genitourinary syndrome? So uncomfortable

[sunshinespringtime]

Hi - I am hoping to get some advice as feeling quite low about this.

I am 43, periods still regular. There is a bit of a back story sorry.

In 2021 I woke one morning to a pinching feeling down below - not right inside but around the outside somewhere. It was hard to describe and locate. I was convinced my Copper IUD/Coil had moved. It hadn’t and I subsequently got it removed. I then started to experience an urge to pee more and a little pressure. It didn’t hurt to pee but I felt a bit of burning around my urethra and just down in that area generally. I also had little sensations around my urethra.

I got antibiotics from the pharmacy the following day. They started to help but didn’t take it away. By the third day on them I still felt rubbish and I had lower back pain. So I went to the GP - they checked my urine and said there were signs of infection and prescribed me 3 days of a different antibiotic (Macrobid?)

After the first dose I began to feel so much better - it was wonderful. I finished the course but felt that I was still a bit burny down below at times and still had little niggles around my kidney area.

I submitted three urine samples - one was sent to the lab. All came back clear yet I was still so uncomfortable so my GP agreed to trying a 10 day course of antibiotics treating the symptoms.

At times I ached all around the outside of my whole region down there. And also burning too. Urge to pee was more than usual but not horrendous and varied. At times my whole bottom area ached too - I wondered if that was from the way I was holding myself as I was so so tense, and it improved when I relaxed.

Fast forward a month or so and I then found a little cyst down near my vagina. It burst in the bath and my symptoms literally disappeared. I continued to use Canesten for a couple of on the advice of my GP who examined me and could see thrush. At the time I said to her that I sometimes felt my insides were coming out - she examined me for a prolapse and wasn’t concerned.

In 2022 I experienced similar - then a little cyst appeared, burst and again symptoms went away.

The odd wee niggle since then that hasn’t come to much.

Fast forward to now - it’s back with a vengeance. EVERYTHING I described above. One sided pinching, a slight urge to pee more (this isn’t consistent), aching, burning. I think it’s all outside. I tried a three day course of antibiotics for a UTI and it improved my symptoms but now they are back.

It is often ok when I waken but gets worse as the day progresses and I am more active.

It is really getting me down and making me so incredibly anxious.

I’ve seen a practice nurse who examined me internally and externally and said everything looks fine. She’s swabbed me and everything came back fine. Urine was fine too.

I sometimes feel it’s my vagina, sometimes vulva, sometimes clitoris, sometimes urethra. Sometimes feel like everything is falling out - same as 2021.

This is really getting me down. I am wondering if these are genitourinary symptoms associated with hormonal changes? It’s been 5 weeks and it’s awful. Got better during my period though was still a bit burny. Came back with a vengeance this week - is it a coincidence I was ovulating?

So many questions sorry!

Can you try another approach? Instead of asking them for an opinion, can you go back and say you've read about GUSM and you want to try vaginal estrogen?

It's very weak and no harm will come even if it's not the solution - but it may be.

You can buy the products over the counter although there is an 'over 50' criteria for them but I'm not sure how much this is queried in practise.

I'd be concerned about a nurse saying all looks fine because it usually takes an experienced gynaecologist to spot vaginal atrophy and she's not qualified.

The brands are Ovesse (cream in a pink tube) and Gina a tiny pessary used in the vagina.

If you draw a blank, you could consider paying to see a private GP for a consultation.

Thank you @JinglingSpringbells - yes I will do this.

I suffer from terrible anxiety about anything health related and I’m terrified it’s something sinister.

But I have no bleeding in between periods, no significant bloating, no sudden weight loss etc!

In my experience, it's very hard to find a GP who will recognise these symptoms in a woman, especially a younger one. I went to a specialist menopause service and was able to get vaginal estrogen, which makes the world of difference.

Yes it sounds likely. It’s an early perk symptom ofte but also often not recognised by GPs. You could see your GP as the poster above says and there’s a great FB group for women with VA/FSM. It’s also possible you have lichen sclerosus - local sexual health clinic is a good place to go to get checked for this. Good luck!

