Is anyone on the pill, non-stop?

I recently had a lap and was diagnosed with stage four endo, it is everywhere and at the mo waiting to go in for a longer lap in a few months. I have been on the pill now without a break for nearly 6 months and my surgeon has told me that i need to continue to take it like this until my next op as the endo is everywhere. I am wondering whether anyone is also taking the pill in this manner and which one. I have not had significant pain since i started to take it. i have also changed my diet dramatically (is this a waste while on the pill?) Boobs dont stop growing mood swings are ridiculous!!!!!

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  • Hi monzam

    I was diagnosed with stage 4 endo in May (this year when I had a lap. The endo has stuck my bowel to the back of my womb :-( Since my follow up from that I have been taking the pill and have also been to take it non stop. I am taking norothiterone 350mcg. Along with this earlier this month I had the merina coil fitted. My pain has been much less, I have bad waves of pain every now and then but I do take pain relief every day. I also have changed my diet, I no longer eat wheat or dairy products. I had 2 days ago some "normal bread" and the waves of pain today have returned with a vengeance! Now I don't know if that is due to the bread, the coil or what I'm not sure. As for mood swings not much has changed (still bite my husbands head off lots :-) )

    Good luck for your next op xx

  • Hi there, yes!

    I was diagnosed about 5 years ago, and since the operation I've been on various pills, including Dianette, Cilest, Yasmin, and now Cerazette. I was on Dianette for about 4 years, taking it for 3/4 months at a time, followed by a 1 week break. The Cilest and Yasmin were trials that didn't work for me, and now I've switched to Cerazette because my BMI has crept up. I take the Cerazette constantly and haven't had any problems so far...

    That being said I have no idea what implications this might have in the future. I only had the one operation, I have no idea what 'stage' I was, and as I was only 17 I don't remember very much of what the consultant had to say! (I was covered by private medical insurance through my dad's work, so none of the information went into my NHS notes...)

    Being on the pill controls the endometriosis. Stopping the bleeding prevents any problems getting worse, but I have found that it hasn't cured my problems completely.

    As for your diet, dramatically in a good way? I don't think eating more healthily can ever be a waste of time! Which pill are you taking?

  • Thanks so much for your reply's :)

    I really appreciate the info and help/support! :) in my case it has spread upwards and I have not needed to take painkillers since i started the pill (apart from when recovering from my lap (cyst and other lovely stuff removed urgh!). I have also cut out red meat, wheat and dairy oh and soya as read loads of research about the negative imnpact soya has on the thyroid, hormones etc. I have cut down on sugar and caffeine and fizzy drinks too. My 'intense' research also discovered that vodka is the only booze friendly to this diet as it has no wheat or sugar!!!! (just a tip) :)

    Before I started the pill to treat my endo I was in horrific pain (only when i was on, or coming on my period), my belly would bloat to a ridiculous 'not normal' level and I really noticed a significant decrease in pain and bloating when I followed the above rules!

    I started off with microgynon but i would bleed slightly continuously with this one, did not feel the pains but got wierd sensations around abdomen area. Now i am on femodene, which i think is going well but I dunno if its me being worried about the lengh i have been on it, but at times i really feel as if my body needs a break from it. I cried during the olympic's opening ceremony!! :S

  • I feel so sorry for you! I was told by my Consultant's doctor that I would have the rest of my fertile life on non stop pill last December. I felt like a freak. At the time I was on a 7 month course of Prostap. (1 x Zoladex, then 2 x 3 month Prostap's) This was after I was meant to have a hysterectomy (aged 38) due to endo, but it was so severe, they could no find my left ovary, managed to locate my right ovary with a 12cm cyst and remove that, but fai8led to remove anything else as the endo was fused to my bowel, bladder etc.

    I have since had a second opinion (as nobody explain's things clearly with this disease) that no surgeon would really touch me, unless it was really necessary, due to the risk of being left 'bagged for life'.

    My Prostap has now ended, and I am now on Norethisterone until I decide what medication I would like. BUT I do not like the idea of the mirena coil (anything that could possibly be in you for 5 years' is a no no) The depot injection - you need a bone scan after being on it (my family have a history of arthritis & bone related disorder's) The pill - blood clots (heart attack history my Grandad died aged 44 of one) WHAT am I to do? :( I hope you get on ok with your med's - Endo is a pig of a disease. x

  • Hey Monzam,

    I was on Marvalon for a good 12months back to back with one break after 7 months. It had both its pro's and con's. I was diagnosed with stage 4 endo last may and had been taking Marvalon for 3months up until that point. I needed a further lap to unstick my bowel and left tube from my pelvic wall and then free my right tube from my bladder plus remove any endo they could without doing any damage - that was in the October of last year. My gp encouraged me to stay on the pill until i saw my consultant in the Jan of this year. I didnt understand why as i thought well the endo has gone i should be pain free, ha no! that was me being naive. My GP said that i wont really notice much difference apart from the shooting pains caused by my bowel been stuck with the tube and pelvis. She eventually let me have a break before i saw my gynae and woah, what a shock. I was still in agony and couldnt wait to get back on it. Yeah i still had the cyclic pains as well the daily dull ache but the intensity of the cyclic ones wasnt quite as intense nor was I passing out.

    I havent been on the pill since starting my Prostap injections in April, i must admit the fourth month is when i have noticed a difference. I have had 2 weeks pain free (unfortunately today they have started up again :( ) I still have the implant and Im not sure whether i will be back on the pill when i have my first bleed, no one has given me guidance. im due to see my gynae at the end of august and hope that i get some answers. I have been on the pill since my first period at 13 as i bled for 2 weeks solid and i became anaemic. I am now 24 and dont want to live the rest of my life on it.

    The changes to your diet are fab - i dont think it makes a difference to your pill but through personal experience it helps with the Endo. i have cut out in general carbs and red meat, i have one coffee a day at work but avoid any sugary foods except fruit as i love it so much. I struggle to cope with grapes but i enjoy them as a picky snack and think id rather eat them and suffer at the time than eat a bag of skittles and suffer the entire day and night. It was hard to begin with and i do feel quite tired a lot of the time, i dont know about you though i feel better on my good days in comparisson to when i was eating rubbish.

    None of what i have said has probably helped in terms of your condition but at least you know you are not on your own and there are people out there in similar situations, it helps at times when you think your on your own with this stoopid disease :-) xx

  • Hey sorry know this a little late and you may not even get to read it but there is no medical reason to take a break from the pill ever, according to my pharmacology lecturer (yea I sell drugs for a living) the only reason for the break is to a. Let you know your not preggers and b. For purely psychological reasons. Needless to say a man invented it and believed we need to bleed every month to feel like a woman!

    Probably the same same douche bag who came up with the have a happy period adverts.

    Anyways it may also interest you to know that the latest research shows its healthier to be on the pill because our natural state is to be pregnant a lot and not to ovulate every month.

    Hope you get this message and it helps

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