HELP! I CANT SUFFER NOMORE 😭: Hello, So... - Endometriosis UK

Endometriosis UK

58,156 members β€’ 46,255 posts

HELP! I CANT SUFFER NOMORE 😭

MariaF2021 profile image
MariaF2021
β€’12 Replies

Hello,

So background story: I have suffered severe heavy bleeding, pains, mood swings, severe depression and anxiety, headaches, joint pain for as long as i can remember. I started periods at 11 yeats old and ended up trying contraceptive pills due to the bad periods.

After many years i finally had scans, bloods, and nothing showed up, i then had a laproscopy in 2018 and it showed endometriosis not severe apparantley just in the pelvic region, they used a treatment called Helica and inserted a Mirena coil.

Symptoms improved for around 6 months but then returned with the bloating being extreme that i look pregnant everyday, i sometimes can't get out of bed, im signed off work, its taking a toll on mental health and relationships.

They've suggested zoladex injections every month for 6 months along with tibolone 1 per day during the 6 months.

Now the team didn't exactly explain any of this properly and I've been put off by the temporary menu pause side of thinhs and im scared about the bone density situation.

I am dairy intolerant too so i do worry about calcium levels as it is.

Can someone please maybe share their experience on being on this medication, and any insight to what it actually does, what happens after the 6months, if i should be seeing a gyne whilst i am taking it as it will only be done at my gp.

Thank you so much. ❀️

12 Replies
β€’

Hi Maria, I hope you are OK. I was on Zoladex injections for about a year and I took tibolone (also known as livial) to stop the menopausal symptoms. Tibolone is a HRT tablet which has low oestrogen so it doesn't feed the endometriosis but it does still protect you from osteoporosis and the symptoms of menopause. Zolodex worked really well for me for a while but unfortunately I did end up having a hysterectomy. Please be reassured this doesn't happen to everyone. I have a friend that stayed on the injections for a couple of years and it worked really well for her, after the injections she went on a pill and it's still working for her 4 years later. Livial is a really good HRT in my opinion, I stayed on this for 3 years after my hysterectomy and it kept almost all menopause symptoms at bay. I'm now on a different HRT patch which is working well for me too. I was still under the gynea throughout although I didn't actually see them until my problems started to return. My injections were done by a specialist nurse at my GP surgery. Good luck and feel free to message me if you need a chat or if you have any questions. X

MariaF2021 profile image
MariaF2021 in reply to Hope698

Hello,

Thank you so much for your reply.

Im sorry to hear you suffered even with the zoladex but pleased things sound like they have improved πŸ’›

I have plucked the courage and got the first zoladex tommorow, can i ask what symptoms did you experience in the first week of having it do you remember? I'm so nervous about this all.

I already suffer severe depression and anxiety so I'm worried it'll just become even worse.

The bone density situation was you monitored or tested before during and after?

I understand I'm having it monthly for 6 months and the tablet everyday for the 6months. I have started vitamins and vitamin b12 this week so hope this helps too.

I'm just worried of side effects and it actually effecting my relationships with family and friends even more due to moods.

Does it also stop the bleeding straight away? Im 3 weeks heavily bleeding and it's scary!!

Thanks so much πŸ™πŸ’›

Hope698 profile image
Hope698 in reply to MariaF2021

Hi, the only side effects I remember having were some hot flushes and night sweats, they calmed down very quickly though. My husband told me he noticed a huge difference (for the better) in my mood once I started the treatment, he said I was a lot less moody and irritable!

I didn't have any bone density tests while on zolodex, in fact the only time I did have one was after being on the contraceptive injections for 10 years. I was told I had to come off it at that point as it was affecting my bones.

Do you have an endo nurse? If you do I would write down a list of your concerns and give her a call. She should be able to give you all the info you need.

I definitely don't regret giving the treatment a go, unfortunately for me it was just too late and the endo/adeno had caused too much damage, hence everything being removed.

