Oestriol and Lupus: I am 71 and have had... - LUPUS UK

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Oestriol and Lupus

skylark15 profile image
35 Replies

I am 71 and have had recurrent UTIs.

My GP has prescribed me Oestriol cream and told to use it daily, on my genitals, to help with the post-menopausal atrophy of the general area but particularly around my urethral opening.

With oestriol I do not need progesterone.

The leaflet in the box says that particular care should be exercised " if you have a disease of the immune system, eg SLE ( lupus)".



I should like to know if anyone on this forum has used this form of topical HRT and if so,any problems, such as a flare of symptoms?

Thanks.

35 Replies
KnitSewPurl profile image
KnitSewPurl

Hi , I use the cream but I can only tolerate it twice a week even that it makes me very thirsty and dry post using it. yes it does flare up my lesion spots as I have been having it continuously even before I started the cream they have been small not big that they are normally. As for the UTI, I did have recurring UTI and had bladder wash out it resolved the issue of the UTI. I don't have it any more you might want to request a bladder washout as bacterial is still collected in the bladder and not getting rid of it . when I saw the urologists they also checked my kidneys to make sure that they were ok , not enlarged or deformed or any abnormalities. Btw ,I saw a private urologists as NHS took took long to be referred.

The cream is meant to keep the urethral moist. As most SLE's are very dry . I also use OB plant base, in between days.

the plus side I am not total dry and not in pain down below. I am usually in pain due to the dryness.

hope you get it sorted out xx

skylark15 profile image
skylark15 in reply to KnitSewPurl

Dear KSP,

Thank you for your helpful response. I have been referred for a renal tract ultrasound, which may puck up any anomalies, in which case i might fit the criteria for a cystoscopy. Oh joy.

I'll see if I can find the OP cream you mention.

T.

Djlr profile image
Djlr in reply to KnitSewPurl

A few things you can do that can help NATURALLY -

- I started CRANBERRY Concentrate GEL CAPSULES (extra strength) - read about the various ones on AMAZON & find one that people say WORKS GREAT for UTI

(Currently - I am using - BRI Nutrition Brand name)

- Take Proper DOSAGE on Bottle EVERY DAY

Cranberry Extract: 252 milligrams

(This stopped my UTI’s &

I drink Cranberry juice occasionally)

Coconut OIL (solid form)

use for DRYNESS. (Natural & helps)

Hopes this helps some 💜💜💜

skylark15 profile image
skylark15 in reply to Djlr

Dear Djlr,

Thank you for your reply. Cranberry extra strength capsules sound interesting: I'll check them out. I'm glad they've given you some relief from wretched UTIs.

Not sure about using coconut oil (solid form) 'down below'; I associate it too strongly with delicious meals 😋!

T.

WinterSwimmer profile image
WinterSwimmer in reply to Djlr

Cranberry won’t help the dryness and shrivelling caused by ageing. Sorry to be graphic, but topical HRT is a godsend for me. I use as needed and get it on repeat prescription. There are other brands, too. You could ask for something else?

skylark15 profile image
skylark15 in reply to WinterSwimmer

Dear WS,

Thanks for your reply and if we can't be graphic (and thus, clear!) on this, our own forum, where can we be😅😅?

I'm going to give the oestriol cream a try, partly because my GP has been so helpful and thoughtful, in trying to find something that strikes the right balance between risk (to my cardiovascular system as well as my endometrium and breasts) and possible benefit, ie reduce the frequency of UTIs. Fingers crossed 🙂.

T.

Djlr profile image
Djlr in reply to WinterSwimmer

You are CORRECT -Cranberry Gel Capsules only help with our UTI’s -

Since I started the daily dose of Cranberry Gel Caps - I haven’t had any UTI’s in over 2 1/2 yrs 🤗

But the DRYNESS was healed w/Coconut Oil - used as needed.

I am sure others may have more severe cases, but always good to try Natural for us as much as possible-

‘We take some many meds & they may add to the dryness.

menopause.net/featured/thes...

I also get a little concerned since HORMONES are one of the POSSIBLE “Triggers” for Lupus Flares. (ie:HRT’s)

It’s great to share ‘all ideas’ of what may work as we are on this

Lupus journey. 💜

OldTed60 profile image
OldTed60

Oh my I just started this too but didn’t read the leaflet. I will now though but saw vulval skin specialist yesterday who asked why I’d had this added as well as vagifem pessaries. I said GP says I can take either or as they are basically the same. She said this is okay and knows I have MCTD.

I’ve used the pessaries for years. But sometimes need something more moist and easier to insert due to prolapses. I’ll look now at sheet - but does it give any suggestion on why? I’m ten years younger than you and have osteopenia. I feel I should have been on oral HRT post menopause as am always getting urethral and other issues including chronic pelvic floor pain. I guess hormones are flare triggers for some, me included, but I think I’ve been okay using it so far. Hard to be sure as started it while in hospital for IViG and then had a severe skin reaction, presumably to the latter. All making me wonder? 🤔

skylark15 profile image
skylark15 in reply to OldTed60

Dear OT,

Thank you for your response. Im glad youve found the Oestriol cream helpful and easier to use. No, there's no detail on the data sheet to say why the cream should be treated with caution. If you discover anything, I'd be interested to know. Thanks.

