does anyone have advice about ZOLADEX injections please

[holyhead77]

after a emergency c-section in 1998 I was left wiyh terrible scarring and infertile.the pain has progressed so much It has taken over my life also I was left infertile

[kellykeloggs]

Ditto!!! It's like you have written my story! Along with the pain it's so hard when people don't understand how it makes you feel!

[holyhead77]

Absoluetly,I am so glad I have found this web site,for years I have felt like i am overexagerating also many a time i have thought that i am loseing my mind,every day something inside me takes me bk to the labour room before I was taken to theatre.now I am gona be given ZOLADEX injections which I am scared about.

[kellykeloggs]

I know it's so scary! I'm on Prostrap just had my 2nd injection! Thank goodness for this site!

[Abbs]

Am not trying to scare you am just being real zoladex screw up my life and am still fighting a war to get my life together. First when I was on it I had all the side effects including suicide thoughts, zoladex left me with no period in 3 years and 3 months(cos am counting) am left with premature ovarian failure and ESTROGEN deficiency. To sum it up pls don't jump on zoladex until you know what you are up against. Did I talk about bone pains too?

[lucy_ in reply to Abbs]

Holy shit I can't believe I've found someone with practically my exact story! .. I have endometreosis and i had the laparoscopy to remove it and have a mirena inserted to 'prevent it growing back as fast' and I've been in hospital around 8 times since, including for my suicide when I was found. My life has been ruined and since the Zoladex that was supposed to last 3 months put me (at aged 19) into complete menopause and I had all the side effects and still do occasionally a year later. Also haven't had a period since and suffer with chronic pain on a daily basis which has completely ruined my life that once consisted of 8am-10pm training or studying sports. I advise everyone to stay FAR AWAY from any ZOLADEX treatment! I suffer with chronic fatigue, long periods of no apetite and nausea and experience chronic abdominal pain throughout my daily basis with no known cause or cure despite many hospital visits, medications, and procedures. I'm about to try out a naturopath treatment as I am very close to giving up on western medicine!

[Abbs in reply to lucy_]

Hi

I decided to take my life back from Endometrosis I did extensive research on vitamins that can help and exactly 5 years after my first dose my period returned by itself when I already gave up and am PROUD TO SAY AM A MOTHER OF A 8 WEEKS SON WHICH I CONCEIVED NATURALLY SO FUCK ENDOMETROSIS I WON THIS DEADLY DISEASE.

[Impatient]

Zoladex and all the GnRH drugs are very powerful drugs with many side effects which can be long lasting way after the drug has stopped. Just one implant can do you more harm than good, and while yes they will temporarily stop endo, and endo pains, they are not pain killers, they will not resolve adhesion pains, or other difficulties caused by having extensive endo.

Some ladies do find a great deal of pain relief while on the drugs, but pain is not the only aspect of the disease.

You will have side effects, not a case you might have but you definitely will have.

Some ladies manage to get HRT prescribed too, which should counteract some of the side effects but not all of them.

After all stopping the ovaries working is a side effect, and so HRT will not conteract every side effect.

The drugs over load the pituitary gland in the brain and cause it to shut down.

That is a significant part of your brain shutting down hormone production.

In turn it does the same to your sex organs (which is why the drug is used on prostate cancer and breast cancer patients).

Side effects can hit you one at a time or several at the same time 24 hours a day.

Once the drug is inside you, that's it for minimum 1 month (even if your stop at just one) and then not safe to try and conceive till all of that implant is well out of your body as it does have high risk for pregnancy problems. Four months after the last implant was due to be put in if you had had it, is when you should be safe to stop using condoms, but before that they are essential as the drug is not a contraceptive either. and birth control pills do not work with the GnRH drugs. Must use condom or cap or both.

Side effects are bone density loss, memory loss/cognitive impairment, which may or may not resolve after the drug stops. Mood swings (thought your teenage years were hard- it's nothing to the moods on the GnRH drugs) Depression, heart problems palpitations, high blood pressure, bone and muscle pains, hair loss (followed by excess hair growth afterwards) Skin tingles, hot flashes and cold chills, upset tummy, headaches, blurred vision, nausea, dislikes noise and bright lights, very short temper with everyone else, exhaustion from not having a good sleep for months on end, and on and on.

