Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Kate W on March 31, 2019, 12:30:48 PM
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Hello ladies,
I'm about 8 years post meno and due to terrible nocturia and dryness had been on vagifem for about 2 years, everything was good no more nocturia and the dryness and splitting had stopped. However, in December I had 2 spots of blood and was told I had to stop vagifem immediately and since then everything's been returning to how it was before.
Last week I had to have a hysteroscopy and the gynae said she thought I had lichen sclerosis which was causing the pain when putting in the speculum and could also cause bleeding. I was given some steroid cream and she said she'd like to see me for a possible biopsy in a few months.
I'm sure she's wrong about the lichen sclerosis. All of the problems I have now are, I'm sure, due to being left with no treatment for the atrophy plus the stress of having a hysteroscopy. I really can't face having more tests at the moment either. I've ordered some v.moisturiser and if that helps I shall go and see my gp to see what he says.
I haven't used the steroid cream as the itching problem cleared up the day after I had the hysteroscopy.
Can you tell the difference between va and ls?
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Hi Kate W, I have LS and I think the main difference is that it's entirely external, it only affects the vulva, clitoris and labia, not the vagina itself. So if you're getting pain or other symptoms inside the vagina it sounds like VA. My main symptoms of LS were intense itching around the vulva and anus; at first I thought it was thrush, but when it didn't respond to treatment I was lucky to go to a GP who recognised it straight away and sent me for a biopsy. It's also characterised by the skin turning a pearly greyish-white colour, usually in patches which thin and tear easily, leading to a build up of scar tissue. It really is important to get it diagnosed properly, because untreated it does have a small risk of becoming cancerous, and it's really easy to treat.
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Ok, thank you for your replies. I'm still waiting for the results of the hysteroscopy so I'll get that over with before deciding what to do next.
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Get back on the Vagifem in the mean time. Insist if necessary. One should not have to suffer and quite honestly, two 'spots' of blood should not have been the reason to stop treatment for vaginal atrophy.
How long B4 you get the next appt. Kate?
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I was told by my gp a few years ago I had LS as I had soreness, itching, pale patch anyway my gp scared the life out of me and said I needed 6 monthly check ups and steroids. I did push for diagnoses and had biopsy. Came back as n evidence. I was told to use diprobase to wash and moisture. It's all settled now and no issues in that area. I would get checked for piece of mind x
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Yet again important women's health issues are left up to the discretion of individual, often ignorant GPs. My LS was diagnosed by biopsy at Exeter Hospital, and at the time I was told I'd get a yearly check-up (whether with GP or hospital I don't know, was a bit shell-shocked at the time). 8 years later I've not had a single check; I asked the private specialist I saw a couple of times about my menopausal problems and she said it should be being checked yearly, and yet when I asked the NHS Gynae I saw earlier this year she said no, we don't bother unless your symptoms are causing problems. Guess work time again.....
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Lack of money ? Lack of knowledge >:(. Maybe a Thesis for someone?
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Its outrageous. It makes me want to scream. Why is the medical profession intent on waiting for a condition to get worse before treating instead of being pro active and treating to stop it getting worse. They are the same when it comes to preventative treatments. And it doesnt even make sense in financial terms.
Aargh!!
Kate w. Hope you get your results soon so you can resume treatment.x
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I agree Tc. Surely it saves money in the long run to treat sooner rather than later :-\
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The way the NHS is run from the top doesnt make financial sense. A couple of examples:
a friend in hospital management told me they pay 5 times the amount for disposable gloves and wet wipes per pack than I could get them for in the shops. And they are the same.
When my wife died they wouldn't take back the walking frame. the charity shops are overrun with them and there are mountains of the damn things. They are metal and could be sterilised.
If it was a private business it wouldve gone under years ago. There's lack of funds and then theres mismanagement of funds !!!
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I've got an appt to see gynae in May so will sort this out then.. It's been made worse as I'm awaiting the results of the hysteroscopy as an ultrasound found that my womb was thickened, that was scary enough and the lichen sclerosis was on top of that. That's why I'm no longer on vagifem and don't think I really want to go back on it either, but until everything's sorted one way or the other I'm in limbo at the moment. It's horrible.
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Yes, I second what Birdy says - LS needs to be diagnosed by biopsy. It isn't painful as they give you local anaesthetic, but it is a medical procedure and as such is a bit traumatic, so I'd make sure you have someone with you and to drive you home.
