Can anybody please help me??

Went to see my consultant today who i have been under since 2011 for endo although he wouldn't do a lap due to my weight, he put me on zoladex then prostap3 injections, in September he took me off all treatment, the pains came back but no bleeding,Today he has discharged me with no treatment i still have no bleeding but lots of pain i told h this but he still discharged me, Can anybody advise me what i can do next,

8 Replies

oldestnewest
  • You cannot have any more GnRH drugs, as 6 months max is the usual allowed in a life time.

    So now having done that, you have to try other less intense ways of coping.

    If you have not yet tried the endo diet, then that's an option worth giving a go to reduce the pain, many women report huge improvements in pain levels by curring out certain food types, other than that is is now pain control. trying different painkiller meds to see what suits you best.

    Or acupuncture or other homeopathic remedies too.

    If your weight is all that is preventing a surgery, then again that is something you can be doing something about too. Trying to reduce the weight carried around your stomach to enable an op to take place, but even with surgery there is no guarantee you will be without pain.

    If you had still been bleeding then I would have suggested a Mirena to try and stop periods but that doesn't appear to be an issue for you, so really it is just about trying different ways to calm the levels of pain down to manageable levels.

    If you are not ready for surgery then there is nothing more a gynaecologist can do for you that your GP can't. So it is probably right that you re now back under the care of your GP as you try different forms of pain relief. You could ask your GP to refer you to a pain clinic for some advise there too.

  • thank you, i have tryed the mirena but had t have it taken out after 6 weeks due to the pain, to be honest you name it ive tryed it, i cant take anything stronger than paracetamol due to my job, so im kinda stuck.

  • Oh hun that is rubbish! I ahte it when drs just don't listen to us! grrrr!

    My advice would be to go back to your GP and ask to be referred to another gyno! Unfortunately a Lap is the only way endo can 100% be diagnosed (although saying that, like you I have been diagnosed with endo but no Lap due to existing scar tissues). If you are happy not to have a Lap could your GP prescribe you the zoladex and prostap3 injections if they were of benefit to you?

    Sorry I cannot be of much help. I hope something gets sorted soon for you. xx

  • I would go and speak to your GP and ask for a second opinion its your right. You can also go back on GNRH, I have been on it 4 times for longer than 6 months, the longest was a year, its safe to do this as long as you take HRT along with it. xo

  • No it is not safe Chibby, HRT replaces hormones but doesn't replace lost bone density sadly.

    It is far from safe, which is why all the manufacturers state 6months max for benign conditions, ie ones that are not cancer and are not terminal. Prostap is Lupron, much the same as the other GnRH drugs, just google name and lawsuit and you'll soon see quite how risky these drugs are even for 6months.

    There are websites for victims of these drugs, and a wise woman would make sure she had done her thorough homework before even starting on them. I wish I had.

    If the manufacturers and gynaecologists are failing to tell endo patients about these drugs time and again as seems to be the case, then it is up to all of us to make sure that everyone who comes on this forum and any others for endo, get access to the facts and risks and makes an informed decision about their treatment options.

    They should never be taken for any extended period without the patient being fully informed of the long term health problems they are likely to suffer as a consequence.

    If anyone decides to take them longer then that is their decision but if you do suffer as a result, then you really have blown your chances of getting compensation from the manufacturer if you used the meds contrary to their advice.

    The following is linking to a sworn statement in court in the USA by one of the pre-eminent endo experts in the USA

    lupronvictimshub.com/home/R...

    which he wrote in 2009.

    His belief is that GnRH drugs are highly dangerous and do not make any impact on endo but do make health matters worse.

    Then there is much more to be found on the following two links:

    nwhn.org/lupron%C2%AE-%E2%8...

    lupronvictimshub.com/lawsui...

  • There are risks involved for every medication, and of course everybody should find out as much as they can about it before they take them. Additionally people will react differently to the drug, and those reactions won't always be favourable.

    However - these drugs wouldn't be used routinely in millions of people around the world in the treatment of endometriosis and prostate cancer if they were that dangerous.

    I've had Zoladex/Prostap on and off for 6 months at a time over the last 15 years and apart from the side effects which I knew to expect, my body has reacted exactly as it should. I couldn't have got through those 15 years without it, and if necessary I will have it again. For me personally the benefits far outweigh the risks.

  • Wow your story is similar to mine but instead of getting discharged I was with a cocky doctor who was playing God with my body and life. 1st the maximum dose for any endo injections treatment is 6 months and you should have had lap after the treatment cos it was what I did. Do you know that zoladex makes you add weight? The doctor shouldn't have discharged you he or she should have refer you to dietician so that you can loose a bit of weight before lap surgery. They are afraid to put you under sedation cos it's dangerous for you, same thing as me cos I was born with sickle cell which is a blood disorder but am under the best leading haematologist in London if not in UK. But you still need the treatment they need to work with you not against you. Are you in London? If you are reply me so that I can give you the names of leading endo doctors in London even though am lucky to be under them I still get screw over but your case might be different. AFTER 4 YEARS OF FIGHTING DOCTORS FOR A TREATMENT AM STILL FIGHTING EVERYDAY FOR MY RIGHT TO TREATMENT SO DON'T GIVE UP LIKE THAT.

  • Thank you everyone, ive decided that im going to go back to my gp and ask for help see what they can do, i have lost weight since the first time i saw my consultant but he didnt want to know that yesterday, all his was interested in was me trying for children!!!! and my age,

You may also like...