I'm new to the site was recommended by my consultant ..have endometriosis and andometriosis. Tips for pain relief .. Anything just help

[Channy156]

I'm 28 yrs old .. Doctor now recommending 3 months of injections to go into early menopause.. I'm not happy with this tho.. Only option left full hysterectomy .. Not happy to do this as have two young children at home .. ( which I'm very luck to have )

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The GnRH analogues are good drugs. I was diagnosed with endo 20 years ago and had my first pseudo-menopause aged 24. They basically shut everything down and give your body a break from the endo & the pain. It's a lot less drastic than having a complete hysterectomy. Zoladex & the like do work. They stop the endo implants from "feeding" off your body's supply of oestrogen, thus in turn shrinking the endometrial implants. Stops internal bleeding from endometriosis. Not sure if it's the same for adenomyosis. Give it a try. I'm about to have another 3 month course of Zoladex and if it works I will stay on it for as long as I possibly can. I would rather have hot flushes than pain....if there's anything else I can help you with, please snot hesitate to IM me. Good luck

A x

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The GNRH injections are very strong drugs. They have severe short term side effects and can have long term consequences.

For some ladies these drugs have given them a break

from the symptoms arising from their endometriosis. But for others, myself included, the side effects of these drugs are difficult to live with.

GNRH works by shutting of the hormones (oestrogen) that fed the endometriosis and putting them to "sleep"This reduces the size of cysts and implants. But theses injections are temporary and when the injections finish, the endometriosis awakens and your back to square one!

So GNRH will not cure the endometriosis.

A hysterectomy will not cure endometriosis either.

Endometriosis is a very complex disease and so you should be treated in a specialist centre. Have you been seen in one of these? Here is a list of the hospitals that are specialist Endo centres.

bsge.org.uk/ec-BSGE-accredi...

You can ask that your GP refers you to a centre of YOUR choice.

Best wishes,

Barbara x

[Brownlow]

Hi Channy,

As Barbara says, the GnRH drugs are very powerful and can do long term damage. The manufacturers recommend that GnRH is not used for more than 6 months due to the risks involved so that will give you an indication of how powerful they are. They act by shutting down the pituitary gland and one of the risks is that it might not restart. Once the injections stop, the endo grows back.

It is unusual to have no side effects. While hot flushes might be more manageable than pain, the potential for other more debilitating effects is high. Essentially you are gambling and the odds are not favourable. Longterm permanent damage to the pituitary, memory loss and poor cognitive function are the main ones.

I'm not sure what you mean by 'andometriosis'. Do you mean adenomyosis which is basically endo within the uterine wall?

Have you discussed surgical removal of the endo with your specialist? Is your specialist an accredited endo specialist or a general gynae? If not, as Barbara recommends, get referred to one from the list she gave.

[sammy2009]

I was given the injection last May and it worked. I had a life again but had to come off it as I only have 1 child and they want me to try for another child as I am only 24. I do need to get the hysterectomy and they want it done as soon as I can because I have no life. I recommend trying the injections first as it gives you your life back and the pain is pretty much gone. It is Adenomyosis I have and it really worked :). I know it is a hard choice but the better out the 2 is the injection especially when you have young children in the house xxx

[spammie85]

Good luck I am 28 and was in your situation. The injections unfortunately didn't work for me I still bled continuously so in the end I had a hysterectomy in march and he also removed left ovary and tube and cervix. We left the right ovary as never had any problems with that side . bloody typical though since the hysterectomy j have had problems on the right including an emergency op as I had a cyst that was stopping my kidney from draining and caused damage to my kidney and I went for a scan 2 wks ago to make sure the cyst hadn't come bak but unfortunately it has and I am also in a lot of pain as my bowel and ureter are also stuck so I am awaiting a date for an op to remove the right ovary. luckily I have 2 wonderful kids and a very supportive partner . Hope you get sorted soon and if you want to talk feel free to message me . I also found out I had adenmyosis it was confirmed after hysterectomy that is why I bled still on the injection apparently.

[foosey]

Thanks Barbara for the link for the specialist Endo centres - I have had Zoladex for 6 months and when I spoke to my consultant on a telephone appointment 2 months ago when I was still on the Zoladex asked if they had worked and I had said yes, but was worried that when they had stopped that it might come back again, he responded by saying he could give me it for another 6 months is now slightly worrying. On my last physical appointment with him before the Zoladex started he had said he would try this for 6 months to see if this was the problem and then we should talk about a hysterectormy. In my mind I am now thinking he was hoping I would naturally go into the menopause due to my age (49). I really think I need a second opinion here. Sorry Channy for overtaking the thread. x