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[rae123]

Hello

Please let me know if this is the right place, I've searched but couldn't really find a thread about Jaydess. I am 47 late peri, started at 39, taking Oestrogel 2 pumps plus Utrogestan 200mg for 7days per month. My main problem is out of control PMDD when I take Utrogestan, I literally change from being pretty level-headed moodwise to feeling suicidal and crying/ shouting a lot every month when I take Utrogestan. I've had to literally talk myself out of jumping under a tube twice while taking Utrogestan which really scares me. I've felt generally better taking Oestrogel as I was exhausted and low mood all the time before starting HRT. I've also had to have polyps removed  recently so the Meno clinic want to change my HRT (as do I as I worry I might do something when I'm feeling this bad). They've suggested Jaydess, I'm a bit reluctant because 1) I don't think I could cope if the Jaydess gave me the same symptoms but all the time instead of 7 days out of 28 2) lots of very negative reviews of Jaydess/ IUDs on Google. I feel I'm running out of options though so I don't really have much to lose by having a go with Jaydess. I'm also increasing Oestrogel to 4 pumps.

Sorry for long post, I'm really interested to hear from anyone who's had similar experiences with Utrogestan and/or any experiences of Jaydess used for HRT

[Mary G]

First of all don't worry and join the club, many of us on here have problems with Utrogestan.

Problems with the progesterone component in HRT comes up on here all the time and apart from unsympathetic and clueless GPs, it is probably the most debated subject.  Were you using the Utrogestan orally or vaginally?  It has fewer side effects when used vaginally at the lower dose (100mg) but if you have had a bad reaction in the way you describe it would be better to keep away from it completely.  The only way I can tolerate Utrogestan is to take a very low dose vaginally for just a few days every 5-6 weeks - I can just about cope with that at a push.  Any more than that and I am in serious trouble, not least with silent migraines but luckily that dose is enough for me and I do have regular uterine scans. 

There isn't a thread on the Jaydess coil but I think we need one.  I mentioned it on here the other day when a progesterone intolerant member asked about the Mirena coil which has a higher dose of progesterone than the Jaydess.  The Jaydess can be used for HRT purposes off licence and I think for many women the lower dose of progesterone could make a real difference. 

It could be worth a try as long as you keep your oestrogen levels high and 4 pumps of gel is a good idea.  I had a Mirena coil without adequate oestrogen and it was a nightmare, not least because it caused overthinning of the womb lining, mild VA, constant urination and silent migraines.  Had I used Oestrogel it might have been a goer but I would not risk it now. 

One other thought - and this is something I am considering myself - is having a uterine ablation.  That way, you could do a very long cycle of 3 months and you would not have a bleed to contend with.  You would still have to find a progesterone you can live with but at least you could take a low dose every 3 months.

I hope that helps.

[Optimist]

Hi rae123 and Mary G-another interesting post and I really feel for you both. Mary G it was me who's post you mentioned re jaydess. I did quite a bit of research and as rae123 said the horror stories with the side effects for both are not good. However they appear worse for jaydess which has tipped me to trial the Mirena. This may be that not enough I'd jnown about it for menopause though. Additional side effects listed are chronic acne and cysts alongside weight gain, depression, hair loss etc I'm really nervous and reluctant but feel if I don't give it a go I'll be forever wondering.
I'm also worried about pelvic infection as I had two serious bouts (one hospitalised for 12 days with peritonitis following a colposcopy) but I will ask for prophylactic antibiotics.
Mary G what dose/type of oestrogen were you on at the time as you said it wasn't enough and you feel a higher dose would maybe have worked??
Has anyone else had side effects (due to progesterone problems) but that have settled with oestrogen?
Hope you don't mind the questions ladies and please keep updating if you do try jaydess Rae123 xx

[Mary G]

Optimist, I was using a 50mcg patch with the Mirena at first and then worked my way up to 100mcg and it was still no good.  Blood tests revealed woefully inadequate oestrogen levels so I was not absorbing the oestrogen from the patches.  I really wish I had tried Oestrogel with the Mirena because I think it would have worked much better - I absorb the gel very well and get good blood levels with it. 

If you are not severely progesterone intolerant it would be worth trying the Mirena but I would strongly urge you to use Oestrogel with it because from my experience, it will be easier to achieve higher levels of oestrogen which should help to combat any side effects from the progesterone in the coil.  As you know, some of the progesterone does get into your overall system with a Mirena and can cause side effects and you don't want it be become dominant and undo all the good work the oestrogen does.  To give it the best chance of working, you need as much flexibility as possible and with the gel you can quickly and easily adjust the dose up or down as required.

