Endometriosis UK
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Zoladex worry

Hi this is my first post.. I was diagnosed with endo a year ago following a lap.. I had it removed and the mirena put in at the same time.. I ended up having it removed after 5 months as it gave me constant pain, inflammation and had to have 3 courses of antibiotics. I've tried a couple of different contraceptive pills and am now currently taking micronor. My endometriosis symptoms are still present and exactly the same as before I had my lap. My gynaecologist has given me the choice of starting zoladex or having another lap.. she suggests I try the zoladex first.. I really worried about the side effects as I suffer with anxiety and depression and wondering what to do for the best.. can anyone please give me some advise on zoladex please.. thank you🙂

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I am in week 2 of zoladex. I am struggling. My depression has kicked in badly and i drove my brand new car i to my gate this morning. Headache, head fog, nausea, pins and needles. I was told it helps people a lot after month three but i am feeling horrific and frankly losing the plot. Worse than mirena at same stage, which was non stop heavy bleeding, and dyspareunia. But like any of these hormone treatment side effects vary dramatically and need to be traded off against symptoms. Feels like to me each thing i am given is worse than the last.

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Hi, thanks for replying.. I'm really sorry to hear you're feeling so bad.. Did they say you can take anything to help with the side effects?! Have you had any surgery prior to starting zoladex? I guess also as you say the side effects can vary from person to person..I've been told to have a 6 month course.. but then do the endo symptoms come straight back once injections stop?! I'm really in 2 minds as to start this?!

Are you going to carry on and push through with the horrid side effects or stop the treatment? It's so hard to know what to do for best isn't it.. hope you start to better soon.

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I was unable to make it to work for the nausea and side effects today so i've sent an email to my surgeon to see what he advises and hoping for a gp callback. I had a lap for diagnosis and small ovary cyst removal in December but have a large difficult recto vaginal nodule attaching my cervix to my bowel. The zoladex was to buy 3 months time to decide on surgical options.

A friend of mine had zoladex and said it helped her fatigue greatly though her issue was hormone imbalance so i had had high hopes. But i seem to be one of those people who physiologically tend to be sensitive to drugs.

It is only ever temporary relief my friend said the benefits she had gradually wore off over the six months.

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It's just so difficult to know what to do for the best! If it takes away the endo symptoms it leaves you with other horrid problems!! What were you doing to manage the pain before starting the zoladex?! My friend has had a few courses of it and said it was the best thing that happened to her! She had a few side effects but said it was the only thing that actually helped her.. what has your consultant said your opinions are after zoladex?! I have decided not to go ahead with it and will have another lap instead..my gynaecologist specialises in endo so Im hoping I'm in the right hands! Hope you have a better day tomorrow! Xx

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I am so sorry you are having such a hard time Starry, but unfortunately I do understand it. I have never suffered with depression but on my latest course of Zolodex (third time) I had to go on antidepressants as I could not cope. It makes me so angry that our options are so limited! I hope the Doctors can find you a better option. Please pm me if you need to talk. xx

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Hi Chele1 I would advise going for a lap but only if it with a bsge centre as if it is only gynaecologist they may only be patching you up rather than actually helping. I had three laps like this before I decided I had enough and got refereed to a bsge centre. I hope you get some pain relief. xx

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Hi JenH.. thank you for your advice! I don't think I'm going to go ahead with the zoladex.. the other option was for me to have a hysterectomy but my consultant wanted me to try zoladex first.. how do I get referred to a bsge centre? Is this through my gynaecologist? She does specialise in endo? Xx

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Look online and find a bsge centre in your area then go to your gp and ask for a referral to them. If your next step is hysterectomy hun I would really urge you to get a second opinion from a bsge centre first. I am not saying your gynaecologist is wrong I just think something like this is major and you want to be absolutely sure you are making the wright derision.

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Ahh ok thank you..xx

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I would echo Jen's comments. My first general gynaes misdiagnosed me and wanted to do a hysterectomy. Having seen a BSGE surgeon i now have 2 different surgery options neither a TAH though one is ovary removal and the surgeon is taking my individual needs into account . I am getting far better care and my surgery will be excision and not ablation.

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The bsge link

bsge.org.uk/centre/

Funnily enough one of the reasons I agreed to try it was to know if tried everything before taking the nuclear surgical option so to speak

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Not sure if it's of use, but i was told by my bsge surgeon that zoladex is a test to see if my endo will respond to partial hysterectomy is ovary removal. Theory being if it's not effective zoladex is reversible the hysterectomy is not. Not all endo types respond to hysterectomy. Mine is likely not to frankly as i have non standard symptoms. That leaves me with options of do nothing, or excision surgery at risk of bowel resection.

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Hi.

Your situ sounds complicated. Being a woman is so shit sometimes!! I have just decided to stop zoladex. It was amazing at stopping all pain but i cannot tolerate the scary side effects. Especially what it has done to my mental health, which was already in trouble. I have a personality disorder. Apparently they shouldve take that in consideration...er, yeah!! So, i feel stuck. Zoladex was a test like in your situ. It has obv worked for pain, but if i cant cope with the drug then should that mean surgery will be better becausecit isnt all chemicals etc? Xx

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Aww hugs XXX I really feel for you. I had severe mental effects. Depression , memory loss, difficulty structuring sentences on top of the usual ones.

I stopped too after doubling the tibilone in the second month didn't ease things.

Look on full hysterectomy sites and forums and here to understand which side effects you will get with that as a lot are the exactly same as zoladex because both will stop the same hormones. But hysterectomy is irreversible surgery so take your time to be sure of your decision.

Fwiw I am now 9 weeks post excision. I had bowel shave, extensive vaginal repair from the 3.2cm nodule plus endo removal on ovary peritoneum, uterosacral ligs, bladder. Plus adhesion removal. I escaped resection.

But no hysterectomy or oopherectomy.

It has been very hard going but I have turned the corner this past few days. My head is clearer and bowel and bladder improved too.

I would definitely seek a second opinion by a BSGE accredited Endo specialist Surgeon as they have more advanced excision skills before finalising the decision. Hysterectomy does not always stop pain and they may be able to do more for you than a general gynae.

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