Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[CrispyChick]

Anyone that recognised uses my profile will know what hell I'm in, and have been through for the last 7 years. Anyone that doesn't - to cut a long story short, I'm in hell 24/7.

Noone can say if my symptoms are all hormonal or not. But, my more 'normal' peri symptoms are now off the scale. I spent all last month with low E symptoms, culminating in my longest cycle ever and my first missing period. But this month my E has clearly skyrocketed. And I'm still in hell.

Seriously wondering about trying zoley pill to try and shug down and give steady dose. But then, chem meno resulted in even more torture to my poor system. So not sure zoley is a good idea.

A few tears ago I tried every other coc under the sun. The higher E ones caused migraines. The lower E ones didn't control my symptoms, the androgenic progestins crucified my mood.

I guess my biggest worry is putting in 1.5mg estradiol. Much higher than hrt - which makes me feel worse. And, my age - nearly 49. What age can you take coc pill until???

Anyone on zoley?? I'm sure bombshell will come by with some info, which I'll appreciate  .

Anyone else on it? Tried it? Please post. X

[bombsh3ll]

Yep, I take Zoely and am really happy with it!

I take the active pills only with no break, and for me it is brilliant - no bleeding whatsoever and nice stable hormone levels, the same every day.

It isn't a high dose of estradiol - it falls between the 1mg and 2mg that are in Femoston which is licenced for MHT.

In France there is a MHT preparation with 1.5mg estradiol and cyclical NOMAC, which is the same progestin in Zoely.

My estradiol level on Zoely is around 400pmol/L. A small proportion of this will be endogenous as whilst it effectively suppresses ovulation, there is still residual release from the unrecruited follicles in premenopausal women.

I'm 45 and plan to take it until 55 then swap to licenced MHT when menopause can be reasonably assumed.

It only has a contraceptive licence until age 50, but since that has nothing to do with why I take it, my use of it has been off label from the start.

The FSRH state that use of a combined pill for a therapeutic indication ie non-contraceptive use is an individual clinical decision beyond the age of 50.

However I have to pay for mine anyway, I don't know if the NHS would support it beyond 50.

I would definitely give Zoely a try, you have nothing to lose.

There was also a big study in 2021 which showed that the thrombotic risk with Zoely is about half that of the next safest combined pill with levonorgestrel. What the authors failed to mention but looks to be the case from the numbers is that the rates of thrombotic events on Zoely are not significantly greater than the background population.

[CrispyChick]

Thanks bomb.

I appreciate your input and I knew you were on it. I'd have to buy it anyway, as it's not available in Scotland - I seem to recall you being a fellow Scot.  . I've spent that much money on this hell, that buying a pill doesn't even make me blink!

Ok. Yes, I see your point on dosage. My brain was stupidly comparing to patches. What can I say, the fog has been bad today.

I think it sounds amazing on paper, but for me, in practice, it'll probably be another hell. I couldn't even take Slynd to try and shut down.

It was 1mg femodene that caused me to feel dreadful when I first tried HRT.

So - is it the progestin alone that causes the shut down? Or is the estadiol involved in that too???

Do you know how long it takes a cycle to be suppressed on a pill???

I would definitely give Zoely a try, you have nothing to lose.

Unfortunately that's not the case for me.  I stand to lose 4 months of trying nothing and letting my hormones naturalise (I can't use the word balance, it's just not appropriate in this context!). Every single thing I tried last year made me very very ill, including the mini pill. But, me on nothing is not looking nice at all. 

I'll give it some real thought. Hopefully others might be successfully on Zoley too.

Can I ask where you buy it from?  Thanks x

[bombsh3ll]

https://pubmed.ncbi.nlm.nih.gov/21332383/

It's the progestin that shuts you down.

The estradiol is added back for quality of life and protection of bone and cardiometabolic health.

Depending on where in your cycle you start it, I would allow at least 2 weeks to start to benefit from the suppressive effect. If you have a stubborn follicle it could take longer.

When I started it I was already shut down on 150mcg desogestrel - this is essentially just taking an equivalent dose of progestin without any estrogen added back.

I did not have any symptoms of low estrogen on this, however my plasma estradiol level was around 100mmol/L which was not acceptable to me long term from a health perspective.

I believe Zoely has a half life of around 36 hours so it could take several days to leave your system.

If you are concerned about tolerability you could halve or even quarter the pills - this wouldn't shut you down but would mitigate against any potential adverse reaction. If you tolerate it you could then gradually increase to a full dose at your pace.

I get a private prescription from my GP which I fill at my local chemist. They are happy for me to take Zoely, it is just not funded by the NHS in Scotland.

As it is indicated therapeutically in my case both for syncope reduction (I pass out frequently with menstruation due to dysautonomia) and ovarian cancer prophylaxis (supported by the genetics clinic post BRRM), I hope I will be able to get it this way until I reach menopause, however if they can't prescribe it beyond 50 I will get my daughter to obtain it on my behalf.

[joziel]

Crispy, I can't say anything about Zoely but just generally speaking, I've learnt not to second guess what's going to happen and just to ploddingly trial and test every combination of everything....

For eg, my symptoms BEGAN after I started HRT (the really bad night time ones with insomnia and inner tremors and hypnic jerks etc). They then appeared to get worse with each dose increase. But stopping HRT didn't see them go away. So I restarted and this time they didn't get worse with each increase, and I decided to go higher and higher..... until now I have estradiol between 650-850 and I am able to sleep the best I have since this all began.

