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[hoping4best]

Hello!
I had an ovary out when I was 38, and my remaining ovary failed (I still have my uterus). In the last 3 years of HRT, I've not yet really found a good regimen yet, and I'm seeking others' experiences getting "creative" with HRT.

I'm trying a new RE who had me quit all my HRT cold turkey, 3 weeks ago, to check my blood levels to see if I have any function or follicle reserve in my remaining ovary. I've got nothing! My estradiol blood level is "less than 5" (basically 0), and my AMH is "undetectable". So I've got this opportunity to start over. My new RE is one I picked b/c they like to "think outside the box". So I'm doing some research.

To my surprise, I feel *better* in certain ways off the continuous patch + oral progesterone regimen. I have adenomyosis, so on the patch I get bleeding and cramps, bloating, and sore breasts. All of that is gone. I've also had serious hair loss on my HRT (I've posted about this before). I'm 6 months into minoxidil. Shedding is a little better right now, and I don't know if it's b/c of the minoxidil or because I'm off HRT. I had no hair loss prior to starting HRT.

Symptoms right now, off HRT:

• Vaginal atrophy & urethral discomfort
• Zero libido
• Waking up at night/sleep disturbance
• I know I need some systemic estrogen for protective benefits b/c I am only 42

I'm curious if there's anyone who's had trouble with patches who would recommend trying gel? Or a Mirena/Skyla IUD instead of oral progesterone? Is the Estring any good?
Does anyone who's gotten creative with her HRT want to share any tips?

Edited to add: I've also started wondering if a hysterectomy would help me by removing the adenomyosis cramps and bleeding issue from the equation. But I'm scared.

Thank you!

[4candles]

Hello I am unable to give you any advice on HRT because I'm a newbie to it (and my situation is different to yours) but, I just wanted to chip in on the Hair Loss issue (I've started a thread on it if you want to check it out).

I was very interested to hear that you are trying Minoxidil since I am umming and aaahhhing about trying it. But, what I wanted to say re: your hair loss is, would it be worth asking your GP to refer you to a Dermatologist to ascertain exactly what is causing the hair loss? The diagnosis might then help you decide if the Minoxidil is worth persisting with. My hair loss is a genetic thing, so Minoxidil is one of the few things suggested to 'treat' it (to some degree .. and it may not work.)

You might have had thyroid levels, Ferritin, Vit D, B12, etc, checked already, but, if not, do ask specifically for those tests re: hair

Good luck X

[Kkay]

Hi there,

I went into premature ovarian failure at 42 and definitely found Estrogel a great help.

I use 2-3 pumps a day and take dydrogesterone 10 mgs orally 12 days every 3 months.

I tried various oral HRTs before using the gel but nothing I took orally helped with vaginal/urinary symptoms.

After almost ten years I switched from Estrogel to Tibolone (not approriate for you now) and developed vaginal atrophy as the Tibolone probably wasn't enough on its own for the vagina. It is hellish and is taking a loooong time to improve. Don't let yourself get there, it's awful.  Make sure you have a mode of vaginal estrogen or use a dermal mode of delivery (gel or patch) and check thT it's working on those specific tissues adequately.

Good luck. This is a great site for help and advice.

[hoping4best]

4candles, I responded to your hair loss thread. Yes, I've totally been down many hair loss roads already, and am currently trying minoxidil. Not sure yet if it's working.

Kkay, thank you. Yes. Check. It seems like if I can stick with transdermal estrogen, that's best. I did absorb (based on blood tests) from a generic patch. Sometimes it'd come off prematurely, so that's annoying. Also the bleeding, cramps, and breast pain. But they wanted my blood level higher b/c I'm on the young side for meno, and maybe I just can't tolerate that much of a dose.

I am wondering about trying a lower dose of estradiol patch, with cyclical or lower-dose oral progesterone from a compounding pharmacy, or a progesterone IUD. And then lots of local vaginal estradiol. Because you're so right. I already have a stage 2 prolapse from the first year of my diagnosis, when they had me on tiny doses of estradiol and my vaginal tissues were definitely not getting enough.

