Menopause Matters Forum

Menopause Discussion => All things menopause => Topic started by: CrispyChick on April 01, 2025, 03:14:09 PM

Title: Zoley pill
Post by: CrispyChick on April 01, 2025, 03:14:09 PM
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  8).

Anyone else on it? Tried it? Please post. X
Title: Re: Zoley pill
Post by: bombsh3ll on April 01, 2025, 03:53:45 PM
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.
Title: Re: Zoley pill
Post by: CrispyChick on April 01, 2025, 04:29:49 PM
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.  ;D. 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
Title: Re: Zoley pill
Post by: bombsh3ll on April 01, 2025, 06:18:22 PM
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.
Title: Re: Zoley pill
Post by: joziel on April 02, 2025, 09:35:02 AM
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.
Title: Re: Zoley pill
Post by: Lclegg002 on April 02, 2025, 10:33:48 AM
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
Title: Re: Zoley pill
Post by: CrispyChick on April 02, 2025, 02:28:45 PM
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. 💁
Title: Re: Zoley pill
Post by: joziel on April 02, 2025, 04:39:35 PM
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....
Title: Re: Zoley pill
Post by: bombsh3ll on April 02, 2025, 04:52:52 PM
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.
Title: Re: Zoley pill
Post by: Lclegg002 on April 02, 2025, 04:56:46 PM
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
Title: Re: Zoley pill
Post by: Lclegg002 on April 02, 2025, 05:01:53 PM
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
Title: Re: Zoley pill
Post by: bombsh3ll on April 02, 2025, 05:10:56 PM
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.
Title: Re: Zoley pill
Post by: CrispyChick on April 02, 2025, 05:27:24 PM
 ??? 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???  :o

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.  :-\
Title: Re: Zoley pill
Post by: bombsh3ll on April 02, 2025, 05:36:38 PM
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.
Title: Re: Zoley pill
Post by: CrispyChick on April 02, 2025, 05:45:05 PM
Ah, righto. Cheers.  ;)
Title: Re: Zoley pill
Post by: Lclegg002 on April 02, 2025, 06:02:28 PM
Wow, I’ve learnt more from you Bombshell than any meno specialist or doctor over the past 3 years… thank you. You have given me hope that this new regime may just work if my body behaves! I think I just need my cycle to stop as it’s the massive fluctuations that are sending me crazy!
Crispy I’m so sorry you’ve been in that situation too, im not proud to admit I have those thoughts as I  know people are battling awful things every day but the mental torment is just too much some days. My husband said it would ruin our children’s lives if I did anything like that but at my worst I truly think everyone would be better off without me. I really think it’s worth trialling the Zoely, it’s gotta be worth a shot. 🤞🏼
Title: Re: Zoley pill
Post by: bombsh3ll on April 03, 2025, 10:46:25 AM
Glad to be able to help.

Certainly if someone is suffering to that extent and there is a treatment that MIGHT help, it is worth exploring.

In terms of quality of life I much prefer to ride a monorail than a roller-coaster, hormonally speaking.
Title: Re: Zoley pill
Post by: CrispyChick on April 03, 2025, 12:26:02 PM
I'd jump on it in a heartbeat if I knew it would calm my horror show. But previous pill experiments suggest it'll make me feel worse.

Migraines, stomach issues and terrible moods are a big issue for me when trialling all the pills before.

But, I'm going to give it some serious thought as my rollercoaster matches the world's biggest. It's pure hell. The last two days have been off the scale.  >:(
Title: Re: Zoley pill
Post by: bombsh3ll on April 03, 2025, 01:40:14 PM
I would give it a go in your position.

Also, I know it's not always funded by the NHS in Scotland, but would the Nuvaring be an option?

I had a good experience with it, and it might get around the stomach issues.

Plus the gradual release rather than a bolus and knowing you could remove it at any time may be more reassuring than having swallowed a pill that you can't untake.

Migraines with aura would contraindicate this but this probably isn't you if you've been able to try other combined pills.

Apologies if this has been explored already.
Title: Re: Zoley pill
Post by: CrispyChick on April 03, 2025, 01:48:06 PM
Yeah, I tried the nuvaring as part of my previous 'try every combined pill going' phase. Moods were horrid.

Basically last year I decided I'd put up with the moods, migraines and stomach h issue and go back on the pill. It made me worse.

So why I'm thinking if trying again, I do not know. Desperation I guess.

I am so ill 24/7. With thousands of symptoms on top of my ill feelings.  ???

But thanks, appreciate the suggestions. X
Title: Re: Zoley pill
Post by: bombsh3ll on April 03, 2025, 02:01:02 PM
Well Zoely appears to have the most mood friendly of the progestins in CHC.

Dr Jayeshri Kulkarni is an Australian psychiatrist with an interest in hormone related mood disorders in women and she recommends Zoely where cycle suppression is indicated.

I hate my own progesterone, I don't know about you but I certainly find NOMAC much more benign than a natural luteal phase.
Title: Re: Zoley pill
Post by: CrispyChick on April 03, 2025, 04:30:03 PM
Nomac???

I'm not particularly scared of this progestin. It's just my body seems to tolerate absolutely nothing. Slynd, for example, made me so ill and dizzy. Something i live with anyway, but seems to be linked to hormonal changes.

So now when I add in/remove hormones this ramps up.

I've got a few things to try first. Well one left. Then I'll discuss with GP in 4 weeks. That'll be me 5 cycles off chem meno. Every one of which has been horrific. Which includes last month's low E cycle and this month's high E cycle. My symptoms come no matter what. Which suggests it's the fluctuations and changes.
Title: Re: Zoley pill
Post by: bombsh3ll on April 03, 2025, 09:53:59 PM
Slynd is a diuretic, it can make people who have no other health issues dizzy and sick. It's derived from spironolactone.

Whilst some individuals with high blood pressure or a tendency to fluid retention can really benefit from it, I wouldn't recommend it in someone with any suggestion of ME/CFS as they can have low blood volume and/or a degree of dysautonomia too.
Title: Re: Zoley pill
Post by: CrispyChick on April 04, 2025, 08:28:55 AM
Ok. Thanks. That's reassuring.

