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[Kirsti]

Hi everyone
How are you all doing? How has your week been?
I've given up on the testosterone for the time being as my headache and sinus pain wouldn't shift. A day after I stopped it the pain went!
VA/IC is terrible this week I have been in a lot of pain and discomfort and an emotional mess on a few days. I am on holiday but think the pressure to have a good time, worrying about where toilets are and trying not to have a glass of wine along with being away with my partner and his 15 year old daughter have actually made things worse! I still can't get my head around how I can feel so awful and be in so much pain and discomfort 9 months after increasing vagifem, using coconut oil and being on systemic HRT too. I still don't know what to do 're the systemic, I took it down to 1.5 pumps but think that was worse. I stopped Utrogestan for a couple of nights as read that is a diuretic but not really sure if that helped, I definitely feel more emotional on Utrogestan though but it also calms my temper.
I have posted in the burning club on here so I'll let you know if I get any tips from there.
Sending hugs,  just felt the need to touch base xxx

[Lesred]

Hey Kirsti 

Great to hear from you, was just thinking of you. Not having a great time either, ovestin has caused everything to be inflamed and sore so once again I’ve stopped, hoping it would settle, it hasn’t! It’s been really uncomfortable, bladder is worse than ever, really bad after weeing for ages there’s pressure and discomfort and now my bum is feeling odd too. Feel like everything is too moist and it’s all burning, not happy bunny! Don’t know what to do and I’m off on hol on Tuesday and don’t want to be in a state for it  . Little bit freaked out as a little blood on tissue when went to loo as well, hope just a pile. Lovely this menopause lark, anxiety now threatening to go in to overdrive.

So sorry you struggling too! Not sure what the answer is? I also wonder if coming off systemic has made everything worse, I’m so confused like you! Gosh it’s so hard to work out but I feel I’ve lost the hormonal balance? Do you? And now I seem to have added another nightmare to my bag of worries 

Interesting about your sinus etc resolving after stopping the testosterone, at least that’s something of a relief.

I hope you find some relief for rest of hol you have my huge sympathy and big hugs back.

Take care
Les x

[Kirsti]

Hi Lesred
So sorry to hear you are having a difficult time too. I hope you manage ok on holiday.
I typed up an email to send to Dr Currie using the online service but it isn't available. I think my next step is to go back to my gp and ask to be referred to a menopause clinic if that's possible.
I just don't know if it's my VA or my IC that is causing all the discomfort. The worst part for me is constantly feeling I need a wee, the sensation hasn't gone away for 9 months. I can definitely feel the progesterone in my system though,  in a way it calms me down and helps me sleep, but also makes me feel sluggish, older, and very emotional. I just don't know what to do next. I feel like I want to come off the systemic as I don't feel myself, but am worried about my dry mouth and making the VA/IC worse. Such a shame about the testosterone, I might try again at a lower dose, just not sure which is why I feel I need some more specialised help. Maybe you should push for that too? How is your relationship with your gp? 're anxiety i use rescue remedy and essential oils to help, I take lavender oil tablets or you could try Kalms valerian (it is good but I can't use it as it causes dry mouth)  they may help you whilst on holiday. Sending hugs xxx

[Lesred]

Aww thanks for kind words and help, brilliant re essential oils and rescue remedy, I used to have that years ago in peri when I felt like this, but had forgotten. All night my stomach was in turmoil ( prob anxiety, ive been here before) and awful cramps, either I’ve got so anxious I’ve mucked up insides or I have a bug). I have an appt with gp this am ( a new one I haven’t seen) I think he might just check my nethers  would’ve preferred a female but hey it’s a face to face appt I’m not turning it down! I do like to blow things up out of all proportion so hopefully he’ll calm me down a bit, or make me worse ….

The wee thing is positively debilitating isn’t it? It sends one mad trying to work out what will help, I remember one Doc ( he was my own one who I generally trusted) told me to go away and try not to think about it? Oh yes cos that’s simple isn’t it, NOT! Although sometimes it did used to just fade for a while… weird. But listening to you and me I def think the hormones stuff it all up 

Thanks again and please let us know how DR Currie goes, well done for trying to get some sound advice, really hope it’s helpful, onwards and hopefully upwards.

