On a 3 month course of decapetyl and now ... - Endometriosis UK

Endometriosis UK

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On a 3 month course of decapetyl and now my gyne has cancelled app for august till get this...... jan/feb!! What do i do now?

angelswings84 profile image
6 Replies

Hi ladies... Iv been fighting for years to get a diagnosis.. 3 gynes have said there 99% sure its endo and iv tried everything theyve asked. My last app 3 weeks ago my new gyne said hed like to do a hysterectomy as it would be best solution (bearing in mind they dont know whats going on inside me so i was bit shocked ) i just agreed because im so tired of fighting. He said one more thing he wanted me to try was zoladex , anyways ended up giving me a 3 month shot of decapeptyl and said he wanted to see me august.. Fair enough im willing to try anything. Then i get a fonecall today saying the gyne is going on holiday in august and the next appointment will be jan!!! Wtf?! My question is if it is endo and it does help(shrink wont it have developed again by jan?? Im soooo upset i feel so angry.. They dont want to help. They see i have 2 children and just push me aside. Dont get me wrong my children are my world and by other ladies stories of infertitly i feel so lucky to been able to have them ... Guilty almost. But im still in horrendous pain constantly ,my marriage is suffering, i fear im gona lose my job soon.. I feel lost. Im sat here in tears .. Were do i turn now. Sorry for being so negative x

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Cloudyrain profile image
Cloudyrain

I would call them back and re-advise them that based on the drug you have been given you need to be seen sooner than January.

I would also personally refuse a hyst until you have had a lap at least. A lap followed by mirena coil could help you loads.

If you absolutely can't get a sooner appointment your GP could offer depo, the pill, or mirena to keep you going until your appointment.

Good luck honey, it's so hard x

angelswings84 profile image
angelswings84

Thanks cloudyrain. Iv tried the coil , pill-s, depo and implant -all a few times. None agree. I was wondering would it not be quicker to get referred elsewere? X

malred8 profile image
malred8

Hi

I had a gap of 3 months after my 3 month course of Decapeptyl sometime I think they like to see how u were on it and if the symptoms come back. As mine did they said it is almost certain that its endo. One thing I found out from a colleague was that you can have an ablation which if I have completed your family its a good alternative to an hysterectomy as that isn't supposed to stop endo anyway. The procedure take approx 90 secs and after asking am having one done at the same time as my lap as my periods are so heavy. They don't seem to offer this instead seem to push the Merena coil which I didn't want.

Look it up its sometimes called a Novasure or MEA. Might not be for you but its an alternative that many don't seem to get offered.

Good luck

Malred8

angelswings84 profile image
angelswings84 in reply to malred8

Thanks malred8 , i was offered this at first then he changed his mind? Im honestly feeling so low today.. Like giving up. I think its the decapetyl..xx

daniellewright profile image
daniellewright

Hi, if you have not already, asked to be screened for adenomyosis by MRI. The symptoms are as you describe and there is no current screening programme for the condition. For more information visit adenomyosisadviceassociatio... x Danielle x

angelswings84 profile image
angelswings84

Thankyou danielle. Il look that up. Ranting on trying to even grt to see my gyne at the mo- stick me on decapeptyl and basically just push me aside. Its not right x

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