Period pains restarted after 4 zoladex in... - Endometriosis UK

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Period pains restarted after 4 zoladex injections - will a hysterectomy work?

Sarah1979 profile image
6 Replies

I've just had my 4th Zoladex injection. Over the past few weeks I've been getting really bad period pains again and down my legs in to my knees. My lower back pain has never really gone but I am now getting shooting pains up my spine which take my breath away.

Initially Zoladex was a god send. My pain almost disappeared completely but now it seems to be creeping back to where it was before.

My gynocologist has never confirmed that I have endometrosis but has suggested that that's what she thinks I am suffering with.

I am due to have a total hysterectomy next year and I am really worried that if the Zoladex injections aren't working any more that neither will the hysterectomy.

Has anyone else experienced this?

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Sarah1979 profile image
Sarah1979
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6 Replies
jojo777 profile image
jojo777

Hey

I don't understand why exactly you're going to have hysterectomy without any diagnosis.

Even if you had endo then in depends on where the endo is. If endo is stuck on organs and locations that won't be removed then you will continue suffering.

You need a laparoscopy first to know what's going on before you remove everything down there x

tashastacy profile image
tashastacy

I've been on zoladex for roughly 3 years and as you are experiencing my pain started creeping back in. Mine didn't come back as quick though. I was referred to the pain clinic and I enquirer about a hysterectomy but was told this would not guarantee the pain going away due to any scar tissue etc. I would highly recommend you asking a lot more questions of your consultant. Hope that helps. Also I take HRT which really helped with my lower back pain.

JulesUK profile image
JulesUK

I agree, you need to find out what condition you have for certain before you can be treated. No doctor would recommend having your leg in plaster without knowing its broken and Endo can be just as debilitating!! I've said this many times on here unfortunately you do have to push things with this condition and make a fuss if you have to. Don't be afraid to do it, doctors just move on to the next patient as it makes their life easier but its your body and health, you shouldn't have to but most times you have to take control. Either tell them what you want or see someone else.

If you're planning on a hysterectomy anyway that's one thing but do not be talked into it by the doctors if you're not. On a personal note my symptoms retuned at one stage when I was on zoladex, my gynae said it couldn't be Endo (heard that before!) fortunately I persevered and the pain just went again. Make sure you are having the injections no more than 4 weeks apart (not 31 days like a month) I started to make my appointments a day or so before the 4 weeks was up the doc didn't say anything to make sure it was topped up in my system as I'm sure they cannot time it perfectly to work a month exactly and don't even think about having a three monthly one. I have been on it once for six months and once for two years with HRT. Which really helped my pain (but my endo had been diagnosed) I had two years without but the Endo did come back I have literally just (yesterday) had my fourth lap this time with a mirena coil (fingers crossed) so you do have options,

Hope you get the answers you need, take care x

Lizziecotterill profile image
Lizziecotterill

You cannot know if you have endo without a lap diagnosis, only then can your consultant treat you for endo.

Ive have endo for at least 7yrs back & forth to gp, consultant gynae; try these meds, try 3 coils, try an implant, youve got large cysts size oof tennis balls we must get them off but try these pills incase they shrink & now oh you have cancerous cells on your cervix lets burn them off; anything but treat the actual problem!

I finally had a diagnosis of severe endo in march 2012.

Straight into zoledex 6 months from may with hrt & northisterone.

What an awful drug!! First month i had 2 wks free bleeding oh yes brilliant!!! But side effects awful then for 3dys i was glued to toilet and blood everywhere.

2,3,4,5 months nothing at all. Blood everywhere nearly everyday a clot.

Pain.excoriating pain. In stomach, legs, bottem,( shooting pains), hips, back!

Well everywhere!

Sex is a joke!

By month 4, i asked to see consultant again. She said stick with it.

Stuck with it now on dose 6; for, complete with hideous bruises.

Still taking cocodomol, menafemic acid & now cetrezette.

Nothings changed, got app to see consultant dec.

I cant see any changes.

Zoledex didnt work for me. Ive had 3 miscarriages & one beautiful little boy age 9.

Really given up hope of anymore children.

Sarah1979 profile image
Sarah1979

Thanks for all of your replies. I had an endometrial ablation and laparoscopy (vaginally) which didn't show any abnormalities. The ablation didn't work and I continued to bleed and have severe pain. On this basis my consultant has said she suspected endo and wanted me to try zoladex in perpetration for a hysterectomy. Since then I have been doing my own research and have discovered that you can have some endo removed with lazor. I spoke to my gp today when I went for my injection and she's told me to make another appointment with my consultant.

I'm so fed up with being in pain. It's like there's no light at the end if the tunnel.

skybluepink profile image
skybluepink

How are you now? Just had endometrium 9mm found no bleeding or pain .What did have when younger was extremely severe dysmennhorea pain very incapacitating which was controlled with Pill & later HRT.

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