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[westie]

Hi Mary g

I completely understand your situation and agree it is important to share, that is after all what this forum is all about.

If I am honest, I have avoided private compounded HRT purely because it is not as well researched and tested as the conventional stuff. However, having read your experience which does seem very similar to my own I would be willing to explore the possibility especially if the only other alternative is hysterectomy.

I agree we should all be open to alternatives provided they are safe.

Thank you so much for sharing, much appreciated

Wxx

[vintagefiend]

yea i feel like this- feeling v depressed having done the utro element of hrt and i'm not touching it again- been feeling suicidal- need a boody hysterectomy- getting second opinion re this in march and no not an answer! - so very bloody pissed ff with it all! i wish you well and you'e not alone

[CLKD]

Hysterctomy is major surgery and can produce it's own problems 

[westie]

Hi vintagefriend

So sorry you are feeling so bad, it is truly awful isn't it and can be so isolating which is why I am so appreciative of the help and support from the lovely ladies on here.

I think I have had it with utrogestan too, I cannot carry on when I feel so bad it really affects my whole life and quite frankly I find it scary. Only problem is that I feel so much better on the oestrogen so am not giving up yet as I can't go back to feeling literally suicidal as I was before I started the HRT.

CKLD well aware that hysterectomy is a major op and has its downsides, but for reasons stated above am willing to consider if all else fails.

W xx

[dangermouse]

With regards to the compounded pharmacies, it is quite a new return to traditional pharmacy methods (before mass production started) for the UK where its very common in some other countries like Australia. There you can go in with your prescription for 3 different drugs and they combine it into one or make something up for you that doesnt include a particular filler that you are allergic to.

it's all the same active ingredients, so the progesterone is micronised progesterone, just measured and delivered how you want it. I saw that one compounding pharmacy can make a timed release progesterone capsule so that you don't have any withdrawal symptoms. So many options and not just for HRT.

[westie]

Thanks dangermouse that is really interesting and something I may well look at if I can't get to grips with any other regime on the flipping utrogestan.

W xx

[dangermouse]

The compounded one I know of is a wax like lozenge that you melt in your gums, so a bit like taking the Utrogestan vaginally so it's absorbed through the mucous membranes directly into the blood (and like how you can take aspirin).

I suspect it's the frequent dosage that makes all the difference so you aren't getting one big hit every 48 hours followed by a dip. With progesterone you want it to be as constant a dose as possible to avoid withdrawal effects. Hence why those who take it cyclically really suffer as they have to have a full withdrawal of their whole progesterone stores each month.

[dangermouse]

That's probably because your dose was too high, so it was too much prog which would make you feel awful too.

it's about balance so a lower dose could make you feel just right.

[westie]

All your replies are so helpful ladies thank you!

I have an appt with Dr Newsons clinic this weds so I shall report back.

W xx

[Mary G]

Hi MaryG - What I don't quite understand is why a compounded 50mg progesterone dose works so much better than using Utrogestan 100mg every other day.

Is it the carrier ingredient in Utrogestan that causes so many of us such problems perhaps? Or method of delivery? If its all micronized progesterone then it has to be something like that surely? I could quite understand it if that was the case because I have to take antihistamine daily and tolerate one particular 'brand' a lot better than other brands, and some give me very unpleasant side effects.

What is the compounded tablet like?

Stellajane, I did try 100mg Utrogestan every other day but it caused silent migraines almost immediately.   I persevered for a while but the migraines persisted so it was obviously very unstable and causing oestrogen spikes.

When the clinic prescribed the continuous bespoke progesterone at my first consultation I was terrified.   I have had such a bad experience with Utrogestan (which is designed for pregnancy) and synthetic progesterone I really did not believe that bespoke 50mg progesterone would be any different.  I voiced my extreme concerns to the doctor and she assured me that my experience would be different this time because the dose is lower and the progesterone is absorbed buccally ie between the lip and the gum.   She pointed out that when progesterone is absorbed buccally it behaves differently and more like the progesterone you used to produce yourself and it actually complements oestrogen.  Very importantly, it prevents oestrogen spikes and acts like a hormone stabiliser. 

