Treatment options? GnRH Analogues?

[ADeeL91]

Hi,

I had my laparoscopy 6 weeks ago, I had my follow up with my consultant yesterday. I was advised that my best form of treatment is the GnRH Analogues. I'm really confused as to whether this is my best option. Given that I'm 23 the thought of putting myself through the menopause (despite it being temporary) doesn't appeal to me. I've tried around 6 oral contraceptives, and the pill injection but I had bad side effects to them. Some included depression, gaining 4 stone in 6 months, even making my symptoms worse.

I've fought for 8 years to get a diagnosis, although I am now the 5th woman in my close family to suffer from endo I was told I was too young, my symptoms started at 15. So I am relieved to finally not be made out to be an hypochondriac, but now I'm not sure what to do. I don't want to put my body through all the side effects if it's unlikely to work.

I did have some endo lasered during my lap although this isn't helping the pain so far, especially during intercourse. And I've been suffering from recurring cystitis for the last 2 years, roughly around 1-2 times a month. After tests on my bladder came back normal they put it down to having endo on my bladder, which has since been confirmed by the lap.

Does anyone use the GnRH? Is it worth the symptoms? Or can anyone recommend something else?

[dabba76]

Hey

This is not the best treatment for endo. It only masks the symptoms of endo & give you some relief for 6 months or so. There are neumourous side effects with these drugs. Some women tolerate them ok. They also offer them to women who want to try to conceive in the future. Best treatment is excision with a specialist. My first lap they used laser & I had no releif. My 2nd lap was excision & my pain has gone (with the exception of the area they couldn't treat). Ask to be referred to a specialist for a 2nd opinion. I wish I had x

[ADeeL91 in reply to dabba76]

I would like children in the future so I would like to keep surgery to a minimum. I don't know if it is related but I have had a lap (for an ectopic) in the past which caused a flare up, and made my symptoms get worse, I then have had increased bleeding since my 2nd lap. I don't want to risk doing anything to damage my remaining tube by aggravating my endo. I know I'm probably being a little bit too paranoid, but after losing two babies I don't want to take any chances.

Thanks for your reply though, it's definitely something I will look into. Really confused at the minute

[dabba76 in reply to ADeeL91]

I'm so sorry for your loss I understand now why you don't want to do anything to jeopardize your fertility and you are so young. It's a tough one for you, no wonder you are confused. Your not being paranoid!! We all have feelings of paranoia in one way or another, this horrible disease can do that to you, it doesn't just affect your health it affects your mental health too.

There will be women on here who loved the GnRH's and women who hated it. You just have to weigh up the pros and cons and get as much info as you can before you make your decision.

Best of luck lovely x

[MMB89]

Hi,

I had zoladex injections for 9 months and as bad as the side effects are it did wonders. The downside is that my endo is back within 6 months and I has been advised to go back on the zoladex injections. I think it depends how long you are going to be on the injections for. If its longer I think it has better effect. I'm afraid to say that pain during intercourse never changed for me and I am tempted to find a consultant that now will perform excision.

Really hope you start to feel better soonxx

[Leesac21]

I had prostap for 3 months - last injection was in March and my body still not back to normal - the side effects are awful and it didn't help with my pain

Hope u get sorted x

[Tboag]

I don't beleave it's the best option for any one, it's a temp fix and in my opinion one to help the docs get you off their back, it stinks the ENdo there fore helping with symptoms, as soon as you stop, which should be after the 6 months, it will grow back to where it was before and then carry on regardless,

Your best option is to get a referal to a bsge centre and get an opinion from a specialist team of docs that know what they are talking about,

Do this on the quick side as I understande the waiting list can be long,

Good luck xxxx

[Yazza]

I strongly agree with the ladies who say no to zoldex the side effects outweigh the benefits (in my mind) as you will be right back to square 1 once you have stopped it !

Your best option by far would be to see a specialist team at an endo treatment centre and have your endo excised as this is the only proven treatment with success and in fact if you don't have it treated you are more likely to cause further damage to your remaining tube. Sorry to hear about your 2 losses and I understand your concerns but surgery in my opinion is the best option just make sure you do your homework on the team treating you (check out reviews etc) you can find a list of the centres on the BSGE website so you can find your nearest most experienced team and get your gp to refer you to them. Xx

I also lost 2 pregnancy's so I do understand how you feel.

Best of luck and keep us updated

Take care & fertility hugs...@)

Sharon

[blondielocks]

I haven't read everyone else's replies as I don't have time but didn't want to read and run.

With zoladex which is a gnrh analogue it literally saved me so much pain. My relief was pretty soon after first injection and my side affects were much better than been in the constant pain I was previously (so much better) only thing I will warn. Think VERY carefully about when you want children. I had my aliased before my lap..... My lap surgeon then said I would only stand a good chance of getting pregnant in the next 2 years due to the damage to my uterus. Fair plaY no worries.... Then I came of zoladex and my ovulation didn't return....nobody would consider doing anything about this until I was without ovulation for a year as apparently it's common to take up to that length for people to get back to normal after zoladex.

It worked out ok in the end. But don't get the shock like I did xxx

[Froggy34]

Have a look at this article about Zoladex. It gives lots of information about it. Pick out the sections that are for endometriosis and ignore the sections for prostate/breast cancer. I found it really helpful drugs.com/pro/zoladex.html