I think joziel asked if I'd tried double cerazette. The answer is no. But even when it was suppressing my system ( it did two summers ago when I retried it as I tested 3 times) I had terrible terrible moods,sinus issues, headaches and stomach issues. Doubling it doesn't sound appealing.

I'm just so utterly sensitive to everything I touch. The more I've tried, the more sensitive I've become. For example, a tiny dose of progesterone cream will send my stomach into crazy levels of pain.

The only thing to sort my stomach and sinuses and migraines is doing nothing. Which I've now done for 4 months. But I feel so ill all the time.  :( if this is hormones, it is hell.
Title: Re: Zoley pill
Post by: CrispyChick on April 04, 2025, 09:27:18 AM
So...

Have I got this right. Zoley is 1.5mg estradiol. Oral HRT is either 1mg or 2mg. So taking Zoley is like taking HRT.

Then the progestin used is what? So potent that it turns the cycle off. Whereas with HRT, even with the oral HRT comparable to zoley, this is not the case???

Have I got that right???? Thanks all those that are in the know.  ;D

Title: Re: Zoley pill
Post by: CrispyChick on April 04, 2025, 10:55:09 AM
Nearly convinced myself to try zoley.

But then, I thought back to my 18 months of pill trials.

Basically low E pills didn't conceal my symptoms. I felt bad on them. High E pills did - but I got migraines.

So, if the pills were suppressing, why did the low E ones not help? But the high E ones did?

How would the 1.5mg estradiol compare to a low E (20mg) normal pill???

Have u tested your estrogen levels on Zoley???

I know noone has the answers. But it's such a huge risk to upset my 'on nothing' progress.  >:(
Title: Re: Zoley pill
Post by: dangermouse on April 04, 2025, 11:18:57 AM
I only know about how high E suppresses and the combined pills were not strong enough in my peri.

Not sure if you saw on your other thread, but CHAT GPT advised me that I could be sensitive to blood flow changes which could cause the nausea, dizziness, migraines etc from E.

It suggested micro-dosing E with a cocktail stick tiny smidge of Estrogel. Then if there is no reaction, to gradually keep adding more each day or week. This would be accompanied by about 5-10mg of prog cream. The other way you could try is the low dose vaginal oestrogens, tiny amounts of those.
Title: Re: Zoley pill
Post by: dangermouse on April 04, 2025, 11:28:04 AM
You could also cut the Zoely pills into 4 and take a quarter a day to try that one more gradually (if not a timed release one).
Title: Re: Zoley pill
Post by: CrispyChick on April 04, 2025, 11:38:05 AM
Thanks DM

Interesting about the blood flow changes. I actually think that's what happens to me, I'm so so sensitive to changes, not hormones themselves. And the chem meno just brought floods of changes.

I think when I first start pills, I also go through all that. Am I strong enough to try again??? Possibly not.

Would cutting a zoley tablet really help though??? I need to shut down quickly. If I cut it, I'd probably get more and more E, without shut down. But I see what you're saying. Worth a thought.

And that's just it. If the combined pills are not strong enough in peri...then I'm doomed.

Micrododing sounds spot on for you. I don't need estrogen this month. Mine has sky rocketed. No low E symptoms whatsoever. But I feel horrific.

I tried microdosing prog cream. Even tiny doses affect me. I was succeeding with this approach 18 months ago. I got up to 30mg prog without upsetting my stomach too much. Then got impatient on month 3, swallowed 1 utro capsule and all hell broke loose. Never got my stomach back to normal until I stopped all P.

So patience is very important 🤣
Title: Re: Zoley pill
Post by: CrispyChick on April 04, 2025, 12:29:28 PM
I'm wondering if I'd be better going back to cerazette - better the devil I know. Starting on one, then going up to 2.

One used to work for me in terms of suppression, I'm sure of it. But last year it didn't. I tested and E was in the 400s and I was feeling very ill (probably the fluctuations).

I am worried about the headaches, moods and stomach. But I can't live like I am right now.

If it worked to suppress I could then add in E via HRT???  But I cannot find where the BMS say it is ok to use 2 desogestral.  :o. I don't want to jump out of the fire into the frying pan and find my GP won't support. :(
Title: Re: Zoley pill
Post by: Dotty on April 04, 2025, 12:34:19 PM
https://thebms.org.uk/wp-content/uploads/2023/04/14-BMS-TfC-Progestogens-and-endometrial-protection-APR2023-A.pdf

Page 7 talks about desogestrel
Title: Re: Zoley pill
Post by: CrispyChick on April 04, 2025, 01:18:55 PM
Thanks Dotty.

It's not particularly strong... :o But at least it's something. X
Title: Re: Zoley pill
Post by: dangermouse on April 04, 2025, 03:12:52 PM
I suppose there’s an argument for having a small but steady amount of E and P in the blood that may stop the brain from causing the surge and plummeting of E in late peri.

It’s not the same as overriding the cycle with E, where very large amounts desensitise the receptors (and whatever the progestins do in this regard) but could create some stability.

I had assumed that my reaction from E in peri was due to it pushing the spike up even further but I still get a version of it now when E is added and my levels are very low.
Title: Re: Zoley pill
Post by: CrispyChick on April 05, 2025, 08:23:53 AM
Yes. I'm unclear if even double mini pill is sufficient in my situation.

Whilst I acknowledge the role progestin plays in stopping ovulation. Is this sufficient??? I'm reading high dose estrogen plays a role - and, in this respect, I can see why low dose coc weren't as successful for me as higher dose.

"Combined oral contraceptive pills (OCP) act by inhibiting ovulation at the level of the pituitary and hypothalamus, via suppression of gonadotropin secretion. The estrogen component prevents the increase in follicle-stimulating hormone (FSH), thus inhibiting the formation of a dominant follicle."

So I doubt zoley will be strong enough for me.

Basically, I think k if I'd stayed on something all through my 40s it'd have been working. But because I'm trying to retrofit...it's never enough.

Thoughts on taking 2x cerazette versus zoley???

I don't think I ovulate much now anyway, it's something to stop the surge. The surge comes whether I ovulate or not. I was told in peri it goes for it then overshoots.

