Painful intercourse

[delly]

Hi again, ladies

I shall make a point of reading the GSM booklet. Despite currently being single, and without boobs (need to get back on that recon horse, girls!), I still remain hopeful, ref finding a suitable partner for a "Happily Ever After" ending!! 🤗

Don't know if any of you read The Mail, but here's a link to the article on HRT, by Mariella Frostrup, I mentioned. It's informative, educating, illuminating, BUT also VERY upsetting, in the degree that Menopause can and does affect certain women ☹️ Frankly, frightening, and "shocking"!!!

https://www.dailymail.co.uk/debate/article-10752561/The-shortage-menopause-drugs-isnt-niche-feminist...FROSTRUP.html

She also wrote an article in The Guardian about it:-

https://www.theguardian.com/commentisfree/2015/nov/13/hrt-nice-guidelines-shame-silence-menopause-ma...

Her fellow campaigner, Davina McCall, also wrote a number of articles in the "major" newspapers:-

https://www.newsgroove.co.uk/hrt-crisis-proves-womens-health-isnt-taken-seriously-and-is-a-life-and-...

Interestingly, 3 wks ago, I put myself on Extra Virgin Oil - Desert spoonful (or a "swig" of!!) 2 X daily, morn + eve, along with Manuka Honey, also 2 X daily. I'm an "alternative" gal, so read Omega oils are "helpful" for mental probs. This is along side daily St Johns Wort.

Havta say, I'm feeling a whole lot better, mentally. BUT... I've also noticed my natural "intimate" secretions have also come back to a degree too!!! Was NOT expecting such, so is an added extra bonus.  I'm putting it down to the Olive Oil. But hey, if nowt else, I'm hoping to have the gorgeous skin of an Italian or Spanish "Bella Senorita/Senora"!!! 😄 

Try it for a while. Has to be Extra Virgin, though!!! 🤣 Am interested to see if it has the same effects for anyone else. 🤗

Lots of love to you, girls.  From Bella-Della   xX❤️Xx      

[Ditte01]

Hi, yes i missed the bit about the app.  Anyways, it was a new doctor at the practice and he has promised to look into it for me. I was also the first BC patient he had met to date.  He did read the screen and when he pointed out the ‘highlights’ i countered,  ‘yes, the pill has such issues to.’  He took it well.

i have now downloaded the Balance-Menopause app and found the article so when i hear from the practice i will have it to hand, thanks for the tip off.

Yes there is a lot to be said for solidarity.  😘

[DidntCthatcoming]

Please arm yourself! Go on balance-menopause.com 
Click on Explore the Menopause library , scroll down below the search box to Subject box. In that list click on Genitourinary Syndrome of the Menopause ( GSM) 

You will see a box to click on for the booklet Position Statement for Management of GSM. Print this to take with you .   

Good luck , don’t take No for an answer. Remember the warning on the GPs screen will come uo saying there is a BrCa risk with this product. This is out of date and factually incorrect. It says this also on the booklet in the section at the top of Page 6 on prescribing info 

Best wishes. Love this sisterhood. Thinking of you x

[Ditte01]

Hi Becko & DidntCthatcoming

i want to thank you both from the bottom of my heart for writing about this issue.  I am not as bad as you Becko but your tips have been really helpful and i am off to see my GP tomorrow with your comment in hand to get the pessaries Didn’tCthatcoming.

I had HERS2 BC and getting over it all is hard enough but not to be able to connect with your life partner is a bit much.  This has all given me hope and a way through.

thanks for being there xxx

[delly]

Hi again lovely ladies

@Becko  - You gave me a chuckle back, thanks darlin', with your ref to "belly" it rhyming with Delly! I am sometimes affectionately called Delly-Belly. I have to make sure it isn't meant or spelt "Delhi"-Belly, as in the well known nasty stomach upset reference!🤣 so as not to offend me!! 😀

I have to say, girls, this is a really helpful, useful thread, information wise, to anyone else having Delly-cate intimate probs, UNfortunately I'm not experiencing such probs, with currently being on my onio 🤔). But, it's interesting to read and hear about though, from a fellow woman's point of view. 

I also keep reading about the current massive difficulties of women obtaining HRT. That it's at the point of being sold on the black market!! It helps that the likes of celebrities, such as Mariella Frostrup and Davina McCall are both ardently campaigning to have something done about this dirth of. Much of this was down to HRT having been strongly connected to BC or other female cancers, back in the 80's and pretty much being "withdrawn" fullstop. But more recently that has all been dispelled. Much the same as ANY thing Oestrogen, or Progesterone connected, as with both your references to Vagifem, @DidntCthatcoming and @SheilaJ.

