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[Wrensong]

Oh Kirsti, so sorry you are still in so much discomfort.  Could the burning be down to thrush?  Oestrogen replacement can sometimes make us prone to it.  As we age it doesn't always present with the characteristic cottage cheese type discharge & intense itching.  The discharge can be thinner & the itching much less noticeable.  I've been caught out that way a couple of times postmenopause so that I let it go on for some time before getting tested & that then showing positive, somewhat to my surprise.  The burning pain from IC can be overwhelming & make it difficult to be sure there isn't something else also going on down there. So I feel for you.

What I was wondering is what systemic HRT do you guys use?

Evorel patches & Testogel.
Wx

[CLKD]

Remind me why you were changed from 'vagifem' if it was working?  Costs at the surgery?  Have U thought to try it again - sorry I'm weary today and can't trawl back.

The vagina cleanses itself so what ever you are putting up there, maybe halve or use alternate nights?  Trial and Error can be so tiring 

[Kirsti]

Hi Wrensong, thanks for your reply.
I am really down about it all today. I don't have any symptoms of thrush, I have been having instillations via a catheter for IC and have been warned they can cause a urine infection. I bought some test strips and it was showing leukocytes so maybe there is a bit of infection. To be honest I was given some antibiotics from the doctor in January when this all kicked in really badly, even though I tested negative for a urine infection then so I have started to take them just in case! I don't know but having the instillations seems to be making everything worse . Have you had the instillations?
I do have some thrush treatment in the cupboard as I had some small flare ups last year after taking lots of antibiotics for a dry socket (after tooth removal).
I've got some more test strips on the way.
7 months of constant pain is really getting to me now
I would come off the systemic hrt to see if that helps but I'm worried.about my dry mouth, so that is why I am planning on trying the testosterone as you suggested, but have been wondering if I should try a different estrogen. I was on evorel conti before but didn't feel any better and I had a lot of water retention so came off that.  Had a breather my mouth problem started so that is when I went on the Oestrogel and Utrogestan. Thanks for your support. I just hope this nightmare ends one day! Xxx

[Kirsti]

Hi CKLD
Thanks for responding.
I was just given vagirux instead of vagifem in December. I thought it was a good idea less plastic waste. Then early Jan my VA symptoms came back, so that has made me wonder if the Vagirux wasn't working as well. In Feb I was told to use Vagifem or Vagirux every day by a gynaecologist. I have been trying both Vagifem and Vagirux over the last 6 months, I felt that things were a bit worse when I used Vagirux, I've even dropped a tablet of each in water to see how they dissolve. They do dissolve differently the Vagifem is a lot cleaner. The ingredients seem to be the same but I wonder if one of the fillers in Vagirux has a higher percentage and that is causing the prob.
Anyway at the moment I don't know if it's that,  the Oestrogel, the IC or an infection  I am wondering if it's worth asking for the estring! And yes the doctors are prescribing Vagirux due to cost as far as I am aware. Xxx

[Lesred]

Hi Kirsti

I’m new here, lurking for a while, and I know I should probably introduce myself properly but your post has really struck a chord with me. I’m post menopausal ( last period feb 21) age 55 and I have been struggling with bladder issues since I was 34, never sure if IC, irritable bladder, the pill, or an actual infection. It’s been in background and forefront for years getting much worse in my 40 ‘s surprise surprise! Had various tests, scans you name it until a specialist suggested it was VA a couple of years ago and gave me Ovestin which made it more irritated so I gave up probably too soon and then had an amazing year of no problems at all! Then it all kicked off again in December 22 was given AB’s on dip test but when lab checked no infection as usual! Finally saw lovely female gp who checked and said VA and gave me vagirux , it made it feel sooo much worse I lasted 11 days but was so uncomfortable I gave up, again! Rubbish I know!

Anyway then spoke to diff female GP who gave me Everol conti patches to try to help my va, took me another month to build up courage to put them on! Everything was great in bladder area etc until 4 weeks ago and the va and discomfort got gradually worse and worse, had urine checked, no infection, of course! Couldn’t get hrt review for two more weeks so I ripped off my patch in desperation on Tuesday morning and within 2 days my bladder has completely eased…..

Soo what is going on with all of us? I don’t understand, what hormone is the issue do you think? I would love some ideas that can make sense of all this for all our sakes including mine and Kirsti’s.

All of you great ladies are very knowledgeable and I would love to hear what you think and Kirsti I know it doesn’t massively help but sometimes stepping back and seeing where your body is at can really help, however when you are desperate ( and I get desperate!) you will try anything to sort it but it’s sooo confusing!

So sorry for such a long post!!

[CLKD]

Low oestrogen levels Lesred.   

As oestrogen naturally drops the body may become dry: inside and out; deep in the ears, skin, nostrils, vagina, vulva, anus ..... so appropriate VA treatment is essential for most sufferers.

Ask for 'ovestin' - delivered by applicator which can be washed, initially every night for 2-3 weeks.  When I get the need2P I swallow two Nurofen 3 times a day to ease symptoms. 

[Wrensong]

Hi Kirsti, I'm not surprised it's making you feel low.  It's a horrible situation to have been in for so long. 

