When does it get better?

[Emm0]

Me and my partner both suffer with endo and both have been put on the prostap injection causing both of us to have our menopause induced.. After speaking to my gp she mentioned how dangerous this injection can be with fertility, I'm only 19 and really wish to have children at some point.. Will the injection stop me from doing that? And will my pain ever go away!

[KML22]

Hey I'm in a similar position - I have endo and my wife has other fertility issues. I'm 31 and she's 33 so the clock is ticking quite loudly! It's hard enough having children if you're lacking the other half of the necessary biological equipment, without all these added problems! My wife really wants to carry a baby but because her egg quality is poor, the fertility centre had said she would have to use donor eggs (and we wanted to use mine before I was diagnosed with endo) if it came down to IVF. Obviously with endo, superovulation drugs aren't exactly a good idea! So we're just really hoping she gets pregnant through natural cycle insemination. I can't give you any advice, just wanted you to know you weren't alone.

[Emm0 in reply to KML22]

Thank you, it makes me feel better that I'm not alone!

[Arcadia-77]

Hi, have you had a diagnostic laparoscopy yet to confirm the diagnosis of endo, and how long have you been on Prostap? Many of the consultants in the UK are giving these GnRH injections like Prostap, Zoladex out far too freely, they are incredibly strong drugs. I think your GP is correct to be worried as there are concerns about the long term implication of these drugs on both ovarian function and bone density in particular, but many other side effects too. Also the ESHRE European guidelines for endo say they should not be given to under 23's, and you are quite a way off that yet.

"Since adolescents and young women up to the age of 23 have not reached their optimal bone density, it is advisable not to use GnRH agonists in these women"

From page 26 here: eshre.eu/~/media/Files/Guid...

If you are not already under the care of an endo specialist, I think it would be a good idea for you and your other half to be referred to one, what part of the UK are you in?

[Emm0 in reply to Arcadia-77]

I had my first laparoscopy done in April this year and I am due for my next one in November as the first one didn't remove any endo.. Thank you for the advice

[Emm0 in reply to Emm0]

And I'm in Birmingham UK ✌️

[Becky23]

Hey, I have just been put onto prostap injections as well, I am under the care of a specialist endo centre, I asked the gynaecologist wether the injection would affect fertility and she said it wouldn't at all, and once you stop the injection to have children if there are any problems conceiving then you would have had the issues before the prostap injections. Remember the prostap only puts you into a tempory menopausal state while you are on the injections, once you stop them you should return to a 'normal' cycle. Hope this helps.

[Arcadia-77 in reply to Becky23]

Hi, I wasn't posting to scaremonger - in case it seemed that way. There is a lot of controversy in the US about Lupron which is Prostap here, many lawsuits etc. There are quite a lot of women (and in the UK too) that their health / wellbeing has never recovered, or who developed new problems whilst being on GnRH drugs. Damage to ovarian function is one of the main concerns, as is loss of bone density - but there are more warnings about that.

The original data from the trials to use Lupron for endo in the US was fudged to get a license, Dr David Redwine has seen all the original info - but these files have now been court sealed.....

impactethics.ca/2014/05/02/...

There is also a study that shows GnRH drugs to be no more effective than taking the contraceptive pill.

These are off the ESHRE endo guidelines too:

"A multicentre RCT compared a combined oral contraceptive pill (750μg gestroden and 30μg ethinylestradiol) for 12 months with 4 months of triptorelin (3.75mg slow release every 28 days) followed by 8 months of the combined OCP (Parazzini, et al., 2000). Both groups showed decreased dysmenorrhea and non-menstrual pain, although no statistical data were presented. No significant difference between groups was seen."

"No evidence exists on the effectiveness of GnRHa for endometriosis-associated pain."

I just think that we all need to be armed with as much knowledge as possible, to be informed in the choices we make.