Would appreciate some feedback on what happens after life on prostap please...what next?

Hi,

I'm Cath 👋🏼 I'm new to health unlocked, but have been reading some of your posts over the past few weeks and can see how nice people are on here and how helpful you all are too. I have tried looking for a question similar to mine but couldn't seem to find one so apologies if this has already been asked.

To try and cut a long story short, I had surgery back in May which was meant to be a lap to see what was going on inside, which ended up being open surgery with my left ovary and Fallopian tube removed due to severe endometriosis and a huge endometrial cyst which had burst ( I have been told that it had stuck my bowel and uterus together so my endo hasn't been fully removed).

Two days after the surgery and before going home, my consultant recommended the prostap injections to give my insides time to heal with no periods. Reluctantly, I had the three month injection that day and this has now been followed up with another 3 months. There have been good and bad side effects for me so mixed feelings on this treatment.

Next Friday will be 12 weeks since my last injection, and I have an appointment to see my consultant to discuss what treatment I will be having next. She really wants me to try the mirena coil, and says if I don't have this then it will be either the contraceptive pill or implant.

I've been reading up on all of them and as they can all have bad side effects I'm not wanting any of them! Part of me wants to wait until I have a period to know I'm back to 'normal' (whatever that is!) if that makes sense. Also, having an underactive thyroid I feel all my hormones are all over the place as it is, and I don't want to make it worse.

I've tried going on the pill before and was having such bad depression and fainting that I came off it within weeks. Weight gain, well that is another story! I'm worried that if I'm not happy with the coil I am stuck with it as Drs seem reluctant to remove them. I don't want any further weight gain, as I have already put on over a stone due to the prostap injections and fatigue has been horrendous (don't know if this is normal or if my thyroid levels have been affected - they haven't been tested since the injections).

I have never tried the mini pill but my consultant doesn't recommend this, although I would have thought it would be better to have a progesterone only pill as I produce too much estrogen which is what I've been told causes my endo. Does this make sense?

So I guess I'm trying to ask what your experiences are of coming off prostap and going on to another treatment? Did you wait until you knew for sure that the injections had worn off before starting another treatment? I'm just so up and down with all these hormone levels I don't know what's going on anymore. Also, does anyone know why the mini pill wouldn't be recommended? I've read that it can help when estrogen levels are high. Should I request a blood test to check hormone levels first? Sorry...so many questions!

Thank you so much for reading, isn't endo a horrible thing to live with! Sorry for the long post

Cath xx

2 Replies

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  • I had Prostap for 4 months following my first surgery. It was then recommended that I try Mirena but I wasn't keen (I've never had children and was worried about my body adjusting to it and the potential for cramping/bleeding). I tried Cerazette instead but had bleeding every day on that. So after five months of that I asked if I could try to see how I was without medication. Well that was a big mistake because three months later we were scheduling a second surgery!

    I've now given Mirena a try and I'm three months down the line. It's not great and is getting me down :(

    Having said that, it's not a great idea to just 'see how you go' because in my experience that leads back to square one!

    X

  • Hi Janine

    Thank you very much for your reply!

    It's so frustrating isn't it, not having much of a choice but to try different treatments all of which come with side effects.

    Thank you for sharing your experience with me, would you say you feel worse with the mirena than you did on prostap?

    I hope you don't have to wait too long for your surgery, I was 'messed about' in their words by my hospital.

    Cath xx

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