Les x

[Kirsti]

Good luck at the doctors Lesred.
I hope you have a good outcome.
It is so hit and miss with the gp's isn't it.
Puts me off going but I will have to give it a go I think. Sometimes my gp is helpful, sometimes you just feel you are an inconvenience.
I would def try something alternative to help with your anxiety. I definitely think my anxiety makes things worse for me.
Keep us posted on how you get on.
Sending hugs xxx

[Lesred]

Hi Kirsti

Oh golly yes Anxiety is my big enemy 

Keeping it under control is very hard, I’ve tried cbt, anxiety tabs, yoga, meditation, running, acupuncture and some of those last ones help but it’s always there I think, much much worse in peri though.

So here’s a surprise the GP I saw was really lovely and v kind, he could see I’d got myself in a right old pickle and said straight away it’s not bowel cancer which I’d convinced myself of ( I think there’s a great thread on here on diagnosing ourselves) didn’t examine me which threw me a bit but was pretty convinced it was either a gastric bug or more likely hormonal, he said the ovestin had prob upset my balance, but wants a load of samples sent off today if poss to check but I don’t think I have anything left to give if you know what I mean   . Anyway 10/10 for reassurance but zero for actually treating anything, he thinks it’ll all settle on hol, I wish! My tummy is being a bloomin pain hope it does pass  then it’s back to the bladder ….

Ps read your other thread and you have been through a tough time losing your mum so sorry x x

It does seem like you’re right the anxiety def made it 1000 times worse as I do feel calmer again except for trying to sort these darn samples before 3.00pm  .

Take care

[Kirsti]

Hi Lesred

Yes anxiety is a nightmare, I've tried all of those too (except running  ), I walk a lot in nature and that does help. Acupuncture helped me a lot when I used to suffer very bad pmt.

I'm glad your gp was reassuring and at least he is getting some tests done, that is something. Hopefully your tummy will calm down it is probably the apprehension about going on holiday that is making things worse. I hope you can relax a bit while you are away.

Have you tried using coconut oil for the VA, if other moisturisers are irritating?
I buy coconut oil from the supermarket, melt it down, syringe it into pessary moulds and keep in the fridge until I need to use them. A right old palava I know!
I do have to wear sanitary towels when I insert them and have ruined a couple of pairs of trousers so it's not perfect unfortunately but doesn't irritate and burn like most  of the other moisturisers I have used do.

Yes been a difficult year, my mum passed away on 1st Jan, so it was a terribly sad start to the year. I think the emotional upset set of this whole VA/Bladder nightmare as it all started 5 days before she died! I am currently seeing a kinesiologist who is trying to help with the emotional side of things. I have had some acupuncture too and quite a bit of reiki.
But obviously something isn't working with the HRT and I hope I can get some improvement soon. It's exhausting 

Take care Lesred, hope you have a good holiday and I'm here if you need to vent.
Hugs xxx

[Lesred]

Kirsti

You are so lovely thank you for your message  . I’ve heard lots about coconut oil which I do have for cooking and baking, actually I could’ve done with that a few days ago but weirdly now my whole digestive system has gone to pot, I have the burning ribs sore back between shoulder blades slightly nauseous thing going on! I had all this about 6 yrs ago ( during peri) and I went on all sorts of meds, beta blockers, omeprazole anti nausea tabs not realising it was prob hormonal and anxiety, they then found H Pylori so treated that ( horrible) then endoscopy and nothing was found so I eventually concluded it was all anxiety from hormones out of kilter. Have been fine since until now, so either H Pylori is back ( bloomin hope not) or coming off HRT has upset my balance again.

Anyway I’m getting fed up, however bladder not so bad at mo. Brain is too busy to concentrate on that!

I’d love to know which hormone is causing what but there are such mixed thoughts on it all.

I can totally get how you have ended up in a pickle since your mum died, my mum died when I was in my early 40 ‘s and I think a great deal of my anxiety started shortly after that, it’s a big shock to the system but it does and will definitely improve slowly, you are def doing all you can to help yourself, I gradually started to chill out and it did very slowly calm down. I do wonder if constantly trying to fix things make it all worse 

No idea what to do about HRT at this point, let’s see how a relaxing week in Greece helps  and let’s see if September brings us both more of an even keel! Hope your holiday was at least relaxing …

Thank you so much again

Les x x

[Whatsupwiththis]

Hi Kirsti:  Have you googled vulvodynia?  I spent several months in agony and couldn't understand what the problem was.  I'm on Vagifem 5x a week and have been for several years.  I was still having issues particularly with sitting.  My GP tested and turned out it was provoked vulvodynia.  The vagifem has definitely helped but sitting is still uncomfortable.  Mine was caused by hypertonic pelvic floor.    You may want to have your GP do the touch test and see if that is part of the problem.  Good luck.  You'll get there eventually.

