PMS with Mirena and Northisterone anyone? - Endometriosis UK

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PMS with Mirena and Northisterone anyone?

ShortStuff88 profile image
6 Replies

Hi ladies,

Has anyone out there experienced heightened PMS whilst on either the Mirena or Northisterone? I have a personal history of reacting in this way to hormone treatment but this time it seems even worse. My cycles are between 6-8 weeks and I notice an increase in pms between weeks 3 and 4. It fluctuates over the remaining weeks along with my weight and pain levels

I've been on the coil for c18months for Endo (and its really helped) and I'm on Northisterone for Adeno (which again has really helped). My bleeding is completely under control and the pain is to a level I can cope with most of the time. As time is going by though my emotions are all over the place. I can be perfectly fine then out of no where I’ll want to burst into tears, I don’t get angry or frustrated I’m just down, so down that I cry for no reason.

I’ve had a lovely bank holiday with my other half but Friday night I got home from work and just wanted to be alone, instead I cried. Last night I went to bed and when saying goodnight to the dog I started crying, I thought I’d managed to get it out my system but when my other half asked how I was I burst into more tears. This morning on my way to work I had some serious road rage, to the point I was physically shaking by the time I got in. I’ve made an appointment with my GP although I know they’ll say I need to go back to my consultant.

I’m in a no win situation. If I come off the coil and northisterone I dread to think what my symptoms will be like when they return but I can’t continue like this either. My other half is wonderful, he comforts me and stays by my side until I feel better but its not fair on him.

I’m thinking of going back to Vit B6 and Agnus Castus to help the pms but its SO expensive!

Have you ladies experienced this with either treatment? Either way, what would you recommend?

Thank you for listening

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6 Replies
Abbie27xx profile image
Abbie27xx

I was also put on northisterone and I was all over the place it was awful would shout at my children then cry and feel ever so guilty. I cried at the bear grylls program too. I felt a mess I came off them due to heavy blood clots and I am now still bleeding and am on tranexamic acid. I have also come off the pill my hormones feel a lot better now but the bleeding is still very bad

ShortStuff88 profile image
ShortStuff88 in reply toAbbie27xx

Hi Abbie27, thank you for your reply. I'm thinking of removing the coil and, I will see how I go, then if needs be will stop the northisterone too. I dont know whether you're the same but I can handle the bleeding better than the emotions, I dont like it but bleeding is part of me, it has been since my first ever period but the sadness, darkness, anxiety, irrational fears are not me at all. Crying is not me unless I've cause so to randomly cry because I've had a longer than normal journey home is aburd. I stumbled across Progestin Intolerance today - if you do have these symptoms again in the future its definitely worth looking at.

How long after stopping Northisterone did you feel/notice a difference? I've read that some women notice a difference within days when they've had the coil removed...

Jobuttery profile image
Jobuttery in reply toShortStuff88

Hi I ended up having my coil removed although it helped with my bleeding my pain was still horrendous but worse my emotions were all over the place I wanted to kill somebody the slightest thing made me really angry within a couple of weeks of it coming out it all settled xx

ShortStuff88 profile image
ShortStuff88 in reply toJobuttery

Hi Jobuttery, my partner and I have just discussed this at length and agree I should have the coil removed. Overall my experience with the coil has been a positive one so it's a shame I'm having it out but its the right thing to do. Pain and bleeding we can work together at, we can work around it but the sadness, the deep dark moods cant be. I'm booked in to see my gp in a few weeks so I'm hoping she will take it out.

thank you for your reply, it really is reassuring to know I'm making a decision many women have made before me for the same reason xx

88katief profile image
88katief

There are some really interesting academic papers that say that people with PMS-type disorders are intolerant to progesterone and will be particularly sensitive to artificial progesterone, I.e. pills and coils. I definitely seem to be bothered by progesterones this form, I can just about tolerate mirena by itself but when I had mirena and progesterone pill it was horrible.

Sorry I don't have any suggestions for you, but know that you're not alone! Google nick Panay he has written some interesting stuff on it. Good luck x

ShortStuff88 profile image
ShortStuff88

Hi 88Katief, I came across some articles by pure chance earlier today on the intolerance when looking for any research done linking the coil to pms. I think I'm sensitive to those types of pills/treatments, I've tried multiple pills, the implant, the depo and prostap; my reaction has been the same, its been purely time it takes which differs.

Thank you for the recommendation - I'll look into him. I came across a John Studd who doesn't talk about the intolerance but does link the mirena to heightened pms.

My partner and I have agreed that I should come off the mirena but try the northisterone alone to control bleeding knowing the northisterone is helping with the adeno...there are too many choices in this game!

Thank you for taking the time to come back to me - although sad for those who suffer its really reassuring to know it is a real thing.

xx

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