I've not had the instillations for IC, but it has twice been suggested.  I am still trying to control it with diet.  Yes, unfortunately catheterisation carries the risk of infection.  I'm told we can have raised leukocytes as a marker of inflammation without infection, but reading up on that it seems to be a can of worms, with some clinicians treating as if infection were present & some preferring not to.  I expect you're well aware of all that anyway.

Can you take painkillers for some respite for the pain?  What has the hospital said about the risk of infection from the IC treatment?  Do they not test you for it given you're in so much discomfort?
Wx

[Kirsti]

Hi Lesred and welcome to the forum 

Your situation sounds a lot like mine. I am concerned that the systemic hrt is a problem for me but at the same time I think I need it. Last year I suffered terribly with dry mouth and depression. The systemic hrt along with Amitryptiline has helped that but I still get some bad days,  however the VA and IC have gone through the roof and it is pretty unbearable most days. I had a lot of time off work earlier this year due to it all and to top it off my mum had passed away too, so my mental state wasn't good. I am managing to work again now and do other stuff too but am in constant pain and discomfort. I've tried acupuncture, reiki and am now having kinesiology.  I do all the things the gynaecologist and urologist told me to do but nothing is working.
My next step is to try testosterone and see if that helps, I'm just waiting for the results of a blood test.
I'm open to all ideas and find this forum very helpful and a comfort, everyone is so kind and helpful. I hope we will both find the answer to our problems soon. Sending hugs xxx

[Kirsti]

Hi Wrensong

Yes I did think the leukocytes would possibly be due to inflammation.
The hospital don't test me they just do the treatment. They ask if I think I have an infection but as I say to them how would I know, I'm in so much discomfort anyway.
It's a tricky one.

I do take ibuprofen and anti histamine sometimes but they don't really do much. Yoga, walking and gardening help as they seem to take my mind off it a bit.
I'm trying all the supplements I can, latest one is slippery elm as I read that can help to make you moist! I have been taking sea buckthorn for about a year now aswell, trying collagen and hyaluronic acid too! Costing me an arm and a leg!
Let's hope for a turn in fortune soon hey.
I hope you are managing ok on the IC diet, I do my best but again even when really strict don't notice any difference unfortunately. Xxx

[Lesred]

Thanks Kirsti

It often helps just knowing you not alone sometimes, and I agree I’ve tried all sorts of diets and avoiding foods that might cause issue but never makes any difference and I often find it calms down when I have no idea why and rears it’s head for no reason at all but I do believe hormones play their part

Which leads me to to you CLKD, thank you for kind response but it’s just weird that stopping the systemic hrt has calmed it down I’m just finding it all a bit weird now, oh well as we all know menopause is not straight forward!

Hope you feel better soon Kirsti as from my own experience I know how horribly miserable it is. Take care and big hugs back

[Wrensong]

Kirsti, sorry if I've missed this but have you tried D Mannose for the bladder?

Are you on Amitriptyline now?  Just that it can cause dryness of mucous membranes & urinary retention.


Hi Lesred,  & sorry to know you are another sufferer.  You have come to the right place though & it's good to have you on board.
Wx

[CLKD]

Kirsti - mayB you are taking too many preparations ..... how will you know what might be working?

[Kirsti]

Hi Lesred

Yes it is a comfort to speak to other women who are going through it all I agree.

I find it interesting that you have no symptoms now you have come off the systemic HRT,  I do keep thinking that I might just have to do that and see how it goes. I'm just worried about my anxiety and dry mouth if I do. Maybe I could try wild yam instead!

I hope things improve for you too, there is the estring I have been reading about that might be better for you than vagifem. I am wondering about that too as there will be less fillers. Xxx

[Kirsti]

Hi Wrensong

I haven't tried D mannose yet, one of the few things I haven't tried, I will look into it.

I'm still on Amitryptiline, it was given to me for nerve pain for IC, I do know that it is very drying so probably do need to look at that. Very tempted to come off the systemic HRT for a few days to see what happens. I think that could be the problem unfortunately 

CKLD I know what you mean I'm probably throwing too much at it. Just don't know what to take out really, maybe all of it gradually and see if I need to add anything back in 

Xxx

[Wrensong]

The D Mannose might be worth a try, though unfortunately it is quite expensive.  Recommended for IC by my very good gynae.  Just be aware that if you have hay fever/tree pollen allergy, some formulations are derived from birch.

You'll know that there's some thought that IC could be autoimmune in nature as they've found associations with some autoimmune conditions inc Sjogren's & Hashimoto's.  There's also a suggestion that oestrogen's immune boosting capability might make it aggravating to certain autoimmune conditions, Lupus & Sjogren's spring to mind.  So if IC does turn out to have an autoimmune aetiology, I'm sorry to say I think it is just possible your intuition about your systemic oestrogen could be right.  Testosterone is said to be involved in regulating that effect, so I think the balance between the two hormones could be key for some of us.  I should add that my gynae is very knowledgeable about both menopause & IC and has recommended that I stay on both systemic & vaginal HRT for menopause symptoms inc GSM.

Please let us know how you get on Kirsti 
Wx