Jane Lewis has written this article to share her experience and help to empower women and break this taboo. I am so grateful to her for allowing me to share this on my website.

Vaginal dryness / vaginal atrophy
Vaginal atrophy – it really is the very very last taboo of menopause. It is so hush hush that ladies are not even discussing it with their own partners / family / friends and even their GPs. So, I guess we really are not helping ourselves…

Perimenopause

Right, so let’s start at perimenopause, which for me was from about 46. Contrary to popular belief (amongst a lot of the medical professionals also) I was still having a regular cycle with no hot flushes. For me, both these seemed to get an answer of “well you can’t be in peri/menopause as you still have periods and no hot flushes” … which was definitely not the case for myself and many other ladies out there. We are not all text book cases, but are all individuals, which must be remembered by us ladies and the medical profession.
From the age of 35 our hormones start to fall at a dramatic rate as does oestrogen (which our urogenital area really needs). Perimenopause can for some last up to 12 years, all this time our bodies are on a roller coaster ride and the consequences of what can happen to the vaginal / bladder pelvic floor area is very much underestimated.

My experience
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So at age 46, sex started to get painful and I would be sore afterwards for a few days… I realised a couple of years prior to this that my normal sticky clear discharge had completely gone with no discharge at all. Then at 46 I had a very watery milk like discharge (which I now know is one of the many signs of vaginal atrophy) and had a look (need to look ladies) – I was shocked, everything looked so dry / red raw/ thinning skin on the point of splitting, my urethra was so sore, labia atrophying it was like tissue paper, pubic hairs sparse. My bladder was also rather troublesome. By this point I could not wear pants / trousers / no sex at all/ sitting down was barely possible, going for a wee required using water to wash afterwards from the soreness – I felt like I was basically sitting on a bonfire a lot of the time. I also had stabbing pains in my vagina and the clitoris area, basically the whole area made me go almost mad, anxious and depressed.

We do not need to suffer

Some ladies get all of the above, others get one or two of them… there is no need to put up and shut up like previous generations (I have deepest sympathy for those ladies). However, as we are now living up to 30 years post menopause if you ignore these symptoms you/we are going to suffer unnecessarily as vaginal atrophy can’t be cured, it can only be managed requiring continuous treatment for life. So this is not a stop/start scenario of treatment contrary to popular belief… perhaps another case of not knowing the real facts that surrounds this painful reality.
So that this phase in our lives we have gone from a lush green “English Country Garden” to the “Sahara desert” where the area now needs continuous hydration, otherwise it reverts to the Sahara dessert very quickly… similarly, do you stop watering your house plants?

Different treatments

I am now 50, and after 4 years of lots of trial and error I consider my vaginal atrophy managed, requiring rather a lot of time devoted to it… so what do I use / tried/ do now? I have tried almost every vaginal product available, all the local oestrogen creams / pessaries / ring / and systemic HRT. We have to be very careful with some of the products available as many of them have a high “osmosity” which puts our PH levels out of balance which can cause further problems and make the condition worse. Something like YES / sylk products are the best for us.
I am also using Oestrogel, which is the systemic oestrogen part of HRT, Utorgestan for the progesterone part (though considering having the Mirena coil fitted) plus the Estring (which is local oestrogen in the form of a silicone ring that sits high in the vagina for 90 days and releases a small amount of oestrogen continually). I also use Estriol cream on the vestibule area, and YES oil based to moisturise the area daily. So, as you can see I need everything for my urogenital atrophy, all these have helped.
Also, I have just completed my third “Mona Lisa Touch” treatment which so far seems to have made a positive difference. The skin looks amazingly healthy now and episiotomy scars that were almost splitting have bounced back. The treatment is all to do with promoting of collagen production. For ladies who have had breast cancer and may not be able to use oestrogen this is really worth investigating.

