Endo thickening on ultra low dose, wonder why?

[nightowl]

Hi All

The meno clinic have been trying for years to find a suitable regime, been through the spectrum of HRTs. I'm difficult to treat due to progesterone intolerance and migraine.

Anyway, to cut a long story short, hope this is not too complicated - I came off HRT earlier this year for 3 months due to worsening migraines. Tried alternatives but only had minimal relief.

Had to go back on HRT (patch) after 3 months, as return of all symptoms, particularly lack of sleep, sweats lasting ALL NIGHT, etc etc were driving me to a breakdown.

Clinic recommended ultra low dose regime - *HALF* 25 Estraderm twice weekly, Vagifem 25 twice weekly, *no prog*, 6 monthly scans. Tiny dose of estro.

However after just 7 weeks of unopposed ultra low estro, I had a nasty black bleed, not heavy just v.unpleasant - reported to clinic and they immediately booked scan. Endo lining had gone from 1mm (when off HRT had a scan) to 7mm in a short space of time!

Told to take 12 day course of prog - Cyclo 400, can just about manage this but still makes me ill - in the past Cyclo always created a bleed - BUT why NO BLEED this time, eek! Just when I need it to get reduce the thickening.

Have to take another 12 day course of prog next month and have another scan on 1/10, if endo still thickened then sample will have to be taken.

Concerned that the lining is still in situ though, as no bleed, wondering if it could have been "re-absorbed" but guess that is not healthy either.

Has anybody ever experienced taking prog, then had no bleed?

Very worried.

Any thoughts appreciated ladies.

Night_Owl
x

[jacksfullofaces]

Hi Night Owl
HRT would immediately thicken the endometrial lining - have you got a scan done when you previously used hormones to give a base figure of what is normal for you when taking estradiol? Do not panic - clinic is just playing it very safe. I'm puzzled that you had no bleed post progesterone but recommend waiting and seeing.
hugs Jacks

[nightowl]

Thanks Jacks for your thoughts - previous scan when on HRT, taken post bleed, was 4mm, as I recall.

Just surprising that the recent endo build up happened so quickly - and yes, puzzling that no bleed, usually I get cramps, the full works, this time, nada.

The ultra low dose no prog regime suggested is similar to the USA Menostar. Obviously not for me though.

Clinic once again emphasised taking high strength full course prog - I did ask for lower dose - adamant that all the lower dose progs (eg. lower dose 200mg Cyclogest x 10 days) do not offer sufficient protection, apparently lower doses don't totally shed the lining, small areas can remain "stuck" and that is what creates the problem as the years go by.

So clinic have gone from recommendation of no prog - to monthly high dose.

confused.com

This HRT game is so much trial and error and *highly individual*. Clinic admitted that they don't know where to go now with my treatment. Current focus is just to reduce lining. Hyster yet again was mentioned but so don't want to go down that route.

Just worn down with the crushing disappointment of yet again not being able to find a tolerable regime.

I end up feeling hideous off HRT, however not that much better on it, just manage about manage to get some sleep, some lessening of sweats, VA and hair loss still advancing alarmingly though.

On plus note, clinic have now referred me on to see an Endocrinologist for further tests - 3-6 month waiting list.

Thanks for listening, rant over.

Night_Owl
x

[gobe]

Rant any time you feel the need nightowl.

[jacksfullofaces]

Night Owl
I'm pleased you have been freferred on - my gut feeling says that you need a second opinion .
hugs Jacks xxx

[Robyn]

Hi Nightowl - I'm really so sorry to hear that you are still suffering so much. btw - I did receive your email the other day and I will reply - I guess I'm just having my own pity party at the moment because I'm not doing so great either.

I really wish you could find something that suits you and that will give you back your life. I know how much you have been suffering, so my thoughts are certainly with you.

[nightowl]

Thanks ladies for your kind words and useful replies.

Just beyond confused with it all - keep thinking that with such a low dose then you wouldn't expect such a thickened endo - but I have, and is it still stuck there, black and nasty. eww.

The low dose hasn't done much in abating symptoms, only a tiny bit, insomnia is still very much a problem.

