Menopause Matters Forum
Menopause Discussion => Postmenopause => Topic started by: Kirsti on July 24, 2023, 01:08:17 PM
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Hi
Haven't been on for a while as I had been coping a bit better with my VA and possible IC. However things have got significantly worse. I was experiencing more pain and discomfort than I had been then I got Covid 19 and now I am in agony. I am using Vagifem daily and have been since January this year, taking supplements, using coconut oil every day up there along with Yes Ob, I am also on estrogel and Utrogestan, I've started to use ovestin aswell and I have never been in so much pain and discomfort in my life. I just don't understand why nothing is working, anyone have any ideas. Has anyone tried the estring for estrogen as I wonder if the fillers in vagifem are a problem for me now? Any help or advice would be much appreciated. Thanks Kirsti
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You could try dropping the coconut oil, I don't think it is pH matched to the vagina, and maybe, as it's an oil, is interfering with the absorption of the Vagifem.
JP x
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Hi Joaniepat
Thank you, maybe I am over doing it. I'm just at my wits end and don't understand why it isn't getting any better after 7 months. I'm concerned that Covid has had am impact too. I also suffer from dry mouth and my eyes are now getting very dry too 😓
Kirsti x
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The body may become dry as oestrogen levels drop off.
Go back to basics with the vaginal treatment: 1 Vagifem now and another this evening. Again tomorrow then back to every night. Also take pain relief: when I get the need2P symptoms I swallow 2 Nurofen 3 times a day to ease the nip as the urine flow stops.
Gently apply the 'ovestin' around the outer labia every night and in the day if it feels dry. Drop the other products or you won't know what is working/not.
What type of underwear and if you use pads, stop as these can have a drying effect. Go without knickers ;-).
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Hi Kirsti
I also suffer from dry mouth and my eyes are now getting very dry too
Two thoughts - have you been tested for Sjogren's if your dryness is systemic? Also, there is some thought in the medical literature that in some women systemic dryness at menopause can be related to androgen deficiency, (especially in women without ovaries). You don't mention Testosterone as part of your HRT so I wonder whether you might want to consider asking for this to be prescribed. I find it helpful for dry mouth, eyes & GU tract etc & indeed it is sometimes mentioned as helpful for GSM. It's usually only prescribed for low libido/sexual dysfunction though, so you might have to bear that in mind if you want to ask for some on trial.
Wx
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Thanks CLKD, yes that is probably worth a try, you are right I really don't know what is and isn't helping anymore.
I will try just using vagifem and ovestin to see if that helps. I'm wearing cotton underwear but have been wearing a pad because of all the oil I'm putting up there! Thanks for your advice, I will feedback :-)
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Thanks Wrensong, I have had a blood test to check for any auto immune deficiency and it came back negative. However my GP surgery is so awful at the moment that I just don't trust them at all, I have taken out private health so I may ask for an appointment with them to ask for another test as I do have all the symptoms of Sjorgens. I haven't been offered testosterone so maybe I should look into that. So is it the testosterone that you think helps with your mouth etc as opposed to the estrogen? I went on systemic hrt to help with the dry mouth and it has improved it slightly but I do still suffer. Then my VA just went into overdrive :-(
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Kirsti, the relationship between androgens, oestrogen & systemic dryness seems to be complicated & from everything I've read the bottom line seems to be, as so often with women's health issues, that more research is needed. There are some interesting articles suggesting that androgens are important for the health of mucous membranes & glands involved in lubrication, as well as muscle function in the pelvic floor & of course sexual function, but it seems to be the balance between oestrogen & androgens that may be the key to optimal function of the regulatory systems involved. To complicate matters further, there's some evidence that genetics also determine how individuals respond to oestrogen & androgens in this respect. It's pretty mind boggling but interesting if you are scientifically minded.
I've had a quick trawl through several bookmarked articles this afternoon but they are lengthy & complicated & I don't have time today to read them in full to refresh my memory, in order to say anything with much certainty or copy out relevant sections, but there are some links below you may like to look at at some point that may help you decide whether testosterone may be an avenue worth pursuing.
Yes, the most obvious improvement in my systemic dryness from supplementing with testosterone post-oophorectomy has been in the mouth. The dryness (all over) got markedly worse after losing ovaries, a major source of T production & I asked for a trial of T partly because Ophthalmology were getting more concerned about the worsening dry eye syndrome which was a worry, as well as being very uncomfortable & I suspected the reduction in androgens was responsible. I remembered years before BSO on first starting HRT with Evorel Conti containing the androgenic progestogen Norethisterone, that within days I'd noticed a marked increase in production of saliva. At that age I hadn't even realised my mouth was especially dry & was very surprised at this unexpected effect of HRT. When I went back on HRT a year after BSO it wasn't an androgenic regimen & my dryness didn't improve as much as I'd hoped so that's when I asked to start T & it has definitely made a positive difference. No guarantees, but it just might be the missing ingredient for you.
