds.

Thank you

[kateJ]

I refused to have a hysteroscopy several years ago. My lining was very similar to yours, just over the cut off. Following the scan they immediately said I needed the hysteroscopy there and then. I said I would not have it without some kind of sedation. They said they didn't offer sedation. The gynae was absolutely horrible to me and said she may not be able to treat me at a later date ( I wouldn't have wanted her to, she was so bullying and severe). They failed to take into account that I was on HRT and probably not properly menopausal ( but because I was late menopause they didn't seem to believe this possible). I was made to feel a failure and got very upset. It was an awful experience. In the end I went through PALS and they arranged an appointment with another gynae who went through the risks and benefits and agreed that the risks were very low. She agreed to rescan me in 6 months in order to monitor. When this was done my lining was with the recommended limits.

I have recently had a hysteroscopy again because of bleeding and following a scan which showed a thickened lining and fluid. The consultant rang me on the day of the scan telling me my scan was suggestive of cancer and it was urgent. They agreed to do it under general. When I had the procedure they found that my lining was thin and they had no concerns!

I personally think that for women who are on HRT who experience bleeding they need to take a different approach. Potentially I could have had countless hysteroscopies as I have had many instances of bleeding during the time I have been on HRT.. I know that there are risks but it was explained to me for women on HRT unscheduled bleeding tends to be low risk unless there are other factors involved.

It's awful, isn't it, how we are made to feel?  My anxiety was awful yesterday. I really do think this is an unnecessary procedure for me, given my record.

[kateJ]

I felt under pressure even though my GP said she couldn't make me have it, she said they couldn't ignore it. They have to cover themselves haven't they. The consultant said I didn't have to have it on that day but I needed to know to stop worrying and i didn't want to worry any longer nor miss my estrogen treatment. It is a really hard position to be in.

The same position I am in now, and I feel very anxious about it. I have made the decision to ask if they will re scan me in about 4- 6 months and then we can see from there.  I am also going to reduce to 3 pumps from 4 ( the guidelines are now saying the progesterone has to be in proportion especially for women on a high dose of estrogen) to see if this will make a difference. Obviously it won't have by the time I have my appointment and they will scan me - my lining will be thicker than 4.8mm even as I will be a week away from the scheduled bleed ( if that makes sense) so I know I am going to have to argue that one out too!

I think once you on on the pathway, they will not deviate from the protocol.

I really hope you are feeling better after your procedure, Jules, and I hope that by raising the terrible way you were treated ( as women continue to be) adds to the pressure to get things changed -  because it really needs to.

I  have been reading through the very recent comments attached to the petition on this, and it looks like things still have a long way to go.

https://www.change.org/p/secretary-of-state-for-health-end-barbaric-nhs-hysteroscopies-with-inadequate-pain-relief/c

Thank you everyone for all your replies and suggestions. I will let you all know the outcome so that anybody in the same situation knows they have options ( hopefully)

Have a lovely weekend.