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[Ayesha]

CLKD, every time a woman mentions on here that she leaks you always say I don't, lucky you, but a lot of us do and it would help if you didn't make us feel that we have something wrong with us. It's extremely common as we age and this is what happens to millions of women, including men.
If we all went to see a nurse practitioner they would be over run.

[Snowcat]

Hi Ayesha, thank you for your reply.  I know it’ll take time when I’m being sensible - just that all this is so horrible and I blame myself for coming off the HRT
Regime that had worked for me for years - what on earth made me think I’d be ok on just vagifem 3 times a week?!! I was taken off HRT as I had blood clots in my lungs but not told I could have the patches instead of the pills until a very helpful haematologist told me that my clots weren’t due to the HRT but to thrombocytosis (I make too many red blood cells) then I had a bit of a battle with the GP who wasn’t up to date with HRT information, but she was impressed with all my research and has now agreed to give me the patches (gynae also approved this) so hopefully no more opposition going forward! I woke this morning and everything down under feels so sore and like a heavy achey feeling.  But itchy which I hope means the skin is starting to heal as I’ve not had itch before now. 

I wish I could do without panty liners but I have interstitial cystitis which can cause unexpected leakage when my bladder is inflamed and all this atrophy isn’t helping that, plus the odd cough or sudden sneeze etc - I know about kegels but doing that upsets my bladder more.  Being a woman is so much fun isn’t it?!!

I’m using Ovestin & vagifem daily together with YES WB (the VM one doesn’t seem to work for me) Gynae said to use hydromol but that’s like lard and smoothing it on just pulls at sensitive skin.. she said it would help the thinned skin (made worse by wrongly prescribed dermovate!) heal - I hope the other methods I’m using will also do this but as I also have fibromyalgia trying to view my nether regions with a mirror, torch and as yet to be discovered yoga type positions I’ve no idea what’s going on down there lol! I’m not seeing gynae again for 2 months but I am seeing my GP in 2 weeks so I might ask her to take a look just to make sure nothing is getting worse as having been misdiagnosed twice I don’t trust anyone much!

[Ayesha]

You are doing absolutely everything you possibly can to relieve your symptoms and yes, Fibromyalgia won't make matters any easier for you.
Don't even think about the fact you are using panty liners, put it right to the back of your mind and just get on with the fact they help and its not an issue, as long as you buy the thin one's, I made the mistake and bought a thicker brand and it made me very dry and of course sore.

I know what you mean about the exercises and I do them when I think about it but its not on my list of what's important in my life.

 

[Snowcat]

Thanks Ayesha, you’re very kind.  I’ve ordered some reusable 100% cotton panty liners (thin ones - I know what you mean about the thicker ones - I made that mistake too - makes me wonder why I thought sitting on a big pad of absorbent material wouldn’t dry me out 🙄)

I guess we all need to be kinder to our sensitive parts - I tend to go at everything like a bull in a China shop! I’m going to treat myself better from now on although I might still thump the gynae lady who told me I could overcome the intense pain by imagining myself in a happy place!

[CLKD]

When I have slow transit my bladder feels irritated, below my belly button 

[Snowcat]

Hi CLKD - I just wrote you a long reply and then it disappeared! 🙄😬 so, yes I get that too - my urologist told me that the nerves that supply the bladder and bowel are tied up together at the base of the spine so what affects one often affects the other - hence bladder discomfort when constipated- he’s always telling me never to get constipated - not always easy, especially with many painkilling medications. 

I’ve just worked out that when I take off the 7 weeks of misdiagnoses and wrong treatments I’ve only been on the Ovestin daily and new dose of Estraderm patches for just over 3 weeks so too early to Expect much improvement- it just seems so much longer!

[CLKD]

Oh! that ether layer where messages disappear into never 2 B seen again 

How R U feeling since U began this thread?

[Snowcat]

Hi CLKD well that’s a tricky question - I feel better knowing that I’m not the only person in the universe whose painful undercarriage is preventing me from sitting down - at all - not even for 2 mins, but then I feel bad that there are so many of us suffering! It helps to be able to talk about it all and get first hand experienced which are often different from what the doctors tell you! The reality is what I feel better knowing.