Tc - I had the same after cancer treatment. I had bags and bags of unused, unopened prescribed drugs, plus all sorts of sterile dressings and bits and bobs brought round by the District nurses, and they couldn't take any of it back. Incredible waste - I just don't get it.
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Can anyone tell me what is involved in a biopsy for LS please? I am petrified of medical tests and I keep getting inflammation and irritation down there that I think is thrush but it doesn't respond to thrush treatment. I have this at the moment since using vaifem for 2 weeks so I have stopped as I clearly cannot tolerate oestrogen. I am trying desperately to make an appt at a GUM clinic. Its been 3 days and I am awaiting a call back as their phone lines don't work!! I was on hold for 40 mins then got cut off! I have emailed them 3 times and just got an email back today asking for my telephone number. I guess I wait another 3 days for a call to book an appointment...….its so frustrating as I am in a full blown flare up of something and don't know what to do. I have a feeling maybe I have LS.. I did ask my private GP last year and she said definitely no but I understand it needs a biopsy to be sure. I currently have a red angry rash. Does LS present like this?
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Thrush the 1st time needs diagnosing by a professional as it can mimic other things. Thrush thrives on sugars.
If it isn't responding it stands to reason that it ain't thrush. The treatment can aggravate the condition - when I used Canestan pessaries it burned so much that I had to sit in a cool bath for hours :'(
I suggest that you eat lots of LIVE yoghurt, also applying it into the vagina is soothing. Lay on a thick bath towel, apply and rest. Seems strange that an NHS Clinic doesn't have good 'phone lines :-\.
Some are sensitive to the fillers/packaging of Vagifem. I haven't had problems with Ovestin which is applied by applicator.
Why don't you believe your Private GP? :-\. If worried, make an appt. to see your Practice Nurse? Ours are very good and some can prescribe.
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:o. eyebrows WHAT :o
NOOOOO
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Thank you for replying. It was diagnosed as thrush a few times before when I had similar symptoms. Once just by the appearance and I was treated and it cleared up. Then I was treated and it didn't clear up and a swab was taken and came back negative. Then I saw the private gp as was worried about LS seeing as I kept getting inflammation and it not responding to canesten. In previous years whenever an itch appeared some canesten cream woud sort it out but not any more. Canesten pessary burned me badly, like a chemical burn and I had bleeding too. Sometimes now if I use canesten 2% cream it can burn and make me worse. The private GP said I definitely didn't have LS but I did have thrush, but the tablet didn't clear it up. Eventually just sitz baths with bicarb and coconut oil soothed it. The GP also said I didn't really look atrophic....yet I have had genitourinary symptoms for 10 years! So I have no clue what I have but I definitely have something. I have tried all three oestrogen products with the same effect, estriol cream ovestin and now vagifem. I even got thrush when I used Oestrogel on my arm! So Im assuming my body doesn't appreciate the oestrogen, even though I felt better in myself taking the vagifem, less anxiety and stomach problems.
The Sexual health clinic has a central booking number, the lady that emailed me said they know about the fault and are trying to correct it. I spoke to the receptionist at the health clinic where the GUM is held but they cannot take bookings for it themselves, she said she had not been able to get throught o them herself some time ago and couldn't believe it still wasn't working. She said to leave a phone message which I did and I emailed too. It has taken 3 days to hear back and now I wont hear from them until Monday. Good job I wasn't after the morning after pill eh?
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Why keep using a product that makes the area burn :-\ ........... get some LIVE yoghurt down there, it's cooling.
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I don't use the canesten any more, this time I treated with fluconazole tablet and that's what I have done the last few times. It can seem like it gets worse even after this or at least doesn't get better. I don't really know what else to use. I use multigym YESVM and olive and bee daily to keep things moist and in balance. I have tried yoghurt but that stung too. I drink Kefir daily so Im getting the probiotics that way rather than regular yoghurt. Seems to agree with me better.I am using the coconut oil and bicarb baths at the moment but not improving. I have no idea whats wrong but really hoped to see the GUM clinic while I was having the flare up so they could see what im dealing with. My doctors are useless hence my trips to the private gp, but tbh I didn't get a whole lot more joy there either. This has been going on for a couple of years now. Im miserable and scared to death of everything that goes near me down there. I either get thrush or UTI at the slightest change. Doctors seem to think its all quite normal.
