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Menopause

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Utrogestan intolerance?

41 replies

collywobble · 26/09/2020 10:04

I started taking HRT 3 months ago Sandrena gel 1mg and ustrogestan 100 mg vaginally for 12 days ( I know I'm intolerant to it after a bad experience with the mirena coil) initially felt really not much difference. I felt slightly more energetic and happy when taking sandrena so my gp increased my sandrena to 2mg gel . This month however when I started taking the ustrogestan I have felt 10x worse than I normally do leading up to my period. My boobs are painful , my mood is horrible, I'm tearful and argumentative and my partner although supportive has said I'm much much worse on the run up to my period than I was before taking HRT . I'm assuming this is my intolerance to progesterone rearing it's ugly head again as I do feel better during the estrogen phase but as I wanted HRT to help with my mood I don't know what I can do . I've always been very hormonal . Any suggestions? Is a hysterectomy the answer ?

OP posts:
JinglingHellsBells · 26/09/2020 17:26

It's quite common to get this with a lot of hrt.
My advice would be you try to see a specialist who can tweak the dose for you. Your GP is unlikely to sanction it, but you could have a longer cycle with Utrogestan every 6 to 8 weeks.

You do know that the dose is 200mgs x 12 days, not 100mgs?
I know some women are using 100mgs when it's vaginal use but there is only limited research showing it's safe . I use it vaginally and use 200mgs for 10 days but on a long cycle (this is through a private meno specialist.)

No one will do a hysterectomy for you based on progesterone intolerance.

Tornfelt · 26/09/2020 19:05

Hi @collywobble I am also progesterone intolerant so sympathise. I have been better on Utrogestan than other forms though (Mirena was hellish.) I have begun to take it vaginally the last couple of months as I was starting to get effects again during the 10 days per month I was taking it orally. My GP advised 100mg vaginally, rather than 200mg orally, so am interested to hear more about possible safety issues @JinglingHellsBells?
Thanks.

JinglingHellsBells · 26/09/2020 19:22

I don't have the research to hand @Tornfelt but from what I've gathered, there has been some limited research showing that using 100mgs vaginally results in the same uptake as 200mgs orally. This has not made its way into the patient instructions but that is probably because using it vaginally if off-label in the UK ( yet not elsewhere in Europe.)

The risk is that it won't control the growth of the lining enough at a lower dose which can eventually result in hyperplasia.

I guess the risk is very small,but that's the reason.

Your GP seems quite 'informed' because although private consultants can say use it vaginally, GPs can't in theory as that's against the UK prescribing guidance.

There's nothing to stop you doing it- who's to know :) - but it's not 'legal' in terms of prescribing within the NHS.

I use 200mgs but I only use it every 6 to 8 weeks - this is with a private consultant where if there was an issue I could have a scan arranged and also because they have the freedom to prescribe outside of the NHS regimes.

Tornfelt · 26/09/2020 19:48

Thank you @JinglingHellsBells. I think I have been quite lucky with my GP. She did say about it being off licence, but gave dosage advice anyway and said it was up to me. I have felt better taking it this way, and have had bleeds so hopefully my lining is doing what it is supposed to do!

Abraid2 · 26/09/2020 19:51

I do 100mg vaginally every other night as advised by Dr Louise Newson.

JinglingHellsBells · 26/09/2020 20:16

@Abraid2 That's the continuous version, with no bleed.

I didn't get on with a conti regime- tried 200mgs daily and felt awful and spotted.

Abraid2 · 26/09/2020 20:23

That’s right, continuous, important to note.

collywobble · 27/09/2020 07:31

@JinglingHellsBells thank you for your advice . I'm also wondering if this dreadful set of symptoms has coincided with an increase to my estrogen dose from 1mg to 2mg as the first two months have been fine on the progesterone but as I'd had no noticeable difference really my gp increased my estrogen. It's so hard getting the balance right.

OP posts:
collywobble · 27/09/2020 07:37

@JinglingHellsBells when you say see a specialist do you mean that I can ask my gp to refer me to a specialist or do I go to a menopause specialist directly privately?

OP posts:
JinglingHellsBells · 27/09/2020 08:45

when you say see a specialist do you mean that I can ask my gp to refer me to a specialist or do I go to a menopause specialist directly privately?

I went to one privately- shopped around, so to speak, online, to find someone I thought was what I needed. I didn't need a referral as they are happy for women to self-refer. Just called their PA etc. many consultants work this way now.

You can go through the NHS and your GP but they might not feel your symptoms are serious enough, or the person you see won't be someone of your choice necessarily.

collywobble · 27/09/2020 09:21

Thank you @JinglingHellsBells I think after the last week I may just forget hrt altogether as I've never felt so down and can't afford the private referral unfortunately. My symptoms were only mild to start with.

OP posts:
BigButtons · 30/09/2020 09:00

@collywobble
I am progesterone intolerant and have been taking utrogestan since last December.
I started off orally but found I would bleed before the end of the course so decided to use it vaginally.
I can’t do more than 10 days, often I do 7-8 days with 200 mg a night. I get a good bleed from this. This month I thought I should try and stretch to 12 days but have woken up this morning to a heavy period on what would be day 10. I will stop using it until next month.
What I have found with utrogestan is that each month I react to it differently. Sometimes I get sore boobs, sometimes not. I always have aches and cramps though. It was the same when I had the dreaded mirena and was even worse on femostan.
I try and take it for the minimum time to get a good bleed. Actually 200mg for 7 nights seems plenty. I wish I could afford to go private as I believe then you can take even less and have the comfort of regular scans.