Good luck xx

MariaF2021 profile image
MariaF2021 in reply to Hope698

Oh wow. That sounds good and positive im sorry to hear it went that way for you.

I don't and haven't ever been given a endo nurse? This is why it concerns me even me.

Theres a gyne i could probably call but my injection starts tommorow so may be too late 😣

Hi,

I was on zoladex for some time. I was encouraged to take tibilone while I was on it or I may possibly look like my mother in 10 years 🀣🀣 that in itself was enough for me to take it. But yeah it really helped my mood swings and the hot flushes a lot. They mentioned bone density etc . I took his word for it as I felt he knew better. My concerns were around something else which I won't go into. But he reassured me that all was good and I said I'd take it. Best thing I done.

MariaF2021 profile image
MariaF2021 in reply to Ronsk

πŸ˜‚πŸ˜‚ That did make me chuckle, im glad everyones replies are more positive and are helping me feel a bit more at ease.Oh no, does it affect fertility do you know or is it just to shrink the endo for this period of time? Im worried ill do this and then after the 6 months it just goes back to what it was!

Im on the nexplanon implant aswell so not sure if allowed to be on that when i have injection tommorow.

Ahhh so many questions unswered makes me nervous.

Ronsk profile image
Ronsk in reply to MariaF2021

The zolodex will stop the endo in its track and cause it to shrink which means no more pain I certainly was pain free throughout all mine. The hrt just reduces all the side effects of the zolodex .it stopped me going bat crazy. I was ready to kill my partner off a few times for not washing a cup or putting the washing on. It got so bad I had to leave the house. Never felt rage like it. 2 hours I spent out on the beach trying to calm down and asking myself why I was soo angry. I didn't even know 🀣🀣 when I got back home my partner was as quiet as a mouse which was perfect 🀣 I did apologise tho. Now I know why my mother was a bit of a nutter in her mid 40s it explains a lot. I've been through it 2 or 3 times now so the thought of going through it for real is scary. At least I know what to expect. Think the other half will probably move out though . Poor guy 🀣 I love him really.

MariaF2021 profile image
MariaF2021 in reply to Ronsk

Oh noooo! Haha im like that without the injections and tibolone already so fml its going to make me even worse? Or do you mean just having the endometriosis before having the injections they made you bat crazy?Omg πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚ did make me chuckle.

Hi, just on the dairy free thing, I take Osteocare tablets every day, they are calcium, magnesium and Vit D. Available in most supermarkets, Boots etc. I wa advised you need to supplement with magnesium as well as calcium to be effective.

Hope all goes well with your new treatment.

MariaF2021 profile image
MariaF2021 in reply to Cailleach

Oh thats good to know. Thank you ill take a trip there x

Hi Maria, I suffered from extremely heavy periods, endometriosis and endometrium cysts, which ended with with me being admitted to hospital twice as the pain was so extreme ( I couldn’t move and was being sick due to the pain) I needed to have the cyst removed, but it was too big to be operated on safely, I was put on zoladex in order to shrink it in preparation for surgery. Like you I was worried about bone density as osteoporosis runs in my family. It did put me into the menopause, with hot flushes etc, but it did stop the pain and allow me to have the surgery. Due to a switch in consultants I wasn’t taken off it when I should have been so ended up on it for 7months. My new consultant was very concerned and took me off it straight away. It took 4 months before my periods started again, but virtually pain free in comparison to how I was prior to the surgery and zoladex . I have been advised to get a bone scan- to be organised soon. It was amazing to be pain free after around 25 years.

MariaF2021 profile image
MariaF2021 in reply to JT21

Oh im sorry to hear all of that. Poor you!! It is a terrible disease it really is.

Im glad you are finally on the mend and it sounds like you feel happy with the results.

Im more of the heavy bleeding side of things, the pain isn't so bad only in the pelvic area at times and that makes me so sick.

Thank you for responding its great to have this support πŸ’›

You may also like...