Started 3.6mg Zoladex yesterday, what am I in for? Is it really that bad?

[Ash_1986]

I'm located in Australia, we don't have a forum like this one, hence why I am here!

I've had endo since I was 17, 4 laparoscopies, I'm now 27, have been treated with primulot, and syneral, and have now agreed to Zoladex for 6 months, had my first jab yesterday. I feel normal so far. But am suffering really bad anxiety after reading everyone's testimonies, to the point I want it removed.

Am I overreacting? Is it really that bad?

I have an active 4 year old that rides motocross and my fiancé is a car enthusiast so we spend a lot of time travelling to events and camping there ect, I'm also studying a uni degree so I'm starting to wonder how the zoladex is going to impact on my active lifestyle?

Can anyone put my mind at ease?

I also am really worried about decreased bone density, hot flushes, weight gain all those nasties, could you share your side affects with me please?

[Cooka]

Hello fellow Australian! I use this site too because I can't find a good one in Oz like this. Well I was put on Zoladex too last year. You can read all my gory accounts and freak outs in the history of my posts I think if you click on my user name? But yes, interestingly I suffered huge anxiety and depression with it and all the physical side effects. We are all different out there, some can handle it with just minor side effects, but some don't.I really do think the docs play it down when discussing the side effects. I would like to see my male gyno try it!

Your specialist will probably offer you ad-back hrt after the first month to help combat the hot flushes and the moods/anxiety if you can't cope. If they don't offer it ask for it. I wouldn't have been able to do the zoladex journey without. It made a MAJOR difference. I can't stress that enough.

But please don't freak out about it. I had to deal with a break up, losing my home and moving in with my parents (at 40!) when I started Zoladex so I had to deal with a lot of personal grievances and loss which probably was 50% of my moods. If you are in a loving supportive family then you might be just fine (: xx

[michelle2013]

Hi I wanted to share my zoladex experience with you. From what I have read it affects everyone differently. It would interest me if a pole was done taking into account age etc and experiences. I am 44 and have had two courses of zoladex 3 x 1 month zoladex injections about 4 years ago with hrt at that time my periods were very very heavy and painful and I remember it being 4 months of heaven no pain no period and no hot flushes or side effects. I can't tell you how long it helps for as I had an ablation. Last year I found myself back at gynae periods been very light since ablation but pain has got increasingly worse and became to much so gynae recommended zoladex 3 x 1 month while awaiting op. I agreed to try without hrt and go on hrt if side effects too much. The first month was the worst. Hot flushes started after about 4 days which I could cope with. I also suffered pain and mood swings first month but I suffered these usually but I think they were worse. I expected a miracle cure and didn't get it so wasn't going to have second jab my Dr persuaded me and said it would get better. I went on to have 4 injections in total pain went after having second. hot flushes continued but never major problem and if take hrt you won't get these side effects. Main side effect I suffered was constipation which may or may not have been zoladex as I made big changes to my diet to lose weight before op. Had op now so can't tell you how long before symptoms return. Hope this helps you xx

[Chrissie66]

Hi Ash

I had my second Zoladex jab of a 6 month course yesterday. I can't remember exactly how many courses I've had over the years, but it must be heading towards double figures now.

The thing to remember is that people who float through their Zoladex experience don't feel the need to take to the internet to report it. Conversely, the people who have a bad time won't hold back. So what you read is already skewed towards the bad.

Everybody reacts differently. I'm not going to pretend that it's the best thing to go through - the worst side effects for me are the hot flushes and mood swings - but that being said, if it stops the horrendous endo pain, it's worth it. The fact that I'm back on it again is proof that for me it's really not that bad.

It's 6 months out of your life. Warn everybody around you to expect the worst!! and then you and they might be pleasantly surprised when it turns out not to be as bad as you are fearing

Good luck

C xxx

[Scooteeder]

Hi Ash,

First of all, I am very sorry to hear that there is no forum in Oz like this. Women with Endo NEED support, in a variety of forms. However, glad that you have been able to use this forum instead. Maybe women in Oz could use it as a "template", and set up their own forum, too?