I saw my local sexual health clinic in 2021 when I first experienced these symptoms and they had no concerns when they examined me.

I had a smear test shortly after and all was ok.

My vaginal/vulval symptoms have improved in the last couple of days. I’ve bee. Using YES internal moisturiser every 2 days and the external version daily. I’m wondering if that’s helped.

I now just feel achy all over down there externally. Or at least I think it’s external. I feel I’ve been so so tense.

Will make a GP appointment and ask for a private referral maybe? We have private medical insurance - not sure it would include peri menopausal issues

You don't need a referral for 99% of private consultants now BUT you will to use private health insurance.

Private health insurance doesn't cover menopause as a regular 'condition' long term but you don't need to say it's peri-menopause - you don't know if it is.

All your GP needs to do is describe the symptoms so make a list of the main symptoms (and don't say it's peri meno.)

YES products are the ones suggested by gynaecologists but they are a sticking plaster not a treatment. They will give relief but don't reverse changes caused by loss of estrogen. They're best used alongside estrogen treatment.

Hi OP I've had very similar symptoms to you and there is never an infection. I have found oestrogen gel amazing and a supplement called bladapure and reducing caffeine intake very helpful. I didn't drink alcohol very often but have had to stop that altogether. My gynaecologist said that caffeine and alcohol irritate the bladder during peri and menopause.

Hello,

I'm sorry you're experiencing this, I know from personal experience how awful it is.

You're describing the symptoms of Vulvodynia https://www.nhs.uk/conditions/vulvodynia/.

It's (sadly) massively under researched and a really complicated problem. It has different causes in different women. It's not really a medical condition, more just a description of a common set of symptoms which women can have which have different medical causes. None of which are really understood.

Mine started in pregnancy, but there's a hormonal link for me (fluctuations), I'm now peri-menopausal so I've recently started HRT to try and stop the fluctuations.

It does also sound like you have pelvic floor tension. Especially the aching feeling. It can just be your body's reaction to pain is to tense your muscles. Holding them causes further pain and it's a cycle. Diaphragmatic breathing can really help.

A Women's Health specialist physiotherapist would be the most helpful person for both vulvodynia and pelvic floor tension, they know much more than GPs. I've been through Gynaecology and they basically just refer to women's health physios. A private physio will be much more accessible (it'll take you forever on the NHS, although I'd recommend asking your GP for a referral anyway).

The other thing Dr's suggest is amytriptyline. Vulvodynia is related to sensitivity of the nerves, amytriptyline is used to calm down your nervous system. It can be helpful to use in combination with WH physio. Amytriptyline didn't work for me, but physio did.

The one thing I would say is don't leave it. Pain lasting longer than 3 months becomes chronic pain, which is much harder to treat. Go see a specialist physio now, Google some stretches and diaphragmatic breathing, try and calm down the cycle in the meantime.

Again, sorry you're experiencing this. I completely understand how awful it is. Find a great women's health physio, they'll understand and be able to help.

Best of luck with everything, happy to chat if it's helpful

Just to add - you won't get private medical cover for menopause, but you will for vulvodynia to a Gynaecologist. I'd ask your GP for a referral for to gynae due to vulvodynia symptoms. Show her the NHS guidance.

Also - mine flares up during ovulation and around my period, the same as yours, it's fluctuations in hormones.

I don't have vaginal atrophy (checked by many gynaes), have tried vaginal estrogen and didn't help. Doesn't mean it wouldn't for you though.

Women's health physio is key though. It's the first thing a gynae will suggest.

Also, if you find a solution - please come back and share it ! There's no research into it, just best practice. GPs have no idea about vulvodynia. So sharing info between women is all we have really.

Thanks so much.

It’s so strange how it fluctuates.

Yesterday almost nothing at all and I went to bed last night feeling as close to normal as I have for weeks.

So much so that I felt able to be intimate with my DH. Today I feel the pinching again and I’m burning. It’s not as bad as it has been but I can feel myself all stiff - it’s like I can’t relax for fear of it returning.