The doctor was 100% right (in my case at least) and believe me, if the progesterone was destabilising my hormones I would know about it because I would be plagued with migraines and I would probably have breakthrough bleeding.  I desperately needed hormone stability and I have finally achieved it.

Good luck with your appointment westie and please keep us posted.

[westie]

Mary G

Your situations is s9 8nteresting to me as we seem quite similar in our reaction to utrogestan.

After nine months I really do feel I have given it a good go and 8 really can't carry on on my current regime, clearly my hormones are all out of balance and they way I have felt since stopping the utrogestan last week is nothing short of terrifying! This continuing hormone imbalance is causing* absolute chaos.

I wont give up yet though , am determined to find a solution one way or another.

Will of course let you know how I get on.

thanks again

W xx

[Hurdity]

When the clinic prescribed the continuous bespoke progesterone at my first consultation I was terrified.   I have had such a bad experience with Utrogestan (which is designed for pregnancy) and synthetic progesterone I really did not believe that bespoke 50mg progesterone would be any different.  I voiced my extreme concerns to the doctor and she assured me that my experience would be different this time because the dose is lower and the progesterone is absorbed buccally ie between the lip and the gum.   She pointed out that when progesterone is absorbed buccally it behaves differently and more like the progesterone you used to produce yourself and it actually complements oestrogen.  Very importantly, it prevents oestrogen spikes and acts like a hormone stabiliser. 

The information in bold is exactly the sort of misinformation - or rather misleading comments by doctors at these specialist clinics that led to the medical establishment and menopause societies voicing such concern not so long ago about BHRT.

The point is the doctor is comparing buccal with oral administration - and therefore what she is saying is indeed true (they behave differently), but any method that absorbs progesterone directly into the bloodstream is getting it into your body so that it behaves like our own progesterone ie vaginal also. These clinics are conning women (because they are private and expensive!) if they state otherwise (not you Mary G as you are knowledgeable) - but it is not necessary to have buccal administration to be able to have bio- or body-identical progesterone.

Moreover, actually, even though the liver first pass effect is avoided through buccal or vaginal dosing (progesterone is absorbed straight into the bloodstream), I imagine buccal delivery is still less effective at a given dose for example than vaginal delivery ( but better than oral ingestion) because systemic concentrations must still be high enough for sufficient to reach the endometrium. With vaginal delivery (in my view the best option currently available) the progesterone is transported and absorbed directly through the cervix to the uterine tissues. One paper I read suggested it was ?held? there for longer than any other method. Buccal delivery also produces a rapid rise in serum concentration within about 80 mins (according to paper I read) which might be unacceptable for some women even though the dose is lower.

Also - a 50 mg dose even used vaginally would only be beneficial for women on low doses of oestrogen due to the need for endometrial protection. Studies show that the current licensed doses work best at low and medium oestrogen doses - and tend to cause more bleeding at higher oestrogen doses (can't recall the papers that looked at higher doses).

Sustained release would definitely be brilliant - if such a vaginal capsule could be produced but failing that using the current capsules vaginally are the best we can get at the moment.

Hi MaryG - What I don't quite understand is why a compounded 50mg progesterone dose works so much better than using Utrogestan 100mg every other day.

Is it the carrier ingredient in Utrogestan that causes so many of us such problems perhaps? Or method of delivery? If its all micronized progesterone then it has to be something like that surely? I could quite understand it if that was the case because I have to take antihistamine daily and tolerate one particular 'brand' a lot better than other brands, and some give me very unpleasant side effects.

What is the compounded tablet like?

Stellajane when used orally it is the metabolic by-products (after going through the liver) that causes most of the negative side effects, but additionally these same compounds as well as progesterone itself directly cause the side effects - the pronounced sedative effect for example - is a property of progesterone. Nothing to do with the carrier ingredients. Remember when you were pregnant - the fatigue and exhaustion especially during the first trimester?!