I suppose my question is, will 2x cerazette increase the strength of it's action in terms of keeping estrogen low and steady???
Title: Re: Zoley pill
Post by: joziel on April 05, 2025, 09:47:11 AM
Two Cerazette (without any replacement E) will very likely cause low E symptoms and not be very nice. But you could add E back in separately.
Title: Re: Zoley pill
Post by: CrispyChick on April 05, 2025, 09:52:51 AM
Right. So you think 2 will work stronger than 1 in teens of affect on E levels?

I just need stability. Don't give a stiff right now about low E symptoms. They are the least of my worries.

One did not hold my E last year.

It's just, from that extract it reads like you need the high E in a COC pill to fully supress. That's why I'm questioning it.
Title: Re: Zoley pill
Post by: joziel on April 05, 2025, 09:58:43 AM
I think there are different modes of action. For eg, not all progestins stop ovarian function. The older ones like levonorgestrel often don't and work by producing cervical mucous which is inhospitable to sperm.

But the newer progestins like cerazette usually do stop it and I'd think that with the dose doubled, they definitely would.

By the way, I get migraines when my E peaks or gets suddenly high. I know because (TMI) it's accompanied by EWCM. But I can also get them when my E drops out. So hard to find something consistent and in the middle.
Title: Re: Zoley pill
Post by: CrispyChick on April 05, 2025, 10:12:28 AM
Exactly!!! My fluctuations are killing me.

Last month - longest cycle ever. Low E symptoms. This month, so much EWCM  8), first migraine in months and boobs like bullets which I never get!!! And it all makes me feel really really ill.

That's my problem. It's not the symptoms in themselves, it's the underlying illness. My poision.

So now I wavy to go d something to take these will fluctuations away. Geez, I'm even considering retrying chem meno - and start with hrt add back immediately this time. Yet I said it was the worst experience of my life! That's how desperate I am for it to all stop.  :(
Title: Re: Zoley pill
Post by: bombsh3ll on April 05, 2025, 01:32:41 PM
150mcg of desogestrel is definitely suppressive if given long enough to work.

It shut me down at 41 and I have really high ovarian reserve.
Title: Re: Zoley pill
Post by: CrispyChick on April 05, 2025, 02:31:17 PM
Thanks. That's useful.

How long do you think? I got to 7 weeks on one cerazette where my symptoms were off the scale and my E was 450 pmol. Previously, one cerazette would keep it in the low 200s.

I mean, the aim is not to kill my E off like cm, but I need it stabalising. So badly.
Title: Re: Zoley pill
Post by: bombsh3ll on April 05, 2025, 06:04:22 PM
I would give it at least 6 weeks.

I stopped bleeding in less than that but that was when I had both a blood test and a scan.

Previously on 75mcg I had continued to have regular periods and after 3 months I had an estradiol level consistent with 12 weeks gestation, because I had developed a cyst.

After 6 weeks on 150mcg I had a follow up estradiol of around 100pmol/L and scan showed nice quiet ovaries with small inactive follicles only and no cyst.

I didn't suffer from any hypoestrogenic symptoms at that level but chose to go back on an estrogen containing pill for long term health reasons.

You also have the option to add transdermal estradiol to this rather than take a combined pill if you prefer or if you struggle to access a COCP due to age.
Title: Re: Zoley pill
Post by: CrispyChick on April 05, 2025, 07:48:34 PM
That's very useful. Thank you.

Well, one step at a time. I'll try not to think about the future estrogen issue. Because I don't normally make progress with anything.

I shall await my next period, which, given the extreme high E symptoms this month, I suspect won't be too long, then go for 2x cerazette.  8)
Title: Re: Zoley pill
Post by: bombsh3ll on April 06, 2025, 08:18:11 AM
Just to add there's no medical reason why you need to wait for a period, this simply comes from the idea of making sure you are not pregnant when you start a contraceptive.



Title: Re: Zoley pill
Post by: CrispyChick on April 06, 2025, 08:32:04 AM
Yes. I get that.

It's just psychological. Last year when I tried one cerazette, I didn't wait for a period - and the whole event was a disaster!

So I'm waiting this time. I also want to do a blood test.

Also, given it's action, I can't see how it can work  on anything ahead of my next follicular phase.  :o
Title: Re: Zoley pill
Post by: CrispyChick on April 09, 2025, 12:51:42 PM
Help.

Me again. Asy period draws ever nearer - I'm in two minds about what to try.

I'm wondering if anyone has any thoughts on what will be stronger to shut me down - zoley or the X2 desogestral????

It's not about low E for me at the moment. That said, 1x desogestral gave me foul pms before. Not so much when it wasn't suppressing - interesting. But I can add back later if need be.

So this is all about suppression. How quickly would zoley supress???

Supress and keep steady is what I'm looking for from this. I'm all too aware my pill trials last year made everything worse...

And then I read this article https://pubmed.ncbi.nlm.nih.gov/8629458/ (https://pubmed.ncbi.nlm.nih.gov/8629458/)

And I now wonder if that's why I felt 20mcg coc pills not strong enough, compared to 30mcg about 3 years ago. But the 30mcg caused terrible migraines.

So, a further thought - does some estrogen in a pill encourage follicular growth? Over say no added E  And higher doses E supress it again. In which case, as I've been thinking, I'd be better with X2 Cerazette and no E. As I dont think zoley will be high E. Or does it continue down that you'd get even more follicular growth if you don't add in any E???

Anyone know the answer to that conundrum???

To anyone not familiar with my back story - I probably look like I'm way overthinking. But trust me, I'm in the depths of despair and trials nearly finish me off  :'(
Title: Re: Zoley pill
Post by: bombsh3ll on April 09, 2025, 05:54:17 PM
I would say the progestins in most combined pills are roughly biologically equivalent in shutting down ovarian function.

The developers have tested different doses in large groups of women, most of them probably under 35, in order to identify the dose that is universally effective. 

I am 100 percent confident that either 150mcg desogestrel or zoely (active pills daily) will shut you down after around 6-12 weeks max.

Both shut me down and my nickname during IVF was the Easter Bunny. I had OHSS twice, very high egg yields and was difficult to shut down on Buserelin. I had, and still have, an antral follicle count and AMH consistent with someone 15 years younger. And my ovaries are clinically, biochemically and radiologically quiescent on both of these treatments. 

I believe the progestin in Zoely is better tolerated by some individuals, possibly because it is less active at off-target receptors, however I personally did not experience any noticeable difference. Also some would experience negative quality of life effects in the hypoestrogenic state resulting from taking desogestrel 150mcg with no additional estrogen, which again I did not notice myself.

