Anyone been on GnRH with add back HRT long term for endometriosis and severe PMS

Hi,

I am 28 and have been in artificial menaupose GnRH injections with add-back HRT for 3 and a half years continuously, since shortly before my endo diagnosis(under a PMS specialist who is treating both my endometriosis and severe PMS with this treatment - initially thought it was severe PMS my problem). I started for the first year and a half on Prostap with add-back HRT including the Mirena coil. I have always spotted from the start, spotting nearly everyday even if my PMS was shortened and mild. After a year and a half, Prostap was failing, with the reappearance of more mood swings, 'mini-periods' influenced at the same time as my female flatmates' periods, and of course more endometriosis symptoms too. I was therefore switched to Zoladex(still with add-back HRT), and it is the same story: severe PMS has returned, severe mood swings, pains and other endo symptoms, spotting everyday too. What I noticed too is that these injection given to me every 3 months, eventually faded after 2months. I do notice these injections affect my memory and concentration and find myself 'not on the ball', I also have noticed I get bouts of depression around the 2nd week after the injection, and that when the injection fades I get a lot of anxiety I cannot control, depression and mood swings (It is currently very bad, i can't follow myself and my mind that flips between anxiety and depression). These are what I have noticed, however it is so complexe, especially with my continuous spottings that fluctuate between minimal and moderate (which I am convinced affect my moods too and cause me to PMS), it still makes me go 'crazy' and wondering what is me,what is the drugs, the endo back and so on. I am therefore wanting to ask if anyone has/is going through a similar experience in a way or another, or reports of having been on these drugs long term and their effects.

I would also like to inquire if some of you endometriosis sufferers also suffer from severe mood swings and severe PMS (which I never used to suffer from so much until my spotting was 'all over the place' (and this already before being on the long term treatment), which makes me think that endometriosis is subsequently causing all the mood swings and severe PMS?!

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  • Hey sorry to hear ur having such a tough time. I know how u feel as i also suffered bad PMS and PMT and it took 10yrs to get diagnosed with endo. I was sent to a PMS clinic about 5yrs ago and was checked over n told i had a little cyst but nothing to worry about and was given the marina coil which slipped down into my cervix very soon after it was put in so was removed after 3wks. I suffer from depression and anxiety and find it really hard to control my anxiety and had 6 panic attacks since october. I have been going for counselling for the last year though now and this has made my anxiety worse but hoping it will evetually make it better. I was found to have severe endo just in nov there and was put on decapeptyl from jan and only lasted 4wks as i had severe side effects and depression was one of them. I was also taking HRT livial with the injection but didnt help. I am now on danazol which is a male hormone but only started it 3days ago so still to see what happens. Have u had any support for ur depression and anxiety? Have u had endo removed too? hope ur ok tho xxx

  • Thank you for your response. I'm sorry to hear about your rough time too! I really think there is a link between the endo, anxiety, depression, in corelation with hormones. I just haven't heard many endo sufferers with severe PMS too.

    That's the tricky thing too, that some of these treatments can actually cause depression and other such things as side-effects!

    I am in psychoanalysis therapy and also about to start CBT. for sure it's not easy the couselling or therapies as it hashes up past emotions...

    I had endo removed 3 years ago at laparoscopic diagnosis. I am certain it is back due to the symptoms I get and the increase of pains I get in the areas it was found and other areas too now. I am sort of feeling dropped by my specialist (the PMS specialist) since he has no other solutions for me other than another laparoscopy, which I am taking my time to think about since surgery can also make things worse with scar tissue, and also knowing I only had pain and mood relief for about 5months after the laparoscopy I had. So thinking carefully when and who to having done by, if I do decide for another lap.

    I have been doing the diet for a while now and I am more and more going into the holistic route, with so far acupuncture, naturopathy and possibly EFT soon (which by the way is useful for anxiety too and all sorts). I am basically trying to prepare myself psychologically and physically to coming off the artificial menaupose very soon since it is no longer working. But in the meantime, I am in a bit of a limbo with the lack of support from my PMS specialist(having to arrange my injections myself,since he saw me 6months ago the last time!I have now been referred to an endometriosis specialist but awaiting an appointment. I supsect it will mean going on a pill again (which I did pretty much all of the sorts in the past and never agreed with me!)

    I'll be honest I am not ok but trying to keep going. It's definitely easier to cope with physical pain; it's the severe moods and emotions that are 'breaking' me and feel like I am reversing to what I used to be, and worried of how it's going to pan out with the PMS rapidly getting worse...

    You too take care and let me know how you get on. I hope the Danazol works for you. xx

  • Yeah its weird how a lot of us suffer all of this too. I hate doing any treatments as i feel im playing around with my hormones and they dont cope to well with added crap. Endo will always grow back so u probably do have it im afraid :( i just had my first lap in november there and had no relief from the removal of endo so this is why the rest needs shrunk or i will start to lose organs and my right ovary to go first.

    Yes its very hard to choose what to do as the more ops the more damage, its so unfair isnt it. Its a shame ur specialist isnt dealing with things now but i dont think they know much about endo and dont know what to do with us. My doctor doesnt know even about the hormone treatments but has bn honest with me when she doesnt know which id prefer that than kid on they know it all. Do u take anything for ur depression/anxiety? I have bn given sertraline but to scared to start it yet incase this danazol turns me into a emotional wreck too.

    PMS is a difficult thing to control and i use to be really bad that my work knew exactly when i was due my period lol. I dont think im as bad as i use to be but i can still be a nightmare apparently.

    I hope u have a good sleep 2night tho and we can catch up soon. Message me anytime u need to chat xxxx

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