GnRH analogues

[Foodman500]

Hi all,

I am due to be starting injectable GnRH analogues soon alongside a HRT, dose anyone have any advice/ guidance on them and their side effects and management?

In the past I have had Nafarelin (Synarel).

The plan is to have these before surgery as NHS wait is 50 weeks where I am.

Thanks x

[FN75]

I had Prostap and the best advice I was given was that the first two months would be horrendous, and to stick with it to the third injection. She was right! It was like getting my life back overnight, or even being given somebody else's 😂 IStick with it.

[Amy2106]

I started on these about 3 weeks ago I was started of Decepaytl and add back tibolone so far I have been absolutely fine (touch wood!!) I have had the odd cramping and I do have the worse tiredness but pain wise I am currently taking nothing at the moment and back to exercising properly ! Hard to say whether this is completely due to the injections as I had surgery a month ago (although they have had to leave a lot of endo/cysts remaining). And I have also changed my diet post surgery which may also be helping. Hope you get on OK with them!

[F1Lucy]

Hello! I’ve been having them in the form of Zoladex. Same situation as you, as there’s such a long wait I was put on them to help.

The first one made me feel pretty awful for a couple of weeks and I had a lot of bruising where they put it in. But by the time I went back for the second one 4 weeks later I was feeling better. I’ve had 5 months now and honestly feeling better than I have for a year.

I was told to take HRT if I get any menopause symptoms but I haven’t had any at all. My nurse said I’ll have to start taking it when I get to month 6 as it’s better for me. So I’ll start that next month.

Everyone experiences it differently, but for me I’ve had a huge reduction in pain and it’s stopped me feeling sick all the time. Other than 2/3 weeks of bruising I’ve had no problems. I’ve been on the NHS wait list for 12 months now so I’m just really pleased the nurse offered them to me. I was taking dienogest for 6 months and they didn’t help at all, so moving over to these was great!

Good luck and it’s worth giving it a go!

[Mummyloves]

hi I’m on my second round of the injections the 1st lot was 4 a year it does take about 3 months 4 then 2 kick in but it took away the pain I have no periods cause I’ve got the coil as well it’s as long as u take hrt it’s not 2 bad hope u get sorted, they told me a year wait 4 the op so fingers crossed my op is October

[mjo44]

Ive personally tried prostap 3x

The first time i was on it 2 years and stopped it because side affects, confusion, memory loss, seizures, migraines.

Literally shut down my whole life, lost everything,

Second time i tried it 5 years later as i didnt know what else to do & from month 2 i started with seizures, passing out and stomach issues was hospitalised for 2 months & put on a feeding tube, after having to starve myself for 8 weeks to control pain.

Third time was whilst i was in hospital i took the first month and after researching and finding out it can cause stomach paralysis i decided not to have any more injection as although i was in hospital & could not eat without extreme pain, nausea & nerve pain i was constantly being gaslit, and had all symptoms of stomach paralysis (gastroparesis)

I am now having to go private after all of that i was still put on a 52 week waiting list.

Yes you will hear positive stories, but please be very aware of your body and changes,

If you start developing symptoms both physical and mental and ur doctors are telling you theres nothing wrong with you, its nothing to do with injection or maybe this is just the new vesion of you,

Then please know you are not going crazy it really is happening.

For me i was also diagnosed with two autoimmune illnesses after prostap

. hashimoto thyroiditis

. Pancreatic insufficiency

The symptoms of prostap i developed

. Memory loss severe

. Confusion

. Detachment (depersonalisation)

. Mental state became very spiritual

. Hands and arms spasms into stiff claws

. Deficient in Vit D, B12 (needed injections daily), Folic acid, iron, pancreatic enzymes

. Severe abdominal pain

. Breathlessness

. Inability to eat without pain, nausea, vomiting

. Daily seizures

. Passing out

. Mood changes, unable to regulate emotions

. Sever pelvic pain

. No return of periods after stopping injection for 1 year. (After being on it for 2 years)

. Lesions on breasts

. Water retention

. Fatigue

. Nausea

. abdominal pain

. Brain zaps

Please do your research on this drug because it has disabled a lot of people and left them seriously unwell, in wheel chairs, unable to function on your own.

It doesnt happen to everyone, but if you do notice things slowly declining please consider that it could be off this drug

I wish you luck, i know its hard because of the waiting lists and we are backed into a corner not knowing how else we can survive, but getting the pain under control with regular doses of pain relief at ur worst time can help somewhat.

Currently i am not on prostap and i take daily

. Amytriptaline 25mg (twice a day)

. Paracetamol 20ml (4 times per)

. Cyclazine (3 x per day nausea meds)

. Codein (15mg -30mg 4 times per day)

. Diclafenac suppositories (3 x per day)

. Constipation suppositories

. Hot water bottle All day lol

. tens machine (if tolerated)

. I'm also waiting to have nerve blocker injections to see if they help.

Hope this info helps x