However there are arguments for considering the desogestrel in your case - it is easier to work out what is going on if you are using a single vs combined agent. Also if you wanted to check your baseline blood level on desogestrel (you would be shut down but unless you are postmenopausal or very close it will not be zero - mine was around 100 pmol/L) this may be of more value to you than measuring it on Zoely and would help you monitor any add back estrogen.

Access to treatment - desogestrel can be obtained pretty easily including bought over the counter without a prescription until age 55, however getting a combined pill such as Zoely prescribed may be difficult at 49 and impossible at 50.
Title: Re: Zoley pill
Post by: CrispyChick on April 10, 2025, 08:48:06 AM
Some good points bombshell. Thank you.

I have obtained zoley online.

I'll start with double cerazette then see where I am and discuss with my lovely GP. She tries to help wherever she can. So hopefully she'll support this latest trial.

I'm most scared of it not working and making me feel worse - which 1x cerazette did last April.  And /or the side affects - as cerazette tends to attack my mood and give me anxiety. Cause headaches and stomach issues.  :( But, right now, I'm so ill, I'll need to suck that up.

Thanks for helping me see the right path to start on. 👍

Title: Re: Zoley pill
Post by: CrispyChick on April 14, 2025, 10:05:22 AM
If I start my double cerazette on day 1 of cycle. Will it already affect a day 3 FSH test I want to do???

Anyone know????
Title: Re: Zoley pill
Post by: bombsh3ll on April 14, 2025, 03:50:20 PM
It might, and if you are paying for the test/care about the result I wouldn't take the chance as you won't know if you can trust the result.

Why not do your test clean, and then start directly after this on the morning of day 3?

Starting a pill on day 3 is still perfectly good enough to stop any ovulation that cycle.
Title: Re: Zoley pill
Post by: CrispyChick on April 14, 2025, 04:05:29 PM
Hmmm because my E peaks like day 9 nowadays. So I'm trying to curb that peak as soon as I can.

No. I think my hormonal trial is more important than an FSH nosey reading.  ;D. So I'll either do it and potentially waste it. Or not bother. Thanks for the heads up.

It could only hold FSH down, right?
Title: Re: Zoley pill
Post by: bombsh3ll on April 14, 2025, 06:57:19 PM
Yes that's right it suppresses FSH.

So if you do test, either it will be unaffected that soon, or the FSH will be artificially lowered.
Title: Re: Zoley pill
Post by: CrispyChick on April 23, 2025, 01:41:53 PM
Me again!!

I've just trawled all my I trial posts on here from 5 years ago. Very, very enlightening.

I concluded all my issues were hormonal -because, the Coc 30mg pills took them away!!!!  My giddy aunt.  :o

So. Where does this leave me?

Back then on cerazette I was better, but still pretty rough and had terrible moods. 20mg E coc pills didnt help sufficiently. 30mg E coc did. But gave me terrible daily migraines.  ??? HRT was horrific. Being on nothing was horrific.

I do think there's now more going on than there was back then. I now have serious reactive symptoms. In my stomach, in my head (nose pressure), tingly pulling sensations when trying hormones. MCAS possibly.

So. I guess my question is, will 2x cerazette shut me down as well as a high dose estrogen coc - which, at 49, I'm now unlikely to get. Especially when it gives migraines.  :o :o. Because I'm assuming it was it's ability to suppress and override that made things better.

But concerned, since I did try 20mg coc with desogestral (150mcg) and it wasn't good.

I think I can clearly see HRT will not help me.

Help...
Title: Re: Zoley pill
Post by: bombsh3ll on April 23, 2025, 04:14:03 PM
Yes, I am sure it will shut you down.

It shut me down at 41 with really high ovarian reserve.

No bleeding, quiescent ovaries on scan and estradiol levels just above postmenopausal range.

Whether you will feel well on it I can't say. But you have options for adding estradiol if needed.

A 30mcg ethinylestradiol pill would not normally be recommended with migraines especially in the 40's, however if someone has no quality of life any other way it could be considered, alongside treatment for the migraines.

Also some women, if they are taking the combined pill 21/28 days, which is not just medically unnecessary but can be harmful, can experience migraines in the pill free week, and taking it continuously may prevent this.
Title: Re: Zoley pill
Post by: CrispyChick on April 23, 2025, 04:24:49 PM
Thanks bomb.

I've been reading on chat gpt (thanks dangernouse) - I'm hooked now!

Apparently cerazette can be stronger in suppression than a 20mcg coc pill because the estrogen affects the progestin metabolism. And, that's before I doubled the dose - which chat gpt doesn't agree with  ;D

I'm not remotely worried about low E symptoms right now. Well, because I've been through the brutality of chem meno. That was something else. This is solely an attempt to flatline my own hormones, in a less intense manner.

I'm still concerned about who would support hrt add on on 2x desogestral. But I guess that's an argument to have, should I ever get there.

Right now I think my GP is gonna freak.  ;D

But, I mean, these I trial posts confirm it. I was horrific when swapping from cerazette (not amazing) to 20mcg coc, then on nothing was off the scale, then the 30mcg coc calmed it all down by the end of a month.

This was 5 years ago, but I've been chasing it ever since ...hrt doesn't work as my body overreacts(?) to hormonal changes, big stylie.

I'm defo thinking prof paney.

None of it explains why chem meno was the worst disaster ever though. The only thing I can think is my body overreacted to the severe shut down. Then I never got enough, stable E in me. I felt so utterly ill I couldn't continue.
Title: Re: Zoley pill
Post by: bombsh3ll on April 23, 2025, 04:42:30 PM
Your GP will happily prescribe one desogestrel daily alongside any HRT you take, for "contraception".

You can buy more over the counter without a prescription up to age 55, as long as you say it's for contraception.

Many specialists would be happy to support this based on existing evidence, but if you are just working with a GP who doesn't have a particular interest in this area it is sometimes just better to meet them where they are rather than asking for something non standard.
Title: Re: Zoley pill
Post by: CrispyChick on April 23, 2025, 05:03:28 PM
Yeah, but I would defo not want any other progesterone.

I guess E patch plus 'utrogestan'  ;) in that situation.

