Zoladex experiences : Hello, I am seeing my... - Endometriosis UK

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Zoladex experiences

Giraffegreen profile image
14 Replies

Hello, I am seeing my consultant for a follow up to my surgery soon. I imagine he is once again going to propose trying zoladex. I've been adamant against it but I'm truly running out of options, my main issue is why bother? You can only use it for 6 months then it's right back to where you were. I'm also incredibly sensitive to hormonal changes and I've found birth control difficult to handle, as well as that I've got PMDD and birth control has always made that worse. Can anyone share their experiences or just insight in general?

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Giraffegreen profile image
Giraffegreen
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seedhousel profile image
seedhousel

I tried Zoladex. I had two injections then stopped as I was in agony. It gave me chronic neck and shoulder pain and migraines. I’m about to try Synarel in advance of a hysterectomy, but have the fear 😨

Regenallotment profile image
Regenallotment

same here I’ve said no no no to Zoladex, I have hashimoto’s and there are 3 medical papers saying it will mess with that and make me sicker, I’ve said no and to the Mirena coil too. I don’t get on with any hormones. Pill was awful. I’m trying HRT but symptoms definitely increasing. I’ve done 2 months and will stop again I think till I have MRI results. Keep battling for MRI and laparoscopy, hysteroscopy I’ve finally managed to get those agreed after years of this. You have to be persistent 🙏

Giraffegreen profile image
Giraffegreen in reply toRegenallotment

I tried the mirena stupidly three times had it removed each and every time because of severe cramping. I had an MRI a while ago now, then I had surgery April of last year and this is my first appointment since that surgery. I'm not sure they'll want to do another MRI year on from surgery

JOSANDY40 profile image
JOSANDY40

Hi,

I was sensitive to the Pill. I tried several but leg pain and generally feeling ill and depressed.

I was on Zoladex for yrs not 6mths at a time. 6mths will hardly do anything to shut Endo down. For the first 6mths it took me to settle on it with werid feelings. For a couple of yrs I was with mthly implants then went over to 3mthly. I admit it wasn't easy or pleasant to have the implants but worth it longterm using Ametop half hour before to numb the skin, left or right pelvis alternate mths. Zoladex is a agonist it shuts down hormone production in your head. To me it was so imporant to stop the Endo growing as the damage over the years Endo was causing my organ distortion with different types of cysts growing with increased pain, damaging my bladder and bowel. Zoladex reduced the number of surgery's needed. As it is now I have become bedded down through surgery but that could have been 20yrs earlier without drugs like Zoladex.

There aren't any simple answers to Endometriosis but surely quality of life is important. Without the Zoladex I would never managed my career or bought a home.

My best wishes for you. x

Lmk72 profile image
Lmk72

hi. Everyone is different in Zoladex. I was on it for 5 months last year before I said no more. I am 52 and became quite unwell whilst on it. It appeared to lower my immune system so 10 days after each implant I had bad infections severe ear infection one month. Breast abscess next etc. all different but too much of a coincidence when I had been perfectly well before starting it. I had severe migraines and developed hypertension with very high BP readings when before zoladex all had been fine So I stopped with agreement with my consultant who said that I was suffering from every side effect as I was so sensitive to it. I had surgery last September to remove endo and part of my left ovary as it was stuck to my bowel and due to have more in the next few months to remove right ovary which is stuck to my appendix. Zoladex may work for you it just didn’t for me You know your own body. Good luck x

fearsmarrow profile image
fearsmarrow

hi, i've been taking zolodex for 8 months now (i've had to pay privately can't even get an nhs appointment, gp useless). I've always struggled with anything hormonal and it's been ok. I got to the point 18 months agao where what had been a monthly chronic problem becoming an all the time problem when peri menopause hit. I spent all summer in bed unable to walk. I started the zolodex and within 2 months i could function and go back to work. It has side effects but hrt is helping. I've been on the nhs waiting list so long and can't even get an inital appointment so for me it's better than being able to do nothing. I am finding it takes longer to work and wears off sooner each month so trying 3 months this time so i have about 2 weeks of 'normal' whatever that means now!

