Hey everybody.
I stopped having my zoladex injections in October after being on them for 1 year. Ever since I stopped I’ve been struggling to get a full nights sleep, I will wake up really early and can’t get back to sleep.
Has anybody else had this issue?
How much longer until a girl can get a decent nights sleep 😖😂
Might be worth talking to GP or consultant. Technically it’s only licensed for endo for six months, but can go on longer if you agree, but you’ll need a bone scan at some point.
Is there a reason for a year and coming off?
I can’t judge by sleep as I was waking up before the Zoladex and after 🙄
I know that it’s only licensed for 6 months and I was confused about that too. If I’m honest I think they were just palming me off because they don’t want to operate again at the moment and it was the easiest thing for them to do... I made the decision personally to come off of it as I had thought it had been a long time and was suffering with bad side effects and thought they outweighed the pro’s as it only helped slightly with my pain. The HRT made it all flare back up again 🤦🏼♀️
xx
Likely a wise option coming off it, might be worth asking GP for a bone scan. HRT should have provided protection though. There’s obviously a hormone imbalance somewhere. If you haven’t had a blood test, ask for one to include all hormones, iron, magnesium, vitamin D and B12. Vit D is to do with hormones. GP will possibly get a bit huffy, they hate checking hormones.
Is it just covid the reason for not operating? I know some areas are easing off ops again.
I thought so too. I don’t want to do more harm than good. I know the endo nurse specialist I am under said I will likely need a bone density scan at some point because of how long I had been on it. I am having blood tests but for another reason, maybe I will ask them to add those on.
Well, I’m not quite sure if I’m honest, I think it was a mix of covid and creating more adhesions because of scar tissue. I work on the operating theatres at the hospital I am a patient at and we had started slowly again. I’m due to have a hysteroscopy, endometrial ablation and mirena coil but that’s not until January 2021 (I’ve only been waiting since May 😖)
xx
You know what you are doing then :-). Good to have access to the right advice as well and they'll look after you. I can understand from the scar tissue, I've only had one op so I'm hoping there won't be that to contend with, having a hysterectomy on 24th. I'm not sure when they started again, but I spoke to consultant in August after MDT meeting. The referral was March, so not too bad. I hope they can help you soon.
I hope that the blood tests come back as ok for the other condition.
When I asked for Vit D I could feel the raised eyebrows over the phone, but came back as really low. I also asked for cortisol as they kept offering anti-depressents, this came back normal. 
, I think I proved my point!
Any tips for before op? It was a bit of a whirlwind before.
Yeah it does come in handy especially when my consultant is around too 😂 oh bless you, good luck for your operation! i asked for a hysterectomy but they basically laughed because I’m only 25 and don’t have children!
It’s always the way isn’t it, they’re very reluctant to do things nowadays. Sounds like you proved your point as you said. It’s very rare nowadays to get someone who will genuinely listen to you and help.
Just make sure you take it easy before and after. I’m assuming that you’ll have to isolate too? or at least that’s what our patients are doing. Make sure they give you some good pain relief too!
xx
Hopefully there will be something soon that will help endo symptoms and you won't have to consider a hysterectomy. I always told myself I never would and was very close to not needing it. It's wise to not jump in too quickly, I can see why the consultant isn't too keen. I've never had children, but only from choice.
I've two months worth of meds, including Amitriptyline, Tramadol and Oramorph, talked to GP during the week covering all bases. I still have Naproxen, Nefopam and Codeine hiding away from before and after lap.
Sounds like you are well prepared! I wish you the best of luck and a very speedy recovery 🤞🏼 Xx
Hi I took Zoladex for 10yrs with 2 breaks and 4 bone scans. It was wonderful for me it halfed my symptoms. The last 2 years were not good, still helped the same with the Endo but I developed a issue with the Pituitary Gland and started a werid manic depression which at the time I didn't make the connection, it also probably was age related too as I was peri menopause by then. When I was younger I'd been on Danol Steriod for several years and developed serious Pancreas issues and my heart enzyme were changed, since then I have digestive issues with enzymes, changed my diet, I can't digest much food at a time, meat and some types of difficult veg, I am gluten and Lactose intolrant, the sugar mannitol makes my ill, mushroom don't digest and effect the liver like alcohol.
But . . . without these drugs I couldn't have managed a Career. I finally had to stop work with the last set back and live a different life on painkillers, leading a simple life. I was unable to have children through IVF when 39 yrs. I haven't had any further operations cos I might loose my bladder and bowel. Endo has been everywhere over the years attacking 1 area then starting up in another area then returning back to old areas. In my 30's my lungs would bleed. I still have Endo it's still doing things but a lot slower. I have other issues now with scar tissue causing organs to not work properly. Not all woman get Endometriosis so far spread or at Stage 4 when 23yrs old. It's almost like another disease without a name.
There are so many woman now with Endometriosis and a few men!
Oh bless you that sounds awful.
I found zoladex did help and made the pain bearable. But I also found it ramped up again with the add on HRT, but they wouldn’t allow me to have zoladex without the tibolone because of osteoporosis and also the damage it can cause to your heart. I am part of an endo support group and it seems that’s quite common with HRT making things come back again ☹️
I made the decision to come off of it due to side effects I was experiencing including hair loss and bone / joint pain. It probably was a good decision because I’m now being referred to cardiology because of possible issues with my heart! I’m sure I’m falling apart 🤦🏼♀️
Personally I would consider going back on it as it did make a difference and let me live my life a little without this awful disease taking over. Since stopping it I have been having a flare up but I guess that’s my hormones coming back again and I’m dreading that first period. I’m stocked up on pain killers and heat patches ready!
I’m hoping the lack of sleep is only temporary whilst things get back to some normality.
xx
Yes I know too well those feeling!
I couldn't take HRT etc. as my Estrogen still rages, continues, that always was a problem getting pregnant at 39yrs. Its still higher, but I still look a little younger for my age!
My risk of cancer higher cos of Endometriosis and my hormones.
Stay well.
💕
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