Please help I feel so confused and don't know which way to turn advice greatly appreciated

I was diagnosed wih endo in nov 2013 had a diagnostic lap and found endo so had diathermy to laser of. Surgeon advised he mirena coil or tri cycling with combined pill. So went to doctor 1 months after operation and she put me on cerelle (mini progesterone only pill) . Had lots of bleeding problems for first 4 months but now has completely stopped bleeding but not 100% sure about ovulation as sometimes feel like I ovulate as suffered with very painful ovulation. It's been 6 months as my doctors was adamant I stuck it out for that long.

My sister as possible endo so went to her doct for advice and was told she couldn't understand why my doctor has given me this pill as it doesn't stop ovulation and not a lot of people like or take the mini pill most are on combined??? Where as my doctor told me it inhibits bleeding and ovulation in most people. U don't really know what I do know as my sister doctor is saying combined and mine is saying progesterone only. My doctor doesn't seem to want to budge on giving me anything else I'm not see it because I've got through the worse of the bleeding in this pill I don't know?

Now i feel I should go back to my doctor and day what my sister doctor has said or will she think I'm being rude and doubting her!

Also read about deogestrel causing bone thinning????

Any advice very much appreciated thank you lovely ladies x

Nikki

2 Replies

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  • Your doc is correct - Prosgestogen only POP types are best for diagnosed endo.

    and no it doesn't always prevent ovulation in every woman on it , but it does for a lot of women, and as you found out it can over time thin the growth of the lining of the womb to such an extent that periods can stop - that is the part which is of most benefit to endo ladies because if you are not having a period bleed, then it cannot accidentally flow the wrong way along fallopian tubes taking more new endo cells to a new locations.

    Being on the pill or coil to stop your periods (hopefully) is your best chance for preventing spread of new endo. it won't kill of any existing endo, but it does reduce the damage that can cause...and the pain that results from that.

    In your case it is great news that your periods have now stopped and whether or not you ovulate each month is bit of hormonal luck.

    The combi pill includes oestrogen or estradiol in the ingredients, in some ladies this is a better option if they are struggling with side effects of the POP ones, but it isn't the best solution for endo.

    As and when your sister gets a diagnosis for endo, then her gynaecologist may review her pill and switch her to the POP ones. The combi pill would be useful to regulate erratic periods and try and get the cycle on a regular pattern again if it has gone haywire. So it may be right for your sister depending on what her discussion was with her GP, and your pill is definitely right for you because it has worked to stop your bleeding.

    Most endo ladies are NOT on combined pills - they are on POP ones of some sort or another for longer term management of their periods.

    I think your sister may have got confused in her discussion with her GP - which you are hearing 2nd hand from her.

    Rest assured if your POP pill is working as well as it is for you, then stick with it.

    If you do get to the point you are fed up of remembering to take a pop pill a day -then next time you have a lap op ask for mirena to be installed. It is the same stuff as POP but lower dose, and when that stops periods - no need to take pills for up to 5 years. Just forget it is there and enjoy a period free life.

    meanwhile in the combi pill camp, this can be taken back to back 3 or 4 months at a time to prevent a period then take a break and have a period then back on the pill for another few months then another period and so on. thereby reducing the number or periods a year rather than stopping them for a longer spell.

    there are potentially more side effects to the POP sort, but if they do stop periods then generally speaking for a lot of women it is worth putting up with niggly side effects than really bad periods and endo pains each month.

    I had already had several courses of Norethisterone over the years (another POP type) and had coped well with that. Infact I don't recall ever having a combi pill.

    I know my sister was on combi to address her acne issues and it really cleared up her hormone driven spotty problem. she had terrible acne on the upper back- not so much her face. So that worked best for her.

    Every endo patient is a unique case , if your sister does have endo, only in the broadest sense will you have the same journey, ie a diagnositic lap to diagnose it, but she will go through whatever treatments she needs and you will go through yours depending on what works best for you as individuals.

    thank goodness there are so many pill options, because we are all different and what works great for one lady might just as easily be a ghastly side effect ridden experience for the next lady.

    and yes desogestrel bone density loss over 2 years was averaging 2.6% at the end of two years usage.

    the depo drugs like depo provera and depot medroxyprogesterone acetate lost up to 5.7% in 2 years of use.

    Compare that to GnRH (Zoladex/Prostap Lupron/ Decapeptyl etc)

    which could be as much as 12% in just 6 months of use, YIKES !!

    Worse still with GnRH, the loss was found to be mostly in the spine and the loss was irreversable after retesting 6months after stopping the GnRH drugs. So that's the type of drug to be concerned with regards bone density, and one of the reasons why 6 months in a life time is the maximum dosage recommended by the drug companies.

    the amount lost with desogestrel is therefore pretty insignificant, besides you are more likely to be keeping regularly active and doing more walking or other body weight bearing exercises when you are not stuggling with periods or drug side effects.

    Getting out and about more, will build up your bone density strength again - possibly to stronger than it was before you started the drugs. Just walking more will help offset the losses from the drug. Please don't worry about that side of things. Its' far far better to be preventing endo spread and future surgeries if you can.

  • Hi impatient

    Thank you so much for your very detailed as informative reply very much appreciated and feel a lot more reassured now thank you. I would just like to say how nice it is of you to send such detailed replies and how you take the time to do it as I see you comment on a lot on here. Very kind as caring thank you. How do you know so much I wish I knew what you did. Is it what you w researched yourself? I only know what I've read online but it can be vey confusing at times.

    So do you think then I should stick with the desogestrel if it's stopped the bleeding completely. I do still get pain but I suppose with anything you will as don't think we will ever be pain free :-(

    So I guess this isn't a pill I can stay on long term then?

    Did you say before you have he mirena? Has that conpletley stopped your bleeding and do you still get pain?

    Thanks again impatient x

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