I have been diagnosed with endometriosis and adenomyosis for some time. I have been treated with mefanmic acid, tranesamic acid, I have had a coil, an ablation, I was given Prostap injections followed by Tibilone for the side effects. During the Prostap injections it was great but now, all treatments stopped and into my second period since stopping. I have been in absolute agony.

My GP gave me co-codamol the first month and this month has increased the dose and put me back on the mini pill to "regulate my periods"!

It feels like I have come full circle and am back where I started!!! Does it ever get any better?

6 Replies

  • Have you had surgical excision for the endo?

    Ideally with endometriosis you want to limit periods by taking the pill back to back or using the Mirena coil or having depo provera injection. So perhaps you can take your pill and have less periods (seems most women doing this have around 4 breaks a year rather than doing the usual monthly). I'm not sure about adenomyosis treatment/s.

    If you haven't had surgery or haven't had it recently, then it seems that option would be worth exploring as if you could get rid of as much as possible of the endo then it might reduce your pain somewhat. As your condition is not being well managed by the GP, you should really be seeing an endometriosis specialist. Here's a list of accredited endo centres:

    I attend a major hospital where the centre is not accredited, but the surgeon is an endometriosis specialist - so for the moment I'm okay with that.

    Lastly, if the co-codamol is not working for you then you could ask your GP to add Naproxen which is a strongish NSAID. It works in a different way to co-codamol and many women with endometriosis find it helps a bit. I've used the two together during my worst times. You would need to be on the Naproxen for 2-3 days before your period or whenever the pain is bad, as it works best by taking it before the pain is terrible.

  • Hi mabes

    Never heard of it until now! It has never been discussed as part of my treatment. I don't know if the Dr I see is a specialist in endometriosis to be honest.

    It take alternate doses of co-codamol and ibuprofen to try and build up a bit of pain resistance.

    I am due back to the gynaecologist in August so will see what my options are.

    My period has finished now but I am still having pain!!

  • You could ask your GP for mefenamic acid or Naproxen - both are like ibuprofen but mefenamic acid is usually given when Ibuprofen isn't working and then Naproxen is given when mefenamic acid stops working. Either one of those can be taken with co-codamol.

    How did you get diagnosed? Did you not have a laparoscopy?

    If you google your gynaecologist you can see what he/she specialises in - e.g. the first one I saw was a specialist in IVF (which was useless for me as I wasn't trying that/needing that).

    If you search on here for adenomyosis you can also see what other ladies are doing to ease that. I do know that in ladies for whom hysterectomy is an option then that is sometimes offered as it should eradicate the adeno, but it does not always work for endometriosis as the uterus/menstruation is not necessarily the problem 100%.

  • Hi hun.

    Sorry to hear about your suffering.

    How old are you? Have you had children? Or are hoping to have children?

    The only cure for your adenomyosis is a hysterectomy and I can't see how they can be sure it's your endo not your adenomyosis causing alot of your pain.

    Jo xx

  • Hi - when you say ablation I am assuming you mean for endo and not endometrial ablation (removal of the uterus lining) for adenomyosis. Ablation for endo is only likely to be effective for the mildest of endo as it just treats the surface and endless meds can mask progression of disease. I think you need a referral to a specialist centre for a consolidated approach to more thorough treatment. Click on my name and look at my post on how to find one. The following link may be useful about adenomaosis. x


  • Hi both

    To be honest adenomyosis has never been mentioned...I only saw it on my Gp records last week when I went!! You ladies seem to have a good knowledge on this but I don't have a clue!

    I am 47 and have 3 grown up children.

    I was told it was an endometrial ablation - removal of a layer of the lining of the womb. From the advice from you ladies it would appear that I am not getting the correct advice!

    Thanks Lindle I will have a look at your profile and see if I can get referral to someone who knows what they are doing!!! X

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