Even Evening Primrose Oil was Poo-pood, because of it being a natural Phyto-oestrogen. Whereas, NOW it's thought that it could be "helpful", in that it binds onto to any "free" Oestrogen receptor sites on body cells, so preventing Oestrogen favouring Cancer cells binding to those sites instead!

Hope everyone is doing well, whether in "active" treatment, or not, and that you're all enjoying the same gorgeous Sunday weather we're having here in sunny Macclesfield, Cheshire - YIPPEE 😄 

Lots of love to you ALL, Delly-not-with-gyppy-Belly 🤣 xX❤️Xx

Lots of love 

[Becko]

Thanks for the info 🙂.  Will certainly have a chat with my GP about this! x

[Becko]

🤣Thanks Delly, you gave me a good belly laugh 🤗

[delly]

@Becko  - That's a BRILL post from you. Glad you've got your intimate areas better, and so are able to enjoy "sexually reconnecting" with your husband again. Great stuff!

Just for a chuckle, where you say "I still have to be "vigilant" regarding the barrier cream", my head changed it to "still have to be VAGINALANT" !!! 😀 😉

Lotsa love,  DellyWelly-DingBlumminDong I say! X❤️X

[LeeshaBee]

Thank you. I will look into this.

[SheilaJ]

I didn't have any problems at all getting Vagifem prescribed despite having read that it was contraindicated post surgery for BC.  The consultant just wrote to my GP, as obviously he knew it was fine - so try that if there's an issue.  Personally I found the Yes moisturisers and lubricants more helpful - but expensive, so worth getting on prescription if you can

Best of luck, it is such a difficult symptom to cope with

[LeeshaBee]

YES!!  Unbearable. Cannot have intercourse at all anymore. 

[DidntCthatcoming]

hello Becko, sorry to hear you are having a tough time. Don’t forget that topical Oestrogel pessaries (Vagifem) are safe even for hormone receptive BC patients. I’d recommend getting info on the ‘Balance App’

The data sheet the GP will have on their screen is out-of -date. There is in fact no risk if used as a topical pessary. This should be a massive help. Good luck. You may need to advocate strongly to get this.

Liz O’Riordan also has info for specific help on her Instagram page. 

[Becko]

I'm not sure whether this thread is still active but thought I'd share my experience and experimentations.  BC diagnosis at 45, bilateral mastectomy and reconstruction (DIEP). I was fine on Tamoxifen for about a year and then I started getting the discharge, the itch, the splitting of the skin around the labia and the very, VERY painful intercourse with vaginal splitting.  Also anal splitting when I went to the toilet.  I started by changing the brand of Tamoxifen ruling out that it could be a base ingredient I could be reacting too.  No difference.  What seems to have worked for me (as I've found that I'm almost back to normal for about 3 months now) was a combination of the following:

- Vitamin D supplements daily

- Drinking 2-3 litres of water a day

- Not wearing underwear when I could get away with it (ie: at home), and avoiding restrictive clothing if there was a chance I would get hot, so no 'active wear' leggings.  Instead I wear loose shorts if I'm exercising.  No stockings.

- Applying a barrier ointment to the labia, perineum and anus after every wee and poo (at first) and every shower.  I now only apply after a shower at night before bed.  My weapon of choice was Lucas Paw Paw ointment.

- And the final one was masturbation. At least every couple of days.  Not just clitoral, but using a smooth (nothing ribbed or textured), water lubricated vibrator vaginally.  This is something you may or may want to include your partner in or not, depends on your relationship.  I found sometimes I did, sometimes I didn't. 

When I did it gave my husband and I the intimate reconnection that we had been lacking but he also understands that sometimes, although it results in orgasms which are fun, I just want to get it done or he just may not be in the mood himself.  As a result of doing this we are now able to have intercourse without me suffering intense pain and splitting.  Maybe not quite as often as we did, but combined with mutual masturbation, oral etc, we're back in the game!! 🙂

Whether it's the intense blood flow to the area or forcing the muscles in my vagina to contract around the resistance of the vibrator because of orgasm, when I started doing this, the vaginal entrance splits I had been experiencing healed and stopped occurring.  My labia didn't split, and the itching subsided to almost nothing.  I still have to be vigilant regarding the barrier cream, what I wear, drinking water etc but only recently I had a bit of a cry because I was so relieved the feel marginally 'normal' again and to reconnect with my husband.  Be aware, this is not a quick fix.  I was doing this for about 2 months before I started to notice a difference.  So all up it's been 5 months since beginning this little regime.

