Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[Claire MM]

I could just cry I feel in absolute despair, I've been using progesterone pessaries without estrogen cream and it's led to/added to horrible atrophy symptoms. I've also been shattered all of the time since going onto 200mg pessaries continuously to stop bleeding. I was barely functioning. last week I did a dip uti test and there were leukocytes in my urine, I eventually managed to get antibiotics from the doctors (two lots now) I still feel dreadful but i don't know if it's atrophy/hormonal imbalance symptoms remaining which obviously predisposed me to the UTI or the UTI. The antibiotics are awful and undermine my immune system (I already have ME/CFS).

I did a urine sample to be sent off earlier this week, there was a mix up and I had to send another. I phoned up today to get the results and for some reason it's come back as not having been analysed. I'm in total despair. I don't know if I need to take more antibiotics or if the uti is cleared. Ive been waiting to have a hysteroscopy to potentially have a mirena fitted. I think I'm just going to have to go ahead with the mirena because I can't do this anymore. The GP is due to phone me back today. I'm honestly in so much despair, I don't think they understand how badly this is affecting me and I'm concerned if they do they will want me to go on anti depressants. I'm so despairing that they don't have this result, it's all I've been hanging on for to know what to do for the best and see a way through. I'm using estrogen vagifem and cream now. Just please use the topical estrogen everyone it's not worth it. I hope there is a way through this,

Thank you for listening,

Claire

[Flossieteacake]

Claire, I am so sorry you are in so much pain. VA is so painful and I totally understand why you are upset. I am glad you are using localised oestrogen now. It is likely you do not have a UTI but do not worry as the localised oestrogen will really help you to feel better.

How frustrating your urine sample has not even been tested. I would hold off from taking antibiotics as you may not have a UTI and excess antibiotics can cause thrush which is the last thing you need right now.

If you feel you do not need antidepressants then you can refuse them. You know your own body.

[Claire MM]

Thank you Flossie, I know when I'm up and about and functioning then I don't feel depressed, it's just when I'm ill/struggling. I also feel fluey and I'm not sure if that's uti, hormones or side effects of nitroferatonin. I had this happen last summer, had been using utrogetsan as a pessary, tested positive for uti on a dipstick, took antibiotics, still had pain and symptoms but negative on a dipstick test and so figured out on my own to use the estrogen. It seemed to all go away after a while and I changed to cyclogest, started bleeding and thought maybe the topical estrogen wasn't a good idea. How wrong I was. I now know that a dipstick is not definitive and that you need a lab culture which is why I'm so dismayed, I mean the doctors ask me my symptoms but they can mimic a uti, I just want to know it's not that. And in the meantime I'm still using cyclogest as a pessary which I don't think is helping and getting lots of systemic low estrogen symptoms such as nightsweats which could also be confused for infection.

Thank you so much for your wise words, it's all so sore it actually hurts to put on the estrogen cream or use the estrogen pessaries, all these problems and the gp has not even examined me once over the year or had a thought that it could be VA, never mentioned. I've lost so much strength in my bladder aswell, it definately happened with the prog pessaries.

Thank you for writing back x

[Flossieteacake]

Thank you Flossie, I know when I'm up and about and functioning then I don't feel depressed, it's just when I'm ill/struggling. I also feel fluey and I'm not sure if that's uti, hormones or side effects of nitroferatonin. I had this happen last summer, had been using utrogetsan as a pessary, tested positive for uti on a dipstick, took antibiotics, still had pain and symptoms but negative on a dipstick test and so figured out on my own to use the estrogen. It seemed to all go away after a while and I changed to cyclogest, started bleeding and thought maybe the topical estrogen wasn't a good idea. How wrong I was. I now know that a dipstick is not definitive and that you need a lab culture which is why I'm so dismayed, I mean the doctors ask me my symptoms but they can mimic a uti, I just want to know it's not that. And in the meantime I'm still using cyclogest as a pessary which I don't think is helping and getting lots of systemic low estrogen symptoms such as nightsweats which could also be confused for infection.

Thank you so much for your wise words, it's all so sore it actually hurts to put on the estrogen cream or use the estrogen pessaries, all these problems and the gp has not even examined me once over the year or had a thought that it could be VA, never mentioned. I've lost so much strength in my bladder aswell, it definately happened with the prog pessaries.

Thank you for writing back x

I have found many GPs do not know what VA is. I was constantly having UTI symptoms but tests would come back clear. I mentioned to a GP that it could be VA and he told me I do not have any VA symptoms.

