Vaginal Atrophy & Tamoxifen

[Gaaya]

Evie-S

Yes I was prescribed vagifem too.

Don't know if it has worked as no longer with my partner! : 0

But I do have sore breasts and period like pain.

Not sure about it to be honest

[Gaaya]

Hi

Breast cancer in 2010. E+ Lumpectomy 4.5cm lump, no lymph node involvement, chemo, radio I went on Tamoxifen for 5 years. Then had polyps so moved to Arrimadex which made sex completely impossible due to vaginal atrophy. So after 18 months went back on Tamoxifen for 5 more years. Then awful heavy bleeding after post coital tear the gynaecologist gave me oestrogen pessaries. I was reluctant but she insisted that I should as she said she could even see all the blood vessils! But I now have sore breasts and period like cramps. They want me to stop taking Tamoxifen as they say there is no evidence to say it works after 10 years. But there is no evidence at all after 10 years. I was interested to hear that someone on here was advised to take it for longer. I can tolerate the vaginal atrophy but too scared to stop taking Tamoxifen. Any thoughts ladies? 

[suzan]

hi  I was on tamoxifen and then arimidex   I was given replens by my doctor its just an applicator that you insert every 3 days or so  easy to use  ask your doctor   I expect you can buy it but cheaper on prescription I would think love suzan

[Debc33]

Hi hope your ok, where can I purchase the menopause balm? 

[Sleigh]

Hi, only just joined this forum after speakig to a McMillan nurse. I am 5 or 6 years down the road after chemo, mastectomy and reconstruction followed by Herceptin infusions. Have been on Tamoxifen since. Met a lovely man 2years ago after leaving a 39 year abusive marriage. I grudgingly accepted that we would have to use lubricant when making love but lately have been getting sore and itchy after a few days. We have tried so many different remedies my head hurts. He worries about hurting me, I fret about being so delicate. Yours is the first post that has echoed my frustration. My gp has said he's referred me to a genital dermatologist but have heard nothing in 2 months 😩 felt like I was just whingeing and should be grateful for surviving. Feel slightly better to read someone else in a similar position

et a lovely man 2 years ago after 39 year abusive marriage. A

[Pat2]

Ferdi where would I buy the balm please?

[Linda Corinne]

Yes oil and water based lubricants allowed penetration. The applicator oil based one is best. You can use the oil then the water one at the same time and use the oil based one from the tube too. I keep meaning to buy the oil applicators and am waiting for a good offer and free delivery. Think water based lubricant is available on prescription.

[Pat2]

Hi, I read this and felt as if the words had been taken out of my mouth! I too have been on Tamoxifen for 3 years and the side effects are getting worse. I, like you had a lumpectomy, rads and also 4 lymph nodes removed. My symptoms are exactly the same and I have tried most things too. Nobody tells you this can happen. I also have M.E. fibromyalgia and a few other illnesses but this has nearly finished me off. I am seriously thinking about coming off the tamoxifen altogether. I discussed my symptoms with my GP and my specialist nearly 2 years ago and they couldn’t really advise me. I just feel the side effects are too much to bear. 

[ferdi]

Hi Evie,

i hope it works. Give it a few days and regular applications as it took this long for me to see a difference.

Cx

[Evie-S]

Hi ferdi - thanks so much for that recommendation. I’ve just googled and looks like Superdrug sells it so I’ll check it out.

Evie xx

[ferdi]

I was diagnosed in 2010 with E+ breast cancer. Had a mastectomy, radiotherapy, chemo and rads plus the joy of 5 years of Tamoxifen. Like many women on this thread, no one in the medical profession has been very helpful with side effects. After a 2 year break, I’ve been advised to do another 10 years on Tamoxifen. I have had all the sore joints etc but the worst side effects for me are the vaginal dryness and sore bit! I can honestly say I’ve tried most of the products mentioned here, Vagifem, Yes, etc and nothing has helped. I was on the point of giving up until I found MegsMenopause balm. I was very sceptical but it’s the only thing that has worked for me. Worth a try.

cx

[Justjo]