Rachie9 profile image
Rachie9

I was adamant I wasn't going to try Zoladex for years. I had my hysterectomy and retained my ovaries, however I still experienced ovary pain. I agreed to zoladex to switch my ovaries for 6 months, and I am 5 months in with no issues. I am using Evorel HRT alongside it and gavnt had any menopause symptoms other than maybe a little brain fog.

Chartolfrey profile image
Chartolfrey

Im on zoledex, ive had 11 injections so far. The 1st 3 months were still awful but after that i feel i have a normalish life. There are side effects for menopause its just getting the hrt right.Im currently waiting for hysterectomy this year as was told 12-18 months

RedCat24 profile image
RedCat24

Iv had zoladex. It minimised my pain didn't fully take it away. I wasn't prescribed HRT I was told it was unnecessary (found out later i should have had it) so I got all the menopause symptoms. Plus side was no heavy periods until they restarted

ArchiePug profile image
ArchiePug

I stopped Zoladex after 3 months. Like the Mirena coil (which I had removed after 4 weeks), it made me feel really unwell. It also gave me increased anxiety and my first ever panic attack. I still had daily ovary pain on it, bladder issues etc. I’m glad it helps some, but it just wasn’t for me.

Sunset-lady profile image
Sunset-lady

Everyone is different but I was just like you and said no to zoladex. I opted for a hysterectomy and they tried to do it but abandoned it due to endometriosis which I didn't know I had. So after trying Provera (that was terrible) I reluctantly went on zoladex because I'm hemorrhaging all the time without it. It was hard at first as I bled a lot but I took addback HRT with it (progesterone NOT progestin) and estrogen gel and after 3 months it settled and I was amazed at how good i felt. I've suffered with PMDD all my life and zoladex took it all away. I still bleed unfortunately but mentally I've had a good year. I take supplements, exercise, sleep and eat well and I don't drink alcohol either. I've been on it 14 months now and I'm under a specialist clinic who have women on it a lot longer than 6 to 12 months. Many women with PMDD are on zoladex prior to a hysterectomy to see how they will be after the operation. I'd try it and see xxx

Thomasct profile image
Thomasct

zoladex was a last resort for me also. I have pmdd and endometriosis and in all honesty it was brilliant. My mood improved i had less anxiety alot less endo pain, less migraines, but did have some joint stiffness, i used it for 10 months before i finally had a hysterectomy.

thebird1 profile image
thebird1

Hi,I've never been able to tolerate the pill or mini pill. I've been on Decapeptyl for 8 months and have just had my first month of Zoladex as the Decapeptyl had stopped working. I'm still in pain so I don't know that it's working or if it's making things worse! Despite that, I think overall I feel a little better as I have add back HRT ( low dose estrogen patch 25mg Everol) and Utrogestan ( X2 at bedtime).

I'm awaiting hysterectomy/ oophorectomy/ removal of endo. I'm 48. Prior to perimenopause pain was cyclical but now it's daily unfortunately.

Zoladex really helps some people and I think it's worth a try with add back HRT. I only start on HRT after 8 months. I tried Tibolone after 6 months on Decapeptyl but I couldn't tolerate it. I think this was due to the synthetic progesterone. I felt really low ( I couldn't tolerate the mini pill for the same reason). I'm fine with Utrogestan (bioidentical).

Good luck with with your decision!

buffabee profile image
buffabee

Hi, I'm only 2nd month of Zoladex and am going to post a positive thumbs up because at last my ovary pain has disappeared and compared to 3 out of 4 weeks pain I'm now pain free. I had one period that was heavy and crampy but no where near the normal pain threshold and I had a bad reaction to Tibolone the HRT with a lip allergy reaction and a migraine for 4 days. I stopped that and now feel fine. I have night sweat flushes and weird dreams but no migraines or pain. I do not tolerate any hormones well and have avoided most medicines until desperate. I asked for a hysterectomy and this is a pause "try before you buy" and I love it. 9 yrs of pain that has become crippling to walk and bowels all over the shop has calmed and at present I am happy to continue the short term monthly treatment. I await to see what happens when it stops. I would suggest a 1 month try before dismissing it and go in fully informed it has its own side effects but could outweigh the benefits.

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