If you've had a full autoimmune screen that's good. Mine was also negative, yet the Sjogren's specialist Rheumatologist I saw still strongly suspected I had Sjogren's & wanted to do the gold standard diagnostic salivary gland biopsy because bloods aren't always reliable for Sjogren's. So if you are concerned this might be the cause of your dryness I think, as you say, it would be wise to get specialist opinion.
Anyway, here are some links & sorry I haven't had time today to pull out some meat for you & that some will seem similar, but if you like detail it might repay reading them closely if/when you have time.
https://www.sciencedirect.com/science/article/abs/pii/S2050052120300330
https://www.sciencedirect.com/science/article/pii/S2050052118300465
https://www.reviewofophthalmology.com/article/hormones-in-dry-eye-a-delicate-balance
https://www.healio.com/news/ophthalmology/20120331/gender-and-androgen-imbalances-are-keys-to-dry-eye
https://onlinelibrary.wiley.com/doi/full/10.1111/cxo.12147
https://www.latimes.com/archives/la-xpm-1999-may-31-he-42741-story.html
Please PM me if you want more detail of my history.
Wx
P.S. forgot to say have you looked into Intrarosa/Prasterone (vaginal DHEA) for the VA? Probably a couple of years since I read up on it so I'm not up to date with any new developments, but if I remember rightly the thing that put me off was mention of a possible link to abnormal cervical smears. Don't quote me on that though, as my memory is not that reliable ::) so it'd be worth looking into for yourself.
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Crumbs, head all over the place today! I also meant to say I agree with the other ladies on giving the non prescription products a rest & second what Joaniepat says (who is very knowledgeable on VVA/GSM amongst other things) about the effect of oil based vaginal products possibly making matters worse via a barrier effect preventing absorption of Vagifem. I use Vagifem & the weaker Estriol cream (0.01%) on the vulva & find Yes OB & VM both irritant, but I do use Yes WB & like Sylk best of all.
I also have IC.
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Hi Wrensong
Thank you so so much for all your advice. I am sending a virtual hug x
I will have a look at the links you sent this evening. It does sound very complicated but interesting.
To start with i will lay off the oil as suggested and stick with the vagifem and ibuprofen to see how I go. I do think the oils irritate me, I have very sensitive skin so am assuming I am extra sensitive there too. I have been making pessaries from coconut oil but maybe it is a bit too much!
The testosterone does interest me so I will look into that a bit more.
Sounds like you have been through rough times, I'm sorry to hear that. So kind of you to take the time to give advice. I will let you know how I get on. Xxx
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It's a pleasure Kirsti & only what we're all here for. I find it all fascinating & have felt compelled to learn as much as I can as what happens to women at this stage of life & beyond seems woefully under-researched. The fact that we all have different experiences & there's quite a lot of us here :) means there's a good chance something someone knows will be useful to someone else!
I think you're wise to simplify what you're using for now & with any luck that alone might be all you need. I hope you manage to make progress whatever steps you take & would love to hear that you do. Hug back to you :hug:
Wx
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Hi Kirsti sorry to hear you are in so much pain. I found too little or too much vagifem, estrodot or prometrium would cause a lot of pain so finally found a balance right for my body (way too much pain without them but a lot of pain if the levels were off for me). Took a long time to find a dosage that seems to work for me most of the time. Vagifem, estrodot and prometrium combination worked to a point for pain but still felt like I was walking around with a bladder infection. Gyno recommended testosterone for sexual drive (haha sex right but there is no sex with the pain anyway so thought why not) and found 1/2 dose of recommended Testosterone creme Androfeme helped with the last remaining bladder/vaginal pain (no idea why and my doctors said no idea but as soon as I come off it the last major pain returns ..whatever works I feel) Also found some bladder/lower back/anal pain was due to really overtight pelvic floor muscles (they just keep tightening up way too much and never releasing maybe due surgeries/pain anyway I found working on relaxing those each days works and using a pelvic wand helps like any tight muscles. Also use a foam roller etc for my other muscles since I turned 40 so I guess pelvic floor muscles are just more muscles that can also cause a bit of pain. Good luck with everything and hope you find a solution soon XX
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Thanks Wrensong, I will keep you updated. I agree the best help I have found has been on this forum, as you say we are all so different so it is a case of finding what works for each of us. I feel much better in myself today after your support and the other people that have responded so thanks again :) Kirsti xxx
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Hi JenJab
Thank you for responding. That info is really helpful, I do wonder every now and then if there is too much vagifem and it is irritating, I have left it a couple of times and felt a little better so maybe I do just need to find my level.
I am very interested in trying testosterone as I think it may help, I am going to look into this and report back.
Thanks very much for all your help.
Kirsti xxx
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Hi
Little update, still no comfort I'm afraid so not there yet. However I have done a blood test to check my testosterone levels so am waiting for the results of that, if low hopefully I can order some online and try that.