[Kirsti]

Hi Whatsupwiththis
Thank you for your reply.
I will look into that and speak to my GP.
I have noticed stress makes things worse, so maybe that is the problem, may be I'm really really tense.
Fingers crossed I'll get there it's been 9 months of hell.
Sorry to hear you had such a difficult time too.
K xxx

[Kirsti]

Hi Les
Poor you sounds like you had a terrible time before. I know I am worried about some sort of bacteria myself, I am taking probiotics to keep all ok. I'm taking a lot of supplements, costing me a small fortune.
I did laugh when you mentioned trying to fix things, that is my problem, I just need things to be fixed now, I have no patience  Which does make me wonder more and more if I am making everything so much worse by my constant worrying and obsession with fixing things.
I have had some days when I feel reasonable over the last few months but they have been few and far between.
I am off to see the kinesiologist next weekend who might be able to help again.

Yes it is a big adjustment getting used to losing our mum's isn't it. I still don't think I have processed it, I do sometimes wonder if all this is my body going into shock and not coping. My ex husband was diagnosed terminally ill a few years ago, when I received the news I came out in a rash that eventually spread over my whole body and lasted 4 months!
Crazy but I guess our bodies do strange things when we are so upset and stressed

Right well you take care and enjoy that holiday in Greece, enjoy the sun (we were in Wales so weather was mixed) and I hope you relax and feel much better soon.

Hugs xxx

[Wrensong]

Hi Kirsti & Lesred, just logged on after a couple of days without MM & so sorry to know you are both suffering so badly.  Enjoy Greece Lesred  , as best you can in the circs.  It's a beautiful country, with very hospitable people & fab food.  We've been to quite a few of the islands & parts of the mainland, over many wonderful visits.  Though not nearly enough!  Wales is beautiful too, Kirsti.  Lived there for three years.
  to you both.
Wx

[Lesred]

Aww thanks both

Yes absolutely agree re stress and the problem is when you get something physical it seems to last sooo long, I could cope if I thought well I know this goes in a few days or a week, but it just goes on and on. It’s often before a holiday, stress, even though I’m really looking forward to it, so bloomin annoying and as you said exhausting, it’s the turn of the bladder today, honestly I should laugh really, but I’m cross funny cos we went away a couple of times while I was on the patch and no problems.. hmmm!

Yes Wrensong we go to the same island every year and you’re right it’s beautiful and the people are great and Kirsty I lived in Wales for a few years too when I was little, very pretty with lovely beaches I remember, I think any change of scenery is a bonus! 



Thank you both again for being so supportive, hope kinesiologist goes well Kirsti and hope all well with you too Wrensong

Les x x

[Kirsti]

Hi Wrensong
Good to hear from you.
I hope you are ok?
I've actually had a better day today Hurrah. Still not right but better than the last couple of weeks. I've decided to try the testosterone again just once a week to start with and see if it makes any difference.

How funny both you and Lesred have lived in Wales. My partner wants to move there, but we will see. We were on the Llyn Peninsula this time. Going to the Brecon Beacons in Oct. Beautiful country.

Have a fab time in Greece Lesred and I hope you do relax and feel less anxious.

Hugs to you both xxx

[sorbet]

Hi all ,
Sorry to jump on your thread, I was reading with great interest as I’ve been going through the same symptoms off and on for a couple of years. Unfortunately it’s been continuous since I had Covid. Could be a coincidence.
It’s quite marvellous to have a couple of days without burning. I’m always panicking it’s a UTI , so seem to constantly be taking antibiotics. I take the Diflucan tablet in case it’s thrush . I was examined by GP who suggested Lichen Sclerosis as some labia minor and clitoris has shrunk too .
Like you I’m trying Vagifem, Yes , Coconut oil , antibiotics ( have had UTI’s since a forceps delivery ) . I don’t understand how or why one day YES doesn’t sting , then with another application it starts burning.
I’ve sent urine and vaginal swabs off to a private lab where bacteria has  been found despite all NHS tests coming back as normal. With anxiety I do panic after losing my grandma to a uti .
I’ve also read the oestrogen can cause the perfect environment for thrush. Candida was also picked up on the swabs , I didn’t have thrush symptoms such as discharge or itching.
You really don’t know where to start or what to do with these debilitating symptoms. I’ve recently lost my mum too which has been devastating to say the least.
I think I’ll try persevering the Vagifem but do worry about the utis and thrush. Also pretty sure I’ve got hypertonic pelvic floor which I read can cause burning.
Sending hugs to you all xx