The doctors say ‘give it a couple of weeks and you’ll be feeling much better’  or vaguely ‘it’ll take a little while’ whereas if the lovely forum ladies say ‘you’re joking! 3 weeks! It took me at least 3/4 months even to begin to improve’ then at least I know.  Otherwise you think there’s something worse (could there be much worse?) going on.

I was at the stage where I genuinely didn’t want to wake up the next morning - albeit that was when no-one seemed to know what was wrong with me.  An A&E doctor diagnosed it as herpes and gave me antivirals, paramedics said it sounded like Vulvodynia (which terrifies me) and inexperienced gynae nurses said everything was sore and swollen so I must shove more dermovate down there! Oh and I was told it was infection so given antibiotics and also thrush (which to be fair I did test positive with a few weeks later so I don’t think it was at the time as I’m no stranger to thrush being diabetic and having had a lot of antibiotics for recurrent UTIs so yes, it’s a relief to find this forum and get some common sense and good ideas.  I think my urologist was right when he said that with a chronic health condition we end up becoming our own expert!

[CLKD]

Yep.  Pity then that medics don't turn to patients in any chronic speciality to ask the questions 

Look up Vulvodynia - you are not alone with that! [tnx Emma]

One step at a time [see what I did there, sorry - if you can't sit down you'll have to ....... ]

When do U get the next appt to discuss symptoms and progress with treatment?

[Snowcat]

Hi.  I saw gynaecologist on 20 May and she said she’d see me again in 3 months’ time.  I guess that’s how long she thought any sign of improvement would take!

I’ve been extremely sore today after using YES WB and YES VM - and they seemed to be helping last week! The only thing that seems to soothe it is the Ovestin cream.  Gynae was very insistent that I use hydromol ointment too but it’s so thick I can’t see how the ovestin cream would get through it to the skin below … even if I put the hydromol on once a day ( she said twice) it won’t have disappeared buy the time I use the Ovestin.  On the YES website it said 12 hours and that’s not as thick as the hydromol.  Any ideas?

I know if I go there in 2 months time and say I’ve still got problems she’ll say it’s because I didn’t do as she advised.  Thank you for your support so far!

[Minusminnie]

Just my thoughts.
Reduce the number of products you are using to avoid possibility of a mix causing irritation. Maybe cut out the yes products for now ?

If you start and trial for a time with less you will know where you are. Anything can be swapped, added or tried later.

Stick with the Ovestin/estriol though & maybe experiment a bit with the use of the hydromol.

Difficult when you have to ‘report’ back to the GP but eventually you will find what works for you even if it is outside his/her recommendation.

[Snowcat]

Hi Minusminnie.  Thank you for that - I think you’re right - when you’re desperate for something to work you’ll try anything but I’m not good at being patient and giving each thing a good try.

I’m going to do what you suggest.  Definitely sticking with the ovestin cream in the evening  (I only use it on the labia as I use vagifem internally which I’ve done for years) and just a little hydromol ointment in the morning.  There are several different hydromol products like hydromol intense and hydromol relief but the gynaecologist only suggested hydromol ointment as she said it’s better than the cream and has less ingredients.

It’s difficult because it’s all so very sore (like a burn and sometimes it really stings) that I feel it needs something soothing but whatever I use never takes the soreness away.   Gynae said it’ll take time as the skin is very thin & damaged - I just long to sit on my sofa again and drive my car! I’ve got a donut cushion but it’s not very comfortable.

If anyone reading this has experience with hydromol & Ovestin and can tell me hiw long you have to leave it between them I’d be really grateful- eg if I use the hydromol in the morning how long is it before I can use the Ovestin? I think I read 8 hours but someone said 12 hours. 

I don’t want the barrier hydromol makes to stop the ovestin being absorbed, as that’s the thing that’s eventually going to help the most.  I’m also interested to know what pain relief, if any, works for them.  My GP has given Gabapebtin 300mg x 3 daily and amitriptyline 25mg at night but I’ve stopped that as it was giving me really low blood pressure and making me feel faint and just generally weird! I’ve also got zapain but that causes constipation which is something I’m always trying to avoid.  I tried to do without painkillers yesterday and had a dreadful night with the soreness - only 1 hour’s sleep. I do feel like I’m stuck in the middle of a nightmare - so thank you for replying - it’s always helpful to get other people’s views 😁