More education often needed

So, get yourselves educated and read the NICE guidelines. If necessary I am afraid you may have to go privately to sort this out, and get the care time you deserve. Menopause seems to have been forgotten in any medical teachings, unless a professional has a real interest in learning about it… After all, 52% of the population are going to go through the menopause, we have bought the next generation into the world and it’s now our time to look after ourselves.

HRT is not all bad!
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Don’t be scared of HRT; there is so much misinformation out there! The lack of hormones can and does for many have devastating consequences and this is no longer necessary. Also, the type of HRT I use is not exclusive to the rich and famous – it is all available on the NHS. Do not suffer in silence anymore. Educate yourselves and if necessary be prepared to educate your GP.
So as this a site for lichen sclerosus awareness, from reading my blog you can see how similar both conditions are, as is vulva cancer and other skin conditions too. So it’s very important to get the mirror out and become familiar. Do not self-treat initially.. always get medical advice first. As for me, I am in a lot better state than I was but every day is still a challenge.
Unfortunately vaginal atrophy cannot be cured, it can only be managed.

Life after diagnosis

My treatment took 16 months to complete, so 2 years after diagnosis I was coming to terms with the side affects that cancer has left me.

In July 2018, I got the news I was 1 year in remission but found it hard to celebrate, as your always waiting for it to come back.
Having Vulval surgery has left my Vulva numb, so no feeling left there anymore. I am lucky in the fact my tumour was in the perineum area so didn’t affect any other parts of my Vulva, but as I have Lichen Sclerosus I don’t know if I still have the itch so I need to be extra vigilant and having LS causes enough problem in itself.

The first lot of radiotherapy caused the menopause, so all sudden symptoms happened at once. I couldn’t sleep more than an hour before I woke up, waking up wet from the nights sweats, getting hot and having hot flushes that you can feel moving up your body, your heart racing fast, forgetting words or what you were going to do. These are just a small part of menopause! I started HRT which helped with the sleeping and night sweats.

I started irregular bleeding so ultrasound, more scans and a hysteroscopy to biopsy the uterus and a wait to see if I had womb cancer! Luckily they came back clear.
The radiotherapy also caused skin damage to my inner thighs which still hurts and the skin is damaged, sometimes it peels off and sitting on hard surfaces or for to long makes the pain worse.

The radiotherapy caused bowel problems which slowly got better but still aren’t right. The fatigue is still hard to deal with. Because the cancer had spread to my left lymph nodes I had to have surgery again 6 months after my Vulva surgery to remove the nodes, but I had many complications! I had surgery on my left groin 3 times and had radiotherapy again with an extra 8 boosted on my left groin, so I have been left with nerve damage and swelling which causes daily pain and problems. The second lot of radiotherapy caused me to get lymphedema in my left leg, pelvis and abdomen. This has caused my left leg to swell and causes pain daily aswell as discomfort especially as I have to wear compression tights everyday which causes other problems with my skin damage and nerve pain.

You have to put moisturiser on your legs twice a day, You can’t risk getting any cuts no matter how small incase you get cellulitis again. You can’t wear most of your shoes anymore or shorts because you have to wear tights. I could do a separate blog just on the lymphedema side affects as there's so many problems and changes to your life, daily routine and things you can’t do anymore!

All 3 side affects from cancer cause fatigue and brain fog so finding that hard on a daily bases, sometimes the brain fog is funny as asking your husband to move his sandwiches when you mean his glasses or playing give us a clue to communicate can get you down.
But I should feel lucky I’m alive as I don’t have cancer now!? Right? Wrong! It doesn’t feel like that, it’s not over, just because I look ok, I look well, it will never be over. Emotionally and mentally it will never be ok.

Radiation could cause cancer 15 years after treatment, I don’t know if any cancer cells were missed so only time will tell. I still have Lichen Sclerosus which caused my cancer. I could get Cancer somewhere else. All these play on your mind. You grieve for the life you had!

My new normal is still hard to except but I know I’m lucky as it could be worse and I’m still alive.
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But I’m tired of being tired.