I know I need to call my doctor for an appointment but can't quite bring myself to try and wraggle with the receptionists for an appointment at the mo! I need to go and collect a prescription next week so might try then though!
What I was wondering is what systemic HRT do you guys use? I am on Oestrogel and I am not convinced that this isn't part of my problem, I have come across some reviews that say they have experienced vaginal burning whilst using this, I can't quite get it out of my head and am wondering if I should maybe try Sandrena gel instead. I can't seem to find many reviews that talk about the burning related to oestrogel but this did all start 1 month after I strarted taking it. The problem is that was the same time I moved from Vagifem to Vagirux so it is really hard to tell. I am currently buying Vagifem privately as they had been working fine for 3 years!
I have used some ovestin on outer areas and that seemed to make matters worse, so I am currently just sticking to the coconut oil.
I did forget to mention that I have been diagnosed with IC/Painful Bladder Syndrome as well and am currently having Instillations for these, I have had 3 treatments so far, no benefits so far, if anything more discomfort. Anyone have any experience of these?
Anyway, got that all off my chest and out there :) Hopefully the testosterone blood test results will come through soon.
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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
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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 :-\
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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
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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
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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!!
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Low oestrogen levels Lesred. :welcomemm:
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.
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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
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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
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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
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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
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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, :welcomemm: & sorry to know you are another sufferer. You have come to the right place though & it's good to have you on board.
Wx
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Kirsti - mayB you are taking too many preparations ..... how will you know what might be working?
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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
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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
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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 :hug:
Wx
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Thank you for kind welcome Wrensong :)
That is very interesting re oestrogen as I also found my hay fever symptoms went through the roof this spring summer, I assumed it was a particularly bad year for pollen although I did wonder if it was worse since using the patch! I think you’re right about the balance having to be just right which can be tough to achieve. I also considered D Mannose but perhaps it wouldn’t help!
I have a phone appt with gp on Thursday to review so it’ll be interesting to see what she says, if anything!
Kirsti please keep in touch as to how you get on going forward as I feel we have similar problem, I’m still ok bladder wise this morning, gosh I hope it lasts!! X x
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Lesred, not all D Mannose is birch derived, but the one I bought unfortunately is. Many of us have found our hay fever goes stratospheric during menopause. Mine was very problematic during peri, the worst of my life in fact, especially evenings & overnight, also my worst time for other meno symptoms exacerbating insomnia. But postmeno, thankfully, the hay fever's calmed a lot.
Please let us know how you get on with the GP.
Wx
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Hi Wrensong
I will look into D-Mannose, I occasionally get hayfever but it isn't a particular problem luckily.
That is very interesting about the auto-immune link with estrogen, I have come across this when doing some research which is why I am concerned about the Oestrogel I am on. I have also found some reviews on other forums where it is suggested that HRT can exacerbate IC. I have looked at the side effects for all the body identical hrt, they either have vague side effects of the vagina, or weight gain/water retention. I was on Evoril Conti previously and went up two dress sizes in water retention within 4 months, so I feel like I over react to the systemic HRT unfortunately.
Today my boobs and down below have been extremely tingly and feel sore, no burning as such but I have very bad urinary urgency :(
It will be disapointing if I can't stay on the HRT as it has helped a lot with anxiety and a little with my dry mouth, however brain fog is still terrible.
As of today my plan is to start to reduce oestrogel pumps from 2 to 1 1/2 in prep for possibly coming off it to see how things go.
I am hoping to get the testosterone though so will try that with the Oestrogel first before finally calling it a day for now.
I can always try again if I need to. If not then I will just have to try supplements etc to help. Hopefully the Vagifem/Vagirux will be ok as I will need to stay on that.
I have heard that coconut mouth pulling can help with dry mouth so I may need to give that a go, what with the pessaries the other end, feel like I need to be dumped into a vat of coconut oil ;D ;)
I will keep you updated with how I get on.
Lesred, yes I will definitely feed back on how things go as it is very helpful to get as much info on this forum as poss. It does sound like we have a similar problem so I will keep you posted.
Good luck with your docs appointment, let us know how you get on.
Thanks both, Hugs xxx
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It could well have been the Norethisterone in Evorel Conti that didn't suit you Kirsti. Lots of women have unwelcome side effects on that.
Do try testosterone if you can as this may make quite a difference to how you feel on HRT. It would be a great shame, as you say, if you find you need to stop HRT altogether as oestrogen's beneficial effects are so wide ranging & testosterone too is involved in way more than just the sexual aspects it's most often prescribed for.
The burning & frequency of a persistent IC flare are currently problematic for me too, so I know just how you feel.
Be kind to yourself & rest as much as you can.
Wx
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Hi Wrensong
Yes I think it was the norethisterone, i didn't feel any benefits at all on conti. I think I'm good with Utrogestan though.