JinglingHellsBells · 30/09/2020 16:59

@BigButtons 7 days @200mgs is the absolute minimum. There was a case of a woman on another forum who got hyperplasia using that (under a consultant) so you don't want to go to anything less. The dose is actually 12 days so 10 is lower (I use that but not every 4 weeks- go longer) and 7 is cutting it fine.

Lollypoppyflop · 01/10/2020 12:46

I’m on 7 days Every month 100mg Utrogestan. I have a very experienced GP who is highly thought of by friends who also receive hrt.

JinglingHellsBells · 01/10/2020 13:07

But being 'highly thought of' means he is prescribing outside the licensing guidelines and laying himself wide open to being sued if any woman has side effects @Lollypoppyflop

That is not the right dose. The dose is 200mgs daily for 12 days. Sometimes it can be reduced to 10 days.

Using half the dose (100mgs) for almost half the duration ( 7 instead of 12) is a double whammy of under-prescribing.

Do you appreciate the possible risks?
Is he backing up this regime with an annual uterine scan to check all is okay?

Lollypoppyflop · 01/10/2020 13:27

She follows professor Studd guidance. As far as I know it’s not unusual for people with progesterone intolerance to be prescribed this regime. I’ll raise it at my review. I’ve only just taken my first dose of progesterone today. She did say it would require adjusting based on my personal experience. I’m confident she is qualified to make the right decision for me. I’m grateful for the advice and will definitely raise the Concerns around dose and scans.

BigButtons · 01/10/2020 13:47

Certainly there are many people on menopause matters who are under the care of Prof Stud and who are on this regime. I have read articles on his website where he talks about this.
My bleeds now that I am utro are much more akin to the light bleeding that I had on the mirena- bright red but no clots( I bled constantly all the time it was in.)-Hmm Annoying I often bleed twice a month now but both times lightly.

JinglingHellsBells · 01/10/2020 13:54

Maybe you or she have not seen the update on this?
Studd has retired now.

There was a post on Menopause Matters forum a while back- a year or two ago- from a woman who was seeing Studd and using the 7-day regime. She had developed hyperplasia and it was cancerous. After that, he stopped prescribing 7 days and went to 10 days- and it's always been 200mgs not 100.

The 100mgs is for women using it daily (on a continuous regime) OR sometimes if they use it vaginally (as some research shows it's absorbed better.)

It's not a case of her 'being qualified'- it's what is legal and within the legal obligations of her role as a GP.

I am sure her intentions are good BUT she is at risk professionally and she is putting patients at risk.

A consultant can choose to prescribe off-label as they are taking personal responsibility for the dose, based on their training and professional role. My own dose is off label but that's because it's a private dr, who can arrange scans for me if necessary, even as a precaution (and I pay for those.)

The NHS won't do that. A GP is on very dodgy ground following a consultant's way of prescribing because they are not a private consultant , they don't have the training, and they aren't offering you annual NHS scans to check all is okay. To request a scan they would have to admit they were prescribing outside the licensing- which is not allowed as a GP.

Sorry if this sounds heavy handed, but it's a bit worrying and I just wanted you to know what the situation was.

If you feel you are intolerant to Utrogestan I can recommend good consultants or menopause experts who can help.

JinglingHellsBells · 01/10/2020 13:55

@BigButtons Not any more!!! Read my previous post.

JinglingHellsBells · 01/10/2020 13:57

Annoying I often bleed twice a month now but both times lightly.

This is not right.

If this happened to me, my consultant would want to investigate and get to the bottom of why.

The reason possibly for the 2 bleeds is either you lining is not coming away fully once a month as you are using too little Utrogestan, or it's not being absorbed properly so this is breakthrough bleeding.

You do need to adjust the regime to stop this as long term it might cause problems.

Lollypoppyflop · 01/10/2020 14:05

Jingling I appreciate your advice but can I ask if you are qualified? I will definitely raise your concerns at my review and take on board what you’re saying.

BigButtons · 01/10/2020 14:06

I use it vaginally and will always start bleeding before the end of the course.
I think that my own cycles are still having an effect though. When I went on HRT my periods were still pretty regular, perhaps only missing the odd one here and there. but they would come every three weeks and this is what is happening now.
Of course there is the possibility that the progesterone- both the extra I am taking and my own- is keeping my lining thin hence the scanty bleeds. Prof stud says on his website that he would expect a woman using utro to have a scanty bleed each month.

BigButtons · 01/10/2020 14:08

Btw I am quite happy to go up to 12 days vaginally and see if that makes a difference to the bleeds. I have done this this month. I started to bleed on day 10 but have kept taking the unto at night anyway.

BigButtons · 01/10/2020 14:09

I have always taken 200 per night.

Deux · 01/10/2020 14:11

I’m progesterone intolerant too and had a bad experience on utrogestan. I was using the 200 mgs orally and haven’t tried it vaginally. Horrible pmt to the power 1000.

I’ve since been using cyclogest pessaries instead on a long cycle 4x a year

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