Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: rae123 on January 11, 2018, 03:09:47 PM
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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
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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.
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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
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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?
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Hi rae123
:welcomemm:
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 ::) ...... ;D
Hurdity x
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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.
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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!
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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
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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
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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
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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
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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
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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.
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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!)
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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
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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
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Following with interest and would love to see the leaflet too x
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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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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
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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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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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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
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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
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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.