Hi, just to let you know that YES is available on prescription. My GP had to have a good look but found it. She was going to prescribe Replens but I  told her I tried it and ended up getting thrush, Grrrr! Was told that thrush liked moist warm areas 😂 almost as if I  should put up with the problem. I  have only used YES once but I think it's ok, fingers crossed! You can use it every three days but I am going to try it once a week, so my area doesn't get too moist or warm 🤣 good luck to you and all the lovely ladies just trying to be slightly "normal" again. 😘

[Chick1]

Hello Cathy, 

Sorry if I confused.  I thought you said your current BMI is 27.5 and they were withholding surgery unless you got down to 25.  I was just wondering if you felt motivated to show them and lose some weight.  That was all. The GP/nurse could work out the actual loss in Kg/pounds if not already done.  Alternatively, you could raise matters with the hospital feedback/complaint system.

Best of luck, 

Chick 🐥 x

[pecan]

Chick, I'm not sure what you have in mind, as there doesn't seem to be anything I can do.

27.5 is impossible.  It's like telling a bulldog it must look like a whippet.

[Chick1]

Hello Cathy,

What a shame for you.  A BMI of 27.5 isn't that much over the deemed 'acceptable" of 24.9.  I suppose they can make the rules for such surgery.  Do you feel motivated to call their bluff and rise to the chalkenge?

Take care, 

Chick 🐥 x

[Chick1]

Hello all, 

Evie - thanks for your continued support. 15 mile round trip 🤯 and only one month at a time - how ridiculous.  Can the surgery send straight to a pharmacy closer by or pharmacy delivery service?  Perhaps silly question as I am sure you would have looked into this already.

Regards, 

Chick 🐥 x

[pecan]

Hi Chick,

No, the letter was a one-liner saying I did not meet their requirements of having a BMI of 27.5.

If they'd had anything else it could have been open to debate, but that's all there was.

Cathy

[Evie-S]

Hi Chick - thanks for your kind wishes. I just wanted to say I support your hoarding and I would do the same if I could for the same reason as you. The ban on hoarding is to stop waste, but we are going to use what we order, it just cuts down the risk of forgetting and also for me a 15 mile round trip to pick up the drugs! Pain in the ****

All the best to you too.
Evie xx

[Chick1]

Hello Pecan, 

Best wishes for any forthcoming appointments.  Did you ask them to clearly explain why they were advising you to lose some weight first? There possibly may be reasons that benefit you and assist in the success of the surgery.  For example, weight loss may assist in a natural breast reduction and thus reduce the extent and possible harm from surgery.

Regards to you, 

Chick 🐥 x

[pecan]

Yes, I didn't know about the advocate thing, so as soon as I can get my computer to work properly I shall follow that up.

My GP has sent a letter off to the onc regarding my stopping the meds, so I'm thinking I should have one for then.  I also have a second opinion re plastic surgery, so wondering if I need one for that, so need to follow it up.

(Plastic surgery - they want to fix the scar, but can't because the breasts are so heavy, but refuse to do a reduction because I'm overweight.  If my breasts were smaller the overweight wouldn't be an issue, so I'm flummoxed.)

[Chick1]

Hlo Evie, 

Well the surgery may accede to my med requests but they are only a little bit more generous than yours in that they allow 2 months of Anasty at a time. Bleeding pessimists! Mind you, they don't keep account too closely and I have managed to build up nearly a years supply. I know some people may not approve of my hoarding but it means I don't need to stress about getting the same brand in time and can happily wait until sto ks are available.

All the best to you Evie, 

Chick 🐥 x

[Evie-S]

Hi Everyone

Chick - thanks for all that great and detailed advice, and for being so open. I’m amazed that your surgery is so relaxed about giving out meds - mine are super Scrooge like. They will only give out one month supply of Tamoxifen at a time, apparently it’s my health authority’s rules, but does mean that no sooner than I have picked up one pack I have to remember to order the next (and I no longer have a good memory ☹️).

Pecan - good to hear that you have had some improvements since stopping the meds, hope that continues, it takes a while to get the drugs out of our systems. But I’m so sorry to read about awful bias and prejudice you suffer at your hospital. I want to come along with you myself and help you get heard! But I think Chick’s suggestion of getting someone from the Patient Advocacy Services to accompany you sounds a really good idea.

Evie xx

[Chick1]

Hello Pecan, 

If necessary, for the future, why not check out Patent Advocacy Services available to support people in communicating with medical staff. 

