GnRN gonadotropin-releasing hormone - any advice would be greatly appreciated

[Tozzy]

Hi ladies, hope your well as can be?

My specialist has suggested GnRN injections as after having 5 laps including total pelvic excision and numerous pain management sessions nothing is taking away my chronic pain I experience everyday all day.

I'm not 100% convinced taking these a little scared actually. I'm 31 and single if that's anything to go by. I think you can take tablets and nasel spray too .

If anyone has experienced this I would like to know how you got on please.

Thanks

T xx

[Tozzy]

Hi, thank you for your reply! Yes I saw an endo specialist up in Yorkshire (accredited centre) who cut the lining of my stomach through total pelvic excision due to endo being wide spread! This was October 2013 my last lap was May last year! I've been having no pain relief from any treatment I have been on so far!

Xx

[Tina32]

Hi, I think you mean GnRH injections as opposed to GnrN. The three types that many women are offered is either decapeptyl, Zoladex or prostap. I don't think they come as tablets but you can be offered a 3 month or monthly injection or the nasal spray.

I have been receiving monthly prostap injections for 9 months now; I have severe stage four endo and my consultant wanted me to have the injections to see if some of the endo would shrink before I have major surgery which is finally coming up at the end of this month.

When you look online for info on the injections it can seem quite scary as there are some major side effects associated with the injections and there are women who do not tolerate them at all and have had a horrible experience. My experience has on the whole been a positive one. I take a daily hrt tablet called tibolone which doctor's usually prescribe alongside the injections to reduce the menopause symptoms associated with stopping your production of oestrogen.

It took me about 3 months for my periods to completely stop, other women stop sooner it just depends on age and other factors. My period has returned in the last couple of months though which shows the endo is still active. My pain has reduced, I was in pain for about 3 weeks every month and this has reduced although I also have endo in my bladder and my bladder symptoms haven't improved.

I would say read up on the injections from good website like the endometriosis.org website or the endometriosis.uk website so you can make an informed decision as to whether or not to take them. Also what is the long term plan? Find our from your specialist? You can't stay on the injections forever and it really just puts the endo to sleep it is not a cure so I would want to know what's next after you've finished your course of injections. They usually recommend taking them for 6 months only, although you can take them for longer if you are on hrt as well and not experiencing any problems.

Feel free to ask any other questions

All the best my dear

[Tozzy]

Hi Tina, thank you so much for your detailed reply. Basically they have no idea why I'm in chronic pain everyday as none of the lap treatments have worked or medication, I tried the merina coil and pill and no difference at all! The blood was less but the same amount of horrendous pain!

To be honest I have no idea what the long term plan is as I don't know why in in so much pain and the specialists say they have done all they could.

X

[esbjorn in reply to Tozzy]

Hi

So sorry to hear about your chronic pain. I just wanted to let you know that there are some positive experiences of GnRH treatments out there - the immediate side effects I have experienced (hot flushes and possible joint 'squeekyness') are not a patch on the endometriosis chronic pain, feeling unwell, flare up pain, inflammatory pain, pain when sitting down, pain when lifting, pain whilst driving, pain pain pain etc, etc that the monthly prostap injections have treated.

There are just two main things:

- have your Bone Density checked!! - preferably before or at the very start of treatment! GnRH treatment permanently affects your bone density and you are young. Get referral through your GP. For my part I found that I could excercise again whilst on prostap (and I take calcium supplements) so tried to possibly negate some of the effects

- as mentioned the endo doesn't just 'disappear' it is still there (or rather; the incomplete way our bodies might deal with oestrogen/progesterone) - GnRH treatment however might give your body a chance to rest and possibly heal (hopefully without too much scarring) and for your body not too have so much constant inflammatory and pain responses to the endo. Some people do not then have a period for several months after the treatment (or possibly longer) and if you are lucky it might take the endo a long time to come back.

I would also find out what further treatment options they have in mind IF the GnRH really is successful. Especially as you are so young. It sounds as if they are using the GnRH treatment as a diagnostic tool - (there is a possibility that early/ 'invisible' endo respond well to GnRH treatment whereas late stage endo might not) Have a look at Lindle's posts (excellent) - and I hope you are being seen by a BSGE specialist centre. Wishing you all the best

xxx

[Tozzy in reply to esbjorn]

Hi,

Thank you so much for your detailed reply I really appreciate the information.

Yeah I think there trying this treatment as a tool to try figure out what is causing my pain.

They won't do this for a while though.

My GP wants to send me to a specialised pelvic pain centre to try see if they can figure something out.

I will be sending another mail out to ask if anyone has been to a pelvic pain centre as I have no idea of any.

You take care and thank you once again for all the info.

Xx

[esbjorn in reply to Tozzy]

Hi,

sounds as if our GP has the right idea - especially as you haven't been diagnosed with endometriosis during your laparoscopies?

The endometriosis specialist centres can be found here bsge.org.uk/ec-BSGE-accredi... - was it one of those centres that did your laparoscopies?

but I haven't heard of specialist pelvic pain centres either.

Wishing you all the best. Take care

xx

[Tozzy]

Hi,

Yes I was diagnosed with endometriosis and treated for it by a private accredited centre but none of the Laps have made any difference nor medication nothing helps the pain. ;(

[esbjorn]

Hi,

really sorry to hear about your pain. Hope that the referral to pelvic pain centre is quick.

Have you seen EndoYoga (endoyoga.com/) - yoga even whilst you have pelvic pain? Helen Kaselov of Endo Yoga was the speaker at one of Endometriosis UK Virtual Support Meetings recently. It sounded good when she spoke about a gentler way of doing yoga - so I've tried and it was surprising how much the yoga poses, concentration and breathing appeared to help - for several hours afterwards the pain level much more bearable.

As with everything, in between work/family/fatigue/housework/exercise/social commitments I'm hoping to fit in some more sessions..

Take care xx