I remember when first applying Ovestin to my skin it really stung too. You may find it helpful to mix a tiny bit with a vaginal moisturiser such as Sylk or Yes as this will soften it a little. When you insert the pessaries I find it helpful to also apply vaginal moisturiser to help it glide in.I am actually unable to insert them without any even after using Ovestin for two years.

You have a lot going on and it can be hard to know which symptom is which but I know feeling low can make it all so much worse. I think once the VA is under control you will feel much better.

Shame on the lab for not testing the urine sample by now!

[Claire MM]

Thank you Flossie, yes they don't seem to take it seriously or know about it, I am so glad to have your advice on this I will try that, did they just eliminate you having uti's with a dip test do you know? Did you feel really uncomfortable until the estrogen started to work? It's like a burning pain especially after going to the toilet and wiping the area with toilet paper. Thank you for being so nice, feeling v sorry for myself x

[Flossieteacake]

Thank you Flossie, yes they don't seem to take it seriously or know about it, I am so glad to have your advice on this I will try that, did they just eliminate you having uti's with a dip test do you know? Did you feel really uncomfortable until the estrogen started to work? It's like a burning pain especially after going to the toilet and wiping the area with toilet paper. Thank you for being so nice, feeling v sorry for myself x

My GP practice always send urine samples to a lab. You are given a sample pot which contains some powder to put the sample in to keep the sample fresh too.

Yes, I felt absolutely awful until the symptoms improved. I woke throughout the night to go to the bathroom, was in so much pain with shooting pains going up there, such sore skin it stung like I had burns. You may find it helpful to apply an emollient to the area to act as a barrier because going to the loo and wiping can make the skin sore too. 

I had to give up baths and switch to showers to avoid prolong contact with water. I was washing in water alone until a meno specialist told me this was causing even more dryness. I was advised to apply emollient, wash it off in the shower and then reapply afterwards. I now wash my whole body with Aproderm and have not touched shower gel since.

I really do sympathise with the pain. I know how awful it is.

[Claire MM]

Oh thank you Flossie, I'm so sorry you went through this, this all sounds very familiar I have some hydromol and some dermol cream from the last time which I will try aswell but will look out for aproderm. The GP called and I have to go in and do another sample and check they actually put it in labelled correctly etc, I think it potentially wasn't done because the surgery don't seem capable of just doing a sample to be sent (!) Anyway no cream today so I don't contaminate it but I will afterwards. She also said that she thought the 200 cyclogest at night could be impacting my mood, it certainly impacts my energy, BUT it stopped the bleeding. Anyway I'm going to try halving it for a bit and see what happens. Do you use systemic HRT if you don't mind me asking? And if so how do you get your progesterone? Sorry to ask so many q's! Thank you for your sharing your techniques for managing this I'm glad things are improved for you x

[Flossieteacake]

Oh thank you Flossie, I'm so sorry you went through this, this all sounds very familiar I have some hydromol and some dermol cream from the last time which I will try aswell but will look out for aproderm. The GP called and I have to go in and do another sample and check they actually put it in labelled correctly etc, I think it potentially wasn't done because the surgery don't seem capable of just doing a sample to be sent (!) Anyway no cream today so I don't contaminate it but I will afterwards. She also said that she thought the 200 cyclogest at night could be impacting my mood, it certainly impacts my energy, BUT it stopped the bleeding. Anyway I'm going to try halving it for a bit and see what happens. Do you use systemic HRT if you don't mind me asking? And if so how do you get your progesterone? Sorry to ask so many q's! Thank you for your sharing your techniques for managing this I'm glad things are improved for you x

If you are okay using hydromol then you can just continue to wash with it. I was just mentioning the emollient I use in case you wondered but there is no need to buy Aproderm.

It does sound like the surgery has messed up and not sent your sample. How annoying you have to go in again but I am sure they will test it this time.

I can quite believe the cyclogest is impacted your mood as many are sensitive to progesterone and it can take time to find one that suits.

I am on oestrogen patches and have a real problem with progesterone. I have tried all available and each one made me suicidal. I am under a menopause clinic and they do not really know what to do with me. They offered me the option of oestrogen alone and regular scans to check the womb lining but I am housebound so this is not an option.

I take one destrogel (mini pill) a day and they suggested I take two a day as this would be enough progesterone but sadly this made me suicidal as well. I have a meno appointment coming up and am waiting to see what they suggest next.

Do not worry though, this does not mean you will react to all progesterone and there could be one you find more tolerable.

[CLKD]

leukocytes in my urine. within normal limits for most people.