Bella, will read and re-read your post, foggy brain takes ages to take in info - there's no way I can tolerate norethisterone, I'd be having a nervous breakdown. Maybe the Cyclogest hasn't "worked" as such but then it has in the past. Ablation hasn't been mentioned, hyster many times though. I'm so squeamish about any gynae related surgical procedures, just the thought of any of it makes me want to faint!

Will discuss it all after next scan at meno clinic appt 25/10. Seems a long way off though, a lot of time to worry.

Robyn, sorry to hear you're not feeling so good - are you still on patch / Utro?

Will report back on outcome, thanks again for support.

Night_Owl
x

[Robyn]

Aug 28, 2012 19:42:48 GMT nightowl said:

Robyn, sorry to hear you're not feeling so good - are you still on patch / Utro?

I'll send you an email. I don't want to hijack your thread with my issues.

[susan]

Hi nightowl

I haven't any words of wisdom I'm afraid, but wanted to say sorry to hear you are having such a tough time with all this and offer my verbal support.

I ended up with 7mm lining but unlike yourself where it seems to have been caused by 17.5 mcg estraderm unopposed by progesterone, mine appeared to be caused by 16 months on a continuous combined HRT tablet.

It seemed odd as I was having a small amount of oestrogen and a small amount of progesterone everyday and don't feel I ever got to the bottom of the problem, or if they really considered a 7mm to be a problem, or that I just got caught up in NHS protocol that anyone with slight spotting must be referred.

I was sent for the same procedures ie the transvaginal scan followed by hysteroscopy.

However nothing appeared to be found apart from atrophy.

Like you I'm still concerned that this 7mm lining might be in situ 6 months later, but having changed HRT I no longer spot,

You do have my sympathy as it seems for many women working out a suitable regime is a nightmare and requires the patience of a saint. I can understand you persevering though if you feel worse off it than on it.

I'm wondering if the cyclo on it's withdrawal is not strong enough to trigger the bleed?

Will you be having another 12 day course of it in the near future ?

Maybe you will get a bleed at the end of that. You must be at your wits end.

xxxx

[jacksfullofaces]

if they really considered a 7mm to be a problem, or that I just got caught up in NHS protocol that anyone with slight spotting must be referred.

Yes that is precisely what happened to you Susan. I arrange my own scans to keep an eye on my lining and the person doing it told me that if the number i.e 7mm is normal for you then it isn't anything to worry about. Apparently it is numbers above 12 which are cause for concern.
I will have a scan next year because the ovaries can be checked at the same time - NHS protocol doesn't advise preventative screening for ovarian cancer as a routine check.
Jacks

[susan]

Aug 29, 2012 11:43:17 GMT jacksfullofaces said:

if they really considered a 7mm to be a problem, or that I just got caught up in NHS protocol that anyone with slight spotting must be referred.

Yes that is precisely what happened to you Susan. I arrange my own scans to keep an eye on my lining and the person doing it told me that if the number i.e 7mm is normal for you then it isn't anything to worry about. Apparently it is numbers above 12 which are cause for concern.
I will have a scan next year because the ovaries can be checked at the same time - NHS protocol doesn't advise preventative screening for ovarian cancer as a routine check.
Jacks

Thanks Jacks, I thought so. I won't say anymore as I don't wont to take over nightowls post.

[jacksfullofaces]

Sweetpea
I had mine done privately - self referral - booked online and done 48 hours later - instant result £100. There are quite a number of locations offered by the place I used.
Jacks
www.babybond.com/babybond-scan-locations.php

[susan]

with apologies to nightowl

sweet pea, with my health authority (or maybe my GP) they only have to get a whiff of post menopausal bleeding and you should be able to get a scan on the NHS - may vary from area to area though, the otherthing is they may just say stop taking HRT (any excuse : but hopefully they are more enlightened.

xxxx

[jacksfullofaces]

Hi Sweetpea
No this is just the results but they send a copy to your Gp who will act if there is anything amiss.
Jacks

[nightowl]

Thanks again for your thoughts on this, ladies - am in grip of hideous two day migraine - god the pain is horrendous - will read through / input when recovered.

Robyn - thanks for your email, will get back to you - sorry to that you're not feeling so great, hope you find some relief.

