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 Post subject: Decapeptyl - how long before it starts working? Desperate...
PostPosted: Mon Nov 10, 2014 9:10 pm 

Joined: Wed Jun 11, 2014 8:41 am
Posts: 11
Hi everyone, I've had one month of the Decapeptyl shot (second one tomorrow!) & so far I've had side effects like joint pain & worsening of my balance, but I've also had some really horrible mood swings/plunges -- I know there's a hormone surge when you first get on Decapeptyl, but how long should it take before there's a positive mood effect?

I've had estrogen patches & progesterone (orally/vaginally/then finally via Mirena -- all of the forms had really bad side effects for me so I've refused progesterone this time around, though am still on estrogen patches), tried Synarel, nothing worked.

I'm terrified that I won't be able to tolerate Decapeptyl, or worse, that it won't work (which I think then must mean that I don't "really" have PMS?!). Honestly I'm finding it really hard to hold on right now -- I feel like I've been told to wait & see how I feel for months & years & just... things are really really terrible at the moment -- so I'd be grateful to hear from anyone who's been on Decapeptyl as to how long it took before your PMS started to get better! Ideally I'd like a hysterectomy but obviously the doctor wants to see if the Decapeptyl works first...

Thank you for any thoughts/encouragement. Life does not feel worth living at the moment. :/


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 Post subject: Re: Decapeptyl - how long before it starts working? Desperat
PostPosted: Mon Nov 10, 2014 10:35 pm 

Joined: Thu Nov 29, 2012 5:00 pm
Posts: 79
Hey Diffuse,

Hang in there. I used decapeptyl many years ago and for the 1st 2 weeks felt like I'd made the biggest mistake of my life due to the hormone surge. Thereafter, I felt like I'd been hit by a bus and my mood plummeted and I fell straight into chemical meno! However, I got some HRT going and things improved so much. I couldn't tolerate the combined HRT but oestrogen and testosterone were great. I used the 3 monthly jags though and got them every 10 weeks so it will be a bit different as you are on monthly. It can take some time for them to fully kick in and believe it or not, the menopausal mood swings can be fiendish! HOWEVER, don't give up hope, it may be that you need a touch more oestrogen to help with mood and if you were on a big enough dose, you wouldn't experience these mood swings, joint pain etc etc as you'd be covered with the oestrogen (hope I'm making sense). Maybe chat with your doc about increasing your patch? What dose are you on? What type? It can take a good few months until you become fully suppressed so do hang in there. Hope your injection goes well tomorrow. Jx

_________________
38 years old. Suffered PMDD for many many years. Had very successful treatment on GnRH Analogues and oestrogen only HRT. Had TAH + BSO 15/11/12 for severe complex atypical hyperplasia. Hopefully now completely symptom free permanently.


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 Post subject: Re: Decapeptyl - how long before it starts working? Desperat
PostPosted: Tue Nov 11, 2014 1:47 pm 

Joined: Wed Jun 11, 2014 8:41 am
Posts: 11
Thank you so much for your response -- I really really appreciate it. It's so hard to find advice or reassurance about this stuff (hard to find people who take it seriously!).

I'm only on 25mg estrogen at the moment (Estradot but will probably switch to Evorel, which I've been on before, because of problems getting Estradot). I had previously been on 100mg & 75mg, but the consultant said that I should just be on 25mg (I forget why -- maybe only a little estrogen because I refused progesterone, in hopes that it would mitigate some of the side effects anyway on its own).

I'm doing this through a hospital clinic -- I've been really lucky to be seen here, but the downside is that it's not as easy to talk through things with them as it is with my GP; appointments are difficult to get (& inconvenient, as it's about 1.5 hours from my home or about an hour from work) & they are really unreliable & slow in returning phone calls with queries! So that means I really appreciate hearing your experience even more.

