ZOLADEX, to shrink Endometrioma

[YellowMad]

Hi I was admitted into hospital this week when I started contracting every 15minutes. Drs were confused as I have no uterus. I had an MRI which shows a 5cm endometrioma on my right ovary. Yesterday my consultant offered me zoladex or depo and said it would shrink the endometrioma. After my rough experience with the depo pill I opted for Zoladex. I am due to have my first dose today. I am nervous after reading bad experiences on it especially weight gain. Trying all kinds of pills last year has already made me gain weight and I definitely don't want to add on more. Has anyone had a good experience on Zoladex? Did the Endometrioma/ Endo stil cause pain?

[Moonglo]

Hiya, yes people have different experiences on Zoladex, hopefully they’ll give you the monthly one, in case you don’t get on with it.

I’m on Zoladex long term (with Tibolone), having suffered from persistent endometriomas - I had 2 emergency hospitalisations after burst cysts, and they were the most painful experiences I’ve ever had. Almost straight after my last laparoscopy, they found yet another cyst, at 3cm. After putting me on Zoladex, the cyst shrunk and has stayed at around 2cm (not so alarming). It does take a long time to shrink the cysts, but it does work. I’m not sure how long they’d need to put you on the Zoladex to shrink yours, you’d need to have regular ultrasound scans to monitor the cyst.

My symptoms were tingly hands and hot flushes, initially, and I actually lost weight because I had to go low carb due to a diabetes diagnosis. Now I just get hot flushes every so often, and I’m practically pain free.

If you start on the Zoladex, look out for unusual symptoms like extreme mood swings or heavy bleeding. You can find the drug contraindications on the internet - not to worry, but to be aware.

[altynova in reply to Moonglo]

Hello! Sorry you had to go through all this. I also had a cyst burst. The pain was really terrible! May I ask you if you were operated after the cyst burst? Or they managed to treat you without an operation?

[Moonglo in reply to altynova]

Hiya! Hell yeah the pain was something else!

Yes, both times I was admitted into hospital and had a laparoscopy. The first time they cleaned up the endo and had to remove an ovary and Fallopian tube. The second time was to remove the tissue/gunge from the cyst as I had severe internal bleeding - apparently I fainted and had a seizure just after my husband phoned the ambulance. Drama!

Personally, I’m amazed when I hear that someone has a burst cyst and they’re not rushed to hospital, it’s one of the most painful things I’ve ever experienced. Having said that, was yours an endometrioma/chocolate cyst, or a simple cyst? Maybe there’s a difference?

[altynova in reply to Moonglo]

Hello! Thank you for your answer! I had first my cyst burst about 20 years ago when I was 23. It was terrible, very painful. I was taken to hospital and fortunately I had no heavy bleeding and I managed without operation. I guess the size of the cyst was not very big and it saved me! I am pretty sure it was an endometrioma. 😿. And after my child was born I got another andometrioma on the same ovary! It grew up to 5 cm per a year and I had a laporoscopy. And lost the endometrioma and half of my ovary! Today I have endometriosis, take indol , kurkumin , but from time to time it bothers me! Do you take hormones? I think about it, maybe it would be my option.

[altynova in reply to Moonglo]

By the way were your cysts big in size? I could feel mine when it was 5 cm.

[Moonglo in reply to altynova]

Sorry to hear about your troubles, but I’m happy to hear that you have a child.

Funnily enough, my first cyst burst nearly 30 years ago! I’ve no idea how big it was because no-one knew it was there - I was rushed to hospital and diagnosed via emergency lap.

I was put on an old fashioned contraceptive pill and was ok for 20-odd years until I stopped to try to conceive. After 2 years of trying, they found a cyst that was 6cm, which I could feel. Eventually, it burst a week before my scheduled lap to remove it.

If you imagine Zoladex as a pause button, that’s what will happen if you start taking it now. So the large cyst you have and any adhesions will effectively freeze - they shouldn’t grow or spread, and it might manage any endo related pain. However, you still have your large cyst which is still in danger of bursting, so you probably still need a lap to remove it.

I started taking zoladex years ago, and there is evidence in my scans that another cyst that was 2cm has shrunk, but that’s over a very long time. It also seems to have paused my adhesions, to have prevented cyst regrowth, and my pain has gone away.

In order to take the Zoladex long term, I had to get permission from my BSGE specialist, who performed thorough scans and took several aspects into consideration, like my age, fertility, likelihood to have children, etc. I simply wanted the pain to go away and for my periods to stop.

I hope this helps put some of the decisions you face into perspective.

[Catd81]

Hi, I’ve just done 3 months diagnostic Zoladex and it stopped my pain immediately, I haven’t gained any weight or had any problems with it so I would say don’t worry, the injection of the implant is uncomfortable but takes seconds and it’s all over.

[Toddyboy12]

Hi. I had 3 months of zoladex for fibroids and was dreading the side effects but I was also prescribed tibolone and didn’t have any. Also the injection wasn’t at all painful. Remember you will always read more negative experiences than positive but everyone reacts differently.

[Vicky2708]

I was offered zoladex following my diagnostic laparoscopy and refused it as my gynae didn't have time to tell me what it would do to my body. I ended up on it some months later when my symptoms worsened and I have to say it gave me my quality of life back. It stopped my periods and my endometrioma reduced in size. Note: I wasn't on HRT to go alongside it as I wasn't offered it at any point during the 6-month period I was on zoladex. I know this isn't the case for everyone and I, too, have read some horror stories but there are some positive ones out there too. Hope you're getting on okay with it so far x

[YellowMad]

Thanks for all the replies!First week gone by with settling back at home...hot flushes are quite intense compared to what I assumed I was experiencing previously. Anyone else got really bad nausea?