Night_Owl
x

[susan]

Are you still looking in nightowl ? Wondering how it was going and if you were felling any better ?

xxxx

[nightowl]

Hi Susan - thanks for asking.

Well, the bleed didn't arrive at all after the last course of prog (Cyclogest 400 x 12) which is very weird.

Now having to take another course of the dreaded prog. Day 2 and as usual feeling vile, headaches worse, sweats worse, nightmares, exhausted, increased hair shedding etc etc.

Endo scan booked for 1 October. Still wondering if I have nasty black layer stuck up there, who knows. Emailed meno clinic a few weeks ago re: non bleed - but the nurse is away.

In readiness for phasing out of Vagifem 25mcg in December, have started using Vagifem 10mcg x 3 per week. Was using 2 but had to up it to 3 as started to get the horrid VA cactus sensation.

Called Novo Nordisk to ask if they would consider making the applicators biodegradable - don't like using 3 of the applicators per week, 2 was bad enough. A disinterested customer service rep noted my comments.

Somehow I've managed to go on hol with OH (not abroad) had a lovely time but meno and overactive bladder certainly impaired enjoyment. Looking at electronic photos, can't believe the state of me!

Has anybody else gone over to 10mcg Vagifem? If so, how are you getting on.

Night_Owl
x

[susan]

Hi Nightowl

Glad it doesn't sound all bad and that at least you managed a pleasant break away with OH.

Well done for writing to Novo Nordisk even though I guess they won't do anything to their new little 'money spinner'.

A few of us wrote to Merck about the fact that FemSeven Conti didn't stick properly and basically they treated is as though it was the individual writer had the problem and that it was the first they knew about it, which was just rubbish as more than one had contacted them. Think I deleted the emails in disgust.

I haven't gone over to the 10 mcgs as thank goodness I have a load of 25 mcgs to use up. I'm dreading it as even with systemic and 25 mcgs i have a few 'cactus' moments.

No idea how I will get on with estriol if I have to go over to ovestin or ortho-gynest, as they are weaker and messier, but have already decided that 2 x10 mcgs will not do it for me.

I wonder if you are going further into menopause and that is why you are not triggering a bleed as your own hormones are retreating a bit more, although that doesn't tally with the endometrial build up.

Good luck with the appointment on 1st October and do let us know how you get on.

xxxx

[Robyn]

Good to hear you managed to get away for a little while. At least 1st Oct is only just over a week away now, so hopefully the results from that will be good.

[nightowl]

Thanks girls. Scan on Monday.

Just finished another course of Cyclogest that I didn't tolerate well - in fact felt worse this month to last - with the prog intolerance issue (for me anyway) I definitely feel there is a cumulative effect. I look like a junkie, dark circles under my eyes, really awful -
"me" vanished years ago.

Heard back from the clinic that if there is no bleed and lining still thickened then I'll have to take Provera or Norethisterone - I really hope not. Think I would prefer to try Duphaston.

On a plus note - been using only TWO 10mcg Vagifem per week for quite a while now - and things "seem" to be okay on this lowered dose. Time will tell.

Am going around in huge circles with this prog intolerance issue.

Still can't accept the idea of hyster. It's like there's nowhere left to go with treatment. I don't tolerate ANY prog. Also don't feel that well when on estro only section - just know I'm so much worse without it at all. Whenever I come off HRT, there is no settling down or adjustment and the all night sweats/heat becomes horrendous, plus return of all symptoms.

Really need to get this sorted, most of us need to work don't we for another X number of years (16 for me), meno makes life so difficult!

Night_Owl
x

[susan]

Hi nightowl

Thanks for the update.

Just wanted to jump on and wish you luck with the scan on Monday, I hope it goes well, do let us know how it works out. Maybe the Duphaston Bella mentions is worth investigating if you can find anyone who still prescribes it. It's so difficult for progesterone intolerant women.

It's a nightmare when you can't get the hormones right, but then you are even worse without them. It means you have to continue trying and tweaking things, talk about a no win situation.

I feel I must press on and take HRT as I cannot give in and be a hormonal mess at work I need to try and hold it together there at the very least, although I need to hold it together at home as well. At least I seem to get on with the progesterone in my patch so should be grateful for small mercies. Even though I would like to take a more natural one like utrogestan.

