Decapeptyl injections but not endo?

Hi,

My doctor/gynaecologist said they think my pain is hormone related (?)

I was on the mini pill, Desogestrel but this appeared to stop working recently and the gyn doctor recommended I go back on Decapeptyl injections which I've been on once before.

Since having the first one this time round I've been in even worse pain, the aching all over has been so bad as well and headaches every day.

I'm so confused as to why they keep suggesting these injections when I haven't even been diagnosed as having endometriosis. In fact they denied I had endo when I was sure I did have it.

Has any one else been on these injections or similar without being diagnosed as endo?

I've booked an appointment to get off them as I'm suffering so bad right now and am convinced they are making me worse.

Thanks.

5 Replies

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  • Hello, sorry you are having such a bad time.

    Have you had an laparoscopy by someone who knows about endo?

    X

  • Hi,

    No, I've had various scans external and internal, some time ago now. I don't think they were keen to do a laparoscopy last time I was seen at gynaecology, why I couldn't say.

    Thanks

  • Sorry for taking so long to get back to you.

    They cannot tell if you have endo unless they do a lap and even then it can be missed if they are just a general gynaecologist. If I were you I would refuse to have the injections and ask your gp to refer you to a different hospital.

    There are specialist centres around the country, pick one of these (make sure it is an NHS one as I think a couple are private), here is a list:

    bsge.org.uk/centre/page/3/

    It's your right to choose where you are seen and to have put you on those injections without at least trying to diagnose you is awful.

    There is an endometriosis support group on here, I think you should be able to find it if you click on the healthunlocked in green at the top of the page. Everyone on there is really helpful and will not be happy about how you have been treated so far. You don't have to be diagnosed to join, it takes 7-9 years on average for us to get a diagnosis. There are so many women who are on there who are fighting to get diagnosed so you will be among friends.

    Xxx

  • Hi - sorry to hear about your pain.

    I've had similar problems to you. I was put on Prostrap injections without a diagnosis. I then used the Depo injection for 7 years - I was just relieved to mask it with something.

    I then had a lap by a general gynaecologist and they found no endo/ no problems at all and I've now been fobbed off with a Mirena coil. Don't make the same mistake as me - get yourself referred to a BSGE centre and get to the root of the problem.

    Good luck x

  • Hi DollyM

    These injections are used in endometriosis although many specialists now prefer to use zoladex. Having said that they aren't used exclusively for endometriosis, they are used in chronic pelvic pain where the pain is related to the menstrual cycle but no other cause can be found or indication that it is endometriosis as the culprit. Whilst many women with pelvic pain become convinced that they have endometriosis during laparoscopy even when performed at specialist BSGE endometriosis centres at least 50% will have no sign of endometriosis. Pelvic pain is caused by a number of gynaecological and non gynaecological conditions i.e. Bladder, musculoskeletal pain/ pelvic floor pain. Even if the cause can't be found sometimes simply 'turning off' periods will provide relief from pain. This doesn't mean that the pain is all in the persons head it simply means that a cause could not be found. Those with chronic pelvic pain should always have their pelvic floor muscles tested as overly tight muscles can frequently be the problem or one of the problems. Gynaecologists believe it or not frequently forget to test for this during an examination but a women's health physio can do this for you. Women's health physios aren't always that accessible on the NHS due to their very long waiting lists but they can be found privately and might be an avenue for you to look into. It maybe that you have painful bladder syndrome which again can be overlooked especially if a sufferer only gets symptoms during periods only. Many gynaecologists are now familiar with the condition and can diagnose and treat successfully although others will want treatment carried out be a urologist as some treatments can't be prescribed by them. The bladder is very close to the uterus and other pelvic organs so it can be difficult to tell where the pain is coming from. It maybe that you have one of these conditions I have mentioned or a combination. I myself have a combination endometriosis, adenomyosis, PFD and IC which all cause me to experience a lot of pain, but everyone is different. It might be worth asking why they are reluctant to perform a laparoscopy on you. It maybe that from what you are telling them there is no identication that it would be endometriosis. Take care and let us know how you get on.

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