Please login or register.

Login with username, password and session length
Advanced search  

News:

Please have a look at the questionnaire page if you have a spare minute.

media

Pages: 1 [2]

Author Topic: JAYDESS- Any Experiences? (Updated)  (Read 7337 times)

Optimist

  • Member
  • *
  • Posts: 210

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

Mindfulmoomins

  • Member
  • *
  • Posts: 289

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

rae123

  • Member
  • *
  • Posts: 11

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

Optimist

  • Member
  • *
  • Posts: 210

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 that's 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 couldn't 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 can't say I'm noticing any other side effects to date. Really hope these subside as oestrogel builds up, then I'll 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 it's going well so far for you?
Optimist x
Logged

rae123

  • Member
  • *
  • Posts: 11
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?

Logged

Mary G

  • Member
  • *
  • Posts: 2418
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. 
Logged

Optimist

  • Member
  • *
  • Posts: 210
Re: JAYDESS- Any Experiences? (Updated)
« Reply #21 on: February 19, 2018, 10:13:52 PM »

Hi Rae123, so sorry to hear this. I also had high hopes for you! Sorry you've had such a negative experience with the health professionals recently also who clearly don't understand. What were your symptoms prior to hrt that made you decide to try?
Maybe try what MaryG has suggested if you're going to have the jaydess removed?
I know when I first started femoston conti I was really low but it subsided after 3 weeks. On the Mirena I'm feeling irritable quite a lot so far, not getting on great with OH as don't seem to have much tolerance and sometimes feel quite low but trying to persevere to see if these symptoms resolve soon. Have been quite sensitive also. Also quite a bit of hair in bath/shower  again which had stopped on the other progesterones. Sleep improving mildly. I have also been spotting daily. Am really hoping all of these side effects will resolve soon and that this one is okay, really hate feeling low when I haven't been too bad for quite a while now though.
Have you tried 4 pumps of oestrogel or do you feel you have too much?
I'm on the maximum oestrogel and don't really understand the science behind it. Maybe you know this MaryG? Does it build up to a steady state in your body or is it like the patches and only lasts so long in your system until you top up again?
Let us know what you decide Ray123, please don't feel guilty re your daughter. You can't unfortunately control your hormones while trialling new meds. Have you ever tried mindfulness? If you feel you are getting worse on a daily basis this may well not be right for you and you could try a sexual health clinic near you to have it removed then maybe give your body a bit of a break from progesterone to see how you feel on oestrogen only, which could help your decision to try utrogestan for 7 days?
Keep posting to update xx
Logged

Optimist

  • Member
  • *
  • Posts: 210
Re: JAYDESS- Any Experiences? (Updated)
« Reply #22 on: February 19, 2018, 10:19:03 PM »

Sorry Rae123 just re read your first post and realised you've already tried the 7 day utrogestan hrt. I'm so sorry I don't know what to suggest. Maybe if you're still peri it's your own hormones still reacting with the synthetic? Maybe try some herbal remedies and revisit hrt later down the line? Not much help I know 😕 x
Logged

Mary G

  • Member
  • *
  • Posts: 2418
Re: JAYDESS- Any Experiences? (Updated)
« Reply #23 on: February 20, 2018, 06:55:53 PM »

Optimist, as far as I know, the gel needs to be topped up every 24 but splitting the dose by 12 hours should help to reduce any hormonal dips.

If you have a Mirena coil and have issues with progesterone then you need to be on a high dose of oestrogen to counter any side effects from the progesterone in the coil - some of the synthetic progesterone does get into your overall system.  If your oestrogen levels get too low with the Mirena the progesterone will become too dominant and you could have problems with low mood, vaginal irritation and also breakthrough menopause symptoms again.  Once the coil starts running out of steam after a few years you can then reduce the gel dose but I found my coil carried on working for ages after the supposed expiry date.  When I had the first Mirena fitted in 1998 I was (apparently wrongly) told at the FPC that it would last for 10 years and I didn't have the next one fitted the end of 2005.  I now know why I felt so good in 2005, it was probably because the dose was finally about right for me!  I then hit the buffers big time when I had the new coil fitted pumping out maximum progesterone and my oestrogen levels tanked.
Logged
Pages: 1 [2]