Regarding treatments, I suppose we are the ones who decide in the end so no one can force us to have treatments such as radiotherapy.  It normally follows lumpectomy, and is also recommended at times after mastectomy.  That being said, it is a shame if your concerns regarding radiotherapy were not resolved prior to finalising a treatment plan.  There are always pros and cons for whatever path we choose,  I suppose we just have to weigh things up for ourselves. 

By the way, I came across a story about a lady who was prescribed Prep H for V. Atrophy. She said it was for the burning sensation.  Maybe that explains the Anusol. 

Take care, 

Chick 🐥 x

[pecan]

Evie, today I have been off the meds for one week, and thus far have had a small reduction in the oedema in my hands and feet, and my mood is a lot lighter.  And have not been hit by fatigue as badly as it has been lately.  Some of these improvements could by psychological, of course.

Chick1 - I have only told my GP, and after seeing the state I was in she agreed it was best to stop the meds.  However, I think she was just saying that in order to calm me down, and I will probably get a letter shortly, summonsing me to the hospital.  At the hospital I am surrounded by men from South Central Asia whose cultural bias against women hangs heavily against me.  (One of the staff in another department actually recommended having a male companion at consultations.) 

Actually, when I saw the first oncologist after my surgery (not an Asian male) I told her I didn't want radiation, so she very bluntly told me Then you should have had a mastectomy.  (I had repeatedly told the surgeon I didn't want rads, and he kept telling me we'd deal with that later.)

I don't have much confidence in anyone there actually seeing me as a human and not as a case.

[Chick1]

Hello all, 

Pecan - what is the Medics response when you say you are going/have given up on the Letrozole due to side effects? Have you let them know that you are stopping? Perhaps they would be more helpful in recommending alternatives and ways to assist. 

Evie - hello again. You could always ask GP what they offer on the non hormonal front  or purchase products over the counter if you don't like the idea of oestrogen products.  If you purchase, they can be relatively costly.  Some products can also be a little messy etc.  Another advantage with Vagifem pessary - easy to insert and no mess.  

 I probably don't need to say this but if you are looking at products make sure it is a moisturizer type, such as YES rather than just a lubricant.  I think sometimes med staff and others don't realise it is not just about sex.  For some, vaginal atrophy can be an uncomfortable burning feeling all of the time, lead to UTI, bladder issues, feel like you need the loo all the time etc. 

As far as I know, info in the PIL of items like Vagifem are based upon the findings of systemic HRT treatment so it is not product specific. The other thing in your favour is that you are on Tamox and not an Aromatose Inhibitor.  

Regarding side effects, when I used product some years ago, it was brill. After a while, I did get some irritation and burning feeling. I stopped using and all was quite well. It certainly did te trick at the time. I don't use regular now, but I have some in the cupboard.  The last time, I just rang repeat prescription line and asked for them. They are not even on my repeats list. Mind you, the same happens with other items that are not on repeat.  I was going to ring up and ask for something I have never had before and see if I got it - just to test things out ☺.

On a more serious front,  I read an article recently about a women who had had hormone sensitive BC. She was on systemic HRT before diagnosis which stopped on diagnosis. However, she is back on it again after treatment because  she can't do with the effects of menapause.  I can't remember if it was via private GP prescription.  Anyone, she was aware of risks and made her choice. I also don't think NICE  completely rule out use of systemic HRT after hormone sensitive BC treatment. Not something I would be comfortable  with but each to their own informed decision. 

Best wishes to all, 

Chick 🐥 x

[Evie-S]

Cathy - thanks for your message and welcome, I have just realised we spoke on another thread recently about stopping AI drugs. How are you doing?

Evie xx

[pecan]

Evie - I wish my medical team had the sense that yours has!

Cathy

(Oh - welcome to the group!)

[Evie-S]

Hi Ladies

I’m so glad to have found this thread - thanks to all for sharing your info and experiences. Hugs to all those suffering and I hope you get answers.

Chick - I was really interested to read your link to the US advice and also your understanding.

My story - I am ER+ and taking Tamoxifen. I had to see a gynaecologist recently, who has prescribed Vagifem for me, for a short course of 6 weeks. He told me there is absolutely no risk to breast cancer recurrence even if I am ER+. He explained it something along the lines that the amount of oestrogen absorbed is so tiny that the Tamoxifen will deal with it, a bit like if you light a candle (the oestrogen in this case) and turn on the light (the Tamoxifen) then the big light will override the tiny candle. I hope that makes sense, it did to me at the time anyway!