Yes, it's one of the things which makes it so hard emotionally. We expect things to improve in a linear way.

For me, I think the pinching burning feeling is nerve pain, flared up by hormones or just my own nervous system.

The stiff aching is pelvic floor tension. You can reduce this with diaphragmatic breathing and specific stretches.

You feel better in the morning because your pelvic floor has been relaxed overnight. Tension increases as the day goes on.

@101trees do you feel it impacts your back, tummy and legs at all?

Sometimes I can feel like I have period cramp but it’s so slight I almost wonder if I’m imagining it. But it’s there at times.

Ive had pain in my thighs, mostly in one leg. Again not consistent and when I force myself to breathe and relax this can improve.

Same with my back - not always but sometimes.

I think it’s mainly around my vagina and vulva though, and pereneum too.

In fact sometimes it feels sciatic too.
But this isn’t how it started. It started with the burning and pinching.

Yes, I've had problems in my bum and legs. Not sciatica though, but it does make sense that your sciatic nerve would be irritated. It runs through your outer pelvic floor.

Burning pain is almost always nerve pain. Muscles respond to nerve pain by cramping up. The nerve which supplies your pelvic floor area is called the pudendal nerve. It supplies the whole vulval area.

You definitely need a referral to gynae. None of that is atrophy, it's not a menopause thing. Ask for a referral for vulvodynia. The wait lists for even private gynaes are massive.

But I really think a women's health physio could do a lot to help you. All this stuff about nerve pathways and muscle cramps is way they do best. They really can help. They help more than gynaes do, it's the practical stuff which will help you feel better now.

"The pain tends to move around in the pelvic area and can occur on one or both sides of the body. Sufferers describe the pain as burning, knife-like or aching, stabbing, pinching, twisting and even numbness" https://www.physio-pedia.com/Pudendal_Neuralgia

I’m so sorry to revisit this thread but I am miserable.

I saw a GP who examined me externally and prescribed oestrogen. Weirdly after I saw her I had a few days of very little symptoms and because I had a wedding to attend over a full weekend I didn’t start the cream. I honestly thought that week that it was clearing up itself, I was almost symptom free. Went to the wedding, two nights away and all was fine. I then got my period - so I’ve actually only been using the cream for 3 weeks - 2 weeks of daily use and then once so far this past week as I then got my period again.

Its weird. On the lead up to last two periods symptoms have improved then it’s come back with a vengeance.

Periods regular, no mid cycle bleeding - I’ve only had sex once during this time and it was fine - I’m too scared to have it so haven’t tested that out again.

I think it’s external but start to question myself.

The burning has improved since starting the cream. Unsure if related because symptoms so variable.

Sometimes burning, especially if I sit for a long time, sometimes/often pinching at one side, sometimes a proper all over ache. It definitely feels more one sided though and when I crouch my right bartholins gland is significantly more swollen gnat the other side. But when lying down it’s less noticeable.

Sometimes the burning goes right round to my bottom. Sometimes, my perineum.

Tonight I feel more of an urgency to pee…this feels so similar to 2021…I’m so anxious and tense it’s terrible. My anxiety has kept me up all night.I have had terrible health anxiety in the past and it’s really triggered it after years of doing so well.

I had a bath earlier and I think it’s made it worse. I was pressing on the gland and I feel it’s made my symptoms worse. The sensation is right up to my clitoris.

My anxiety makes me hyper sensitive to all symptoms. Three weeks ago I was convinced my stomach was sore but I don’t think it was. I think it was the way I was holding myself - because that’s not really been an issue. But I feel so tense.

Just to add I read the info on Pudenal neuralgia @101trees and I literally tick all of the boxes.

I’ve also realised when it all started. I had been a bit constipated due to slimming world (I also experience this when I stick to it!) and had some all bran which caused me to run to the loo….immediately after this I started experiencing the symptoms. It wasnt diarrhoea as such but urgency due to eating too much bran!

Hello again

Sorry to hear you're still suffering.

I'm not sure this is going to be a very consoling thing to hear, but vulvodynia (or pudendal neuralgia, similar things really) are complicated long term issues which are hard to resolve and need multiple approaches to address them.

