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Author Topic: JAYDESS- Any Experiences? (Updated)  (Read 920 times)

Optimist

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Yes please Rae123-would love to see the leaflet. Hope youíre getting on well so far with the Jaydess. Can I ask what oestrogen youíre on please? X
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Mindfulmoomins

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Following with interest and would love to see the leaflet too x
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rae123

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Would love to post leaflet but can't see how to upload photos- any tech help appreciated!
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Optimist

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Hi Rae123.
How are you getting on with the jaydess?
I had the Mirena fitted 31st jan and am using 4 pumps of oestrogel as already trying to oppose side effects.
Increased urination, volume and frequency and insomnia again although not sure if thatís more work stress related. I slept like a baby first 8-10 days on 2 pumps am, 1 pump pm, then started waking at 3.30am couldnít get back to sleep. On 4 pumps (3 in morn 1 at night) now & going through til 5 ish, this morn 5.56am which is an improvement as I get up at 6.30.
Other than that I canít say Iím noticing any other side effects to date. Really hope these subside as oestrogel builds up, then Iíll be a happy lady!!
Have you noticed any of the side effects you were getting from other progesterone?
Not sure how to add attachments as I use my phone, could try taking a picture and uploading on a post?
Hope itís going well so far for you?
Optimist x
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rae123

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Re: JAYDESS- Any Experiences of Jaydess/Mirena? (Updated)
« Reply #19 on: February 17, 2018, 12:16:34 PM »

Hi Optimist

Glad you're getting on well with Mirena, not sure if the insomnia might be a side effect of the extra oestrogen or if its the Mirena, what do you think? My sleep has been OK since I've had Jaydess.

Unfortunately, it's not going too well for me otherwise though. I have exactly the same symptoms of progesterone intolerance I had with Utrogestan, except they are every day instead of once a month  :-\ I've had constant heart palpitations and feeling breathless, constant bleeding, tiredness and irritability (off the scale!) and weeping (for no reason). It's been a huge struggle to control myself dealing with my teenage daughter with learning disabilities, who is pretty challenging. I normally am pretty calm and level dealing with her (and even find some of her quirks funny sometimes) but I am constantly having to restrain myself from snapping at her and it's making me feel suicidal.

I called the hospital where I go for HRT this week but none of the staff I've seen before were there, spoke to a rather unsympathetic Dr who said that this is normal with the IUD and it should go away after about a year once the levels drop off and stabilise (!). She was also at pains to tell me  about the several 'successful' women who have had this treatment and that I should just persevere or I would have to go back to Utrogestan. Apart from he fact that I don't like feeling guilt-tripped into continuing with a treatment that is making me feel bad, I don't buy the progesterone levels reasoning.

I think probably quite a few people on here will be a lot more up on this than I am. From what I understand, if somebody is progesterone intolerant, their progesterone levels don't make much difference and are often normal, which is why i take issue with what I was told by the Dr on the phone. Even if my progesterone levels come down, there's no reason to assume I will feel much better.

Either way, I think I've pretty much decided this is the wrong treatment for me, feeling how I do, I can't see myself getting through next week, let alone the next year. Called GP but they don't have anyone qualified to remove a coil apparently and the local contraception clinic has shut down so will have to hunt around for somewhere to get it done.

After this, I pretty much feel like abandoning HRT all together now as it's meant to be helping but just feels like its created extra problems.

At the moment I'm feeling worse every day, especially the mental symptoms. This is really scary to me as I am normally pretty happy & level-headed. :'(

Its helpful to not feel alone in this, I wonder if any of you have experienced similar?

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Mary G

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Re: JAYDESS- Any Experiences? (Updated)
« Reply #20 on: February 17, 2018, 07:13:58 PM »

rae123, I'm really sorry to hear that your Jaydess coil experience has not got off to a good start.  I had high hopes for you and really thought you would be onto a winner. 

Before you have it removed, it would be worth giving it more time and increasing your Oestrogel dose to try and offset the side effects from the coil.  What dose of gel are you currently using?  If you are not already doing it, it would be a good idea to split the dose to keep your oestrogen levels even.

There are different levels of progesterone intolerance, mild, moderate and severe and for those of us who are severely progesterone intolerant, the choices are very limited indeed and we are not getting the help we need.  What exactly are we supposed to do?  We can have a hysterectomy but that is a major operation with a long recovery time so what are the other options?

Apart from the Professor Studd regime of 100mg Utrogestan for 7 days (with regular scans) there is nothing else available.  There is Duavive for post menopausal women but it contains a very low dose of conjugated oestrogen. 

I really do think it is time the medical profession did more research and came up with some viable alternatives.  Just finding different ways of telling progesterone intolerant women the same stuff over and over again isn't cutting it and is not going to suddenly make us able to tolerate progesterone used in HRT preparations.  Strangely, I was never intolerant of my own progesterone pre-menopause, this problem only surfaced when my oestrogen levels dropped and suddenly I was intolerant of all artificial progesterone. 

I do think the Jaydess would work for women who are mildly/moderately progesterone intolerant but that doesn't help you.  I am really sorry that you are considering giving up on HRT altogether but understand that you can't put up with those symptoms long term, particularly while looking after your daughter.

I have two suggestions if you have the coil removed.  First suggestion would be to try the Professor Studd 7 day 100mg vaginal Utrogestan regime with regular scans - this should be available to all severely progesterone intolerant women on the NHS.  The second suggestion is one I am currently working on myself which is an endometrial ablation (much less drastic than a hysterectomy with virtually no recovery time) and a long 3 month progesterone cycle.  This could be the difference between being able to remain on HRT and having to ditch it completely.  My personal view is that only having to take progesterone every 3 months would make the whole thing much more bearable. 

I'm running out of ideas. 
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