Sorry to hear you have an IC flare up, I hope it improves soon.
After a good night's sleep my symptoms seem calmer today, so fingers crossed for a better day.
I will update again soon.
Xxx
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Well my temporary hiatus didn’t last, sadly it’s as bad as ever today (5 days off the patches) not sure what to do really! Stick patch back on ( not that keen as it was starting to fail on a number of counts) try vagirux again and hope it helps this time and I can keep it going or wait to speak to GP!
Rrr it drives me mad all this, and menopausal indecision on top of it :-\
Sorry to hear you struggling too Wrensong, it’s such pain ( literally!)
Hope you continue to see light at end of tunnel Kirsti
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Hi Lesred, have you been on these patches long enough to want to try another HRT product? I think you said it's Evorel Conti? It may be that you are not getting very good absorption from it, so not enough systemic oestrogen to help bolster the effects of the vaginal HRT. Bloods (eventually) showed I was getting poor absorption from EC, which explained why I never had adequate symptom control from that product. Also the Norethisterone in EC really doesn't agree with some women. I can't remember whether I found Norethisterone diuretic (I took it in tablet form at one stage too) but progesterone (as opposed to the synthetic variants like N) is known to be, so if frequency is one of your bladder symptoms it seems possible N might have made that worse for you. I can check my records to see whether I made a note of that if it might help.
Wx
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Oh Wrensong I did wonder that, I’ve been on Everol conti since end of Feb 23 and started to hit problems at end of June? I do think possibly a change in HRT may be the answer and I also thought I read Norethisterone can have a diuretic effect but I may have imagined that. Yes I would definitely be willing to try another HRT so hopefully the GP may be of the same mind.
Thank you again for all your help, it’s keeping me positive :)
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Lesred, I couldn't remember whether I found N as diuretic as Utrogestan, so quickly googled for confirmation before that last post to you, but didn't find what I was looking for. Progestogens as a class do have a marked diuretic effect on me & seem to irritate the bladder (Utrogestan used vaginally was terrible for that), so it seems likely N was no different. So yes, well worth trying an alternative I'd say. The trial & error of HRT can be tiresome but it can pay dividends when we find a fit that we are better with than without, so don't lose hope yet.
Wx
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Thanks for that Wrensong I do wonder if the va treatment counteracts some of that issue with progesterone.
So do you not use Utrogestan either? I do seem to have a rather sensitive bladder! So I just wonder if there is an answer, but as you say it’s a bit trial and error isn’t it?
X x
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Like yours Lesred, my cystitis goes back decades, preceding menopause by a long way. My HRT history has been complicated (many changes), partly by the need to find a tolerable progestogen, so a lack of stability in dose & type has probably not been ideal for stabilising the IC. I was also recently without any vaginal HRT for some weeks & had a bad, persistent UTI during that time & that combination seems to be making it difficult for the GU tract to recover.
No, I don't use Utrogestan - I've had hysterectomy, so thankfully no longer need any form of progesterone.
Wx
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Aah I see but you have had a very similar nightmare to me. It must help not to have to worry about Utrogestan but equally this bladder nightmare never quite sorts itself completely.
However all our experiences shared together can only help us all cope and remain optimistic and I am very grateful for all of the info that’s gathered.
Thank you all for your help and experiences, I will let you know how I get on x x
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Hi Lesred
Sorry to hear that your symptoms have flared up again, so frustrating and upsetting.
I don't know if this info helps but I didn't do well on Conti either, although my bladder was ok and the VA, I felt no benefits at all from it after 4 months and went up 2 dress sizes with water retention. I have a history of eating disorders so I really struggled mentally with this. I stopped it Cold Turkey which I think may have been a mistake as 4 months later I started to get dry mouth.
I never had a problem with vagifem though, I have been on it since July 2019 and everything was fine until May 2022, I started to get some little flare ups but they would only last a few days. In hindsight I think I needed to increase my vagifem then, but didn't do so until I was told to by a gynaecologist in Feb this year.
So something happened with my hormones last May, I'm guessing a further drop in estrogen. I 're started hrt again in December 2022 and am on Oestrogel and Utrogestan. Then at the end of December my problems started again and by February I was climbing the walls.
So what is it? The Oestrogel, the Utrogestan, the Vagifem or none of these the only way I will find out is by trial and error unfortunately. For some reason I had a really good day yesterday, but I woke up during the night in a lot of pain so today isn't looking so good.
However the testosterone is on its way.
I am a bit confused as my level is 0.9 within a 0 - 1.8 range but they are sending me some anyway. So I will try it and report back. I've reduced my Oestrogel pump to 1 1/2 and my Amitryptiline from 2 to 1 1/2 too just in case I need to come off. I'll do it gradually this time as recommended.
I hope you get some joy soon, I would say you need the Vagifem or a cream or the estring it is probably finding out which works best for you.