I can empathize with much of what you say. I, too, have Endo. Horrid disease, isn't it? Most of us just want to get on with our lives. Like you, we have partners, families, homes, careers, educations... ALL the things that other people take for granted. WE want to make our lives work; we want to live them to the full. Sometimes, it can feel as though our Endo gets in the way...

Here's my experience, for what it's worth. I can only speak from a personal perspective - everyone is different - you are in no way obliged to act on my advice!

I am 43, and was diagnosed in 2011 with Endo after YEARS of suffering. I'd had period problems as a teenager, and had taken the Pill then (just masking symptoms). I had NEVER been told what caused the issues. My periods settled for a short while in my 20s, but then all the problems returned with a vengeance @ 2002 (I was 31 then). I doubt you need me to describe my symptoms in huge detail - suffice it to say they included painful, irregular and heavy periods... as well as bloating, upset stomach, cramps, back pain and pelvic pain. I was not referred to Gynae until 2006, by which time I was unable to conceive. MY Gynae was utterly INCOMPETENT - first he misdiagnosed me, and then he failed to treat me. He even wrote in my records that I could not conceive because of "anxiety". I ask you! Anxiety! The only thing making me anxious, ironically, was HIM!!

I demanded a second opinion in 2011, had a Lap, and was diagnosed with Endo. I've now had 2 further laps, and am awaiting my fourth (on 03/03/2014). I have also tried the Pill, and the Mirena coil device, as attempts to control my Endo. These two things I have found utterly useless. It is my belief that they only hide symptoms, not get rid of them. Once you stop taking the Pill, or whatever, the symptoms (i.e. the Endo) become active again. Also, the side effects are downright nasty. I suffered bloating, water retention, acne and mood swings.

I have been advised MANY times that I need to start on Hormone Treatment. Zoladex has been mentioned, as well as Prostrap. To date, I have completely refused. I have done my research, on the Internet, and believe that the risks and side effects of these drugs outweigh the benefits of taking them. Here, I outline why:

1. I am only 43, therefore not yet naturally Menopausal. To take such medication would mean fooling my body into a premature Menopause. Thus, I would end up being and feeling Menopausal for FAR longer than I would expect from natural Menopause only.

2. I have Endo, with all its unpleasant symptoms. However, if I took Hormone Treatment, I would be taking a treatment that has its own SIDE EFFECTS. I would therefore NOT be free of problems. I would simply be SWAPPING the problems I have now, for some new ones!

3. After experiencing side effects whilst using the Pill and the Mirena, I do not like the idea of using anything else with side effects. I do not like the idea of hot flushes, a dry vagina, thinning hair, brittle bones, acne, water retention, bloating and weight gain. Even if I might not actually experience them whilst on the treatment, I do not wish to take the risk.

4. Increased risk of Osteoporosis and certain types of Cancer is really offputting.

Now, PLEASE REMEMBER that this is just MY OPINION, and that I may be incorrect. Also, what works for me may not for you, and vice-versa. However, I would always advise CHECKING EVERYTHING OUT THOROUGHLY. Check out ALL your options. Surgery may be a better idea. Or homeopathy. Or pain control... Who am I to say? There are MANY things out there to try. YOU have to discover what works for YOU.

However, if you are determined to go ahead with the Zoladex, you really ought to discuss your concerns with your Doctor. If only for peace of mind. You need to be aware that some women on Zoladex can be given HRT in order to minimize the risks of the Zoladex causing osteoporosis, and to limit some of the side effects. It cannot be given permanently, but you can use it on-off. Have you been offered HRT? Maybe it is something worth discussing with your Doctor?

In terms of the other concerns you have - i.e. the treatmment having an impact on your life, and University study - I have a few ideas. I am also a student, currently studying Postgraduate Psychology. I therefore have experience of trying to cope with Endo whilst studying. It's not always easy, I admit, but much of this depends on how determined and how organised YOU are. Whether you think about possible solutions in advance.