So many significant side effects that it can be a very unpleasant experience and all for what? A short fix of pain relief from endo in some women.

6 months is the maximum you should be on these drugs in a life time, according to the manufacturers of these drugs, and if you opt to stay on them for longer, it is at your own risk as it would be against the manufacturers guidelines.

To be honest, I really do think these drugs are over prescribed to endo patients.

For all the good they do (not much) they do a lot of damage too.

and not everyone fully recovers from these drugs once they stop .

You do not have control of anything while on these drugs. It's not like tablets where a severe reaction happens and you can stop taking them. it's deep inside you for at least 4 weeks at a time come hell or high water.

With pain killers, you can take them as and when you need to take them, and vary the dose and vary the type of pain killer you take. You are in control of the dosage.

No one should be on any GnRH drugs without firstly doing all their homework.

Read up everything you can find, from the official patient advice leaflet to side effects to other patients experiences on the cancer and endo forums.

Also check out the Lupronvictims website in America for patients left with long term adverse side effects.

Prostap is Lupron.

Zoladex is Goserelin

Decapeptil is Triptorelin

check out both names when on google.

I don't have any problem with ladies wanting to take these drugs so long as they make an informed decision to do so, knowing all the risks and possible consequences.

But never be coerced in to taking them of feel forced in to taking them if you have done your homework and decided it's not for you.

It is your choice as a patient as to whether you do take these drugs or not.

As Mr MJW Cooper (an eminent endo surgeon) says in his article about recto vag endo

" Treatment approaches to advanced endometriosis in recent times have been most illogical. No amount of progestogen and no degree of oestrogen suppression will permanently eradicate the endometrium, so how could we expect such hormonal approaches to eradicate endometriosis. Temporary suppression is the only outcome, and while symptomatic improvement may occur, recurrence of symptoms following cessation of treatment is almost invariable.

No effect on the associated fibrosis occurs, and I know of no drug of any class that will eradicate scar. This probably accounts for the fact that a percentage of women with deep fibrotic endometriosis fail to experience even temporary symptom relief with hormonal suppressive therapies."

Personally speaking I had zoladex 4 months, experienced just about every single side effects and often many at the same time, my periods did return as soon as they could after the drug stopped, but my loss of short term memory did not recover and has not recovered and it's been now 16 months since my last implant. I know that for the 4 months i was on teh drug and the 4 periods I missed, I could have coped with those by using pain killers as I had done for decades before, so I have paid a heavy price for being on that drug.

As did Abbs, though my lasting legacy is quite different to hers. Neither result is to be recommended.

[alibalibee]

I've been on Zoladex, my first round was 6 months of injections. I, like anyone else, had side effects. Hot flushes were a nightmare, and the weight gain was upsetting, but i realise now this one was worth it! I didn't think that the injections were working as I was still having periods, even though I was on Zoladex as well as Microgynon. As soon as I stopped the first six months, the pain increased, and got worse. So the Zoladex had lessened my pain a little.

About two months later, I was at my wits end with the pain, my hormones were all over the place, I couldn't cope. They decided to give me another 6 months of Zoladex and that would be my limit then. As well as this I was to continue microgynon back to back (have now been for 10 months without a break). However, this second lot of injections did nothing for me. I bled throughout, I was in excruciating pain. It clearly hadn't worked.

Both times after coming off this, my hormones went haywire, didn't matter what I did. Extreme PMT! Also, after coming off it, i would have very bad hunger, even though I was eating normally, i would get hunger pains if i didn't snack every half hour or so. It was mental. I could eat a huge plateful, and still be hungry. My partner couldn't understand at first. and when I explained to the dr, they just laughed.

Now its been four month since my last injection. I'm no better. I feel very weak, i have no strength in my legs, its beginning in my arms. I have severe pain still, I've lost all lower strength in my abdomen, my chances of fertility are greatly decreased and I have memory loss. Think very carefully before going on this as to whether it will make a significant difference.