Good luck and keep us posted xxx
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Yes, good luck Lesred & do let us know how things go for you.
Kirsti, fingers crossed that the changes you are making will help you feel a lot better. Good that you are able to try T as well.
Wx
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Hello lovely ladies
I thought I’d update you on my doctors phone appt this am and check in as to how you all getting on?
If I’d replied earlier it would’ve been to bang on about how awful my bladder has been until yesterday when it randomly decided to be nice to me, goodness knows why?!
Anyway …
The GP was very nice ( I always feel I don’t get all my worries across though ::) ) and she has suggested I give systemic HRT a break for 3 months to see how I get on. I think I said the conti patch was starting to play up, and when I looked back at my diary I realised it hadn’t been quite the plain sailing I thought ( CLKD, your diary advice was v helpful!) I also have noticed my allergies are a bit better and I have a lot more energy throughout the day, it may be early days to assume it was all the HRT causing these symptoms though. Re the VA she has suggested I try ovestin again as she thinks it is less harsh on its fillers than vagirux, I blooming hope she’s right and I have more success this time round.
I hope you are getting on well Kirsti? And Wrensong? You too! Thanks again for all support and advice, very gratefully received.
Ps not sure how I feel about giving up on HRT but I guess I can always change my mind can’t I?
Lesred x x
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Do U sound listened to? Give the 'ovestin' a chance, if the skin is thin and dry there may be a slight sting initially - some find that inserting part way for a few nights helps.
Let us know how you get on?
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Aww thanks CLKD will do, I’m hoping my problem first time round with the specialist was I didn’t really understand VA and thought that can’t be my problem surely, oh so naive!
Listened to… hmmm, with one ear perhaps ;)
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Hello Lesred, good to have your update, thank you.
I do hope you'll feel better for Ovestin & yes, you can always go back on systemic HRT if you feel you need to. Please do let us know how you are if you have time.
Thank you for asking, but not sure quite what's going on with me, though that's nothing new ;D I am working on it though ;)
Wx
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Hey Wrensong
Thank you so much for responding, I’m still building up the nerve to try the ovestin, but I’m getting close as bladder after a five day rest is niggling again, I think I have trouble believing anything will help and terrified to make it feel worse. Feeling strange now without the conti patch, I sort of liked knowing I was getting some hormones back in my body, even though sometimes they make some things a little worse! I always have to work myself up to starting any form of treatment ::) also my jaw clenching and sinus issues are worse than ever, I do get fed up with the constant onslaught of silly niggly things.
I know what you mean about not being sure what your body is doing, I feel like that a lot!! It does feel like you’re damned if you do and you’re damned if you don’t during menopause.
Will let you know when I’m finally up and running, really hope all okay with you too :) take care
Lesred x x
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Lesred, only natural you're afraid of making things worse. With a continually sore GU tract it can be hard to focus on anything else & it's stressful having to make decisions about treatment in those circs. Although I just reread this entire thread I can't remember ::) (sorry) whether you tried the Ovestin while also on Evorel Conti, but if so it's possible as I think we said before that it was the Norethisterone in EC making your bladder worse, so that Ovestin on its own might have a much better outcome for you. And better still, if that soothes the GU tract over time that might give you confidence to try a different systemic regimen for other symptoms if you felt comforted in the knowledge you were replacing some of your own lost hormones with HRT. It certainly can take some trial & error to get sorted & unfortunately I don't think many of us feel hunky dory on our very first regimen.
Not surprised the jaw clenching is worse (is it nocturnal?) as the HRT dilemma is a stressful situation for you. I have longstanding bruxism & for years in peri & beyond wore mouthguards overnight.
Anyway, just thinking out loud, please don't feel obliged to answer questions. Whatever you do though, please cut yourself some slack; this can be such a difficult time of life & we are all doing our very best with woefully incomplete science to guide us & the complexities of individual biochemistry :o.
Wx
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Hi Lesred
I am glad your Doctors appointment went well.
I totally understand how you feel about trying different treatments, I worry constantly that trying something else will make things worse and if I come of the systemic HRT completely will that be worse. It is all trial and error and does take time as Wrensong said.
Not to mention our own fluctuations going on in the background. I definitely think that hormone peaks and troughs are my problem, even with my IC, food doesn't seem to make a lot of difference to me it feels like my hormones and stress that cause the problems.
You have to get used to listening to your body and using your own intuition which is quite hard at first.
As Wrensong said you can go back on the HRT if you feel you need to, for some women it seems to be better without HRT so worth a try.
I do actually think my VA is under control currently with the Vagifem, I am still using it every day, just having a day off every now and then to stop too much build up. My bladder is still much the same but last week I did have a few good days. I have had my fourth Bladder Instillation and go for the fifth tomorrow, so fingers crossed that might be helping. Also my testosterone has been delivered and I started that yesterday so fingers crossed for that too, as since I reduced my Oestrogel by 1/2 a pump my dry mouth has been a bit worse. Hopefully the Testogel will help. I will report back again soon.