I'd still absolutely recommend a women's health physio above all else. It's a holistic approach and they know what they're doing better than your GP.

If you wanted to ask your GP for something, the standard approach is to first try amytriptyline or noritriptyline. They calm down the sensitivity of your nervous system. However, I tried this for a long time and found it awful. The side effects were horrible and it causes slowing of GI motility- ie constipation. Given you've said there's a link to this already, I'd give them a miss. I felt better after stopping it.

It is pretty common to have a cyclical element. It's actually why I started HRT, if you're OK on it though, the combined pill will stop your periods and this might help. Mine flares at ovulation and during my period, so there's obviously a link to hormone fluctuations for me. I have found HRT has helped, but not as much as womens health physio. Between the two I've pretty much eliminated it, but it did take 2 years of physio and hospital appointments.

Local topical estrogen actually made it worse for me, my hospital consultant said that can happen sometimes.

Your anxiety is likely to be linked, loosely, people with an anxious disposition are more likely to have vulvodynia.

I completely understand why you feel so down about making progress and then having it come back, the non linear improvement is what i found hardest. But once I'd figured out it would flare and return to normal I started to improve because I wasn't so anxious about it.

For me 'getting better' looked like increasing periods of having no pain, there were flares, but they got less and less until now I hardly have them. There wasn't one solution or the one thing which fixed it though. It needs a holistic approach- which is where women's health physio comes in. I'd start there.

Feel free to chat more x

Don't let the flare up get you down. Just keep living your life and wait it out. It got better once so it will again.

Keep a diary and look for a pattern, but don't obsess over trying to figure it out. It's not a medical condition and you won't be able to fix it by working out what caused it, it'll just make you more anxious about it which will make it worse.

Did you get that gynae referral?

No referral - was prescribed oestrogen cream at my GP appointment. This was maybe 4 weeks ago now though I’ve not completed 4 genuine weeks of the cream due to

1. having a wedding to go to and being worried the cream made it worse - so waited a week to start (during which time my symptoms were AMAZING)
2. my period

At the appointment 4 weeks ago my GP said she felt the pinching was nerve pain. But we didn’t explore this further. I will do this today.

Im so anxious about all of this that im not sleeping. I experienced a night sweat a few nights ago and it made my head go to scary cancers.

My periods are still regular (25-30 days really), no bleeding in between etc

Im on some Facebook groups where women experience so much discomfort and pain - I don’t think younger women realise, or men. Its awful.

It might be better to ditch the Facebook groups if you have anxiety about it. The anxiety really is part of the problem. You won't fix it by overthinking (belive me, I've tried).

It's the exact opposite which helps- you have to find a way to relax. I've been told that countless times over the last 2 years and I wanted to punch everyone who said it and suggested I try bloody mindfulness and yoga.

Sadly though, they are correct. It's just that relaxing looks different for different people. For me it looks like a bootcamp class. Yoga was awful for me, made me fixate on the problem. What you find relaxing is what will help you.

It's not all of the problem, anxiety doesn't cause nerve pain, and the pinching feeling almost certainly is nerve pain. But there are some things you have control over and some you don't. You don't really have control over the nerve pain, but you do have control over your pelvic floor muscles and you can stop tensing them (which causes pain) if you learn to relax them. This is why a pelvic floor physio can help. It's a combination of muscle and nerve pain you have, a cycle which you need to break. It's hypersensitivity of your nervous system. You need to calm it down.

You could try amytriptyline, but it's an intermittent issue, so staggering around in a bit of a stupor with constipation all the time might not make you feel better overall than sometimes having varying levels of pain.

The trouble is, vulvodynia does not have a medical solution. It has a holistic solution, which is why a pelvic floor physio can help. You can self refer for NHS physio in most places, this includes women's health specialists. They'll honestly know way more about it than your GP.

I wish GPs had a magic bullet, but they don't. Beyond prescribing amytriptyline or estrogen cream, there isn't much they can do to help.