Many Universities have Student Support Departments (or similar) where students with disabilities and long term health problems can seek advice and assistance. I would suggest that you arrange a meeting with somebody from such a department, to outline your concerns. It is important to remember that you have rights; that it may count as disability discrimination were somebody to penalize you by providing no assistance to help you study, whilst coping with your Endo. Most good Universities are aware of this. Most also apply the common sense rule that, since students pay tuition fees, it is in the best interests of the University to MAXIMIZE the number of students completing courses. Thus, it is prudent for them to assist students who have difficulties, as opposed to having them quit the course!

Put simply, no matter what treatment you decide to have to manage your Endo, there is no way this treatment should be permitted to have a negative impact on your life. At the end of the day, the aim of any treatment is to MAXIMIZE quality of life, not further impair it. This is ALWAYS a good thing to remember when you are discussing treatment options with your Doctor. Doctors only think of MEDICAL things, they are not always aware of the SOCIAL impact. YOU are best placed to know what fits in with your lifestyle. Therefore, you should weigh things like this up, too, when considering a particular treatment. DO NOT ever allow a Doctor to pressurize you into accepting a certain treatment - the choice is yours, and it should be a FULLY INFORMED CHOICE.

Now, I am conscious that I have written a fair bit, and may be boring you... so I'll end here. However, I'll send a further post with some extra information in it, about other ways of coping with Endo. Please do remember that they are only MY advice and opinion, so you do not have to go ahead with any of them. CHECK THINGS OUT FOR YOURSELF and MAKE YOUR OWN DECISIONS. This keeps YOU firmly in charge!

Good luck with everything,

Elaine Ellis.

[Scooteeder]

Hello again,

Here's the second reply I promised you... maybe it will contain something useful to you, maybe not...

Anyway, please, please do NOT ever feel like you are alone in what you experience. That is the sad thing about chronic and invisible illnesses - they make people feel isolated. It is so easy to feel caught up in what is happening to you, and to let the rest of the world slip by. I think that's the BIG problem with chronic/invisible illness like Endo - it sort of "cuts you off". You stop being who you used to be, and become somebody who struggles every day to cope with the illness. It's like "treading water". People see YOU on the surface, and you still look pretty much like you; but underneath the surface of your life, you are frantically working ever so hard just to be able to do the things you used to do with ease!

By the way... THAT'S how I see Endo. A CHRONIC & INVISIBLE ILLNESS. The person with it KNOWS it's ALWAYS there, but NOBODY else does! Still, I've learned that there ARE ways around things. The INTERNET can be your BEST FRIEND!

For what it's worth (and this is only my opinion, so you don't have to act on any advice if you don't wish to), might I make a few suggestions:

1. You NEED a good G.P. I cannot stress enough the importance of this! All I can suggest is that being "bossy" sometimes pays off. When you have to book an appointment, explain clearly that you want to see THE SAME G.P. because you have a LONG TERM illness, and you NEED consistency. Explain the nuisance it causes when each time you see someone new, you are "back at square one". If all else fails, threaten to complain (this should be a last measure, because it's far better to politely negotiate) as it MAY get the surgery to take notice! Otherwise, you could consider changing G.P. and looking for a surgery that only has one (or a limited number) of Doctors. When you attend appointments, plan what you wish to discuss. Take notes. Ask for copies of any medical letters, or entries to your medical records.

2. Asking to be referred to a Gynaecologist who knows a lot about Endo, or to an Endo Specialist, is a very good idea. Many Gynaecologists (and this is personal experience!) seem to be "jack of all trades, master of none"! They hardly seem to have heard of Endo, and appear to be out of their depth when dealing with it. After all the problems I had with my Gynaecologists, I did a search online to find the specialist centre I now attend. It was then a case of DEMANDING (and I mean DEMANDING) that my G.P. refer me. To make this sort of request/demand, it is a good idea to have an "action plan". Arrange an appointment with your G.P. and take notes with you, explaining how your Endo affects you, why you feel it is not well managed at present, and how you think you may benefit from being under the care of a specialist.