[Salad]

Hi hoping4best

My adenomyosis was diagnosed after my Total Abdominal Hysterectomy when I was 48. I can honestly say I wish I'd had it 10 years earlier as the relief and improved quality of life was amazing. That's not to say surgery was a breeze - felt like I'd been hit by a truck for first couple of days 
I just couldn't believe the years I'd put up with all the associated problems, thinking it was 'normal'.

[Hurdity]

Hi hoping4best

I have always done fine with a patch (Estradot) but you definitely need a decent dose at your age with no ovarian function.

Compounding pharmacies are not recommended - not standardised doses and very expensive!. You can get progesterone through the NHS ( Utrogestan) as oral capsule - which some women use vaginally (off licence). Alternatively as you say a Mirena delivers most of the progestogen straight to the uterus so you can tweak the oestrogen dose to suit.

Yes lots of vaginal estradiol - (Vagifem) is good ( or estriol - ovestin or the generic estriol). The vaginal preparations are listed here: http://www.menopausematters.co.uk/local.php

Hurdity x

[hoping4best]

Thank you Hurdity! I'm in the US, and we have Prometrium, which I believe is the same as Utrogestan. I was previously on 200mg/night continuous. That was too much. I actually get a helpful calming effect from progesterone, but I often wonder if it increases my hair loss. So I'm interested in maybe trying the Skyla, or the other new progestin IUD (can't remember the name). I believe they are just like the mirena but with smaller doses. I'm going to investigate those.

[murphydurf]

Hi hoping4best - I'm not in the same position as you re. Meno but I am trying to be creative with HRT!

I had a mirena removed yesterday (7/8 weeks in and I'd asked for a Jaydess which is new lower prog coil but they wouldn't give me it) as I thought it'd be easier than Utrogestan. I'm really not good with progesterone and synthetics in particular. The mirena gave me: constant low back ache/palpitations/anxiety/low mood/no interest or focus/bloating and what seemed like IBS symptoms. Now this doesn't happen with every woman but it's not for me so I'm going back to Utrogestan. Im currently using Oestrogel 4/5 pumps a day and my recent blood tests showed a reading of 86pmol for oestrogen which I believe is low so my gel is obviously not working. Again, this is unusual, so I'm going back to patches. It may have been the progesterone in your combi regime that gave you the bad side effects? Aren't the vaginal rings particularly good for VA?

Let us know how creative you get as I'm interested.

Mx

[Dancinggirl]

Hi hoping4best
I started my meno in my mid 30s - POF - so understand your dilemma.  I am now 60, off HRT but I did have nearly 25 years of HRT and have tried just about everything under the sun.  I was on Oestrogel every day with ten days of progesterone each month for many years through my 40s and this worked very well. In my mid 50s I had a Mirena (which meant no bleeds) again with Oesrtogel and this worked well, after a few initial side effects from the Mirena.
Another option you might like to try is Tibolone???  This is great for libido, can often bring fewer side effects than other forms of HRT with progesterone, and controlled meno symptoms well.
You definitely need local oestrogen - something I didn't get early enough as doctors assumed that systemic HRT was enough !!!  I liked the Estring but it it did give me thrush a few times - I now use Vagifem 3 times a week with SYLK vaginal moisturiser used daily - I will be using local oestrogen for the rest of my life.
As Hurdity has said - don't go for compounded hormones - very dodgy. Utrogestan or Provera are good fro progesterone in pill form but I always found Oestrogel better than patches. 
It will be trial and error but you may find something like the Mirena with Oestrogel a simple, hassle free way forward - also solves the bleeding and cramps problem.  Don't go for lower dose oestrogen as you are young and need a good dose. Good luck  DG x

[Hurdity]

No wonder you felt rough on 200 mg Prometrium (prog) as this is high - especially needed though for higher doses of oestrogen and if the prog is taken orally rather than vaginally.

Personally I would not go for Tibolone at this point - only because you are so young and I would want proper estradiol if I could with all the benefits it brings - but that's just what I would do/not do in your situation.  it might be just the thing as Dancinggirl says - for libido too! The Mirena option is attractive and especially I think with the Skyla, since from what I can see it is the same as Jaydess in terms of the amount of prog and the time you have it in for. Therefore the systemic effects should be far less than the Mirena - and many women in UK would be interested in this use! I'm sure it won't be long before some gynaes decide to trial women with it - since the systemic levels are on average I think, from memory, comparable with Femseven ( a patch) - but I would need to look this up!

