Looking for some advice

Hello All

I am new to this forum, only discovered it today and could really use some help and advice.

I have been trying to get pregnant for a few years now with no luck and a routine laparoscopy in 2012 showed I had endo. I had no symptoms at the time and they removed it there and then. I didn't really know much about endo then so I just assumed it was gone.

The endo is now back with a vengeance, I have very heavy periods and severe pain. I had an internal scan which confirmed the endo is back. I asked my gynaecologist if they could do the laparoscopy again to remove it and he refused, he told me the only option I have is to try an injection for 3 months called prostap which puts you into a temporary menopause. I have had the injection and while its nice to have a break from the periods and pain it has been replaced with a whole new bunch of symptoms. This surely isnt the answer?

I cant use birth control because I am trying to get pregnaht and a hysterectomy is out of the question at present. I really dont know what to do with myself anymore, I am an emotional wreck.

if anyone has any advice or stories to share iwould love to hear them.

Thank you.

2 Replies

  • Well Prostap is not the answer and you certainly should NOT be trying to get pregnant while that drug is in the body - it is highly toxic to a pregnancy. Hormone BC methods are ineffective you must be using barrier contraception throughout the Prostap (condoms, diaphragms spermicidal gels etc.)

    The drug traces remain in the body for up to 4 months after the last monthly injection went in, or 12 weeks after the next injection was due if you had had it. During that entire time safest sex is necessary to avoid a potential catastrophe. The drug causes deformities and miscarriages so do not risk it.

    The drug should stop your ovaries functioning - but it doesn't always prevent ovulation which is why there is a need to remain extra vigilant to prevent an accidental pregnancy during the time you have that drug in the body.

    Once the coast is clear then yes you can return to normal non-safe sex in an effort to TTC, but you may not be ovulating till your period returns wich could take many months. It is an average wait of 6 months for the pituitary gland to wake up and start producing sex hormones again - some ladies are quicker some take a lot longer.

    All the time the pituitary is not producing sex hormones your uterus lining is not maturing for a pregnancy, and the endo remains in a dormant state - it should wake up again exactly where it left off, so in that sense the Prostap is nothing more than a stop gap - fobbing you off and keeping you from being on the surgery waiting lists.

    Surgery is the ONLY way to get rid of existing endo. It would also be useful to determine if your tubes are still clear tubes and there are no obstructions round the ovaries or tubes to prevent the safe passage of an ova getting to the uterus. Also helpful opportunity to cut back any adhesions that might make a pregnancy painful for several months as the baby grows and stretched the adhesions sticking the uterus to other nearby organs.

    You do not need PRostap, if the side effects are too grim - then quit. It is not helping your endo and the only possible good it can do is to stop the endo situation getting worse while you wait for an op.

    I would suggest you head back to your GP, ask for a referral to an endo centre and refuse anymore GnRH drugs that are not helping. If you can get the op sooner, you'll have a much better chance to be endo pain free again, and also find out whether you should still be trying to conceive naturally or need to skip straight to IVF.

    The endo centres are listed on bsge.org.uk/ec-BSGE-accredi... have a look on the list for your nearest one , and take the details to your GP to request a referral to them.

    I'm sorry your gynae appears not to have explained Prostap to you or advised you of the risks or given you the choice. Not for the 1st time an endo patient has been railroaded on to GnRH when it is not what is needed. You can carry on for now or quit - entirely up to you - but do steer clear of TTC while the drug is in the body.

    6 months max in a life time is the longest you should be on it. So 3 months worth is half the maximum dosage. You can always go back on to it at a later date if the next endo op fails to remove all existing endo and you take a break from baby making.

    Best of Luck with seeing a new gynae - this time an endo specialist who hopefully will be willing to give you a new op. You can also see most of the accredited endo surgeons as a private patient when seeking a 2nd opinion - and have the op on the NHS, if that speeds things up for you it is probably a worthwhile investment to make.

  • Thank you so much for all the information you have provided. This has been very useful to me. You are clearly more knowledgable than my doctor.

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