Zoladex

[ellen1965]

hi all

my daughter kayleigh is due to stary zoladex she is 26yrs old and she has not had any kids yet we have sean some of the coments and we are relly worried about it to a point kayleigh do's not want to start the treatment x

[Amb43]

Hi, while there are plenty of wonderful women on here that can talk you through their experiences with Zoladex, I would suggest that you both go and speak to your Doctor about your concerns, or even write a letter to your Gynae Consultant, so you can be given all the facts required to make an informed decision about her treatment. Good luck, and she is lucky to have your support. My mum is my rock and an angel, I don't know where I would be without her. I am 44 but she is still my best friend. xxx

[Lillil]

Hello,

I only got diagnosed with endo in Jan, although it's mild, the pain was severe. Ive been off work 4&1/2 months now and it was ruining my life. I am now on zoladex and have had 2 injections.

I think it really depends on personal circumstances before you start treatment.

I havent had children either, but would like to in the next couple of years if I am lucky enough. Also some of the other hormone pills are not suitable for me due to family past medical history.

Thats why I decided to go ahead with treatment. I couldn't continue to live my life the way I was and I wanted to protect endo growth for a little longer before im ready to try for a family.

I did ALOT of research and I think thats important as it is a serious drug that causes lots of side effects, some lasting and it does have a huge impact on your body.

You need to have a good support network around you as things get a lot worse before they get better.

I reccommend looking up the guidlines by the manufacturers for the drug.

It is a big needle, but only stings for about 20 seconds and wasn't as bad as people made out to me.

The first few hours-2 days i just felt strange! Everything sped up, i was shaky and hungry, exhausted and had a few crampy pains. The day after my first injection my tummy was quite painful around the site eeally pinching and I couldnt bend. After the second one it was fine. You have to have it a different side of your abdomen each time.

Make the gp do a pregnancy test before each injection as it is not a contraceptive and can cause severe foetal damage and miscarriage. You cannot be on any pther contraceptives at the same time so a condom or cap must be used. For most women their periods return within two months of last injection, others it takes 7 and rarely they never return causing infertility. Thats what scared me the most. My gynae said women with other conditions as well as endo such as polyncystic ovaries are more at risk. Youre not reccomended to get pregnant for 3 months after treatment and must use precautions during this time and they say to have a period before trying, so timing on trying may effect your daughters decision.

Lots of ladies said the first week was the worst. For me it was second and third. Ive collapsed once with the pain. The drug initially causes a tumour flare effect which causes your pituatry gland to work over time before it goes into shut down. I have had severe hot flushes that nearly make me faint severe nausea and migraines. I initially put on weight but am now starting to loose it, though that is likely due to the endo diet im on.

You can be on hrt at same time as zoladex, but again because of my history Im yet to start it. My side effects, touch wood, havent been as bad after the second injection and it has started to give me some pain relief already, my gynae said normally you dont get any relief until end of second month. Ive got more energy than ive had in months and im starting to feel like me again.

This injection doesnt fix endo, you cant have it longer than six months due to risk of loss of bone density and women who have had it for longer soon regret it.

Lots of women dont go back for the second injections and i dont blame them its horrible. Ive had joint pain, clicky bones, mood swings...but i couldnt carry on how i was, so for me it was right. I think if you prepRe yourself it will at first be horrific you can get through it.

Im glad ive had them, despite the pain and tears and knowing its a short term thing. Im hoping it gives me time to give me a break from all the pain and get my life back on track. Get the energy to be ready to fight again when its all worn off.

People will try and sway you, I nearly didnt go through with it and all my family begged me not to have it, but they were t the ones rocking in agony in the middle of the night. Falling asleep non stop and watching their life fade away.

Wish your daughter all the best. With a supportive mum she will get through itxxx

[Impatient]

It's a huge decision not only for the patients themselves but also for the family that will have to put up with the patient while they go through this.

And if your daughter, having read all she can, decides it is not for her right now, then don't push her in to having it. It's still an option to possibly try at a later date.

It doesn't cure endo, the only benefit is pain relief from endo pain for some ladies, meanwhile it can cause other pains which are just as uncomfy to cope with.

The list of side effects is long and seriously impacting on day to day living for some. To the point where quite a few cannot work or get through college or university or look after their families while on these drug courses. So it has to be something that she and you have the time and resources at home to cope with if needed.

They are VERY powerful drug treatments, which for all of that, don't cure the disease. She will still be back at square one when the drugs implants run out and her ovaries kick in to working again. It's only a really small number of ladies that don't get their ovaries working again, so as far as her future fertility is concerned that risk is very small indeed.

If she can manage the endo pains by other methods like pain killers, birthcontrol drugs back to back to stop her periods happening so often, or mirena coil which takes about 5 months to get working and hopefull stops her periods for up to 5 years, then by and large these are much better to try out first.

The best endo specialists don't recommend the zoladex family of drugs for treating endo pain, they recommend surgical excision of endo wherever that is possible. And they know what they're talking about.

Far too many gynaecologists are not experts in endo, they are fertility specialists and they are taught or assume that GnRH drugs are some kind of panacea when they are not.

6 months of the drugs in a life time is the maximum recommended treatment for any woman with endo. If you daughter doesn't have it now, she still has the option to try it later on perhaps after she has tried to have a family of her own.

If she does have it now, then what happens after it's finished? Her endo will be just as it is now, and she'll have to find other ways to cope with the pains anyway. She's still young at 26 and potentially has another 30 years of endo ahead of her and possibly even longer, if the real menopause doesn't reduce her symptoms significantly.

There's no reason or urgency to have the GnRH drugs now. They are just a stop gap (with side effects). Who knows what developments are awaiting round the corner for her to try in the years ahead either.

I know I do harp on about these drugs sometimes, but there is good reason for that. They can be for many women, a really tough experience to get through, and any decision to start the treatment should only ever be taken after careful and due consideration, doing homework and making sure not only that a patient is prepared for the worst of what it can do, but also that their home/work set up is such that she has the support there that she might need while going through the treatment.

Sounds like she has a super caring mum...... and that's a great help to have.

[Lillil in reply to Impatient]

Its good you do say Impatient, it's so important people know the truthx

[ellen1965]

thank you all for your comments i will show kayleigh your replys i had it and ended up with a hystorectomy at the age of 28 and been on HRT. i manged with pain killers and danazol untill got to much for me but kayleigh has just been confrimed and not had any other treatment offerd her.

I think i am more angry at our old doctors as my gynae said if she started to have problems then get her checked out it took 7 years to get some one to look into it x

[Sarah1979]

Ellen definitely push for a laparoscopy first as they may be able remove the endo. I wasn't given this option and spent 9 months on Zoladex which helped somewhat but not completely. It's only when I pushed for a laparoscopy that they found I had severe endo with adhesions. They have removed everything they can see and even though I only had my surgery yesterday I feel so much better already.

Do lots of research and don't be afraid of telling the consultants what you want

Good luck

[ellen1965]

Hi Every one sorry not been on here for a long while to say the lest we have had the year from hell.

Kayleigh finished for treatment at the beginning of November 2013 in December we had to pull her wedding forward as her father in-law to be was told he had only a few months to live so we for got all about Kay's treatment in February 2014 she had to go for a scan to check that things had gone band normal well what a shock we got on the screen was a heart beat and baby Alfie is due in four weeks os it just go's to show that are some happy endings x