BUT...when I picked up the Vagifem I read the instruction/warning leaflet and have been too scared to use them. It was interesting to read the US advice and Chick’s understanding that I should be ok as I’m on Tamoxifen.

Chick - did you get any side effects from the Vagifem? I’m wondering if I should try one of the non hormonal options first - I’ve not come across “Yes” products, but need to ask about them.

Hugs 🤗 to you all and thanks again for sharing.

Evie xx

[pecan]

Badboob: I have tried Yes, but it causes burning.

Chick1:  Yes, Anusol.  I tried it once!  I had to see my GP this last week, as the physio (sex ed) requested that she refer me for psych therapy.  I had so fully intended to walk in with an Anusol pessary melting in my hand to show her just what she expected me to do, and then I forgot.  But I was in such an emotional state anyway that I walked out less than a minute after I walked in, and then had to make another appointment!

Thanks for the link, I'll read it now.

[Chick1]

Hello All,

Badboob - you make a good point. Sometimes GPs act as if they can only prescribe Replens! I think "Yes" was added to NHS list a couple of years ago. That is great "Yes" has worked for you - these things make such a difference.

Pecan - Anusol for vaginal atrophy 🤯. Oh Pecan, you sound like you have had such a rough time of it. It is such a shame if GP or med staff are not treating you with the respect and working with you to reach the best outcome for you. For what it is worth, I have attached a link from the American Obs and Gyny Org just for info for people.

https://m.acog.org/Clinical-Guidance-and-Publications/Committee-Opinions/Committee-on-Gynecologic-Pr...

I just looked up to see if there was any NICE guidance (not that their recommendations have to be followed.  The only thing I found (there may be other recerences I missed), was the one that says to stop systemic HRT if diagnosed.  

Best wishes, 

Chick 🐥 x

[Badboob]

Sorry to butt into your conversation but I too have been suffering. My lovely oncologist who is very sympathetic has prescribed Yes products. They are available on NHS or Amazon/direct from the manufacturer and my GP has willing added it to my repeat scripts. I’m on Letrozole by the way. 

Its made a huge difference to me and my love life. They are hormone free so safe for us E+ ladies.

Hope this helps 

Hugs 

[pecan]

Chick1, it definitely makes sense that if someone has tried non hormonal vaginal treatments they should be given the chance to try the hormonal ones.  I gave up on trying to get my surgeon (I don't seem to have an onc) to see sense, or even to see me as a human as he comes from a culture where women have very little standing.  My GP insisted on consulting him before letting me have Vagifem, and it was bluntly refused via letter with just one sentence.  Instead she prescribed me Anusol.  Have you ever tried Anusol?  lol

[Chick1]

Hello CA1 and all, 

You may want to check this out with the BCC nurses or other knowledgeable medical staff. My understanding is that local vaginal oestrogen treatment appears relatively acceptable with Tamoxifen as Tamoxifen operates on circulating oestrogen unlike Aromatose inhibitors such as Letrozole etc.  There is divided opinion on prescribing to women who are taking Aromatose inhibitors. However, medical staff should be looking at individual risks and benefits.  And surely it makes sense that if someone has tried non hormonal vaginal treatments (by the way  the Balanc Activ moisture pesseries are quite good - but expensive) and are now considering giving up on the Cancer Treatment then surely a prescription of low does oestrogen local treatment is a better option. 

In my opinion, the trouble with the warnings on the accompanying product leaflets, is that they are based on systemic HRT!  I think there was discussion in USA medical world the other year about making the warnings more product specific.

My understanding also is that initially systemic oestrogen levels may rise with the initial loading does of e. g. Vagifem and then reduces. The point is to use such things at the lowest dose for the shortest time possible.  The dose in Vagifem was reduced some years ago to half what it use to be. 

I think there is a lot of misinformation which leads to contradictions, confusion and misery for wonen!!  When I was initially diagnosed, I was askex if I had used HRT.  I said I had used Vagifem. "oh that's not relevant was the response".........