Get some appropriate vaginal atrophy treatment, which won't do any harm regardless.  A urine sample must be sen to a Lab., a GP should NEVER give ABs on a whim, that's why the World will be in trouble as bugs become resistant.  If a sample grows a bug then proper ABs can be prescribed for 7 days.  3 isn't enough.

MayB put the product n Ames into the search box to see if there are any threads - make notes ;-).

Haven't read all the responses as I"m tired 

[Claire MM]

Thanks CLKD, They totally come in with antibiotics without testing, I've been given a one off sachet and then a three day course of something else. Finally they sent off a sample today, I went in did the sample put it in the vial, labelled it, added the paperwork which I think wasn't done the last time and put it in the box. They didn't even let me know it was rejected yesterday. I am taking the advice on treating VA because I know I have that anyway and this isn't just a UTI I'm pretty sure, plus that makes you more prone to them. I appreciate you taking time to reply when you are tired. I'm really hoping that the test comes back negative because I cannot face taking any more antibiotics they just floor me, I probably won't get results til next week. I find it so frustrating with the surgery as the whole point is you are not well when dealing with them so making it this hard to sort out a test is not helpful. Originally my leukocytes were 70 so I think out of normal range, but no nitrates. I'm hoping if there was anything at this point it's gone. I also looked it up today and apprently progesterone can downregulate your immune response while estrogen heightens it. Given that I've been taking a high dose vaginally for several months w/out estrogen in the area that makes sense to me. Plus ME/CFS issues for me have meant immune issues, so I'm going to try and reduce the progesterone I'm on. Thanks for your advice I appreciate it xx

[Claire MM]

Thank you FlossieTeaCake, Oh that is tough being housebound and dealing with the difficulty with all progesterone as well. I have yet to find one I can tolerate. I can't take it orally and clearly my body is not coping well with it vaginally either. All the menopause people/ gynae etc want me to get a Mirena and I don't really know what else to do, but the prospect of it's impact on mood and my whole system concerns me a lot. Years ago when I first got ill with ME I was on a pill high in Levonorgestrel and I don't want to feel that way again. A friend of mine who had severe PMDD and endometriosis ended up getting a hysterectomy when we were in our thirties so she just has an estrogen patch and she says she feels absolutely fine now, but that seems like a big step! I can relate to feeling suicidal on progesterone. Thank you so much for writing back to me today, it really helped just to know that other people are out there going through this. I particularly appreciate it given that you have so much of your own to deal with that you took the time. I have had periods sometimes of years with ME of being housebound and often bedbound and I know how hard it can be, thank you so much for being there xx

[CLKD]

When I get the need2P I swallow two Nurofen every 3 hours until symptom of the nip as the urine flow shuts off, eases. 

[Flossieteacake]

Thank you FlossieTeaCake, Oh that is tough being housebound and dealing with the difficulty with all progesterone as well. I have yet to find one I can tolerate. I can't take it orally and clearly my body is not coping well with it vaginally either. All the menopause people/ gynae etc want me to get a Mirena and I don't really know what else to do, but the prospect of it's impact on mood and my whole system concerns me a lot. Years ago when I first got ill with ME I was on a pill high in Levonorgestrel and I don't want to feel that way again. A friend of mine who had severe PMDD and endometriosis ended up getting a hysterectomy when we were in our thirties so she just has an estrogen patch and she says she feels absolutely fine now, but that seems like a big step! I can relate to feeling suicidal on progesterone. Thank you so much for writing back to me today, it really helped just to know that other people are out there going through this. I particularly appreciate it given that you have so much of your own to deal with that you took the time. I have had periods sometimes of years with ME of being housebound and often bedbound and I know how hard it can be, thank you so much for being there xx

You are most welcome.

I too would be wary of getting the coil as you do seem sensitive to progesterone and you became unwell on progesterone before. It really seems to be so tough for some of us to find a progesterone we can tolerate. You could ask your GP to refer you to an NHS menopause clinic for more specialised help.

It is wonderful your friend feels well after having a hysterectomy.

I know how exhausting ME is and to have all this going on too can feel like a lot to deal with. Please know you can post on here anytime and there will always be somebody who will listen and support.

I hope you are able to get a good sleep. Remind yourself that VA treatment can take some time before your symptoms improve but you will get there and this horrid pain will not last.

[CLKD]

Morning.  Sometimes it is easier to put a little of the product into the vagina but not all the way up, to ease the tissues into softness so that they don't itch or become sore.  If that works then press a little further up on a slowly, slowly basis.