3. If you feel you are getting nowhere, you could always try going Private. Sometimes, Private Healthcare is better. You get seen quicker, and can often get treatment the Government run health service is reluctant to offer (as well as better treatment). Something to consider, if you have the money!

4. Get CLUED UP, and DON'T be afraid to show it. Here's my personal experience again! I have found that some Doctors can be VERY arrogant. They treat patients like they are stupid - like the Doctor is more intelligent, and always know best. "Playing God", I call it! Doctors like these are a waste of time. PATIENTS ARE NOT THERE TO MASSAGE A DOCTOR'S EGO! You need a good relationship with your Doctors; you need to feel that you can openly and honestly discuss things, and that you get told all the risks and treatment options. You need to have a Doctor who accepts that YOU know your own body best, so YOU may be able to tell them things that THEY were not aware of. Sadly, lots of Doctors seem to know little about Endo. So, it is a good idea for you to read up on it. Ask questions. Take notes. Some Doctors will even accept you bringing info about Endo for THEM! Know your rights, and know your stuff. And refuse to back down if you think a Doctor is wrong, or no good.

5. Keep a SYMPTOM DIARY. This can be VERY helpful, as it keeps track of a LOAD of information that otherwise you may forget. You can also take your symptom diary to appointments with you (which is useful, as you then have all your info to hand). Your symptom diary can record such things as when your periods are, and how bad or heavy they are (useful to help you spot any irregularities, or changes). Record other things, like daily pain levels, tiredness, as well as further symptoms such as bloating, nausea, etc. These should be your Endo symptoms - and by recording them in your diary, you can keep track of what they are, when they occur, when they are worst, and any changes or new symptoms. You also need to record other things in your diary - symptoms that are not clearly your Endo. So, if you get a nasty infection, write it in your diary. Again, this helps you to spot when such things are happening, and you may start to recognise patterns, if they exist. This could give you an even better clue as to whether it is your Endo that is making you infection prone. Keep a record of mood swings, too, to see if your periods cause them. Or if medication is causing them.

6. Try to keep yourself as healthy as possible, and keep up with the things in your life you wish to do. I KNOW this sounds easier than it actually is... however, the last thing you want is to feel that the Endo is in charge of you! By eating sensibly, trying to take exercise when you can, and keeping up a relatively "normal" (hate that word, what is "normal", after all?) life, YOU stay in control. You are giving yourself the best possible chance. There is information about a special "Endo Diet" online (it tends to look at removing processed foods). Gentle exercise like Pilates or Yoga, or just gentle walking, can help stretch out achy body areas - and just get you feeling a bit more "perked up" (exercise = natural endorphins). Don't overdo things - make sure you give yourself "me time". You know, just "chillin" and relaxing - a nice long bath, or a snuggle with your family or pets, or unwinding on the sofa with a movie - anything that makes YOU happy. SELFISH IS ALLOWED occasionally. I say this, because many people with long term illnesses seem to forget about time for themselves; they are so busy feeling ill, and feeling guilty for being ill, that they start to think that time spent on themselves is "selfish". It is NOT! "Time out" is REALLY important to "recharge your batteries"!

7. A support network is important. Try to get the help and understanding of family and friends. EMPLOYERS can be downright crass! Most are totally ignorant about Endo. The charity Endometriosis UK produce a booklet that you can download and give to your employers. Again, it is important to know your rights. Your employer COULD be guilty of discriminating against you, if you have a long term health condition but are being punished at work for this. Speak to your Union (if you are a member) about it. At University visit your Student Support department (or similar) to speak to a disability adviser about your health condition. Such services are available to students with disabilities and long term health problems, to help them find ways to manage their illness and complete their study. They can also notify your Tutors of any assistance you may need, and ensure it is put in place. Knowing you have this assistance can be a huge weight off your mind! Support groups can be useful too, if that's your kind of thing. Maybe you could look online for ones in your area?