So that's what has worked for me thus far.  I hope it can help someone else out there.  Bx

[SarahP1988]

Hi @LittleGorton 

I’ve been struggling with this problem since starting zoledex and letrozole in 2019. I can count on one hand the amount of times I’ve been intimate with my husband and I feel awful but it’s just so painful so we don’t even try any more! Also had 2 very painful smears recently. I’m doing the Moving Forward course this month so hoping that will give some tips x 

[Wendydee]

Yes. Completely given up now as it is so incredibly painful after a pretty active sex life previously. I am on arimidex which I believe is the main cause 

[DidntCthatcoming]

Hello LittleGorton,

sorry to hear you are having problems. Have a look on Menoupausedoctor.co.Uk

Look in the menu for Resources, then the Leaflet Menopause and Cancer. read on down, Page 9 is relevant  

You can safely use Oestrogen pessaries (Vagifem)  even if you have had hormone receptive BR Cancer. The oestrogen only acts locally. The leaflet which is inside the packaging is out of date and says not to be used for Br Ca patients but it is completely safe to use. But your GP may/will be reluctant to prescribe because warnings flash up on their screen for drugs. You may need to fight for this drug. Good luck  

Re lubricants the Brand ‘Yes’ is supposed to be brilliant stuff according to a Tamoxifen buddy. Their website is   YesYesYes.org     There are a couple of options.  All organic and non-irritant. 

if you are on Instagram, Helen Addis @thetittygritty  talks to Breast Surgeon and Cancer advocate Liz O’Riordan @oriordanliz They have recorded the most amazing Live chat ( Aug31 2020) about Sex, Libido and all things cancer related . Essential watch. She talks about many options to help us. Highly recommend.

I don’t have the dryness problems but need to wee often  it’s a real nuisance and I’m trying the pessaries to help with this. 

Hope this helps x 

[SheilaJ]

I ordered Yes vaginal moisturiser, which is beginning to help, though not quite there yet, and their lubricant.  It's nice stuff and I think you can get it on prescription  - it's actually referred to as a brand in one of the MacMillan leaflets so definitely NHS approved

https://www.yesyesyes.org/

My consultant has also said that a topical oestrogen cream that you apply directly to your quim will help, and has prescribed this too.  I will start as soon as the letter gets to the GP!

It is a very depressing and debilitating symptom that no-one talks about enough, so I feel less alone for hearing that others are experiencing it too.  Hope these suggestions help 🙂

[new path]

Hi Little Gorton, I thought it was just me....all the leaflets and conversations with GP and BCN talk about "dryness" and loss of elasticity.  There was little mention of atrophy. They mention "pain" and one guide I read tonight suggested a painkiller before sex, and lots of lube.  The suggestion that sex counselling will help feels almost ignoring the biological reason for this. 

So we have tried lube and I have been using hyalofemme and it feels like I am so raw and sex is incredibly painful, so painful that last time we tried we didn't try again for a month. I have continued with hyalofemme. 

I have a conversation with the menopause clinic next week.  It is the ongoing challenge of tamoxifen, constipation, painful and itchy labia and vagina...and the GP still won't prescribe the hyalofemme despite this being on my medication list.  I have worked so hard on recovery, returning to work, trying to keep my child on track with year 10, exercising most days, eating healthier...but everyday, I itch as if I have thrush and I keep being fobbed off. I asked about the low estrogen cream but so far that is ignored by the GP and the BCN at my check up and didn't respond to my question.

I wouldn't normally talk about this at all, but losing intimacy after a year of sleeping apart due to treatment...it is just heartbreaking. 

I really hope next week's appointment helps.  I am so tired of this discomfort.

[donkeywoman]

Hi, I must admit that I've not tried it yet. Have said to hubby that we need to think about it, but not quite yet! But I guess that we are put it into a rapid menopause so vaginal atrophy may be an issue? Lubrication not helping? I am kind of banking on KY jelly... But I also feel that I've read or heard somewhere that we can safely use the oestrogen pessaries - but they have to be prescribed. I feel quite lucky that I had a smear last year before all this started. I watched the Davina Macoll programme about the menopause on Ch4 last week, which talked a bit about sex. Have you spoken with a BCN? Or your GP? I'm definitely putting it off and have little desire, which is a shame as I could do with some fun...

Hope you get some more useful advice elsewhere @LittleGorton 

[LittleGorton]

• Does anyone experience incredibly painful intercourse (so doesn't have it)? I had the most horrendous smear test too. Its yet another thing which has caused me problems post BC. Thank you x