Hi, I’ve always had really heavy, irregular and long periods that causes pain to the point where I am nearly passing out, but recently this has worsened. I have had an IUD put in which I know can cause heavier, longer and more painful periods, however I had this inserted a year and a half ago and I am still experiencing the same symptoms. My periods last for months at a time often only giving me relief for one or two days with slight spotting, however the pain is excruciating and I have constant abdomen and back pain while also having unbelievable trouble and pain going to the toilet. I have recently struggled with dairy and have developed a intolerance for it which worsens my symptoms even further somehow, but I’m not sure if I’m just overreacting or whether this is a genuine concern.
Am I giving a wrong self diagnosis or is ... - Endometriosis UK
Am I giving a wrong self diagnosis or is this a genuine cause for concern?
It definitely sounds like you are in a lot of pain & there could be something more going on. Your periods obviously have really been impacting your life, and that is something to be concerned about. If you haven't yet gone to an endo specialist/gynae, you should go soon and get some help because your symptoms seem unbearable. I am not sure if the IUD should have made your periods heavier, and longer either...that's not really what they are supposed to do. I think that you know your body, and you know when something isn't feeling right xxx
Sounds like you’re really suffering, and it’s time to go to the doctor and tell them how it’s been. Take care.
Depends what is in the IUD...
Most have oestrogen and progesterone, and if you have endometriosis, then you almost certainly don't need, or want, more oestrogen, as this can be a factor in making endo worse.
I had a mirena coil inserted in my early 50s, after a lifetime of endo pain (although probably mild compared to many women's experiences). I had spent most of my adult years on the pill - which helped with the pain) but it's not ideal, and I was made to stop it at 50, when the endo pains got so much worse. After seeing someone privately, I had the Mirena inserted on the NHS and the next 5+ years were bliss … and all fine since having it removed post-menopause.
Sorry, hadn't finished. NB Mirena coils are progesterone only, which counteracts the oestrogen that can accelerate the build up of endo tissue.
However, first: you should have had investigations to find out - exactly- what is going on in your abdominal cavity to cause so much pain. If you are in the UK, your GP should refer you to a gynae who specialises in Endo, and if the gynae then thinks that your condition qualifies you, he should then suggest an 'investigative laparoscopy'. This should not to remove the endo tissue, willy-nilly - as some non-endo specialist gynaes still do! - as this can lead to regrowth that is worse.
If you are found to have endo tissue in dodgy areas, or causing worrying effects (eg Endo can cause different organs in the abdominal cavity to adhere to each other: hence pain!). There are lots of reasons such as this, which they can spot, and which should then be referred onto a 'Specialist Endo clinic' where they know what they are looking for, and what to separate and which tissues to remove ... safely.
Sadly, referrals to these specialist BSGE endo-clinics, do not happen often enough - and I guess things are much worse at the moment.
You need to read up about Endo as much as possible, using reliable info. and also find out what you rights are - depending on where you live. NB the endo /BSGE Clinics that I have referred to above, are only in UK.
Hope this helps. Most GPs are hopeless on Endo, you need to find out who is the best in your doctor's practice.
Thank you, I definitely will read up as much as I can. My IUD is the copper coil rather than the hormone IUD as I do not do very well with hormonal contraceptives, however I don’t want my IUD to be a scapegoat as to what’s causing my pain as I am afraid this will probably happen. I will get as much info as possible and have a GP appointment next week so will try to go in as prepared as possible. Thank you for the info and will post updates as to how I go on. 😊
Hi I was diagnosed with endometriosis bout 3years ago and I had the mirena coil fitted and it hasn't done nothing at all for me still bleed heavy and still have a lot of pain when on my period and even have a lot of pain when I'm not I still have it in now but it hasn't and doesn't help so it just there for not the write reasons if that make sense have u been diagnosed at all x
I’ve not been diagnosed yet, but know something is very wrong. I have an appointment to see my GP, but am afraid my symptoms will be passed off as my coil ‘settling’. However, I have had my coil in for 18 months now so the settling period should have passed. I am the same, I have a lot of pain before, during and after my period, but I had that before my coil was inserted and wanted it to stop which is part of the reason I had it inserted in the first place. My bleeding is very heavy and over a span of months which heavily effects my life, but hoping I don’t get palmed off as things being because of my coil.
I no what u saying but as u said u have had it in now for 18months and there is no difference just make sure u tell them nothing has changed do u have any other symptoms apart from ur heavy and pain periods if u dont mind me asking
No, not at all, I have a lot of trouble going to the toilet and pain when I do as well as feeling very sick and dizzy constantly which at first I put down to maybe vertigo? But reading up on some symptoms I’m not sure if it’s connected.
The symptoms I had altogether was pain all the time in my pelvic area as well as in my ovaries more intense pain while on my period so much so I could hardly walk would also get very heavy periods with very little clotting also I have lower back pain pain during sex and sometimes after sex to bleeding after sex sometimes to and now I have more symptoms of pain when peeing sometimes and constipation or diarrhoea if they helps u at all
All of those describe the daily routine, lower back and abdominal pain is the usual and constipation as well. Sex is a complete no go as I am in agony and shooting pains in my ovaries happen every now and again. It effects everything I do and feel like I’ve had enough with the daily pains now. I’m keeping a diary to record the pains and bleeding patterns just so I have a record of everything that’s going on.
Im no doctor but if ur having all those symptoms then yea it does sound very much like endometriosis thats the best thing to do and when u go and see ur gp then show it to him/her and tell them that nothing has changed since having the coil fitted I had a Brill gp that said to me be4 I had be referred to the hospital that she was 99.9% certain that I had the condition she was very good just dont let them fob u of hun tell them ur sick and tired living like this and as for feeling the way u do endometriosis does have a massive impacted on ur mental health it's so horrible I wouldnt wish it on my worse enemy really hope they get it sorted for u hun
Hey, so sorry you are having so much trouble. The copper coil is renounced for causing heavier more painful periods. I have a mirena coil and it was the best thing I ever did. Individuals get affected differently so try to read into horror stories as it may be the best thing for you. Hope all goes well cx
Not what you're looking for?
You may also like...
Am I letting my health anxiety get the better of me or should I be concerned?
Wrong diagnosis
I give up! i think its endometriosis!
Hi, i was diagnosed with stage 2 endo in 2017 and i am now concerned i have Rectovaginal endo.
Do I have endo or am I being overly concerned?
Advice needed - Am I losing my mind 
Self diagnosis looking for solutions
Do I need the diagnosis?
I am sure they have used the wrong thread - Help!
No endo on MRI - what did they find on your lap?