And I know... whenever hormones get tweaked, it can take a few months to settle. But... I've been being told to just wait, just wait, for over a year (first I was given birth control... then estrogen patch/progesterone for 10 days a month, then estrogen & progesterone every day, then estrogen & Mirena, now this -- which I'd been arguing for months to get!!). & it's really really hard to keep struggling on. I have depression/anxiety anyway (though the PMS/ovulation mood stuff is the worst, because no matter how much I work on the depression/anxiety, then twice a month everything gets swept away...) & am frequently suicidal, & I'm... really really struggling to keep going right now, let's just say. (& yes, I am seeing a counsellor, have been for months.) This year has been awful, what with the PMS stuff, the physical side effects of it, & even splitting up with my partner partly because of PMS.

I'm really afraid that the Decapeptyl won't work, or the side effects will mean I can't even keep trying it, & then that leaves me with... I don't even know. I *know* I have PMS, even when I've been doing slightly better with the depression, there's always that sudden sharp drop around PMS & ovulation time (it's like flipping a switch: one day I could be making plans for the future & feeling tentatively hopeful, then suddenly I'm stuck on the couch for two days severely depressed & trying to figure out how to kill myself).

Anyway -- thank you again for your thoughts & good wishes, I really appreciate it.


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 Post subject: Re: Decapeptyl - how long before it starts working? Desperat
PostPosted: Tue Nov 11, 2014 10:15 pm 

Joined: Wed Dec 19, 2012 3:51 pm
Posts: 50
Hi,

I've not tried Decapeptyl - you'll see i'm on the oestrogel/progesterone route at the moment, but just wanted to wish you luck and say I identify with your feelings and you are right you DO have PMS, its an absolute B**** and I wish there were a magic cure. How great are you though, keeping up the fight until you find something that works for you? You are on the right path and like PMDDSurvivor says it will take a while but every day you do on it you are closer to feeling better.

Keep in touch and let us know how it goes. ;)


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 Post subject: Re: Decapeptyl - how long before it starts working? Desperat
PostPosted: Tue Nov 11, 2014 10:25 pm 

Joined: Wed Jun 11, 2014 8:41 am
Posts: 11
Thank you so much -- it helps so much to feel less alone & kind encouragement is so appreciated! I hope the oestrogel/progesterone combo works for you too -- hang in there!!


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 Post subject: Re: Decapeptyl - how long before it starts working? Desperat
PostPosted: Wed Nov 12, 2014 2:22 pm 

Joined: Wed Dec 19, 2012 3:51 pm
Posts: 50
No problem at all, before I was diagnosed properly, I was on here all the time and just used to read and read all the messages and it helped so much to identify with other people.

My treatment worked really successfully up until about four months ago when I started getting very regular migraine attacks but this has coincided with me thinking about starting a family. So i'm flying solo (as in no oestrogel/progesterone) for this month and having some acupuncture and trying a homeopath etc. I got to the point where I was so sick of taking medication. We shall see, i'll have to wait and see what happens when I begin ovulation/menstruation etc.

Keep us up to date x


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 Post subject: Re: Decapeptyl - how long before it starts working? Desperat
PostPosted: Wed Nov 12, 2014 8:57 pm 

Joined: Wed Jun 11, 2014 8:41 am
Posts: 11
Oh gosh, good luck! I feel like every time I've had my hormones tweaked it's taken me at least a month of total hell, plus a few extra months of... lesser hell (ha), while things adjusted -- I hope trying other stuff helps while you're off the hormones.

I'm still having a really really awful time, my mood just plummets & I think my friends are just getting tired of me saying I can't go on. It's so exhausting though, bouncing from... not super-great to really really really bad. Everything just seems so pointless & like there is just no way I can hang in there long enough to see if Decapeptyl works (& if it doesn't? I can't even bear to contemplate that). UGH. Anyway, yeah, super-glad this board exists so I can talk to some people who understand!