T.

Djlr profile image
Djlr in reply to OldTed60

HRT are not usually recommended for Lupus patients since estrogen can be a TRIGGER for lupus flares.

pubmed.ncbi.nlm.nih.gov/175...

marcellepick.com/lupus-horm...

kaleidoscopefightinglupus.o...

OldTed60 profile image
OldTed60 in reply to Djlr

Thanks. I see this applies to oral HRT rather than topical - which is a tiny fraction of the amount absorbed compared to oral. So personally I wouldn’t worry although I have MCTD rather than SLE - but still very hormonal driven. But it explains maybe why I wasn’t allowed to take it orally despite asking.

KnitSewPurl profile image
KnitSewPurl

btw I initially tried on pessaries(tablet) it was very bad it felt like the whole world was draining me dry out . I could not get enough fluid in to my body to replace my thirst. so I had to stop it immediately. and contact my consultant to let him know it was then I was put on cream you can adjust the amount you put it. where else the pessaries you cannot. So , I initially, I gave myself a very small amount like half dose just to see how my body cope with it . for a few weeks then slowly increase it until I felt are confident enough to use it.

skylark15 profile image
skylark15 in reply to KnitSewPurl

That's interesting, KSP. I'll bear in mind the thirst the cream may induce and will start using in in a small dose to start with. Thank you.

T.

OldTed60 profile image
OldTed60 in reply to KnitSewPurl

I totally agree - exactly the same experience apart from reaction to pessaries. I’ve been having awful vulval pain and my dermatologist found structural abnormalities so biopsied me in May. All clear so they decided it was historic traumatic deliveries (shoulder dystocia, episiotomies and related damage done).

Finally I saw a pelvic floor physio who suggested I ask GP for oestriol as had been struggling with soreness after vagifem for years and had all but given up on them. So I did and in small amounts it’s great but full dispenser and I’m finding it in my pants and in bowl all next day.

So I now use half the dispenser or less and this works really well every few nights.

I alternate with vagifem (new one can’t recall the name but just one dispenser) as that at least stays put if I can fully insert. I use YES (VM) with the oestreol dispenser at half to make easier to get pessaries up. This combination has been a bit of a game changer for me with my provoked Vulvodynia.

skylark15 profile image
skylark15 in reply to OldTed60

Dear OT60,

Glad the biopsy was normal. Wow, shoulder dystopia. That must have been really frightening for you, and as you say, inevitably caused vaginal trauma. I hope the baby was ok.

T.

OldTed60 profile image
OldTed60 in reply to skylark15

Thanks. Yes I had 3 traumatic deliveries. I’m small but they all took after my husband’s family - tall!!

It’s shoulder dystocia I think - I’d blotted it out until the dermatologist examined and asked if I’d had surgery down there. I said no and then later had flash backs to being told “either we break baby’s shoulders or we have to cut you open?” - by this time his heart was irregular and cord round neck so it wasn’t much of a choice of course!

He’s got a big shoulder swagger now and is happy healthy guy so all worth it … but price we women pay 🙄

skylark15 profile image
skylark15 in reply to OldTed60

One of these days, I'll remember to check what this device thinks I SHOULD put, and insist it stays with what I have typed😂! I'm glad your son survived and is happy and healthy. Indeed, the price women pay.

T.

OldTed60 profile image
OldTed60 in reply to skylark15

😂 I’d never heard of shoulder Dystocia let alone how to spell of pronounce it until there was some tv drama about a junior dr on an obstetrics ward called “This May Hurt” with a shoulder dystocia case just like mine. Described it to my pelvic floor physio and she said “oh yes that’s a classic case!”. All these years of successfully blocking it out and now my body has decided to tell its story!! So I’ve just got my spellcheck and my story synced! 🥴😉x

KnitSewPurl profile image
KnitSewPurl in reply to KnitSewPurl

Btw I am only 50 had my hysterectomy in my 40s due to infected fibroids which they discovered when they opened me up . Which does makes me wonder if it was lupus related.

CSLO profile image
CSLO

Hi Skylark

Oh this getting old malarkey is no fun sometimes is it?!

I don't use the cream but do use the pessaries Vagifem. I've never had a problem at all. They are supposed to be used twice a week but I have to use them every other day to stay comfortable otherwise it can be like having razorblades inserted in the nether regions! I also have to do a two week daily reload every couple of years or so.

I've seen HRT specialists and my rheumies are both in agreement that it is fine to use with the CTDs. It would seem that the dosage is minute with the local cream or pessaries and absorbed in the local tissue to allow it to plump the cells. It doesn't appear to have the same negative results it can have for Lupus if you take HRT in tablet form. However, saying that, all of us are very different and have to take advice from our own specialists.

Give it a go, it can take a few weeks to notice a difference but oh my, what a difference it can make!

Good luck!

skylark15 profile image
skylark15 in reply to CSLO

Thanks, CSLO.