Wrensong, I hope things improve for you too soon.
It really is a roller coaster ride isn't it.
I'm off on holiday next week too so fingers crossed that will help calm things down a bit :)
Hugs to all xxx
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Hi Kirsti
I do actually think my VA is under control currently with the Vagifem
that's so good to hear :) Good luck with the testosterone, I hope you find it helps. I'd err on the low side with application initially if your own T was mid-range as I think you said. Are they going to retest for you after you've been on it a while? Must be a relief to be nearly finished with the infusions. Have a great holiday & do let us know how you are some time.
Wx
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Hi Wrensong
Yes I will need to do another blood test for the testosterone after 6 weeks.
Thanks for the tip to err on the lower side of application. Quite tricky to work out how to get the correct measurements from the sachets but I will try and make them last a little longer than suggested then.
3 more instillations to go, so fingers crossed they help too.
I hope you are coping ok at the moment and yes I will keep you updated again :)
xxx
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Hi Kirsti, yes if Testogel it is difficult to judge the amount :-\. A sachet actually lasts me way longer than 10 applications, but I'm v sparing with it as my oestrogen was low for some time & I'm currently only applying T alternate days. Waiting to retest.
Oh 3 more instillations to go :( Sorry, I had misinterpreted your last post to mean 5th was the last.
All the best with it.
Wx
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Hi Wrensong, I have made a note to try and make the sachets last 12 - 14 days instead of 8, as I have no idea what my Oestrogen levels are! I will see how it goes.
Yes one more instillation in 2 weeks time, then 2 more at monthly intervals. So far not much success though to be honest :(.
I guess it was worth a try, it might still work!
Take care xxx
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Oh gosh Kirsti why is it such an uphill struggle all this :-\
I finally decided to stop being a wimp and started Ovestin last night, all was fine and felt comfortable until today when my bladder which has been behaving reasonably well has got irritated again and I’ve been to loo far too frequently today and am now aware of it, don’t know whether to persevere or give up again ( so fed up, don’t want to give up) is it likely to be just early niggles do you think?
Sorry I’m hijacking your thread and that is not my intention as yours and Wrensong’s experiences are really helpful.
I really hope you get some relief soon, and that the testogel helps?! And the instillations :o
Lesred x x
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Lesred, only natural you're afraid of making things worse. With a continually sore GU tract it can be hard to focus on anything else & it's stressful having to make decisions about treatment in those circs. Although I just reread this entire thread I can't remember ::) (sorry) whether you tried the Ovestin while also on Evorel Conti, but if so it's possible as I think we said before that it was the Norethisterone in EC making your bladder worse, so that Ovestin on its own might have a much better outcome for you. And better still, if that soothes the GU tract over time that might give you confidence to try a different systemic regimen for other symptoms if you felt comforted in the knowledge you were replacing some of your own lost hormones with HRT. It certainly can take some trial & error to get sorted & unfortunately I don't think many of us feel hunky dory on our very first regimen.
Not surprised the jaw clenching is worse (is it nocturnal?) as the HRT dilemma is a stressful situation for you. I have longstanding bruxism & for years in peri & beyond wore mouthguards overnight.
Anyway, just thinking out loud, please don't feel obliged to answer questions. Whatever you do though, please cut yourself some slack; this can be such a difficult time of life & we are all doing our very best with woefully incomplete science to guide us & the complexities of individual biochemistry :o.
Wx
Sorry Wrensong meant to confirm I tried Ovestin in Sept 21 after various tests and seeing a specialist, cant really remember why I stopped, and yes my clenching is nocturnal, also tried a mouth guard from dentist, but didn’t help at all, I agree I think I’m tense and slightly stressed! Loved your message re cutting myself some slack, I need to do that a lot more! X x
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Kirsti, you can always increase to the recommended T dosage when you are ready if you feel you need more. Please don't expect it to cause any probs - I was simply explaining why I'm currently on less than recommended & mindful that when tested, your level without supplementing was mid-range-ish. I'm also a small woman (young teen size) & tend to need lower doses of some meds, possibly for that reason. Some women find T slow to exert its effects, a few months, so you may also need to bear that in mind. I actually notice an increase in saliva a few hours after each application & that started quite quickly for me. But, I have no ovaries so can't seem to produce much T for myself.
If you have 3 more instillations to go, I imagine there's every chance you could still benefit from it cumulatively. Everything crossed for you anyway.
Wx
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Lesred, well done on starting the Ovestin. Very early days & I'm sorry you are less comfy today. Hopefully a blip.
Yes, I managed to damage quite a few mouthguards clenching on them in my sleep (both hard & soft types) & my dentist then said for some people they make matters worse :( When you start to feel some benefit from the Ovestin hopefully your stress levels will decrease. Rooting for you.