So really it all makes no sense when you try to figure it out logically with X=Y stuff, and in your situation I'd suggest just trialling every damn thing. If nothing else that gives you hope. Which is important. I hope you figure something out. I am not 'perfect' with sleep yet and things are not back to how they were before all this, but it is now 'manageable', which makes a massive difference.

[Lclegg002]

Morning ladies, hope you don’t mind me coming in on your chat. I was just interested by this as have also been wondering if Zoely or Qlaira (think they’re similar) would be better for me. The doctor said they’re contraindicated for females with migraine with aura (which I have) but quite frankly I can’t feel any worse than I do now so happy to take the risk. What was interesting though is you say it’s the progestin that shuts down the cycle. So I’m on Slynd which presumably does the same thing so then it’s just a case of topping up with Estrogen. I say just but it’s really not the right because I have been trialling various HRT doses for over 2 years now and nothing has helped. I just had a blood read of 82pmol on Slynd with no HRT and think I prob do need some Estrogen as doctor advised this is very low and my fatigue has been off the scale and my mood rock bottom. I just can’t seem to get the dose right. Been on Slynd for 4 months,  but was finding when I was taking estrogen with it initially (1-2 pumps) my boobs were heavy and sore and I had high estrogen symptms. Does it take a while for Slynd to switch off your ovaries do you know and maybe now, 4 months in, I would be on a more even keel to try adding some back in… ie could I match what Zoely does? Any idea how many pumps would equate to Estrogen in this? I feel desperate right now, there has to be an answer out there for us Crispychick, I refuse to believe this is now our life  :'(xx

[CrispyChick]

I dunno, I'm afraid I'm kind of in the giving up camp right now.

I can tell my estrogen is sky high this month. My boobs are rick hard and painful. I rarely get that. My dizziness is off the scale right now. I'm having a horrid time. Last month I was full of lie E symptoms. But still my awful poison and flu comes through it all. Maybe it really is ME/CFS with peri on top. 

I'm not sure if I'm ready to brave zoley. I've spent the last 4 months touching nothing hormonal and my body has needed that. If I start messing again...I spent all of 2024 trying different hormonal things and it's been the worst year yet. 😔.

See, this is it LClegg - cerazette no longer shuts me down. My E on it was in the 400s. Then slynd made me feel really bad. Nothing seems to work. 💁

[joziel]

Did you try doubling the Cerazette/desogestrel crispy?

Clegg, it's very very very normal to have sore and heavy boobs when you first begin any HRT. They are not 'high' estrogen symptom, so much as your body getting used to having estrogen again after not having had it for so long. They go away for the vast majority of women within a few months....

[bombsh3ll]

Yes Slynd if taken every day will shut you down in the same manner as Zoely, it just doesn't contain any estrogen.

I cannot comment on Qlaira because this contains dienogest which acts somewhat differently to other progestins and doesn't shut you down at the level of the hypothalamic-pituitary axis. I believe it acts directly at the ovary, and I am not certain it can be recommended for menstrual suppression. It is also not monophasic, so the dosing of estrogen is quite chaotic.

So if someone tolerates Slynd (which I would not as it is a diuretic, however others love it for this), they could just take a separate estrogen product alongside.

It is difficult to say a particular transdermal dose equates to x milligrams of oral as we all absorb and metabolise differently.

However based on dose finding studies which measured plasma levels on various doses, and my own personal experience, I would consider the 1.5 mg in Zoely as approximately equivalent to a 75mcg patch.

I have no personal experience with gels but the BMS appear to consider 2 pumps as roughly similar to a 50mcg patch.

[Lclegg002]

Please don’t give up Crispy, I know how you feel, I planned how I would end my life last week I was so depressed and desperate. I feel utterly alone and lost most days but something keeps me going. I think it is definitely worth trying the Zoely, this might just be the one. Or, as Joziel suggested, there is doubling up the desogestrel which I did last year for a while as I can’t tolerate utrogestan and my Estrogen did come down.
I understand the utter despair and desperation, I really do  xx

[Lclegg002]

Thank you Bombshell, that is really helpful  I have put on a 50mg patch as my mood has been utterly awful and will see how that goes for a month or so. If I can keep it on for a month without panicking and removing it because my high estrogen symptoms kick in it will be a miracle. Some of us ladies just really need a break!  xx

[bombsh3ll]

Regarding desogestrel, if you are using it either as endometrial protection OR with the aim of shutting down your own cycle, the daily dose is 150mcg.

This means taking 2* cerazette/cerelle pills.

Whilst some women cease bleeding on the contraceptive dose of 75 mcg, there is still some follicular activity, and some can develop a hormonally active cyst like I did - my estradiol was off the charts, consistent with about 12 weeks gestation!

So I would only ever recommend the single dose of cerazette for those without any complex needs who purely require birth control, not for any therapeutic indication.

[CrispyChick]

  So, excuse my ignorance.

But if cerazette doesn't shut you down at normal dose, but is a pretty failsafe contraceptive - how do we know this progestin dose in zoley shuts us down??? 

I'm so sorry you've been feeling that way LClegg. I get it. I really really do. I was sent to an emergency phsyc last month. 

[bombsh3ll]

Dose finding studies - see above link re nomegestrol acetate.

Similar studies have been conducted with desogestrel - Wikipedia has some useful information on this.

The contraceptive dose is always less than the dose required to achieve full ovarian suppression.

Desogestrel is used at a dose of 150mcg in combined contraceptive pills such as Marvelon, where suppression is aimed for.

[CrispyChick]

Ah, righto. Cheers.