8. Just a few other "odds and ends"... Peppermint tea, and Ginger tea, I've found good for bloating. Peppermint tea is a natural diuretic (helps with water retention; makes you pee!). Ginger aids digestion. Foods like ginger and garlic can boost the immune system. Spinach and broccoli, as well as pulses (beans/lentils/peas) can be good sources of extra iron if you are anaemic. Processed foods (junk food) and sugary drinks can be a nightmare; partly because they increase bloating, but also because, if you are "run down" they can feed the "bad" bacteria and other things in the gut, making you feel even more ill. Besides, they can cause weight gain, and with Endo this can be a problem in its own right, because many of the so-called "Endo treatments" (the Pill, the Mirena, Hormone Treatment) cause weight gain, too. Steam inhalations can be good for sinus and respiratory problems - try putting in a few drops of Tea Tree or Rosemary oil, as these have antiseptic and antifungal properties. St. John's Wort can be used to help with mood swings, as can certain Aromatherapies, and relaxing treatments such as massage or Acupuncture (which are also helpful to relieve pain).

Blimey! (You can tell I'm Northern, and British!!) - very sorry that this is such a LONG reply! Anyway, that's pretty much it. I truly hope that you find some relief from your symptoms. Do not give up. Remember, there are always people better off than you, and always people worse off. That's life! Just know that there are some people who struggle to cope with stuff that is NOTHING compared to Endo; so YOU are a pretty GOOD coper, really.

I shall stop here, as I'm probably in danger of seriously boring you! Wishing you all the best... and if you ever want to e-mail ([e-mail]), or keep regularly in touch, feel free.

Take care,

Elaine Ellis.

P.S. Just a few useful contacts:

1. endometriosis.org.au/ - an Australian Endometriosis charity.

2. Endometriosis UK (charity, provide LOTS of info on Endo, treatment, etc, including info for medical professionals, and employers) - endometriosis-uk.org . They also have a Helpline (look online for opening times) telephone [phone]. You could even download a handbook from their list of publications to take to work with you to help explain your Endo.

3. Endometriosis diet - endo-resolved.com/diet.html

4. Endometriosis Australia (similar info and advice to UK version) - endometriosisaustralia.org/ (they are also on Facebook).

5. australia.gov.au/people/people-with-disabilities (a whole website that gives advice and information to people with disabilities and long term health issues. You can find stuff on here about STUDENTS - if you scroll down the left hand side and click on students. It provides a list of organizations giving advice and assistance to disabled students and students with health problems).

HOPE some of this helps you. Best wishes and good luck!

(Hell! I AM bossy! I'm a Social Worker and Psychologist by training!) SORRY!!

[Lovelyk]

Hi I'm in America.. 31 been dealing with endometriosis since I was 12. Ive been on the shot lupron same as zoladex for 6 months twice in my lifetime. and my insurance wouldn't pay for it . So I paid out of pocket each shot and those heat flashes are no joke at all. But for a short time there was relief but I traded those endo pains for weight gain and heat flashes

[GenaG]

Hi. I have been on Zolley for 7 yrs now and have hrt patches and calcium tablet. Please dont be worried or panic, you will get horror stories with any medication. I agree the 1st month is the hardest ... you will have a bleed this month which may be heavier than normal but after that it will stop. You will experience hot flushes and possibly weight gain but I have had a really positive experience. My consultant is happy for me to stsy on it til im 50 -which is another 7 yrs, how ever I have decided to come off it now and have a break. I can not stress enough how it has helped me ..... I used to crawl on my bedroom floor for about 24hrs in pain and bleeding, well I couldnt get to my bathroom without it being down my leg and puddling . I think as a short time way of handling endo its fab... please message me anytime xxxx