I have stage 4 endometriosis and adenomyosis with bowel and bladder adhesions and cyst's on both ovaries. I've been waiting for four years for my hysterectomy and I still don't have a date. My recent hormone injection appointment was cancelled and I'm wondering whether to take the opportunity to take a break from taking HRT and having monthly injections for a while. I'm fed up with being stabbed each month and also the side effects that it comes with along the side effects of HRT. I can't talk to a Dr as my drs aren't accepting any appointments until the 8th Jan they are only taking urgent appointments and there's no way I'd be able to see my consultant anytime soon either so talking to people on here will be the nearest I can get to some sound advice.
Has anyone stopped their injections and HRT for a little while? If so, what happened, was it worth it? Did your periods start again? Were they worse? How was your endometriosis? Did it come back with vengeance?
Any advice would be greatly appreciated as I would like to be me again and the thought of having yet another injection...well you know if you have them.
Thanks for taking the time to read this.
Emma
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Em_46
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Hi, sorry to hear you have it so bad and have waited soooo long for a hysterectomy!...that's awful. Sorry I can't offer any advice in regards to what you asked as I am at the stage where I am considering having the hormone injections, are they really painful? Thanks and good luck!
HiI've had two different types of injections, zoladex and prostap. The zoladex one is the more painful out of the two if you don't get lidocaine given beforehand (so definitely ask for that) and the prostap one is just an injection so like you were having a blood test it's the after effects I find the worse with this one as you feel like you've been hit by a bus if you haven't taken any paracetamol or painkillers beforehand.
I've had these injections for four years now every 28 days so I'm kind of done with them now....
Hi and thanks for your reply. Blimey I am not surprised you are done with them after that long! I had been told that you couldn't have them for more than 6mths or so by a previous consultant but maybe that was a different type. Having read through quite a few posts on this page and peoples stories it is clear that there sadly doesn't seem to be any clear solution which is depressing!😭 I hope things improve for you soon x
Hi, I am on decapeptyl. I’ve had a break previously for a month. My symptoms came back straight away. Not as bad as pre injection. It also then took me a couple of months to feel better on the injections. My gynaecologist said everyone is different for how quickly symptoms occur after stopping injections.
I have only had the decapeptyl injections but I find they suit me well.
Definitely worth asking. I wasn’t offered the others. But it suits me. I did go onto 3 monthly injections but they didn’t suit me as well so I’m back on monthly.
Personally I wouldn’t stop. The treatment stops the endometriosis growing by stopping the hormones feeding it, hence you go through false menopause. If you stop then it will begin to grow again. Yes injections are a pain, the dr should have made you an appointment for the next day if they had to cancel as delay already starts the hormones to change. Perhaps the hrt your on isn’t suited to you if your still suffering? Can you email your consultants secretary or call to ask advice? I had zoladex and evorel patches then went on prostap and evorel, I had 19 months of treatment then hysterectomy 12 weeks ago. Been going to gynaecologists for 20 years! Good luck.
Maybe. I think I need to get a dr's appointment and have a chat about different options as I can't go on like this. Still waiting for my injection, they've cancelled it again...
Thanks for taking the time to read and reply back to me
I’m in a very similar position as yourself with stage 4, adeno & multiple adhesions, unlike you I didn’t have the same perseverance to stay on the injections! I had Prostap and after 3 months I had to come off them for my own sanity as I was losing my mind, literally. The side effects, both mental and physical, weren’t worth it and as I predicted the injections brought me more harm than good but I guess you have to be seen to be trying everything. In terms of stopping!
Interestingly, it actually took about 6-7 months for my cycle to come back (however I am 49 so maybe that didn’t help as things winding down anyway at that age?) however, the first month or so stopping the injections I still felt pretty lousy and suffered similar side effects to being on them, however, slowly but surely those effects began to subside and I actually ‘enjoyed’ 5 or so months of no periods and more manageable pain levels. Unfortunately I could tell the oestrogen levels were beginning to slowly increase as I started to feel more and more flared up, while my mental state improved significantly with ovaries beginning to start getting active again and the influence of more oestrogen in my body, the tell tale normal adeno/endo pains returned. Within about 7-8 months of stopping the jabs I was kind of back where I started, however, I felt the adeno pain is perhaps a little worse than it was before, I seem to have more bloating/bladder pressure than I had before. I’m only about 3 months in after everything getting back to ‘normal’ tho and cycles are still a bit all over place, so time will tell.
For info, I took the first injection in Jan this year and my last one (the third) in March & took Oestrogel and Utrogestan progesterone HRT for 2 out of 3 months - (I tried to go cold turkey the first month with no HRT as progesterone badly affects me but eventually had to take as side effects of jabs too severe) - so even tho I was only on them 3 months, interestingly it took about 7 months for my periods to return. So, on the bright side I did ‘enjoy’ quite a few months where I felt a lot brighter, however that was unfortunately temporary.
I hope that is useful. Very sorry to hear of your extremely long wait for a hysterectomy and the position you’re in. Completely understand your desire to be rid of injections too as it’s a pretty demoralising thing to do month after month isn’t it, I admire you for putting up for so long as they totally broke me and weighing up extreme adeno and endo pain was a better alternative for me than staying on those injections as they impacted me far more severely.
What great responses - enjoyed reading these. I had my first zoladex yesterday. I am laughing now as I had no idea how big the injection was and it hurt! I can't have a hysterectomy as endo is too severe and my consultant doesn't want to do it (I'm like you Mrs Paddingtonbear but they did your operation). Zoladex is the last option for me, and I have thought about coming off it all if it doesn't work. However, Sez73 is right about estrogen - I miss the estrogen mentally so much, but physically I'm really bad with it and it feeds fibroids and adenomyosis and makes my endometriosisflare up. I think it depends how old you are and how near to menopause you are too. I'm hoping my ovaries aren't pumping out as much as they used to so the menopause symptoms are not as severe. I'd also read the XX Brain which is a good book about women's health. There are lots of benefits to taking HRT. Have you tried a nutritional approach? I'm going to really give this a go in January. I know that sugar really impacts my endometriosis and gluten.
According to my endometriosis specialist you can stay on zoladex or prostrap for years - the clinics get round the licensing laws. Some women thrive once their ovaries are shut down especially those with PMDD.
Well I know they tend to give you one month first to see how you get on, but after that you should try to get the 3 months. I can't take half a day off work every month to go to the hospital so 3 months is much better.
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