But I'll probably never ever get to that point anyway.
Title: Re: Zoley pill
Post by: CrispyChick on April 23, 2025, 05:52:00 PM
Just thinking about what you said about quality of life...

And migraine treatment.

This was 5 years ago though. So god knows how my reactive body would cope now.

But you make a good point. Every day I tell my husband I don't want to live any more, as I cant stand feeling this ill...

Food for thought.
Title: Re: Zoley pill
Post by: CrispyChick on April 24, 2025, 10:10:57 AM
Ok.

So I, coincidentally, had a gynae ultrasound this morn. Been waiting about 9 months.

Anyway, all fine. But whilst in there we chatted through my history and I said about starting cerazette.

She could see follicles as per a normal cycle.  :(. Now, is this because I'm only day 11 of first cycle?? I started on day 1 of my cycle.

Or, is this why cerazette has never worked for my awful symptoms like the 30mg COC did???

From my reading, cerazette stops the LH surge and therefore ovulation. But doesn't affect FSH so much. Whereas a coc pill reduces fsh substantially. Hence full expression.

And, especially deep in peri, my fsh and E are dancing mega high at times.

Really appreciate some thoughts? Thanks. X
Title: Re: Zoley pill
Post by: bombsh3ll on April 24, 2025, 11:27:30 AM
One 75mcg cerazette pills isn't intended to shut you down like a combined pill.

That's white is half the dose that you would get in mercilon or Marvelon.

The difference is it is ok to be shut down on a cocp as you have the estrogen added back.

It wouldn't be appropriate to shut young women down long term for contraception with no estrogen added back.

Some women do achieve amenorrhoea on cerazette but this doesn't equal full suppression
 There is still some follicular activity.

That's why in my opinion cerazette as a single dose is neither use nor ornament for any therapeutic indication, it prevents pregnancy, nothing else.
Title: Re: Zoley pill
Post by: CrispyChick on April 24, 2025, 01:36:31 PM
But I'm on the double dose of 150mg.

So I'm 11 days into 2x cerazette and follicles were seen on my ultrasound.
Title: Re: Zoley pill
Post by: Lclegg002 on April 25, 2025, 04:01:21 PM
Hey Crispy  :-* sorry you’re still no better going through this shit show. Are you taking Cerazette or some cheap desogestrel equivalent? Only because I felt good on Cerelle (double dose) then got changed to some generic crap and I’m pretty sure it didn’t shut me down. I really still felt my cycle on the cheaper stuff.
I’m a month into 50mg patch now with Slynd (5 months) and do feel better. I still feel flat, anxious at times (easily overwhelmed) and my energy levels aren’t great but I am actually coping more. I still feel however I’m having a cycle in background or my patch is not consistently giving same estrogen dose as I have some days of stronger symptoms than others. It definitely took 3 months for my body to get used to Slynd…I’m pretty sure the first couple of months my cycle was breaking through so it might be the same for you and you just need to give it a few months for it to switch off the ovaries xx
Title: Re: Zoley pill
Post by: bombsh3ll on April 25, 2025, 06:49:41 PM
If you are not yet menopausal you will always have some small follicles visible on ultrasound.

Even women shut down for IVF with buserelin injections etc have these.

But they should all be tiny and uniform in size, no growing or dominant follicles.

A couple of weeks is probably not sufficient to get the full benefits of treatment either.

I need to book my scan soon which I have for ovarian screening - I will do it after my son's GCSEs - and I always have lots of tiny antral follicles despite long term continuous COCP.

In fact I am always pleased to hear that I have the ovaries of a 25 year old - no follicles would mean I was menopausal!
Title: Re: Zoley pill
Post by: CrispyChick on April 25, 2025, 06:52:09 PM
Hey LClegg. Good to hear from you.

Thanks so much for reaching out on this. As you can probably tell I'm flapping around.  ;D.  I was just a bit disturbed by the radiographer saying she could see follicles like in a normal cycle yesterday. But it was only day 11 of my 2x cerazette trial. Just overthinking. Just so so desperate for some relief.

I only use branded cerazette. I learnt that the hard way in my 30s. Think it was actually cerelle that I didn't like. So that's not an issue, and never will be.

I have now gone past the point I got to with slynd - which was 11 days  8). Slynd was awful for me. Now, I've had a rough 11 days so far on my 2x cerazette, but I'm still going.

I think my biggest concern is noone knows I'm doing it. Am seeing my GP Mon, fingers crossed she is supportive.

So, could I ask - why were you on 2x desogestral before? Did someone recommend it??  And did it work for you when using cerelle? And u only got into difficulty when u were switched brand?

Then moved to slynd?? And it took a good few months to feel some sort of shut down? That's reassuring. I got to 7 weeks on single cerazette last year and seemed to get worse.

I'm scared the same thing will happen. I'm scared of the side affects, which were bad enough on one cerazette. But right now I need to try something and assess if I stop feeling like I'd no longer like to live because I feel so physically ill. So my benchmark of improvement is very low!

So interesting about your estrogen. Patch? Have u tested your blood? When I was in chem meno a 50mcg patch wasn't enough. Obviously I was at zero E though.

My next thought was to add in a 50mcg patch. Since the Coc pill took all this away 5 years ago. But, I'm not convinced I'll find a medic willing to support 2x cerazette as the P. There was a 1993 study but nothing ever came of it.

But, I probably need to do as you have and proceed on my cerazette alone for a few months first.

I'm really hoping my GP supports me. I'd love to hear what led you to 2x cerelle, how it worked and what support you got.

Thanks. Xx
Title: Re: Zoley pill
Post by: CrispyChick on April 25, 2025, 06:55:31 PM
Thanks bomb. Really appreciate that.

I kind of wish I hadn't asked about the follicles now. It was just the way she said it looks like it would in a normal cycle.  :(.

And I certainly feel just as bad as a normal cycle. Yet.  :-\

Ok. So I just need to move past the follicle comment. I'll do a blood test day 21, see where my E is sitting.

Good luck with your scan then.