Well is it was not relevant then, why should it be now 🤔.  By the way,  my GP had no issue with prescribing Vagifem if necessary. Also, it can be useful just to use in preparation for Smear tests. 

Regards and best wishes to all, 

Chick 🐥 x

[pecan]

Hi CA1,

I'm not on Tamoxifen (was on Letrozole), and have the raw lower end and painful non-existent sex life.  I requested estrogen cream and was refused.  I previously had a two month break from the Letrozole before going back on it.  I can identify with your problems, but not the solution.  I have chosen to stop taking the medication (5 days ago), partly because I feel abandoned by those people who said (if you get side effects we can help you deal with them", and partly because I have decided that if the wolf returns I don't want it wrapped in sheep's clothing. 

I don't know how much estrogen Tamoxifen removes, but I would imagine it far surpasses the amount that would be put back by the hormone cream.  My surgeon refused the cream because of a little box that said do not give in the case of E+ cancer, and didn't get to the bit that said "before discussing the risks involved".  In your case you have been given it, and it may well be that it won't even solve the problem.  You could try it and stop it.  It's easier to stop using the cream than it is to stop the Tamoxifen.  And - Tamoxifen has its own risks.  It's so easy for them to tell you what to do when they don't have to walk in your shoes (or underwear). 

I hope things improve for you soon.  You aren't alone in this.

Cathy

[CA1]

Hi

I am in same position as you and I am at my wit's end

I have the red raw downstairs, and constant irritation

I am on Tamoxifen, and my oncologist said I should stay on it

I have been prescribed a low dose eostroge cream which I have not used, as I know there are risks involved

Spoke to my BCN about stopping Tamoxifen, and she said you can't stop them for a while then go back on them

I know the risk of not taking them, but I really cannot go through this any longer

It is that bad it has me in tears

Hot flushes I can pur up with, but this is affecting my quality of life so much

At my wit's end

[CA1]

Hi

I am new to this site

I had lumpectomy in 2016, then chemotherapy, and radiotherapy

My treatment finished in 2017, when I was put on Arometase Inhibitors

I tried to lots and got bad side effects, so was changed to Tamoxifen which I have been on for 12monhs now.

I have had severe irritation, so sore, and actually red raw downstairs which has been going on since January this year

I have been told that it is Vaginal Atrophy, and had several dreams etc but they don't work

I am on Tamoxifen and my GP thinks this is to do with the Tamoxifen

I want to come off it, to do process of illumination, but oncologist said to stay on them

I am at my wit's end and really can't put up with this much longer

Wondering if I should get second opinion

Have been through menopause before cancer diagnosed

Can anyone suggest anything I can do

In my opinion this is not right, and been going on for far to long.

[MillyMoo]

Hi! It's so good that someone has mentioned the awful side effects of tamoxifen and chemotherapy. Like you I'm struggling with the same issues and I feel it is taking over my life. I feel thoroughly miserable and I have bought every cream imaginable. Initially one worked for a few weeks and then for no apparent reason it stopped working and I was back to square one.  I have spoken to Mcmillan nurses and read lots of literature and it does seem the only way forward for me is to use eostrogen cream or pessaries and although it scares me so much I am reassured by the amount that is actually absorbed and I have decided to go for it.😱😱. Also I will be having annual mammograms which help too. So sorry I can't offer any help but thanks for raising the issue which doesn't seem to be talked about but has such an impact! If you do have any success please let me know, I'd be eternally grateful. 

[Southcoastbeachgirl]

By the way, just to add to my previous post- I’m on Exemastane at the moment , not Tamoxifen as thread says. 

[Southcoastbeachgirl]

Hi to everyone in this thread

I have been reading to see if anyone could suggst something that would work for my severe vaginal atrophy. 6 years post surgery and ER+ 8, I am unable to take anything with oestrogen. Replens prescribed by my GP caused me to bleed and suffer quite severe internal pain. Smears make me cry ( thank God I don't need another one for a few years!) and I suffer repeat urinary tract infections which are really debilitation and becoming less responsive to antibiotics.

My gynaecologist has suggested that due to the extremity of my symptoms, the only way forwards is laser treatment.... The prospect of that seems impossible at the moment; it is not available on the NHS and is expensive. Several treatments are needed apparently then annual treatment. While I am waiting to hear more about that,  I am heartened by what I have read about Sylk on here so have just sent for a sample.

