Doing so well on zoladex now what???........ - Endometriosis UK

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Doing so well on zoladex now what???.............

mablesky profile image
3 Replies

Feel really fed up.

Have been having zoladex for the past seven months and have felt good (first time in a long time)I have recently however started having re current urine infections and all sorts of what feels like endo pain but with out the bleeding.I respond to antibiotics then bam infection back again .Gp now has referred me back to gyaeni (as I was discharged on zoladex a while ago)he thinks it may be gyaeni related .so really fed up I am planning to move to cornwall and start a new job end of June feeling really sorry for myself at the moment normally i can try and remain positive but I cant seem to see an end to this just when I thought zoladex would be my saving grace if only for a while then this.could it be something other than endo????

sorry to moan just quite low about this looking forward to my move to cornwall though.Hope everyone else is having a good day.

Bxxxxx

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mablesky profile image
mablesky
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motherfella profile image
motherfella

Hi huni. I have just started prostap but I also find having a bath with epsom salts helps. Haveyou tried cranberry juice? It's meant to be really good for urinary infections. I also take buscopan for the cramps which helps a wee bit. I also have a mirena coil fitted which really helps. Hot water bottles in bed and I've also overhauled my diet to include lots of fresh fruit and veg and as little soya as possible since soya contains oestrogen which causes cramps. Cauliflower has a natural anti-inflammatory within which should help your pain. I hope this helps Xxx

stevieflp profile image
stevieflp

The problem with chemical menopause drugs is that they are only ever meant to be a temporary thing - not a long term solution. The temporarily shrink endo. It generally springs back up again once the hormones return to normal and the effects of the drug wear off leaving you back to square one.

Also, if you then undergo a lap to investigate the presence of endo, if you have been on drugs that temporarily shrink it, the surgeon will not get a true picture as it will take several months, or maybe longer if you are lucky, for the endo to re-appear to it former glory and . . you are more likely to be told by an inexperienced consultant that you do not have any endo and leave you wondering what the hell is going on and what next. You would probably need to wait several months after ceasing drug treatment for any surgeon to be able to fully ascertain the true extent of your endo problem.

The only way to really deal with endo is to undergo excision surgery to actually remove the endo rather than just temporarily shrink or mask it. Gynaes do treat endo but I would recommend asking for a referral to an endo specialist consultant who just focus on endo, whereas a gynae will treat all different kinds of women's problems and not necessarily be an endo expert, although obviously some will be more so than others. With an endo specialist, you will know that they are just that. They will be qualified gynaes anyway who have moved on to specialise.

The thing with endo is that it tends to get classed as just a 'gynae' problem, particularly by GPs, some of whom don't seem to know too much about endo and the variety of symptoms it can cause (preferring to diagnose a water works infection, or IBS or just painkillers for painful periods) - as for those consultants who tell you there is nothing that can be done and just refer ladies to a pain management clinic - don't get me started on that!

Endo can affect the bowel or the bladder, in fact any area of the peritoneum and in extremely rare cases other parts of the body. It needs to be investigated as a disease of the peritoneum rather than just gynae, albeit it stems from gynae as is linked with monthly bleeds. Hence an endo specialist is needed.

I am sorry to get on my high horse about endo treatment but I can't help it when there just seems to be such ignorance even amongst the gynaes who purport to treat it.

There, that feels better :)

mablesky profile image
mablesky in reply tostevieflp

thank you for both replys

Am so fed up with being pushed from pillar to post seeing all sorts of people all giving different takes on things all contradicting them selves to some extent!!!I wonder if this confusion will ever end!!! Thankyou you both have given me food for thought I really must be more assertive in my appointments Im not a weak person but sometimes i dont know where to begin in appointments.Maybe I may have more more consistant care in cornwall who knows??

Thanks

again

Bxx

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