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:) Thanks Wrensong x
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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
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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
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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
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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 :o 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
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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
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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
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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
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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 8) 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
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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.
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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
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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
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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 8), 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.
:hug: to you both.
Wx
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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
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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
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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
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As well as all this the GP said I had an open sore on my bum ! She put me in the urgent 2 week check category. I thought I can’t take much more, anyway after all the anxiety, it was a pile .
Life really is a rollercoaster.
I can’t bear to think of my poor mum going through all this, she had weekly UTI’s which was probably VA .
xx
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Wales doesn't currently have a particularly good health system particularly with HRT ;). However. It's a great country!
Sorbet - start your own thread as there's a lot there to comment on.
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Thank you for replying CLKD , I would have checked the burning club and increased the Vagifem as you’ve so rightly advised me many times.
I’ll start a new thread in the morning, I fell asleep watching tv . I’m not in Wales although I wouldn’t mind , I thought their health services were better than here . I think it’s the fact they found bacteria in the private tests that’s thrown me . 😊 x
Anyway night night and once again thank you.
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Hi Sorbet
Sorry to hear you are having such a horrible time too. I hope you can soon get your UTI problems under control.
I hope increasing the Vagifem helps you too.
For some reason everything I do isn't helping so that is why I want a 2nd opinion, I may have to look into a private consultation with a menopause specialist as the NHS waiting is horrendous, over a month just to see a female doctor, there is only one at my surgery and all the doctors are leaving! I'm fed up with having to keep putting my hand in my pocket for all this too, we should have better treatment on the NHS, something we all have to keep petitioning and fighting for I guess!
Anyway i dream of feeling some sort of improvement by Christmas, I can only hope.
I have had Covid a couple of times and I seem to have more symptoms because of it. I had it in July and now seem to get dry eyes!
Latest thing on top of everything else is that my breasts are sorer than ever and I am getting nausea every morning. It's never ending😓
So sorry to hear about your mum too. It is heartbreaking isn't it. My mum was in a nursing home for 3 years in bed with a catheter, it must have been so awful and uncomfortable for her which is extremely upsetting.
Sending you hugs, good luck with your thread and I hope you find some good advice and feel much better soon. Hugs xxx
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Hello Kirsti , so sorry you lost your Mum . My mum was bedridden too , they didn’t repair her broken hip because of the pandemic, shipped her off to a nursing home during the lockdown . It was heartbreaking, she went from being fitter than me to being bedridden with a catheter. It was a downwards slope after that.
I can’t get this sorted, there can be a couple of days of respite then it’s back again , with a vengeance . It’s just going around in circles. I booked an appointment at the Newson clinic but cancelled, I decided I’ll see the dermatologist to check if it’s lichen sclerosis first .
You really don’t know what to do for the best .
I throw everything at it , Vagifem, antibiotics, Diflucan, Coconut oil , Emuaid.
The coconut oil is the most soothing. I’ve put Emuaid on and Topida , sometimes I’ve had to jump in the shower and wash it off quickly if it stings too much . I have wondered about prolapses too Kirsty . I had the same burning several years ago when I had an overnight catheter after my gallbladder was removed.
I’ve definitely got a small bladder prolapse, I’ve wondered if doing more walking aggravates it , also the coughing from covid.
My GP is most unhelpful, I want to sort this because it is debilitating and affects your quality of life , but wish there was a magic solution.
We need the oestrogen that’s for sure. Sending you hugs , I would book a private appointment , there are a few menopause specialists now . I look forward to reading you’re feeling more like yourself again. xxx
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Hi girls
Well I’m back from Greece! And it’s been quite a rollercoaster, hi Sorbet :) and obvs Kirsti ;)! So sorry to hear you’re both stuck in the hormonal nightmare, as am I! I stopped using ovestin as my lady bits just got more and more uncomfortable and what is interesting Sorbet I also started to have a sore bum which I got in a state over even though I’ve had a naughty pile since my first pregnancy which flares up. Results from FIT test came back while on hol and the receptionist rang to say it was positive :-\ well I had a melt down, it was Fri afternoon so I sent message to doc who v kindly rang to reassure that he wasn’t at all worried, in meantime my digestive system, bowels you name it went into overdrive, now back I’ve had to repeat test and now waiting,… but tummy isn’t right and bladder while not bad lurks in background. I genuinely believe coming off systemic hrt has thrown my body a bit but how long it’ll take to settle, who knows? And I still don’t know what to do about VA but all these awful digestive symptoms I got in peri are back, but they passed! I hope they do this time too.
Yes vm has helped a lot with discomfort, handnt tried before and I’m a fan, haven’t tried coconut oil yet, but now I’m concentrating on the other end at mo the rest settles down! Are we all going mad what tricks is our body playing on us? Is it all stress? You guys have had a great deal of that to deal with you poor things, and I’m generally quite stressy ( never used to be ::) )
Anyway wanted to send hugs and sympathy and just to say my own knickers are in a right old knot …. X
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Sorry: what's FIT?
