Prostap or ablation?

Hi ladies, first time poster, long time sufferer here!

I was diagnosed about 14yrs ago and had diathermy and controlled with hormones until I was ready to have my children. Thankfully I now have two children and I'm done. I felt a lot better in my moods etc when off the pill and trying to conceive so decided to have my tubes tied 18 months ago and steer clear of synthetic hormones. It makes me a lot easier to live with 😂 but I've now been referred back to gynae with near constant bleeding and pain. I asked this morning about ablation but was told that the pain would likely continue as my ovaries would still be active so was given the option of prostap injections, which will give us more insight into the cause, to make sure the problem is endo and rule out the unlikely possibility of another cause. So I'm left with a choice of stopping the bleeding but living with some pain, or stopping both pain and bleeding, but coping with a whole new set of symptoms like hot flushes and mood swings.

So I was just wondering if anyone else has been in a similar position? My initial thoughts are to start the injections as the effects are temporary, (although the option further down this route is to discuss hysterectomy) and see how I get on. Any experience of either treatment would be appreciated.

Thanks in advance, Zoe. X

7 Replies

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  • It's worth bearing in mind that in an ideal world the side effects are temporary, some people do get long term issues as a result of taking GnRH meds like Prostap, including bone density issues and reduced ovarian reserve. I certainly wasn't aware of this when I tried Prostap and Zoladex, and fortunately in my case the side effects subsided after stopping the injections, but long term problems can happen.

    Hormone based meds, such as GnRH meds don't prevent or get rid of endometriosis, but they do reduce pain and side effects in some people. Unfortunately not everyone gets relief though, and the side effects can be severe. Personally I only stayed on both Prostap and Zoldex for 3 or 4 months... as the side effects were pretty unbearable and they didn't really seem to reduce my pain, and if anything I was bleeding and cramping more often on these meds. In the interest of balance though, I have seen some good reports on various groups over the years, so some people do get relief... plus people are more likely to post bad reviews of meds if they have ongoing issues, whereas those that get relief tend not to give as much feedback. I would still say a huge number of patients don't get relief on these meds and/or find the side effects unbearable, and a smaller number have long term issues which they believe are caused by these meds.

    I think it's a personal choice really. There are definitely risks, so it's up to the individual to weigh up the possible pros and cons and decide what to do. I just think a lot of people (myself included) start these meds without being fully aware of how they work, and the possible risks. Unfortunately a lot of specialists are very keen on these meds, and use them as a diagnostic tool, which I think is a little illogical, as we know many women with endometriosis continue to have pain and other symptoms while on these meds... rendering them useless as a diagnostic tool.

    Personally I think the best current treatment we have for endometriosis is wide and complete excision of the disease. Meds will help some people with some symptoms at best, and burning the disease might only offer short term relief as recurrence due to a tiny bit of missed disease can happen, leading to a cycle of surgeries... whereas fully excising (cutting out) the disease gives a greater chance of long term relief.

    While a hysterectomy is the right choice in some cases, for example if someone has adenomyosis (endo in the wall of the uterus), however it's not generally considered the ideal treatment if endometriosis is causing your issues, as any disease left behind can continue to cause problems, even after a hysterectomy. Of course there might be other reasons, like adenomyosis, why a hyst is the right choice for you, but make sure they also fully excise any remaining endometriosis.

  • I had prostap before my hyst .... Amazing drug !! If I could of continued taking that forever if I coild of done ... Pain free, no periods , heaven.

    I would recommend having the prostap whilst waiting for a lap so excision can be done . Excision is definitely the best thing to get rid of endo for a while.

  • Hi Zoe, I have suffered for 20 year's and have the prostrap injections, in my experience they stopped the bleeding altogether while I was having them and the pain was lessened... Which was a good break and to be honest I needed it but on the down side I was a little oversensitive with my moods and I did have hot sweats! I think you have to consider how bad you are feeling at the moment,when I decided to try I hardly gone a few days without bleeding for nearly a year so I really felt drained, flat , really really tired, miserable constantly in pain so I was ready for a break and the injections felt like the lesser of two evils! The injections gave me a break I desperately needed although some of the side effects were not exactly great and once I finished the course it slowed it down for a while afterwards once my periods started again. It's about knowing your own body and it's limits, I know I needed that break with the injections the time was right for me and you will know if you are too. Hope that helps. Leigh x

  • Thank you ladies 😃

    When I had my tubal ligation 18 months ago I asked them to kill two birds and give me some diathermy while they were in there, they agreed to it but when they came to see me afterwards I was told there is no active endo, just scar tissue! So I'm at a loss really. The pain isn't unbearable as it has been in the past, but the bleeding is causing a lot of disruption to my life. They're booking me a further appointment for 4 months time. Im considering starting the injections, they're definitely trying to use the treatment as a diagnostic tool I think, given that as far as they're concerned there is no active endo, the next stage is to discuss hysterectomy if the treatment works. I still think ablation is going to be the gentler procedure, and live with the pain. I'm pretty certain I will end up having a hysterectomy down the line, but I forgot to mention, I'm 36. Do I really want to go down that road just yet?

    Something that I forgot to ask her yesterday though, she says they can tell if the pain and bleeding is caused by endo if they shut down my ovaries with the injections. So would that mean if it works, and they go ahead with a hysterectomy, they'd remove my ovaries to ensure the same result? That seems a bit like picking up the monopoly card, go straight to menopause, do not pass go. Do not collect £200...

  • Hi Zoe - this gynaecologist seems to have given you some very confusing information. They say that if you have ablation it is unlikely to stop your pain as your ovaries would still be active, so confirms they do not have the skills to treat endo surgically. Ablation has its place but only in conjunction with excision. If they go into surgery knowing that it will make no difference then in my opinion they shouldn't be treating women with endo. It is then said that the injections will indicate the cause of your pain which again is the view of a very inexperienced consultant. In theory they might suppress oestrogen enough to halt the endo itself temporarily, but pain all of the time indicates deeper endo involving scar tissue and nerve irritation that is not caused by oestrogen stimulation. So many women have endo missed in general gynaecology by first having it missed at a lap, as many are only concerned with the reproductive organs and not the other deeper places endo is often found, and by the use of these medications as an inappropriate diagnostic method. Then suggesting a hysterectomy as the ultimate option seems to indicate a complete lack of knowledge of the modern treatment of endo.

    You have had endo an awful long time and from the details given your lap will have been a long time ago. You are off the pill and so you are having the increasing levels of oestrogen in the first half of your cycle that peak very high to stimulate it and allow it to grow much faster than when on the pill. It is likely that you have deeper endo now that needs thorough treatment by a specialist surgeon.

    GnRH agonists like prostap will have no long term effect on long standing endo that is giving pain all the time so will just delay the inevitable need for surgery and subject you to other health risks. This gynae is only suggesting it as a diagnostic tool not as a treatment and it is an inappropriate diagnostic tool so should not be suggested. I strongly recommend that you seek a referral to a specialist centre for thorough investigations and treatment. Click on my name and have a look at my post on how to get a referral. x

  • Thank you! Just thank you! ☺️

  • You are very welcome. Get back if you have any problems with a referral. x

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