GCSE? I thought u were Scotland?? I've got one starting Highers this week. Scary times x
Title: Re: Zoley pill
Post by: joziel on April 26, 2025, 02:03:02 PM
Crispy, Newson Health will def support 2x Cerazettes if you explain what you've tried before and if this works for you. Just saying...
Title: Re: Zoley pill
Post by: bombsh3ll on April 26, 2025, 03:33:39 PM
My son has been online schooled for the past couple of years as he was violently assaulted in his state school, and had never thrived there anyway, being placed in the wrong year group with people 1-2 years older

Your GP doesn't have to support 2* desogestrel as your progestin. You can get single dose from them for "contraception", and buy more without a prescription, or just buy all of it if less faff.

You can get estrogen patches and micronised progesterone from the NHS in addition to single dose cerazette.

Obviously what you do with the progesterone is then up to you - desogestrel is many times more potent on the endometrium than progesterone so there is no safety issue with not taking it if you are on 150mcg desogestrel continuously.

Think about it - you could take Marvelon which also has 150mcg desogestrel with 30 micrograms of ethinylestradiol. This is much more potent than any strength of 17 beta estradiol patch.
Title: Re: Zoley pill
Post by: CrispyChick on April 26, 2025, 04:52:45 PM
Thanks both.

Sorry bomb, didn't mean for you to have to explain yourself on your son's GCSEs. Glad you found a solution.

So yes, I've already thought about how I was easily given marvelon and how ridiculous it is to then have to fight to add an E patch to my 150mcg cerazette.

And yes, I've sussed it all out how to get the things I'd like to try.

But ...this is about support.  >:( I've absolutely been through the wringer over the last 7 years. The chem meno nearly finished me off mentally. And now I'm seeking quality of life so I no longer spend most days feeling like I'd rather be dead.It would be nice to have my GPs support in this. Somone to help me tweak things, rather than me deceptively acquiring things to take in an underhand manner. You know?!?

But, I guess I'll soon find out...

To be honest, it might all be academic if I don't get on with the double cerazette. Things are not good so far at almost two weeks in. 

And yes, I could pay to go to Newson. But I shouldn't have to if I just want to trial something.

Hoping LClegg will be along with her 2x cerelle experience ...
Title: Re: Zoley pill
Post by: joziel on April 26, 2025, 07:56:53 PM
The prob I find with all the meno clinics, is they only do meno stuff. So as soon as there are other things going on, they can be a bit 'computer says no'. Like, thanks, we've thoroughly explored all available doses of the 3 hormones you deal in and I still have symptoms and you can't suggest anything else.

This is the same as the private thyroid clinics: Thanks, but we've thoroughly explored every available dose of T3 and T4 which seems suitable and I still have symptoms and you are not suggesting anything.....

Then you end up back at square one with another doctor. Explaining everything again. This is basically my life.
Title: Re: Zoley pill
Post by: CrispyChick on April 27, 2025, 10:43:57 AM
Yip. And totally mine too.

But the only person to stand by me and support me in this has been my GP. So I'm going to be honest and see what happens...I'd really like her support.

Fingers crossed. What I'm trialing is hardly the most hardcore stuff  ;D two x cerazette. And possibly addition of an E patch, eventually.  :o

Let's see...

Every expert has washed their hands of me.  ???

Title: Re: Zoley pill
Post by: joziel on April 27, 2025, 09:39:28 PM
Hope it works...

I'm going to my GP tomorrow, it's the first time I've met her in person (always had phone appointments and she's been very nice and agreed to my very high doses of HRT from Newson Clinic)... Tomorrow I'm taking her all my thyroid stuff and telling her I'm on thyroid meds and what happened when I tried to come off (and do I need a referral to endocrinology to check for central hypothyroidism and other hormones). I'm not sure how much of this shitshow I can explain in 10 minutes so she better listen well  ;D ;D
Title: Re: Zoley pill
Post by: CrispyChick on April 28, 2025, 08:09:05 AM
I hear you joziel.

I'm there today too. I've got a list as long as my arm.

But, she is on the whole supportive and I get double appointments at her request - probably because I always make her overrun. 🤣

Good luck to us today 💪 May our lists win some support. X
Title: Re: Zoley pill
Post by: Lclegg002 on April 28, 2025, 02:55:31 PM
Hey crispy, sorry for my late response… I’ve actually been really busy all weekend as been feeling half decent so try and shove in as much as I can as doesn’t happen often! ;D
So I went on 2 x Cerelle because I hated utrogestan and was told by Newson that this would be a feasible option. Initially I was just on the one as my doctor said it would stop ovulation and hopefully the highs and lows but then for the HRT element I needed to increase. At that point I then seemed to tolerate a much higher dose of estrogen (presumably because my own cycle had been switched off and Estrogen was at a lower level) and I felt really well for about 3 months on 3.5 pumps of gel.
Anyway, it didn’t last long because I spoke to my nhs gp to get some vaginal Estrogen on a separate occasion and she questioned the use of the 2 x cerelle and was very unhappy I was on it and said a top consultant gynae said it was dangerous and I shouldn’t be on it. Anyway super health anxiety me then stopped it, went back on utrogestan, hated it again so had mirena put in which I also hate because it never stopped my cycle and started to feel crazy again… super highs and super lows.
I actually got the Slynd through a private pharmacy because there’s no way my doctor would allow it with mirena in situ and Newson weren’t keen to prescribe til I’d explored histamine intolerance for long enough (which they think I have). I was DESPERATE so put myself on it and have been feeling better than I was. I had a blood read of 82pmol on Slynd a few weeks back which promoted me to put myself on a 50 patch as I was feeling very low in mood and exhausted. No idea what my level is now but still feel the Estrogen isn’t right. I continue to feel really fatigued and easily worn out, joint pain and mood is very flat and can’t be bothered with life. I’ve just got some 75s so I may try them soon but one thing I’ve never seemed to have any consistency with is energy levels. Even on 2 x desogestrel and 3.5 pumps gel I had many days of chronic fatigue. I just don’t understand what my body needs. I’m also on testogel 1/8th of packet per day.
I’m pretty sure the 2 x cerazette will eventually switch off your cycle. It’s hard to know what to do where the estrogen’s concerned though isn’t it? I know I needed it because of my mood but it’s a very hard thing to get right and I’m convinced even though I no longer ovulate I still have a cycle in the background which is making the estrogen impossible to get right consistently . xx
Title: Re: Zoley pill
Post by: CrispyChick on April 29, 2025, 07:39:16 AM
Woo hoo. My GP didn't blink about my 2x cerazette. It's so nice to have support.

