Any advice welcome : Hello. Does anyone have advice... - LUPUS UK

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Any advice welcome

littleeed profile image
11 Replies

Hello. Does anyone have advice on the use of estriol cream for vaginal atrophy. Also whilst seeing the urologists they have advised that I should not worry about the fact that I have both maternal and paternal grandmothers and maternal aunts who had breast cancer. Also they've changed medication to Hiprex 1gm twice daily from nitrofurantoin 50mg (prophylaxis treatment)

Also changed to solifenacin 5mg from mirabegron 50mg.

There's quite a few side effects I am having from changes and some of the contraindications are a bit worrying. For example, having SLE , my mam also suffered with thrombosis on a few occasions. The breast cancer which I mentioned above. I have a hiatus hernia which is also mentioned on the information leaflet. The CRPS is also stage 3 and worried about any more damage to nerves etc.

All in all I'm very stressed about the whole thing. Want to take meds to help me but I'm really concerned about what it's all doing to my body!!

Very tired and weepy. 😢😞

Any advice welcome. Thank you

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littleeed profile image
littleeed
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11 Replies
JenniferW profile image
JenniferW

I found a vaginal pessary (vagifem) very helpful in stopping urinary infections.

Can you talk to your GP about your concerns around breast cancer? I guess it's a balancing act between stopping kidney damage from UTIs and any risk from the HRT given your family history.

littleeed profile image
littleeed in reply to JenniferW

Hi Jennifer W. Thank you for your reply. I have 3 monthly bloods due so will give GP another try. Our surgery isn't the best at the moment. No permanent doctors no continuity of care 😞 sadly. Xx

LalaH52 profile image
LalaH52

I have Vagirux vaginal pessaries which the gynae prescribed for the same issue which was causing painful sex. Sorry I can’t offer any advice about the estriol cream.

Is it worth asking your GP about genetic testing for breast cancer given your family history?

littleeed profile image
littleeed in reply to LalaH52

Hi LalaH52. Thank you for your reply. I will try the GP about genetic tests, if they aren't open to it I will look into cost of private tests. Xx

glasgow-girl profile image
glasgow-girl

I have used the estriol cream, vagifem and vagirux, varies what pharmacy provides. I had breast cancer in 2003, (only slightly oestrogen feeding).

I don’t think I can give advice but can only say it helped both my physical gynae health and my mental health that suffered due to the gynae issues. Early menopause, Vaginal atrophy and Lichen Sclerosis (autoimmune) are the problems I manage.

I think it would be worth trying it for perhaps a month and seeing how you feel. Everything with medication is a balance. I would be loathe to come off localised oestrogen.

Good Luck with everything

littleeed profile image
littleeed in reply to glasgow-girl

Hi glasgow-girl. Thank you for your reply. I think I have so much going around in my head that I can't think straight some days!🥺. The help on this forum always puts things into perspective. Xx

CecilyParsley profile image
CecilyParsley

Hi Littleeed, I had a hysterectomy at 39 and reacted very badly to HRT so they just stopped it a few weeks after my 40th Birthday.I had no other form of oestrogen until twenty years later when my UTI`s became monthly and a Urology nurse suggested I try Vagifem pessaries just twice a week. The difference has been truly life changing. I had two UTI`s last year. I have had no side effects from it whatsoever only positive gains. Not having to take two weeks of Nitrofyntoin every month is a real bonus.

I would chat things through with your GP given your family history. I hope you find something that works for you xx

littleeed profile image
littleeed in reply to CecilyParsley

Morning Cecily. Thank you for your reply. The consultant urologist I saw first decided not to prescribe the cream then the one I have just seen said that there was no worries about me using it even with my family history. It's difficult when they have different opinions as you don't know who to believe!! Will try GP but don't hold out much hope as practice not very good at the moment. Xx

CecilyParsley profile image
CecilyParsley in reply to littleeed

I hear you I have a new GP practice and so far my experiences have been abysmal. My Mam had thrombosis so I was concerned about the pessaries. Also because my blood pressure was so high on the tablet HRT I thought my head would burst but in the end I just had to try it and I have never regretted it. I can totally understand your concern. Have you read the drug information about the cream ? Maybe if you are aware of the incidence of breast cancer you can make a more informed decision? I don’t think anyone can give you a certainty and it might just come down to the fact that it is a risk you cannot accept. Not an easy choice I know. Let us know what you decide lovely xx

Cd6728 profile image
Cd6728

Hi,I'm sorry you're going through a stressful time, sounds incredibly tough.

As far as I'm aware, vaginal / topical estrogen (pessaries / creams / ointments) only work locally in the vagina/vulva/urethra. So they have an incredibly low risk of systemic / whole body effects and therefore a incredibly low risk of whole body side effects and breast cancer risk.

Vaginal / topical estrogens are brilliant for maintaining skin and mucosal health in vaginal, vulva and urethra so will work wonders for symptoms affecting them (dryness, itch, UTIs, soreness) .

As for breast cancer and clot risk, others have mentioned speaking to your GP about your individualised risk given your family history and level of concern.

You could always look for a menopause specialist in your area (from British Menopause Society website) to discuss systemic HRT and risks etc.

Good luck and take care

littleeed profile image
littleeed in reply to Cd6728

Thank you for your reply. As I said it's how consultants in the same speciality give conflicting advice and information. Having people on this forum is invaluable as there's always someone who has had or is having the same issue unfortunately 😔. Xx

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