Hurdity x

[hoping4best]

First of all, thanks so much for sharing your HRT stories. I'm leaning toward patch + IUD as the next thing I try. I do want to share a couple odd things that I'm observing are different in the US (the U.K. seems to have way more support for menopausal women than we have here):

1. Utrogestan/Prometrium - I would like to try using it vaginally. Here, all my doctors look at me funny when I suggest taking it vaginally instead of orally. It seems standard in the U.K. to take utrogestan vaginally, no? Makes way more sense that way to me.

2. Tibolone - I don't think we can get it yet at all.

3. Estrogel - this has never been offered to me for transdermal estradiol. It's always just the patch. I assume we have gel? So confusing.

My RE appointment was delayed due to a storm so now it's just over a week away. It will be one month off HRT (though I am back on estrace). I'm thinking of putting a patch back on for the next week as I've got some. I don't know if I can make it another week!

[Dancinggirl]

hoping4thebest
You talk about ‘we' - where do you live? 
Utrogestan is licensed to be used orally here in the UK - not vaginally - ladies who go privately often get the OK to use Utro vaginally - NHS doctors won't know about this.  It's on the continent that it's tends to be used vaginally.
One wouldn't want to use Utrogestan vaginally everyday ( continuously)  as it tends to cause irritation in the vaginal area and bladder so if you use Utro it's best to go with a sequential regime and put up with regular withdrawal bleeds.

If you are UK based then Tibolone is an option - I think it's available in many countries.

Oestrogel has been around for a long time and is available in most countries - french women love Oestrogel - it's a great option as it allows some flexibility of dosage which can be useful.

As you are young, I would also consider asking for local oestrogen alongside the systemic HRT as this will help to against urogenital atrophy - used once or twice a week it should prevent the UTI type symptoms that many of us develop.

It is worth starting with a sequi HRT with most HRT regimes - this gives you the chance to see if a particular progesterone suits you.  Many women choose to stick to a sequi HRt well into post meno due to adverse side effects that can happen on any conti HRT regime

If you want a bleed free regime, then the Mirena would be a good option and used alongside patches or Oestrogel would be your easiest option.


Do print out all the info under TREATMENTS at the top of this page so you can discuss yrou options at the appointment.
DG x

[murphydurf]

Hi hoping4best - Tibolone is also known as Livial - your medics may recognise that name.

Good luck finding your regime.

Mx

[Tempest]

Hi, hoping4best. Yes, you're correct that Livial/Tibolone still isn't available Stateside yet. The FDA have been 'watching' this drug for a number of years as I understand it, but haven't yet approved it. I know you can get it in Canada though - and have heard of ladies buying it 'across the border' before.

[hoping4best]

Ah yes! To clarify, Dancinggirl, I am in the US. We don't have tibolone/livial available yet, though it sounds like it's not quite what I'd need yet.

I'm 42, went into surgical meno/POF after a single ovary was removed when I was 38. I spent 2 years on estradiol patch + oral progesterone (utrogestan/prometrium) + local estrogen (Vagifem and Estrace cream), continuous, and I experimented a little too much with the patch and progesterone doses, and the fluctuations (I think?) caused a *ton* of ongoing hair loss. The estrogen patch caused bleeding and cramps from adenomyosis in my uterine wall. I am coming off a 1-month break to see if my remaining ovary might revive itself (it's alive, but isn't ovulating). It's totally down for the count. So, I am restarting my hunt for an HRT regimen that might work better for me.

So it's interesting that it's private GPs in the UK who experiment with "off-label" vaginal progesterone use. I couldn't wait a whole week for my specialist appointment, so I cut a patch and went on 0.05mg estradiol and am taking 200mg progesterone vaginally this week, just until I get to the doctor, where I guess I'll decide whether I will try a Mirena and a patch.

What I meant about the gel is that every single doctor I've seen for my HRT treatment (oh, many now)... nobody even mentions gel as an option. I don't know anyone using it. At least where I live in the US, doctors are pushing the patch. So I am going to ask about gel, too.

Thanks so much!