I'm no where near thinking about adding in E, but she said she'll check if it would be ok, based on what I'm telling her is in the BMS guidelines and a 1993 study.  I suspect it may officially be a no. But we all know I can get E with separate P.  ;)

So I'm happy with that. She was also incredibly supportive with all my other requests. I've asked for full thyroid panel and she certainly had a record of tsh, T4 and T3 from tears ago...so will see what transpires.

Awww LClegg. It's all so frustrating isnt it. If you felt good on the 2x cerazette plus oestrogel, have you considered going back to that combo???  Although sounds like the slynd and patch is improving things a bit.

It really is all do utterly frustrating. To find something u can tolerate and helps and then be told you can't take it - for no other reason other than the research isn't there.  :o.

Are you taking slynd on top of mirena then???

Oh, by the way, my GP had been notified I'd bought Zoley pill.  ;D. So they do actually seem to tell them.  :o

Joziel - How'd you get on with your GP?
Title: Re: Zoley pill
Post by: joziel on April 30, 2025, 12:17:58 PM
My GP was lovely. I managed to leave out my sex hormone results so she couldn't see what my E levels were (they were only on one thyroid result page) and just gave her all the thyroid results I've had done, ever. I talked her through it like a slideshow, showing her a result and then what was done next and why and the next result and so on....

Anyway, she tried a tiny challenge, pushing back her chair and saying 'I'm just a bit concerned that you may have been led up the garden path a bit with the thyroid meds and now the same thing is happening with the HRT...' but when I replied that I felt tons better since increasing my estrogen, she didn't continue that at all and just dropped it - and renewed my HRT prescription for this month in the same consultation.

She has referred me to endocrinology for the thyroid stuff. It's probably going to be a couple of months to come through. Meanwhile I've increased my T4 after getting my last results back (it was way below range) and after nearly a week on 100mcg, I am finally sleeping a lot better. I'm sure this isn't going to get it high enough and I'll need another increase. My goal is to get the T4 up and reduce the T3 to something minimal which the NHS will approve of. I no longer seem to have rT3 issues, rT3 is now below range - but will monitor that as I increase T4. Got an online appointment with my private thyroid doctor tomorrow so hopefully we can keep trying to work on this in the next few months whilst I wait for the endo referral. The guy I've been referred to supports NDT use and T3...
Title: Re: Zoley pill
Post by: CrispyChick on May 06, 2025, 09:15:24 AM
If anyone would like to support me with a pep talk - It'd be nich appreciated.  ???

I'm now just over 3 weeks into double cerazette. Making absolutely no difference to my daily awful poison and flu (perhaps it won't). Got added side affects - today extremely achy back. Constantly dizzy, woozy and motion sick.

It's 'only' 3 weeks right?!?

I'm kinda wishing I'd just gone for combined pill now. 🙈. That seemed to trigger at the 3 weeks mark, when it worked before. Sigh.

I'd just love a little motivation to keep going. On the plus side - I am still going.  ;D

And, I'm not expecting anything near perfection. I'd just love not to feel like I'm dying (or want to die  >:() every single day.  8)
Title: Re: Zoley pill
Post by: bombsh3ll on May 07, 2025, 12:27:15 PM
Here's your pep talk

Three weeks really isn't long enough to evaluate any contraceptive or menopause hormone therapy.

Barring intolerable side effects, that can be directly correlated to the pill ie coming on immediately or within a short time after starting it, I would give it at least 6 weeks and ideally 12.

Otherwise you'll never know, and may end up repeating the trial in the future rather than having the certainty of being able to categorically write off that treatment.

I personally love Zoely but you also have to be aware that you will struggle to get a prescription beyond 50 for this, unless you either see a private specialist or have someone younger to obtain it on your behalf

Title: Re: Zoley pill
Post by: CrispyChick on May 08, 2025, 08:39:53 AM
Thanks bomb. I needed that.

This first month is hard. But, I'm not sure it's any harder than my normal. Other than it defo makes my head spinny. But I'm surviving.

Yes. I'll keep going. I'm hoping as I move I go month two things might stabalise a bit.

It's obviously still questionable whether my main issues are hormonal or not. So that's part of this trial.

Yeah, not sure zoley will be my best bet. My GP knew I'd bought it and suggested I try it if double cerazette doesn't help. But then agreed accessing it might be a prob.

After having supported me over the last 7 years, and having seen me reach rock bottom this past year, she's totally fine with prescribing me a combined pill past 50. Quality of life. But...zoley isn't prescribable up here, as you know.

So. I think it'd either be back to microgynon which was my 'best of a bad bunch' a few years ago or retry the 20mcg desogestral one.

I think adding an E patch first would be my preferred option...

But we'll plod on another month like this first. The only low E symptoms on 2 Cerazette so far are two hot flushes this week. Week 4. But I feel pre periody, so obvs my E has dropped. I actually want it to now stay low.

Thanks for this pep. I needed it. 👍
Title: Re: Zoley pill
Post by: CrispyChick on May 11, 2025, 12:20:41 PM
LClegg - did you ever test your bloods during double cerelle, or more recently on slynd before adding the E patch???
Title: Re: Zoley pill
Post by: Lclegg002 on May 12, 2025, 06:47:10 AM
I’ve had 3 x blood readings so far during the start of this…
My first was 3 days after I came off 2 x desogestrel as I’d had mirena fitted. At time I was on 2 pumps of estrogel and it was 92pmol. Presumably my ovaries were still asleep and gel wasn’t doing much as seemed a low read.
Second I had one after 6 months with just mirena (no desogestrel) and on 25 patch and it was 260pmol … this was when I felt like my hormones were going mental.
Third was 82pmol on no estrogen but after being on Slynd for 3 months so everything shut down I guess.
No clue what my reading is now. I might get another test done at some point… just more money as will have to be private.
How are you doing? x
Title: Re: Zoley pill
Post by: CrispyChick on May 12, 2025, 08:50:39 AM
Thanks Lclegg.

That's very helpful. On your latest test, before you added E patch, were you getting the classic low E symptoms? Like flushes?

Are you still feeling a little better on the slynd and 50mcg patch???