Thank you for all your posts as it helps to hear from others in a similar postion x 😘

[Optimissy64]

Hi Pat

Sadly this is an issue for many of us on hormone medication - I've had the same issue on Anastrozole, but there are non-oestrogen preparations that you can use, such as ReplenseMD, which are available on or off prescription. There is a thread on the Hormones section called "Problems with Ladybits" if you want to have a read. I'd emailed the nurses and got a useful reply about diffrent preparations. All the best. xx

[Pat2]

I see it's a while since anybody wrote on this subject. I had a lumpectomy and radiotherapy 2 years ago. I had already been through the menopause 10 years prior to this. My hot flushes have come back really badly and I suffered a lot of problems ( rawness and pain) down below, which my GP says is vaginal atrophy caused by the menopause. I think it has been caused by tamoxifen. I am trying new pessaries and creams but don't like the idea as my breast cancer was hormone related and a lot of women in my family, including my two sisters died from breast cancer although they keep saying they don't think it is genetic. I would like to know if this has happened with the tamoxifen with anybody else.

[Doodles101160]

Hi, I don't know if you realise but Dermovate is a steroid cream which if used a lot or regularly causes skin atrophy on any part of the body! I used it years ago for excma (sorry about spelling) it should be used sparingly

[Steph10]

Blondie - haven't heard of Relactagel but will have a look into this, thanks x

[3network3]

I'm sorry Nina, I said I would let you know what my GP would say once I phoned her, well haven't phoned her yet. Can't bring myself to it as I think there is no solution anyway.

[blondie]

Hi
I have been taking topical oestrogen pessaries (Vagifem - a couple of times a week) for a good few of years now and that deals with the dryness and pain. I also had the discharge and the gynaecologist recommended Relactagel (several times a week) to maintain the ph balance and that eliminates the runny discharge. I have secondary spread BC but was assured that the topical nature of the oestrogen would not give my system any significant increase in oestrogen so I would be ok. It's a quality of life v risk equation and I have decided the risk is therefore negligible and gone for the quality of life thanks very much.
blondie

[Steph10]

Hi, my sore bits and horrible vaginal discharge started whilst on chemo and I put it down to that, but 2.5yrs later it still persists. I had a swab taken but no bugs found so I reckon it's the lack of oestrogen. Just started exemestane so I don't expect it to get any better. My oncologist did prescribe vagifem when I started tamoxifen as she stated that it's absolutely safe as a miniscule amount gets into the blood stream, but it didn't work. I'm not aware of any soreness until sex is attempted so I suppose that's slightly better than some of you ladies here. Out of desperation to have sex (to please poor hubby and to keep some normality to marriage - I'd be happyish to never do it again as have no libido whatsoever), I've resorted to purchasing some ky type gel that has benzocaine in it on line. Just stick some up using a syringe prior to the act, and Bob's your uncle! it numbs the vagina somewhat to enable you to put up with a brief sexual episode.
Far from ideal, but that's the bottom line I think.

[Guest user]

Please do - I had my smear a couple of weeks back and 4 speculums later... Not fun - dreading a recall for any reason!!

Nina

[3network3]

I'm with you Nina, dryness doesn't seem the problem but tightness! I went to my GP for a smear three weeks ago and told her about my my problem although having a very understanding husband, she said that the skin in the vagina shrinks and is not elastic anymore due to lack of oestrogen. She said she would find out if there is anything we can do about it (other than oestrogen cream) and she'll get back to me. Haven't heard from her yet, think she's forgotten me, have to phone her on monday and let you know.

3N3 xx

[Guest user]

Useful thread - thank you for sharing the information. So pleased to hear that some ladies have found solutions and my commiserations to those who haven't

My BCN suggested Sylk and gave me some free samples while I was having chemo. I continue to use this occasionally - available on prescription in UK (therefore free of charge). I don't think Yes is available on prescription (but I stand to be corrected).

[Guest user]

It's good to hear something works!! I must confess, I get so fed up I can't be bothered trying anymore, whjich isn't a good attitude I know but somehow when it's been so long since I had a love life you kind of get used to it. Can I ask - has it just helped the rawness or ha sit done anything for the atrophy - that's my main problem.

Nina