It's time someone invented a hormone free coil that stops the womb lining building up. 

Have you considered progesterone free Duavive?  It contains a low dose of oestrogen which might be a problem for you but worth looking into perhaps?

[Hurdity]

Hi rae123

 

Yes there have been threads on and mentioning Jaydess! There is one!

Here is the first one in 2016 - and I did some investigations as to concentration etc here:
https://www.menopausematters.co.uk/forum/index.php/topic,33744.0.html - I'll bump it....

There were further discussions here:
https://www.menopausematters.co.uk/forum/index.php/topic,33744.0.html

... and then 6 months later in May 2017 here:
https://www.menopausematters.co.uk/forum/index.php/topic,35826.msg574206.html#msg574206

and mentioned here:
https://www.menopausematters.co.uk/forum/index.php/topic,36837.msg590373.html#msg590373

Hope this helps

Great that the Menopause clinic are recommending this option instead of Mirena - may I ask is this a private or NHS meno clinic and if the latter we would all be very interested that this is now being prescribed as part of HRT on NHS!

Optimist - the side effects from Jaydess are unlikely to be worse than for Mirena - remember you are reading subjective comments! The dose of levo.. is much lower (with Jaydess) if you have a look at the threads so there is systemic concetnrations are lower from the start and reduce over time as with the Mirena. As far as I understand they operate in exactly the same way. In your position and thinking about trialling a coil I would definitley ask for Jaydess if the clinic is prepared to prescribe it! You can be our guinea pig    ...... 

Hurdity x

[rae123]

Hi All & thanks for your helpful replies!

MaryG, I'm on Utrogestan 200mg used to take it orally and now vaginally but tbh I didn't notice any difference apart from it felt like it took a day or two for the symptoms to build up as opposed to it starting straightaway. I've tried to persevere but it's making me miserable- like PMS XXX! I've not heard of Duavive, I will ask when I go back. I've been told to go up to 4 pumps of Oestrogel (have been on 2), apart from sore boobs, I feel OK with that. I had a blood hormone test last week and they said that the progesterone levels were high but Oestrogen not as high as they could be. On the other hand, the gynaecologist who removed the polyps said I had too much unopposed oestrogen, doesn't seem to make sense.

Optimist, have you started your trial of Mirena, I'd like to know how that goes? I'm having the Jaydess 'fitted' (gah!) on Friday. I find internals really painful so not at all looking forward to it but it will be worth it if it improves the Utrogestan nightmare...

Thanks for all the helpful links Hurdity- and yes it is an NHS clinic (West London). I think they have just started prescribing Jaydess off-licence for HRT with severe progesterone intolerance (and having looked at the threads, there are a lot of us!), I have a leaflet from them. I think they will do one or two yearly scans with it to check the womb lining thickness. I'm having it done on Friday, so I will let you know how it's going.

[Mary G]

rae123, I would definitely go ahead with getting the Jaydess fitted on Friday and don't forget that if for any reason you don't get on with it you can very easily have it removed.

If you can cope with that high dose of Utrogestan (admittedly with difficulty) then I am sure you will easily cope with the Jaydess.  If you combine it with Oestrogel, you can very easily adjust the dose to suit your needs and quickly increase or decrease as needed to get to a level that works for you. 

It's good that your clinic is being flexible and taking steps to help women who are progesterone intolerant and prescribe off licence.  Hopefully more places will follow suit.

Duavive contains a low dose of oestrogen so if I were you, I would try the Jaydess first.

Good luck and please start a new thread charting your progress!

[Optimist]

Hi all, Rae123 let us know how you get in with jaydess-are you having patches or gel for your oestrogen? my menopause clinic GP advised the Mirena, she doesn't appear to think that I have a progesterone intolerance! She stated you're just having a bad time with the menopause, however 2 weeks with oestrogen only resolves all of my symptoms !! I'm having a telephone consultation Wednesday with a gp at my practice regarding the Mirena. I will ask if she knows about jaydess and also oestrogel instead of patches. I'll let you know how it goes.
Hurdity, thanks for links will read them. I know we only get to read the horror stories mostly with meds and jaydess is fairly new still but the thought of breaking out in acne etc which I've never had is scary prospect but maybe oestrogen would override most of the side effects. Will update xx

[Hurdity]

Optimist - the links are only to other forum threads but hopefully the discussions are useful.

rae123 - I imagine this is Nick Panay's clinic as I think someone mentioned that he prescibes Jaydess now? GREAT that you have been referred on NHS! Also just to mention that the oestrogen component of Duavive is Premarin ie made from horse urine - yes that one - which, as well as being low dose, rules it out for many women - and it is not comparable with bio-identical estradiol in most of the other HRT types.