Absolutely no fun at all, I agree!

Your reply is helpful and encouraging. I will give the cream a go, using a small dose to begin with and see how it goes.

T.

Cas70 profile image
Cas70

Hi - we all react differently- for recurring UTI’s I take D -Mannose you can buy in health shops. It is the kernel of Cranberry made into pills. It helps kill the bacteria in urine we all have left in the bladder - I have found Vagisil is the best for the itchy genitals - for HRT my gynaecologist gave me a topical cream Progesterone (arms and upper body). Good luck

skylark15 profile image
skylark15 in reply to Cas70

Thanks, Cas70.

To counter the bacteria I have been taking Methenamine hippurate bd for several months now. It did the trick up until very recently, when I got a string of UTIs one after another. Before that, I tried D-Mannose and it gave me dreadful diarrhea ☹️.

I don't have itching; the problem is with tissue atrophy, that's why I'm going to try the topical oestrogen.

T.

KnitSewPurl profile image
KnitSewPurl

I thought sent you a pic of the YES OB plant base but obviously i did not

YES OB tube plant base white and blue
skylark15 profile image
skylark15 in reply to KnitSewPurl

Thanks, KSP.

I have seen this YES cream. It sounds good.

T.

Treetop33 profile image
Treetop33

I use it. And low dose HRT. I've been fine. If one brand doesn't agree with you try another. I'm on Bissel which seems fine.I also use Yes moisturiser and balance activ in between.

skylark15 profile image
skylark15 in reply to Treetop33

Hi, Treetop. That's encouraging, thanks. And about using other brands.

What low dose HRT do you take in addition to using the Ovestin cream?

T.

Treetop33 profile image
Treetop33 in reply to skylark15

Testogel, Oestrogel (both gels) and Utrogestan (capsule).

skylark15 profile image
skylark15 in reply to Treetop33

Thanks. I have the Utrogestan, as well but not the Testogel.

T.

Treetop33 profile image
Treetop33 in reply to skylark15

I found small doses of it helps with energy. You have to basically experiment and not be talked into anything by docs. I take ustrogestan every other day, a small spot of oestrogel every day and a small dab of testogel every other day. My doctor says I'm doing it all wrong, but for me it's about taking the edge off while not provoking an autoimmune response.

skylark15 profile image
skylark15 in reply to Treetop33

That makes absolute sense.

T.

Halfwayuphill profile image
Halfwayuphill

This is such a uninteresting useful post. I have been given some Esrtradiol pessaries by my GP when she changed my pessary for a prolapse. They have been sitting in my cupboard as nervous to use them but as my next appointment with my .Rheumatologist isn’t until next year, I might try now reading all your posts.

Regarding D- Mannose, I get frequent uti’s due self catheterisation and the SIBO. The D-Mannose inflames my -SIBO so I cant really use it. I have UCTD with systemic sclerosis gut issues. Weight loss SIBO and other digestive tract problems, prolapse uterus and urine retention all happened together although I already had reflux, UCTD, fatigue and osteoporosis. I too have found a reputable pelvic floor physio who I am seeing in September.

Hope the cream helps you. It’s good news it seems to have helped other on this site. Perhaps it might even help my osteoporosis and others at risk.

skylark15 profile image
skylark15 in reply to Halfwayuphill

Goodness me, Halfway uphill ( what a great name!), you do have a lot going on. I hope you find some reassurance in the many lovely and helpful replies I've had to this post. It seems to have struck a chord. To good luck with your trial of the oestriol.

T.

Zoe-mabel profile image
Zoe-mabel

I was prescribed Oestriol cream 6 years ago when I had surgery for a prolapse with continual UTI’s and bladder incontinence. My consultant was keen to establish this regime to help with vaginal atrophy. I’m 69 and very aware that HRT has always been considered inadvisable for lupus patients. However I was told it was perfectly safe for me as a small topical topical application.

I have not noticed any extra symptoms, and I’ve only had recurrent cystitis once when I assumed I was healed enough to stop using it.

I also have RA, Interstitial Lung Disease, and Osteoporosis and with all these conditions the thing that ultimately used to reduce me to tears was continually battling UTI’s, dryness and pelvic discomfort. Hooray for Oestriol cream on repeat prescription used 2 nights a week and occasionally an extra dose! Good Luck to you and I hope it suits you too. Keep drinking water, especially in this weather as we all need the extra fluids with the medications we have to take !

skylark15 profile image
skylark15 in reply to Zoe-mabel

Thanks, Zoe-mabel,

That's all very encouraging. It sounds as if you had a long, uphill struggle to find a solution for your inter-connected urogynae conditions. I'm so glad that you got there in the end. That must have given you some strength to cope with the others. I wish you well, managing that unpleasant trio.

I will try and keep hydrated, not just because of the heat and the risk of UTIs but because I have an extremely slow gut transit time and consequent unconfortable constipation ( which undoubtedly contributes to the pelvic congestion and urethral irritation: sorry if too much information), so I've been prescribed macrogols (which draw cell-water into the bowel) and other gut encouragers, so I get very thirsty.

T.

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