Very encouraging news that you are managing well on the two 10 mcgs vagifem a month, as there are a few of us on here who were worried about the effect of this so glad it is working for you. Let's hope we are all as successful on the reduced amount.

Fingers crossed for you on Monday.

xxxx

[Robyn]

Yes, hope everything goes well for you Nightowl.

[nightowl]

Hi ladies

First chance to reply today as things have been bleak lately - dad rushed into hospital with major bleed from bladder then two trips to A&E afterwards with severe kidney pain, awaiting investigation - mum also very poorly with lung infection - both parents ill at once, they're so frail now, in their 80s, such a worry - so I've been away staying with them, 1.5 hour drive from my home.

Had to cancel my scan on 1/10 and rescheduled for today - not ideal as it's day 19 since stopping prog (when the scan should have been taken on day 4)

Relieved as the lining has reduced from 7.5mm to 4mm.

1 to 4 is "normal" so I'm still at the upper end though.

However after two courses of prog, I did not have a bleed at all.

The ultrasound technician said it seems that the lining would have been re-absorbed, but as mentioned above, surely that is not healthy, I'm wondering.

Meno clinic appt next week, so will discuss it all then.

Guess that half 25 patch opposed by prog is not enough to create a bleed but endo thickening - how weird. Maybe the clinic will be able to shed some light on this next week. Will report back.

Thanks for listening.

(What's happened to Bella, hope you're still around?)

NightOwl
x

[Robyn]

Hi Nightowl

Good hear from you, but really sorry to hear about your parents. I guess a lot of us are going through similar things at our age. My Dad passed away a few months ago (I think you knew about that), and Mum is getting quite frail. Just finalising moving her into an aged care self contained unit soon, so that will make things a lot better for everyone.

I don't know a lot about linings or what is "normal", so I can't really give much of an opinion about that. Regarding Bella - I will send you an email.

[susan]

Hi Nightowl

Sorry to hear about your parents, it's very difficult coping with menopause and all that having elderly parents brings as well. Especially when we are trying to do our best for them. I can understand why you cancelled your scan.

On the plus side it's good news your lining is down to 4mm. That is lovely and thin so that must be a weight off your mind. i think as we go further into menopause then it just remains thin all the time, if all is well.

Also standards very from Country to Country from what I have read so someplaces in Europe they wouldn't even bother to do investigations unless it was over 10mm. It all seems to be a bit arbitary.

Good Luck with your meno clinic appointment, maybe go with a list of questions to ask incase you freeze on the day (I always come out from appointments having forgotten to ask them something). It would be great to hear how you get on.

xxxx

[nightowl]

Thanks ladies for support/comments.

Just back again after many weeks spent at parents - dad was in hospital twice, A&E three times, mum in once. All in all, bad experience for both of them, particularly mum, she never wants to go in hospital again, the level of care was very poor at Eastbourne General Hospital. It's been a hideous time. Parents are so resistant to help too, ie. don't want any outside help or modifications to their home, not accepting that they're now older (80s) and changes have to be made - guess I will be the same though when my time comes.

It is very difficult isn't it - coping with elderly parents and meno, especially when they don't live nearby - I don't have children so guess in a lot of ways I have more time to cope - it's just all so depressing though.

Sympathies to all those out there coping with ageing parents and facing the awful inevitable. Have got so deep thinking lately about the whole circle of life.

I couldn't make my meno clinic appt as it was during the thick of it, rescheduled for 29 Nov.

Still no bleed so I guess the low dose estro is not enough to create much of a build-up. I'm sort of okay, not great, migraines slightly better on the ultra low dose, however think a lot of my symptoms are down to meno PLUS Rheumatoid Arthritis, possibly Sjorgens Syndrome too, need further investigation.

To complicate matters, before all the situation developed with my parents, I moved in with my partner, so now need to get settled, etc etc, find a new GP and am not impressed by what I've discovered so far - isn't it wrong for GP surgeries to use 0844 tel numbers, thought there was a government directive against this - plus the local surgeries here only seem to offer 2 month prescriptions when my last GP always gave me 3 months, no quibbles.

Anyhow, that's enough of me whinging on, just have to get on with it and hope everything stabilises with time.

J x

ps: thanks for emails, will reply soon.