Personally I would not want to take progesterone daily at any dose - because there are still question marks about its effect on the breast, so being a long term HRT user I would rather put up with the bleed and the effects of the prog, unpalatable though these are.

Hurdity x

[Mary G]

Bottom line, it works.   

I don't have any side effects, I have balanced my hormones and no longer have oestrogen spikes, I no longer have migraines, I don't have any breakthrough bleeding, no breast pain, I have a consistent womb lining measurement of 3.3mm and a consistent blood oestrogen reading of 271 pmol from only pump of Oestrogel.

To reiterate, I can't take Utrogestan ever again because it causes migraines, I can't take any form of synthetic progesterone including both the Mirena and the Jaydess coil and the migraine specialist (probably the most well known and respected hormonal migraine specialist in the UK) completely ruled out a cycle and confirmed my particular type of migraine is caused by oestrogen spikes.   

Re progesterone and breast cancer, this is from CRUK.  Obviously it is only one study but it is interesting:

https://scienceblog.cancerresearchuk.org/2015/07/08/solving-a-breast-cancer-mystery-why-do-double-positive-women-do-better/

It's worth noting that women on the NHS licenced dose of Utrogestan (200mg for 12 days each month on a cyclical regime) are taking approximately 10,550 mg per year more than I am.

It's taken me literally years to find a regime that works and does not cause migraines so I'm going to stick with it.   After all, it's not as if anyone has any better ideas.

[dangermouse]

Ive read that the site of absorption is irrelevant as the blood stream is the blood stream. When I used Ovestin (a vaginal cream) I would get a dry mouth an hour later.

As MaryG just pointed out, 50mg every day adds up to more progesterone protection than those who take higher doses for 7 days or so. As you may remember with the pill, progesterone builds up in the blood. Having an even but low dose means you get less side effects and no withdrawal. If I was taking HRT I would do it like this as I now how sensitive I am. However, if you are ok with Utrogestan then that's all good as this advice is for those who can't make it work and are considering drastic options like surgery. Paying to see a hormone specialist, real life actual doctors in the UK, is a small price to feel good versus holidays and other stuff we might waste our money on.

Progesterone can reduce fibrocystic breasts but a well respected biologist has informed me that both oestrogen and progesterone can feed breast cancer depending on the specific receptors present in that single cell where the growth begins, so both are an equal, albeit low, risk.

I also believe we have a duty to inform women about all options on this site and not just the one size that doesn't always fit all. If it also means taking a tiny bit of pressure off the NHS then what's not to like?

[Hurdity]

Hi dangermouse - the point is that vaginal absorption is unique because (more) progesterone goes straight to the uterus (as well as being absorbed systemically into the bloodstream) whereas all the other methods have to go into the bloodstream BEFORE they are transported to the uterus hence higher doses are needed.

Mary G "Bottom line it works" - for you yes and that's great! It doesn't mean it will do so for everyone else and you are also now on a much lower dose of oestrogen than you used to be - you used to speak of very high levels, and such low doses of progesterone just would not be likely work for anyone on higher doses of oestrogen.

dangermouse - I don't think we have any duty at all to inform women of expensive private treatments! When women (including westie) talk about expense and time to get to some of these clinics - the inequitability begins to become apparent and the last thing i would want anyone to feel is that the only treatment that works is beyond their  reach due to cost or distance. Personally I feel it is our duty to do our best to encourage all women to be able to get the best treatment they can on NHS ( and I would never use that argument about pressure to justify private treatment = two tier...) through education, encouragement and also to encourage flexibility. 

No-one EVER said one size fits all least of all me (I'm on a non-standard regime after all - but on NHS with approval of my doc) - we're always talking about off-licence regimes on here - but under freely available medical supervision where possible.

The effects of progesterone and oestrogen on the breast are complex but so far the negative effects of progesterone are the ones that concern me most - while acknowledging of course that should a cancer develop for whatever reason, an oestrogen positive one will grow quicker in the presence of oestrogen.

Sorry westie this is somewhat off topic! Good luck with your appointment and hopefully you might be able to be prescribed something like a long cycle - especially as you are a special case having had an ablation.

Hurdity x