I'm still feeling dire. As bad as ever. But then we're not 100% sure my worst symptoms are hormonal. I guess that's what this trial is.

I've completed one full month on cerazette. It's not been easy. I've got my horrific poison and flu. Plus definite side affects - spinny head and nose pressure.

I tested on day 21. My LH and FSH have come down nicely, indicating suppression. I've fejg pre periody all week - but no bleed. More recent trials of one cerazette I bled through. So this is a change.

However, my estrogen measured 24pmol. And hot flushes have started. So I'm a little concerned there.

Trying to keep going as this test is about my poison rather than low E symptoms. I just hope it doesn't trigger such extreme low E symptoms as chem meno did.

Starting my new packs today.
Title: Re: Zoley pill
Post by: Lclegg002 on May 12, 2025, 11:16:07 AM
So sorry to hear you’re still feeling so rubbish, it’s truly a horrific time for some of us ladies.  :'(
24pmol is very low… I’m not sure at what point I was in my cycle when I had my recent blood read as I’ve lost track but my low estrogen symptoms were namely severe low mood and I mean severe to the point where I was having constant thoughts about ending my life, fatigue where I could barely get off sofa, constant crying and just felt truly awful and done with life. Anxiety is a constant for me unfortunately but does seem to get worse on higher Estrogen… when lower I’m very indifferent to everything and apathetic.
I’ve actually moved to a 75 patch… felt a bit woozy and spaced out on it last week but been trying to stick with it. My mood is still very meh and my energy isn’t great but I am definitely a LOT better than I was. I’m a bit odd where  hot flushes are concerned… I didn’t really have any when my estrogen was low, I think if anything they’re worse when it’s higher or probably fluctuating… same as night sweats as I didn’t seem to have many of those when low but have had a lot more recently since being on the estrogen . 🤷‍♀️. I’ve been feeling a little off balance and my nose is feeling stuffy a lot of late, I’m also having blocked ears which I’ve never had in my life. I’m sure it’s hormonal (what isn’t).
I would be very tempted to introduce some estrogen with that low read… perhaps now you’ve hit a low level and the fluctuations have levelled out you will tolerate it better and it may just help with some symptoms.
I’ve come to conclusion with HRT that is really isn’t a fix all treatment… I think it’s about finding a dose which has the most bearable side effects. I personally cannot go back to having those dark thoughts again but not sure I’ll ever feel like me again or get my lust for life back.
Annoyingly for past 2 days I’ve felt really periody and started spotting last night so wondering if the 75 is now too high but doctor said spotting can be too high or too low Estrogen and I’ve proven this because I was spotting constantly when i had my low blood read on desogestrel. Been trying to keep a diary of symptoms to see if a pattern emerges but there’s just so much cross over I’ve given up. The one thing I do know and I constant is low mood/dark thoughts for me is definite low Estrogen x
Title: Re: Zoley pill
Post by: Lclegg002 on May 12, 2025, 11:30:39 AM
Just to add crispy, you mention flu like symptoms… this was classic low Estrogen for me… I remember telling my Newson doctor that I felt like I had flu as my muscles and joints ached, I had zero energy and just felt so unwell. Also cold a lot, struggling to get warm and having to have a bath to warm me up. Actually I’m cold more than I’m hot weirdly and did wonder if I had a thyroid issue as literally ticked off all the symptoms but it came back normal. 🤷‍♀️
Title: Re: Zoley pill
Post by: joziel on May 12, 2025, 12:29:19 PM
Lclegg, do make sure you've had a full thyroid panel done - not just TSH at the GP's. The NHS doesn't test thyroid properly and it's very possible to have normal TSH and low T3 or T4.

Bleeding is normal randomly any time you change estrogen dose or method, for the first 3 months of the change. It doesn't mean E is too high or too low.
Title: Re: Zoley pill
Post by: CrispyChick on May 12, 2025, 12:32:20 PM
Thank you for replying LClegg.

I'm sorry it's proving so so hard for you to find balance and feel better. But it's good you're seeing some improvement.

Honestly, I've no idea what to think on my situation. I am not normal. I spent years chasing the estrogen dominance brigade because every time I felt so ill my E was always normal or high. It's only in the last year it's made a decline, at times. But I guess it's taking it all out in cm and now reducing it substantially with 2x cerazette that I can say with certainty, i get the same debilitating, poison and flu whichever.

I don't believe my symptoms are linked to hormonal levels. The cm proved that. But I'm still trying to gauge if they are hormones and therefore my body is overreacting in an immune/nervous system way to any fluctuations/changes.

So when I was in cm, on no HRT, my genuine no E symptoms were excruciating joint pain in my knees, groin and wrists and immense intense hot flushes.

I am worried that I've taken my E pretty low. But I'll just keep my eye on that. I'm not ready to add in E. I haven't accessed it yet  :o plus, as I think my body reacts to changes - I need stability, not yet more change. But this month holds the key.

Right now I feel very ill. Like my immune system is in overdrive. I'm fluey still. I've also got start up affects from cerazette - narky mood swings, anxiety. Spent years on cerazette, so I know them well.

Not sure how this is going to pan out.

1) all eyes on if I get debilitating low E symptoms
2) do my 'reactive' ill feelings calm once I'm stable?

If not. I'm going to retry a conventional combined pill as it did work for me to some extent a few years ago.

Nothing is perfect. I accept that now. But I can't accept feeling so ill that I'd rather be dead. I just can't.

Xx

Title: Re: Zoley pill
Post by: CrispyChick on May 12, 2025, 12:45:37 PM
And I'm feeling pretty miffed today.

I'd identified a private doc specialist in MCAS and ME/CFC. Fully booked. No appointments available ever.

Decided I'd see Nick Paney - he no longer has his books open either.

I'm miffed. The private sector now just mirrors the NHS. It's utter frustration.
Title: Re: Zoley pill
Post by: CrispyChick on May 12, 2025, 03:31:59 PM
Oh. And the ear thing...that's where mine all started 7 years ago. Blocked ears.

Now I get ear pressure pre and post period. Horrible. Or if I add/remove progesterone cream, for example. It all affects my ears.

How old are you LClegg??
Title: Re: Zoley pill
Post by: CrispyChick on May 20, 2025, 06:04:31 PM
L clegg - how are you getting on with the estrogen patch on top of the slynd???