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 Post subject: Re: Decapeptyl - how long before it starts working? Desperat
PostPosted: Mon Dec 15, 2014 10:14 pm 

Joined: Wed Jun 11, 2014 8:41 am
Posts: 11
Just had my 3rd Decapeptyl shot last week. Mood was really really low last week (a friend of mine who was on this kind of thing for a different issue said sometimes the effects feel like they're wearing off the last week before the new shot; anyone had this experience?), and again really low yesterday/today. Impossible to figure out how much of that is PMS/ovulation-related, how much depression in general, how much Christmas coming up (the holidays are really hard for me normally)... how much more of this I can take. How long before I end up having to conclude that Decapeptyl isn't working? I argued with my therapist today, who gave me the whole "but you have to WANT to get better" spiel... my thing is that I've been trying so many different things that are supposed to help (yoga, meditation, antidepressants, therapy, etc. etc. etc. you name it and now all the different things I've been given for PMS, with the Decapeptyl the latest). And if nothing seems to be helping, then it is hard not to draw the conclusion that nothing CAN help.

Another friend, who went through something similar with PMS, asked me if there had been any tests done to see if my ovaries had been shutting down yet... no, nothing! I'm supposed to have a blood test for estrogen in January and then go back to the doctor for a follow-up in February. What kind of tests should I be getting done?! Is there any way to tell if my ovaries are shutting down/if Decapeptyl is even doing what it's supposed to do?

I'm in despair... about my mood, about how to even tell if this is working physiologically (never mind mentally), about how much longer I can last (or not last).


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 Post subject: Re: Decapeptyl - how long before it starts working? Desperat
PostPosted: Tue Dec 16, 2014 9:33 am 

Joined: Thu Nov 29, 2012 5:00 pm
Posts: 79
Hey,

I used to get my jags early as they always seemed to wear off too soon. Just a thought, what HRT are you on? It may be that that's making you feel rotten?

If not on any, then there's no reason why you couldn't have bloods to check estradiol, FSH, LH and progesterone to see if you're fully suppressed.

It can take a good few months for this to happen. Also, low mood is a side effect of Decapeptyl and is usually associated with low oestrogen levels so it may not be that it's wearing off but in fact doing exactly as it should and if not on HRT, then this indicates that you should be.

I hope you get things sorted soon.

Jx

_________________
38 years old. Suffered PMDD for many many years. Had very successful treatment on GnRH Analogues and oestrogen only HRT. Had TAH + BSO 15/11/12 for severe complex atypical hyperplasia. Hopefully now completely symptom free permanently.


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 Post subject: Re: Decapeptyl - how long before it starts working? Desperat
PostPosted: Tue Dec 16, 2014 10:08 am 

Joined: Wed Jun 11, 2014 8:41 am
Posts: 11
Hi J, thank you so so much for your reply!

I'm only on a low dose of estrogen at the moment -- 25 mcg patch -- because I had a really bad reaction to progesterone in any form (orally, vaginally, via Mirena -- anything from eczema/rosacea to trapped wind to tons of acne [also the Mirena made me itch!!]), so I refused to take any more. I read online about a woman who'd done the same (via that msjekyllhyde blog, which I credit with keeping me alive to this point). My understanding is that the low estrogen prescription is because I'm not taking progesterone, otherwise my uterine lining could build up dangerously (I'm having a scan next month to check for this).

Rationally I can understand that it could take some months for things to be fully suppressed, but part of me just thinks, well, isn't it just like flipping a switch?! Off should be off! Plus my experience with Synarel sounded like, in retrospect, like it was only partially suppressing me, and the thought that this might be happening again makes me super-miserable.

Last month, I did have a few moments where things felt clearer, and when I had what felt like a usual PMS/ovulation-related mood plunge, it seemed to last a shorter length of time than usual (in other words, I didn't spend an entire weekend hiding under a blanket on the couch, it passed quicker than that :roll: ). It's just so hard when you feel like you're just left guessing: was that the Decapeptyl starting to work? Is it working now? Is it not working? Is it working, but because of the additional stress of the holidays/winter darkness/etc. I'm struggling anyway? (Also because I'm not having a period, and haven't had one for most of the year due to Mirena, etc. I feel like I can't even predict when I 'should' be having horrible mood, because I have no idea what point in my cycle I might be at, which also makes me feel powerless and stuck...)

I'm just so discouraged by being told to wait and see all the time, even when I rationally know that probably just has to happen, because waiting & seeing hasn't done me any good so far. :|


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