We will all be waiting for you to update this thread with your experiences rae123!

Hurdity x

[Optimist]

Just to update after telephone consult;
Having Mirena fitted 31st jan and will ask re oestrogel to titrate the oestrogen if needed.
Gp uncertain though if I'll be able to have it fitted as I've had work on my cervix previously!
She hadn't heard of the jaydess so very unlikely would prescribe.
I've printed off loads of info from here to discuss with her to be given gel over patches as I don't feel I absorb them so well.
Rae123 hope the fitting went well yesterday? Please update when you can and fingers crossed this works for you!!
I'm absolutely poooing myself tbh re having Mirena fitted but I've spoken to a lot of people who have had very positive experiences so will trial and update. Thanks for advice ladies xx

[LucyLoo]

Hi there,

I'm in touch with a lovely lady I met on a severe PMS forum who has the jaydess with 100mcg oestrogen patch and she says it's been a lifesaver for her. She goes to Nick Panay's PMS clinic. She really struggled on utrogestan too and decided to try the coil. She was originally going to have the mirena fitted but when she went to her family planning clinic to have it fitted they offered the jaydess as she hasn't had children and I believe it's marketed as a coil for younger women who've not had children as it's smaller than the mirena. She decided to go for the jaydess and told Nick Panay's team afterwards who said it was fine but that they'd need to keep an eye on her womb lining via scans. She feels it has been the best option for her and despite a few small niggles (which she thinks were her own hormones playing up in the background) she has no progesterone intolerance symptoms now. It has given her some acne on her back and chest but she feels this is worth it as she feels lot better than when she took the utrogestan. I hope this positive feedback gives you hope Optimist and rae123.

I am on Prof Studd's regime for severe PMS and oesteopenia and I am very nervous about taking utrogestan (haven't got to that part yet!) The mirena / jaydess is my plan B so I'm really interested to hear how you get on. Best of luck x

[Optimist]

That's encouraging lucyloo...thank you. I will ask when I go for fitting re jaydess again but I doubt they'll give me that unless requested by specialist (who doesn't seem to think it's a progesterone intolerance I have) as it's not licensed yet for hrt in UK apparently. Some ladies are lucky in that their medical professionals seem to be aware of this and are willing to triall it. I'll likekh have to go through the motions with the Mirena but I will try to be positive and hope it works xx

[Scotdownunder]

Hi Rae123,

I could have written your post the middle of last year. (Apart from polyps). Was referred to Consultant as oestrogen made me feel fantastic but adding progesterone dipped my mood until I became suicidal....very scary how much our brains are impacted by hormones.

She prescribed Duavive which is an old style oestrogen (horse pee!) with an oestrogen reuptake inhibitor. In effect it stops the oestrogen acting on breast and uterus, to reduce cancer risk.

If I forget to take it my OH can tell, it is a low dose, and while I wish they made it stronger as my periods tail off, I would hate not to be on it at all. It has evened out my mood swings, I'm nicer to live with and mostly sleep a little better. Would have preferred to take nothing at all, but was not going to be an option with work and family life! It does keep me sane.

[rae123]

Hello

Thanks for all your replies

Optimist- I have a leaflet about prescribing Jaydess off license which I could put up here if that's any help- are you near any menopause clinics, they could maybe do this instead of GP?

LucyLoo- Can I ask, are you taking the regime for PMS or for menopause? It's very interesting for me to discover the Utrogestan link and PMS as I have been suffering from severe PMS, diagnosed now as PMDD most of my life and had no idea that this hormone was responsible until I started taking it as part of HRT. I think I believed when I was young that everyone went through this as well as awful painful heavy periods as my sisters were the same and people didn't really talk about it then, you were just expected to 'get on with it'- what a joke! Still, I'm glad that medical professionals are taking it seriously now.

Hurdity- yes it is Nick Panay's clinic, it's one of the teaching hospitals near me, I see now that we're lucky to live near here as they do a lot of the menopause/PMS research, I'm not sure if you can be referred from other areas but I guess it's a long way to come and a long waiting list too

Scotsdownunder- it's good to know I'm not alone in hormonal hell! Are you taking any progesterone and is the duavive for menopause symptoms?

I did have the coil fitted last Friday so I will update this thread later on (its long!)

[Hurdity]

rae123 - it would be really helpful to us all to have links to a leaflet on prescribing Jaydess off licence as I am sure other women might want to try it if possible - until its use for this purpose (HRT) is more widely prescribed.

Hurdity x