Sorry, that sounds like a massive downer, but the positive side is that there are things in your control which can help.

Have a look up of 'pelvic floor tension', 'hypertonic pelvic floor' or 'pelvic floor downtraining'. But really it's a womens health physio you need- they'll be an expert in the issues you are experiencing and your symptoms. And they're much more accessible than gynaecologists, who just refer to them anyway. I've seen tons of gynaecologists, they all refer straight to physios. www.royalberkshire.nhs.uk/media/yemfgc2z/physio-relaxing-your-pelvic-floor-muscles.pdf

The first time I saw a women's health physio, I left and cried my eyes out. I was just so relieved that someone understood, could give it a name and tell me what was causing my pain.

It's such an isolating problem to have and its terrifying when you realise you can be in that much pain without a GP or a specialist being able to explain it or help. It takes over your mind and your life in trying to work out how to fix it. But that's all part of what is causing the pain.

Go see a women's health physio, I promise they will understand and help you. They can't fix everything, but they will be able to explain it to you much better than I can and stop you feeling so anxious about it.

I have been where you are and I'm not there anymore. It won't last forever, it will get better.

Hello @sunshinespringtime - I wonder whether it would be worth considering if you have an infection called aerobic vaginitis?

My story is here just in case it helps. Xxx

www.mumsnet.com/talk/womens_health/5190130-beating-a-chronic-uti-success-stories?reply=145077027

Thank you.

I saw a pelvic floor physio on Friday. She gave me a thorough exam and I also had acupuncture.

She confirmed I have tight muscles, worse at one side. Some weakness at the back causing a small bulge at times when I need to poo or have just poo’d.

However, she believes I am carrying trauma / tension and that it’s in my pelvic area. She recommended CBT as well as doing the pelvic exercises and pelvic relaxation.

Weirdly, on Friday night and Saturday morning I had no symptoms. Saturday I was so anxious and just waiting for them to return - and they did! Burning / pinching back again.

Why would this be?

I’ve seen my GP this week twice because of how anxious this is making me and I have started anti anxiety meds again for my health anxiety.

I’ve got this - mine has started recently and I have a bladder prolapse and uterine prolapse. I have days where I can’t function. I’d be asking for a referral.

I think it's probably the anxiety that's making it return.

Pelvic floor tension is really linked with anxiety because you hold your muscles more tightly when you feel tense, tensing your muscles makes them hurt. Like clamping your jaw shut when you are angry or scared makes your jaw hurt. It's the same thing.

My pelvic floor tension was caused by a 2nd degree tear I had after my daughter was born. It hurt, so I tensed my muscles, which is your body's reaction to try and protect yourself from pain.

But the tear healed and the pain remained. It was me tensing my muscles which was causing the pain, not the tear.

You're tense, expecting the pain to come back - so it does. Pain is a complex neurological issue, your body remembers previous pain pathways and overreacts to small perceived threats. Instead of thinking, ouch that's a bit sore and then moving on with your day, you think- oh my god, it's starting again, its not gone, there's something really wrong, I need to find out what it is and fix it. You give it loads of attention in your brain and it feeds the whole thing.

Your nervous system is a whole system, nerves send messages up your spinal column to be processed by your brain and the system decides how much significance to give this perceived injury. Your brain is on high alert, it perceives it to be a huge injury and threat, so it tells you it really really hurts because that's it's way of getting your attention.

I think the anti anxiety meds are a good idea. Sounds a bit like you're continuously on high alert. What helped me was recognising that yes it hurts now, but that's a temporary flare up, and the less space I give it in my head, the quicker it will go away. Eventually it occurred less and less and at a lower and lower intensity.

On a practical note - the happy baby is a really great stretch for pelvic floor tension, just spending some time focusing on deep breathing in that stretch and relaxing the muscles will help in a flare up. Sometimes it helps to tense them as much as possible (just for a second), then focus on really letting them go as much as possible, like they're melting. Try it with your bicep or something easy to identify first. But then when you are done, move on with your day, put it out of your head. Be busy.

The pain has gone away before, it will go away again, this is just temporary. x