Anyone ever been offered a drug trial to help with pain and endo? I have had 3 laps and a laparotomy for Stage 4 rectovaginal endo.

[NatAbad]

I had a laparoscopy in May for severe rectovaginal endometriosis, and an emergency laparotomy two weeks later because of a serious infection from excision site. Have spent the last four months convalescing, but I have been offered a drug trial for endo pain but it lasts for a year. (Am currently on the pill to help with the endo pain, but would come off this if I did the trial) Would appreciate any feedback from anyone having done something like this.

[Impatient]

It would depend on the drug being trialled and what that drug was doing to you. If they are putting you on a GnRH type drug then I wouldn't touch it with a barge pole.

If they are putting you on an actual pain killer drug then perhaps it may be worth doing.

It might improve things for you. The researchers are obviously hopeful that you will have a good outcome.

Two things to remember

(1) You do not have to do the drug trial

(2) You can stop and pull out of the drug trial at any time if you are not getting the results you need and/or are suffering side effects too severe that you lose your quality of life.

If you do take the drug and have to stop due to unwanted side effects, chances are you are not the only one, so that tells the research company as much as a successful run on the drug will do.

I haven't taken a trial for endo, but many years ago I did take part in a drug trial for pain relief after jaw surgery. I was told I would either get a pain killer or a placebo.

Given how painful it was and that i had to top up the mystery pill with paracetamol, i can only assume i was on the placebo. If I remember correctly it was 3 weeks of taking the mystery pills.

Perhaps you should ask the researchers if it is safe to take your normal pain relief along side the trial drug, in the event your pain is not responding enough to the trial drug? Or ask what alternatives there are. As far as you are concerned, your own quality of life and killing your own pain should be your top priority. The drug trial however well intentioned should not override your own wellbeing.

There will probably be limitations on what the research company can tell you, but they should be able to give you some indications about how the drug is expected to work on you.

If you have doubts then don't agree to it. No one will scold you for not wanting to go ahead. It is your choice and your decision.

[NatAbad in reply to Impatient]

Thanks for your reply-much appreciated. I have already been on GnRH drugs for 7 months-Prostap-and switched into a chemical menopause. I had less problems with that than on the pill. However I realise there are a lot of side effects. This trial is for a year-but you can drop out of it any time and yes you may just be given placebo drugs at some point. Thanks for your thoughts. Natalie