hi ladies hope u all ok and not suffering... - Endometriosis UK

Endometriosis UK

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hi ladies hope u all ok and not suffering to much :-/ im just wanting a little advice or wondering if anyone else going through the same..

Laura2705 profile image
8 Replies

in may this yr i had my 8th lap.but since middle of 2010 ive been taking cerazette daily with no breaks at all but still have bleeds..for the last 5wks ive been bleeding constantly and gone from taking 1 cerazette a day to 3/4 a day..which my gyne advised to do if i was bleeding..and i still am plus taking norethisterone with no joy.. im feeling horrendous! too much hormone, pains, tired, achey etc hadenough#

can anyone pls help? xx

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Laura2705
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8 Replies
mablesky profile image
mablesky

Hi there

sounds like you are really going through the mill.do you have much contact with a GP ?because i think you have given the cerazette more than enough time to work maybe you need to try some thing else its exhausting bleeding all of the time ive just been to see my gaeni and he has suggested a course of Zoladex implants which put you into a menapause state i have had them before and it did stop the bleedeing and most of the pain .I dont know what your cicumstances are but it may be worth a try if only to give you a break.I hope things improve for you soon its no fun i know xxx

missteal profile image
missteal

Hi hun, how much norethisterone are you on? I have been on it for a while now and had a break through bleed, my gp upped the dose to 3 a day, You can have up to 25mg a day. I'd go back to see your gp hun and see if they can up the dose til you stop bleeding, hugs :( xx

Evexxxx profile image
Evexxxx

Hi I too am on norethisterone 3 times a day. With this I get a flare up maybe once every two weeks.. I still get blood in my urine though. Went on hols recently and had to take 4 aday because id be swimming etc. My new consultant said that i should come down to 2 a day as its bad for breasts. I did this last week - I had a bad time since thurs - labour pains etc so I went back up to 3. also started taking iron again. I know if i complain the will try to put be into early menopause which at 36 i feel is too young. Or else the will do another lap. last one was last Chirstmas. Will wait and see for another two months.. it is even sore to press my stomach and there it feels like a radiator is on my back.. honestly thought i was going through the change with the sweats

Keep postivie

Eve

Chrissie66 profile image
Chrissie66 in reply toEvexxxx

Hi Eve

Have you had Zoladex (early menopause) before? You know that it only lasts for as long as you're having the injections, and when you stop, everything starts up again as usual?

Laura2705 profile image
Laura2705

thanx everyone for your answers..ive had zoladex 4 times now each lasting 6month..stopped the bleeding a little not as heavy but the hot flushes sweats etc etc were a nightmare ive been taking 3 norethistoerone...sick now just so tired.. i think 12 year of constant endo pain 8 laps, luna, removal of 1 ovary, 4 lots of zoladex...think ive had enough now only option i think is a full hyst but im only 27??? i do hav 2 positives though..ive managed to hav 2 beautiful healthy girls while going through all this :-) just think its my only option really...

stay strong ladies xxx

Chrissie66 profile image
Chrissie66

Hi Laura. I am so sorry you are going through so much rubbish at the moment :(

Before you even consider a hysterectomy though, go to Google and type in "Does hysterectomy cure endometriosis" ....basically, no, it doesn't. You will go through a major operation with all of the risks it involves, and all of the recovery time, and the endometriosis will in all probability come back. And if it's as aggressive as yours sounds, it will start coming back practically from the moment they are stitching you up...

Also - why do they keep doing laps? Are you getting lots of cysts? Or were many of them when you were trying for your girls? Because endo LOVES the scar tissue that is created every time anybody goes in there; although short term it might give you some relief, long term it's just storing up more problems...

I've had 20 years of this horrible disease now. I have to 'control' my pain with pethidine because it's the only thing that touches it, along with 6 months sessions of Zoladex every so often but because I am nearing natural menopause now the gaps between the sessions are getting longer. But unless it is absolutely unavoidable, for example, if I develop a huge cyst, my gynae and I are staying well clear of any more surgery

See if you can be referred back to your gynae and make a new plan. There are so many other things they can try apart from surgery, you shouldn't have to put up with what you're going through now

Lots of love xxx

Evexxxx profile image
Evexxxx

Hi Chrissie - no i have not had these injections - to be honest as I have suffered anxiety before I was afraid the side affects would cause me havoc and id have to weight 6 months to get it out of my system!!

Laura2705 profile image
Laura2705

hi chrissie thank you so much 4 ur reply... i keep having the laps done nearly every 8month- a year to remove the endo that has grown and given me so much pain..i only had my last op in may with a new gyne which i asked to be referred to at james cook hosp middlesborough uk..he was very good and had very high suspicions that the endo was in the wall of my womb? only way to remove is prob/obv take my womb? meaning hyst? ive already had too much zoladex..well the safe recommended amount anyway and this has resulted in me having osteoporosis in my lower back and hips as it plays havoc with your bones...

so what am i to do? get a hyst & leave my ovary which still means hormone which makes endo grow? but no bleeding? and still hav pain? or hav hyst take ovary & be on HRT? which means hormone n endo grow again maybe? but grow where? or try & live with it on more meds the rest ov my life?? also pretty sure starting with fibromyalgia? just so tired of this all...

thanx for all your support ladies... and im at my gyne tomorrow so need to decide what im going to do.... xxx

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