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It might be normal but that doesn't help if you don't get something to ease symptoms >:(
Yoghurt shouldn't sting, there's nothing in it .......... I use Greek goat LIVE inside and out. Regular yoghurt rarely has live cultures. Do you think that U are using too many products: maybe stop everything for 24 hours and then cut out the olive and bee ?
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How about just using the Olive & Bee? It has the least ingredients, just olive oil and beeswax, so completely harmless. I would definitely stop the Multigyn (too stingy in your situation) and the Yes VM. I agree with CLKD about too many products. It's so tempting to slap things on when you are in trouble with that region, hoping something will help, but perhaps for the moment "less is more". I feel so sorry for you, it sounds awful.
JP x
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Honey is healing, used often for ulcers that fail to heal - but oh so sticky down there :-\. Maybe a cooling bath with salt water followed by patting dry and laying au natural on the bed?
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Thanks everyone. I will try stopping the products for a day or two. Maybe using O & B if the itching gets too much. It feels worse when its dry. I am daily sitz bathing with baking soda and coconut oil. Maybe I will just use salt instead. I appreciate everyones help. I am really struggling and my stomach has kicked off really bad. No sleep at all last night. Im so morbidly tired. xx
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Can anyone tell me what is involved in a biopsy for LS please? I am petrified of medical tests and I keep getting inflammation and irritation down there that I think is thrush but it doesn't respond to thrush treatment. I have this at the moment since using vaifem for 2 weeks so I have stopped as I clearly cannot tolerate oestrogen. I am trying desperately to make an appt at a GUM clinic. Its been 3 days and I am awaiting a call back as their phone lines don't work!! I was on hold for 40 mins then got cut off! I have emailed them 3 times and just got an email back today asking for my telephone number. I guess I wait another 3 days for a call to book an appointment...….its so frustrating as I am in a full blown flare up of something and don't know what to do. I have a feeling maybe I have LS.. I did ask my private GP last year and she said definitely no but I understand it needs a biopsy to be sure. I currently have a red angry rash. Does LS present like this?
Just to let you know I had a biopsy on Mon to see if I have lichen scherosis and it was no way bad as I anticipated. I went to a specialist vuvla clinic at my local hospital and they were brilliant. I wasn't expecting the biopsy there and then and I suffer from aniexty due to menopause so had bit of wobble when they said. Then I though sod it get over and done with and the nurse and Dr was brilliant. They said the worst bit would be the needle for local but I didn't feel anything so impressed. Just a bit sore and woozy rest of the day and told to rest. If I can do it anyone can as I hate hospitals. Good luck if you have to it's the only way for a diagnosis just got to wait 2/3 weeks for results
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Well done and good luck Donna-Paul x
Thank you 😁
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Good luck Donna. I didnt know there was a specialist vulva clinic. I dont think theres one where I live.
So glad you persevierd through your anxiety and are now on the way to diagnosis and treatment.
Xx
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Good luck Donna. I didnt know there was a specialist vulva clinic. I dont think theres one where I live.
So glad you persevierd through your anxiety and are now on the way to diagnosis and treatment.
Xx
Thank you apparently you can see a dermatologist or as in my hospital a special vulva cliinic ran by a lady Gynecologist. I must say the new ointment she gave me has helped and so far I haven't used the steroid cream🤞It's called hydromol and you get it in cream, ointment and apparently a wash. My dr has given the first 2 on prescription as I have yearly one. The Dr did say boots sell it!
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Well I thought I give you update just been to drs and got my results from my biopsy a month ago. Apparently they think I have chronic dermatitis with possibility of allergy contact dermatitis. Now waiting for referral to dermatology clinic for patch testing. Been given a different steroid cream I have to use for everyday a month then every other day for a month and then twice weekly for third month😳 has anyone else had this diagnosis at least I'm nearer to knowing what causing it!
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:thankyou:
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How is it? Are you seeing improvement?
Let's just say it's not great🙁 the hydromol ointment has helped and now got to use steroid cream again so 🤞 it be better.
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Oh how miserable. But definitely not LS? Any idea what is causing it?
Well Gp didn't say to much apart from I've now got to see dermatologist I said at least it's not LS she said what I've got is the same treatment. I'm still bit confused by it all🤔