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Hi CLKD
It’s the poo test the NHS screening do x
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Hi Lesred ,
Thank you for replying, I’m sorry you are still experiencing this horrendous condition.
My digestive system has been awful, I always have an awful upset stomach with anxiety.
For the past year it’s been relentless constipation, always needing laxatives, which then cause diarrhoea .
If I don’t get emptied it aggravates the burning and restricts urine flow. Diarrhoea seems to cause piles to worsen.
I didn’t know I’d got them internally too, until I saw the colo rectal surgeon who checked with his proctoscope .
I’m absolutely certain they’ve picked up a trace of blood from the pile .
They may suggest a colonoscopy or sigmoidoscopy or be satisfied it’s piles .
I’m using germoloids suppositories and a natural external cream called Hemosan , plus wiping with pure wet wipes and patting rather than rubbing. I’ve found witch hazel good for this with a cotton wool pad.
Anusol thins the skin so decided against that.
I know for certain this whole menopause affects our emotions as well as causing these awful bodily changes.
I’d do some mindfulness and meditation to help with the worry , but know all will be well.
I’m going to keep trying the Vagifem and load up with it . I read too we should be moisturising down there twice a day , same as we would our faces .
Let us know how you are .
I feel stronger and comforted knowing others understand.
Sending you big hugs xx
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Sorbet
Thank you so much for your reassuring response it’s helped massively :) I have bought anusol as helped in past but as Dr hasn’t said to use I’m holding off, it does ring a bell about thinning skin, so I’ll try the germoloid and hemosan instead once Dr has results.
Interesting re moisturising, it makes sense and does make things a lot more comfortable!
Thank you again you’ve been really helpful!!
Will keep you posted and take care
Les x x
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Hi Sorbet
So sorry to hear what your mum went through as well. Very similar to what happened to my mum, she was in a care home (Alzheimers) and fell broke her femur, had a partial hip replacement, then ended up bed bound with a catheter and being fed pureed food. This happened Feb 2020, then Covid hit and as I'm sure you well know we had the nightmare care home visiting scenario for the next 18 months . All very upsetting and stressful and just so awful. I really feel for you having a similar situation. So sad.
Anyway just wanted to say i am thinking of you and know how hard it is. Sending hugs xxx
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Hi Lesred
Oh no so sorry to hear you have been through all that. What a nightmare.
Take care of yourself and I hope things settle for you soon.
Yes meditation is good to try for relaxation. Do you use You Tube?
I have play lists on there for meditation, sound healing, yoga and Qi Gong which I find really helpful. I go to a weekly yoga class and have just started going to a qi gong class too. It all helps to take my mind off the pain as much as possible for a while. These are all really good for anxiety and using essential oils really help too. Hope you find something to help you and your anxiety soon. Kirsti xxx
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Sending hugs Les , i understand how stressful it all is.
I know the GP’s prescribe Anusol , I wasn’t happy using the steroid on already thin skin .
I hope you’re feeling less anxious. It’s a no win when the anxiety goes hand in hand with menopause too . We’re living in a state of almost constant high alert .
Do let us know how you are . xx
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Hi Kirsti
I’m so sorry about your Mum, bless her, it’s incredibly painful, it is so sad our precious Mum’s had to go through that awfulness. .
Part of me feels this dreadful stress and sadness contributes to this horrendous burning . I miss her so very badly.
There isn’t any rhyme or reason why it flares up and becomes debilitating . Why can we have a brilliant day without burning when the following day it’s back again.
Thank you for your kindness.
Thinking of you all xxx
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Sending hugs Les , i understand how stressful it all is.
I know the GP’s prescribe Anusol , I wasn’t happy using the steroid on already thin skin .
I hope you’re feeling less anxious. It’s a no win when the anxiety goes hand in hand with menopause too . We’re living in a state of almost constant high alert .
Do let us know how you are . xx
Hello Sorbet
Thanks for message, yes I think my body is in v high alert!, sent email to check on test result on Fri as had heard nothing since a week last Thursday when put sample in ( so really assumed they’d say all was fine) but to be told no results back yet! I was a bit fed up as I wanted to put that to rest as my anxiety symptoms are awful, my tummy, heartburn etc are really causing discomfort ( had this years ago but not since). I’m really trying to tell myself it’s anxiety not anything scary but with results not back it’s difficult!
Sorbet you are so right about living in a constant state of high alert! That describes it perfectly.
So, bladder still behaving ( very weird as it’s normally the first on high alert) but whole digestive system is absolutely mucked up which I don’t often get but hey it’s always good to throw a curve ball every now and again to keep you on your toes! Also I’m still wondering if coming off Hrt has unbalanced the old hormones :-\.
Anyway that’s me at mo.. not great. How are you all? Hope things looking up.
Big hugs
Lesred x.