Advice before GP visit

Hi everyone looking for some advice. I have had pain for years which my consultant has put down to Endo (without a lap to check) and I have been on prostap for 18 months and then move recently on provera 5mg 3 times a day. Things were going well but started getting pain again. I have been dropped down to 10mg a day of provera as part of management plan and I'm seeing the gp next week for help. I don't know what to do as the 15mg was working for a while but then stopped working and 10mg doesn't seem to do anything. Any ideas on what I should be asking the doctor for. I feel at a loss and I'm in a endless cycle of trying things that work for a while then stop.

Any advice is greatly appreciated.

Kay xxx

6 Replies

  • Hi Kay - why has a consultant had you on prostap for 18 months without doing a lap? You are only supposed to take it for max 6 months. Have you been on add back HRT (eg Livial)? I looked through your previous posts and see that you are not 30 yet. Your bone density isn't at its max until around then so prostap should not have been given, you should have been given a lap way back. I see you were overweight and actually that might have protected your bones since fat tissue produces oestrogen, but this can aggravate endo too and complicate surgery. A lot of consultants do seem to have an 'attitude' towards ladies carrying excess weight that I think can adversely affect the way they treat you rather than giving practical advice. Have they said at any time that you can't have a lap until you lose weight - I'm trying to find a reason as to why they have just left you like this? It is all totally against protocol as far as I can see. Would you be happy to PM me the name of the 'endo specialist' this person is supposed to be and the hospital involved so we can try and get you onto a better treatment path. x

  • Hi Lindle

    Thanks for the reply

    The consultant at the time felt prostap was the best option for me and I didn't question not having surgery as I trusted what the consultant was telling me. I was told the max you can be on prostap is 18 months if you are monitored and have seen other people posting on here have been on longer than 6 months so unsure why there is mixed information ??? I chose not to go on HRT and took vitamins instead which the consultant was happy with. My new consultant nor old one has mentioned a lap and not commented on the link to my weight they have just suggested that losing weight may help. I'm back to see the GP next week who I will imagine will refer me back the consultant who I can then discuss surgery If surgery is an option.

    Thanks for the help x

  • Hi Kay

    If you take prostap for 6 months then stop the bone loss is usually replenished but after 6 months bone loss can be permanent especially without any sort of oestrogen add back and especially if your bone loss isn't fully developed yet. Vitamins would do nothing for this. The NHS protocol for suspected endometriosis is 3 - 6 months hormone medication followed by a diagnostic lap. I assume you are being dealt with by a general obstetrician and the risk, in view of years of pain, is that medication is likely to be just masking the development of disease which when eventually found might be hard to resolve. The ESHRE guidelines acknowledge that this is the usual reason for severe endo developing. We have endometriosis centres now that have specifically been put in place to avoid this sort of delaying treatment. Endo UK itself endorces these centres. However, treatment choice must be yours and if you are happy to go with what your obstetrician thinks best then that is of course is your decision. But in asking advice on this forum, anyone will advise that you should have a lap and consider referral to a specialist centre. If you do decide to consider this click on my name and look at the post on how to go about it and where they are. x

  • Hi Kayliegh, I'm also a little worried about your treatment, I think you need to get refered to an Endo specialist and have a laporoscopy to see how and where the ENdo is, if you have a good surgeon who removes all your endo you could be pain free, without medication,

    I think any more hormoane treatment woukd be a mistake, like Lindle said, unfortunately your so could doc has put your bone density in jeopardy,

    We should be able to listen to our doctors a know that they are giving us the best care but it's not the case, especially with endometreosis,

    Fill yourself with knowledge on the subject, and endeavour to get the best possible care, (bsge centre)

    I wish you every luck in the world,

    Read through Lindles post she has been great for me, very informative and passionate about giving the correct info


  • Thank you both for your replies. You have armed me with the knowledge and confidence to go forward and ask for a lap and referral to specialist endo centre xxx I really appreciate your input in this never ending journey xxx

  • Hi Kay - I will reply to your pm on here for the benefit of others. As you live in England you can go anywhere you want in the country under NHS Choices. If you click on all the links at the bottom of my 'finding a specialist' post you can read all about your rights in this regard. It is so important that you empower yourself by learning all about your condition and the options open to you. I do hope this marks a turning point ubt keep in touch with us on here. x

You may also like...