Heavy menstrual bleeding

Hi all, I was diagnosed with 'possibly having Lupus' around 18 months ago and I've been struggling with what symptoms may or may not be associated with the lupus. I have for at least 15 years suffered with heavy and irregular menstrual bleeding despite trying many forms of the pill. It got to the stage 4 years ago where I was pretty much bleeding everyday so I decided, with also having some side effects from the pill, to stop taking it. Nothing changed after I'd stopped, still bleeding most days. I was told to give it 6 months to wait for the pill to fully be out of my body, then I was told to wait another 6 months... anyway to cut a very long story shorter! After being fitted in December last year with a Mirena coil and still having no change in constant bleeding I am now waiting to go into hospital tomorrow to have an Endometrial Ablasion, which basically means they will microwave the lining of my womb, causing it to scar and therefore no longer having periods. I am, as you can imagine terrified, and the closer I get to the day the worse my joint pain has been! I know it's the stress setting off my lupus and I wish I could control my stress better! Anyway, the advice I'm hoping for is, how do you all control stress and does it set off your lupus? Have any of you gone through this procedure? I'm scared of how much pain I may be afterwards! And any advice anyone can give generally I'd appreciate. Thank you all xx

6 Replies

  • I can really sympathise with what you're going through as I had problems with very heavy periods and was told I had endometriosis (which was actually around my intestines rather than gynae), a large fibroid and endometrial ovarian cysts. I was advised to try the mirena like you but knew that adding hormones into the mix was not likely to be successful for me (after infertility issues and numerous hormone tests over the years). I was offered the ablation but I thought that if I was going through this then I might as well go the whole hog and have a hysterectomy which I did at the end of last November. A friend of mine did have the ablation and she found it to be fine - it has made her periods much more bearable. As far as dealing with the stress and worry is concerned, I had (and still sometimes have) huge problems with anxiety leading up to events such as this and found that listening to a hypnosis cd really calmed me down - I used a couple by Paul McKenna (he has a book and CD on stress and one on sleep that I really liked). You can find lots of hypnosis apps out there some of which are free. I have also used herbal stress relief tablets sometimes which I find take the edge off things - you need to check if they are OK alongside anything else you might be taking as herbs have side effects just like anything else. Stress definitely seems to make everything worse as far as lupus and pain are concerned. I hope it all goes well for you with your ablation!

  • Hi Sjogibear, thanks for your reply, yes I also ummmed and ahhhed for a while about just going the whole hog and having a hysterectomy, but after long discussions decided to try this first as if it doesn't work then I can still have a hysterectomy afterwards! My op is this afternoon and I have actually woken up in slightly less pain this morning so fingers crossed! I must add I have a relatively new most wonderful boyfriend who is so understanding of all my medical issues and is picking me up and taking me to the hospital so at least I won't be alone :)

  • Hello MelAlice

    Hopefully you are all done and dusted today and are wondering what you were worrying about. I expect you will be sore for a while like all these procedures but let's hope it does the trick - as you say, you can always go further another time if you need to and let's hope that will be it and you won't need any more surgery.

    It makes such a difference having someone close who understands so make sure you make a big fuss of your boyfriend for being with you at this time - so many men would just run fast in the opposite direction! Please keep us posted on your progress - I do think a lot of these mentrual problems are related to the underlying lupus.

  • Hi I believe that I am quite a bit older than you-but I did suffer from really bad periods (always had-right from the word go really) but I eventually ended up having a hysterectomy as I also had a cyst on one of my ovaries. (My 2 kids were adults by this time anyway) This was all BEFORE diagnosis- I don't know if the 'bad periods' were related to my Lupus-but looking back a lot of other things (anemia-a bout of pneumonia/pleurisy etc) probably all were related to Lupus.

    But really the reason that I have replied is that my best friend had this procedure a good few years ago now (she is NOT a Luppie) and it was very successful....and she was glad she had it done-so I hope you find that reassuring (she still has her womb and all of her bits and is now 55!!!) As for 'stress' and pain levels, yes for me stress does definitely add to my pain- BUT I have had a couple of 'ops' since being diagnosed with Lupus (Carpul Tunnel op on both hands) and the second one was done under a 'general anesthetic' - I was under stress before and walked into the hospital like a really 'old lady'.......it was only later that day-after I came round and my boyfriend and I were sitting eating lunch out that I suddenly realised that I was moving with absolutlely NO PAIN!!!! (And yes I DID dance round my kitchen that night!!!) Oh joy of joys....this did last a good few days and of course my Lupus pain did return-but I did have a nice 'reprieve'!!!! So hopefully for you, it will be the same (of course this is only my experience-but you never know!! ) So please stop worrying, it will only stress you out more :-)

  • I really feel for you and like you I have many symptoms of Lupus bleeding being one of them if I cut myself I bleed for hours, some years ago after giving birth I ended up in ICU needing many units of blood.

    I do hope all goes well for you and this operation does the trick and you can start living again its no life when you are constantly bleeding.

  • Thank you for all your kind replies, unfortunately they had to abandon the procedure, apparently my womb is too small!! So I will have to go ahead with the hysterectomy. I have to see gynaecology again in 4 weeks to discuss it then they'll book me in.

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