Starting Zoladex treatment and need advice!!

[Clare-Johnson-18]

Hi girls,

I'm new to this blog and up until now I think I have dealt with my endo pretty well - minus the pain.

I'm 24 and was diagnosed with endo when I was 22. It took so long and a lot of internal scans and smears to get there but they finally books me in for a lap op! They found endo and an endo polyp which they lasered and fitted in a marina coil during surgery.

It seemed to of gone well until I couldn't get out of bed or even turn around, turned out I had a post op infection pretty bad so ended up in hospital for a week afterwards.

Once that had vanished I felt loads better, the coil was working and I didn't get pain for around 3 months. My op was in Nov 14 and the pain came back around Feb last year!

I didn't want to rely on dihydrocodeine so powered through the pain as it was bearable and not as often as it was until a few months ago.

Now I am getting the pain pretty much every day and right this moment i am in so much pain. I went to the hospital yesterday and it was to decide either between another lap or zoladex - I have additions and my left ovary is now attached to my womb so the best option the doctor said was to try zoladex.

I've been doing a bit of research and besides the massive needle I am pretty unsure about how side effects have effected people on here?

I read that it can damage your bones so I'm a little nervous in all honesty - not handling it very well.

Any advice would be amazing!!

Thanks,

Clare 😘

[Tboag]

Hi, and welcome, I've had my first zolodez injection today, and yes it was painful, but for all off about 3 seconds, feels a little sore now, but nothing major, I'm having these injection up until my next lap, then they will decide whether to remove overies, I had a hysterectomy last year due to adenomyosis, are you under a bsge centre where specialists work, if not get a referral, did they remove any endometreosis at your lap, and where did they say the endo was? You should only take zolodez for 6 months and I've been put on a hrt tablet along side it, which should help with menopause symptoms, hot flushes ect, xx

[Clare-Johnson-18 in reply to Tboag]

Oh I'm glad I've found somebody who is also doing zoladex. I'm only on a 3 month course to see how it goes!

They did remove endo on my lap but not too sure where about it was - I don't think they know either every time I go back they never have my lap notes!

I'm scared that the only solution is to remove my ovaries and get a hysterectomy - I'm only going and want kids but not till another 5 years at least 😬

I'm with a hospital and go to their gynae section and they did not tell me about the hrt tablets either.

Xx

[JeanOsborne in reply to Clare-Johnson-18]

Hi Claire personally I would request a referral to a specialist from the BSGE list. I was recently on Zoladex for six months, and whilst It did really help me It did cause other issue too.most people don't feel any real relief for three months so this may not help you. And at you age you really do need to been on hrt with to help protect your bones if nothing else.

[Tboag in reply to Clare-Johnson-18]

Hi, if I was you I would ask for a referal to bsge centre, a hysterectomy is not a cure for ENdo and its more likly that a thorough excision job can work better, you should ring the secretary of your surgeon and ask for copy of your theatre letter, thus will tell you what they found and where and how they removed it, laser, excision ect.

X

[scribble1603]

I started my zoladex injections last week. I feel ok so far without any side effects but I've read that the first month is usually easier.

I had a lap in November and then wanted to have a couple of months to try and conceive naturally before starting another round of IVF. A scan a couple of weeks ago showed that the endometriomas are back already so have gone onto the injections!!

The injection was uncomfortable but nothing in comparison to endo pain! Hopefully it will help the pain you have and improve your quality of life xx

[Clare-Johnson-18 in reply to scribble1603]

Thanks for your support!! Hopefully the side effects won't be that bad - nobody would want a moody person living with them haha!

I hope it gets sorted for you, funnily enough my doctor told me that the best solutions was to get pregnant but that's not for me yet maybe in another 5 years!

I hope it all sorts itself or for you and I wish you all the luck in the world with trying not for a baby!!

Xx

[Alouette]

Hi Clare,

I had my lap last Nov and have been in unbearable pain since, I am 3 weeks into zoladex and am still waiting fingers crossed for pain relief!

My first few weeks on the injection have been pretty hard work, at 25 the menopause is rather a shock to the system!!! My first week wasnt bad, one migrane and a couple of hot sweats. Week two everything hit, hot sweats, feeling the coldest i ever have in my life, cold night sweats kept me up all night every night and i was on the biggest pms from hell. I started calming in week 3, but the stiff joints came. Now in week 4 of first injection and things are calming down, my next injection is next weeking, and im really hoping the pain free zone is on its way!!

Zoladex can effect your bones which is why they only keep you on it for a limited time. The injection itself was nothing compared to the endo pain and just felt a little tender for a few days.

All that being said, if my endo pain does stop, it will be totally worthwile! If you are considering a hysterectomy it is definitely good to know what you are going to go through.

All the best,

A x

[amanda2kiddies]

Hi, sorry your going through all the pain. I had zoladex and its alittle uncomfortable when they give u it. After my second injection I started to ger relief. It last six weeks and then they stopped my injections to see what happens. The pain came straight back and back to waking up in and pain everyday. They have given me a coil now I had inserted last Tuesday, I'm hoping its going to work but so far just excruciating pain everyday, to the point where in struggling to do anything normal. Even the school run. Its so horrible and unfair, I wish I still has the zoladex I may still of had cramps but it made it tolerable. Where as now I'm at a loss fingers crossed it helps you x

[Clare-Johnson-18 in reply to amanda2kiddies]

Oh god I didn't end up getting it because my doctors messed up so hopefully get it this week or next!

I'm just thinking it's easier to get another lap!! I have the merina coil and it really helped for a few months - actually tolerated the pain for a good couple of months I would say around 7 months so fingers crossed it works for you!

I hope the zoladex works, I now have pain going down my leg feels like a trapped nerve so not sure if it's related to endo

Fingers crossed for you x

[HellyLlewelly in reply to Clare-Johnson-18]

Claire if your pain is shooting down the back of your leg to your knee it is an endometriosis symptom, fairly severly developed endometriosis unfortunately. The difference between that and sciatica is that the pain you are getting (like I did) wont go below the knee. Ie eint shoot down the calf to foot.

I was at my worst with this symptom in Feb 2018 and had a bowel shave and detached my bowel from my pelvic cavity.

Its real, I have the same leg pain coming back again plus the horroble back pain. Quite horrendous.

Helly. X

[charlie67]

Hi

I started zoladex in Nov 2015 and it really helped with the pain , I've just had my 5th one and it's not having as much effect now x

[amanda2kiddies]

I now het really bad leg pain and thigh pain, I've heard Endo can press on nerves. When I first got the zoladex it did help. Just bare in mind the side effects. Hot flashes (it's like someone just turn ur heater on full blast..i just used to stand with my head in the freezer. ) thirst, dry eyes if u cant manage that i didn't you can ask for hrt that helps with the symptoms. I was told it was not the best thing because your putting the hormones back in your body. But once I started the hrt everything calmed right down. I felt normal and happy mum again. But then it only help for about ten week in for about six weeks. I now wish I still was getting the zoladex.. The coil is causing me so much more pain to the point where I'm being sick and I've upped my codeine,,, but nevermind I'm still hoping it well settle down.. Big hugs

[Clare-Johnson-18]

I've just had my first injection and I was terrified as I googled the size of the needle... Turns out j had nothing to worry about because it didn't hurt a single bit, and my nurse is lovely!!

I'm now scared for the side effects!! I move into a new flat on Friday with my boyfriend (first time living together) and I hate the fact I will be going through a menopause state the first time we move in!! I feel sorry for him haha.

Hopefully the zoladex works and the pain goes away.

Thank you ladies!!