Endometriosis and mirena

Hello guys ,

I've had servere endometriosis since I was 17 iam now 30 with no birth children of my own . I've been told I can either have the coil put in under general anatheistic or have a hysterectomy. Iam just wondering how many of you who has had the mirena coil put in it has been a great success for you and whether you think the mirena or hysterectomy would be better . Iam mostly bed bound and on oxycondone , I have no life what's so ever ........ so any help would be greatly appreciated


4 Replies

  • Hi hun.

    I'm sorry to hear about your pain and suffering due to endo.

    The Mirena is a very love hate thing, I personally didn't have a good experience with it they told me that it would stop my bleeding but it's normal to experience spotting, i bleed heavily for 3 months solid, I also got a lot of side effects with it bad back, hip pain, acne, weight gain, depression.

    However I now people who have had it and it's been fantastic they haven't had any bleeding at all and no pain.

    I think you need to read up on it as nobody can predict how your body will react? So you can make a well informed choice.

    As to hysterectomy I'm unsure why they have said this as a hysterectomy won't cure endo it can continue to grow and attach itself to other organs.

    I really hope you get this resolved soon hun xx

  • I personally have reacted well to the marina coil and love it. It did however take 5/6 months to settle and the first 3/4 months was constant bleeding and horrible side effects that go with PMS. it effects everyone completely different and by the sounds of it emdro suffers tend to get it bad for the first few months.

  • Hi, I'm sorry to hear of your experience and appalled you are given such antiquated treatment options such as hysterectomy.

    Is your gynaecologist an endo specialist or a general gynaecologist?

    Unfortunately endo is complex and comes in different forms meaning a general gynaecologist more than likely lacks the experience and skill to (a) recognise endo in all its forms and (b) surgically excise it (ie cut it out). General gynaecologists' interests lay in the reproductive organs but endo unfortunately can effect other areas too such us the bowel, bladder, the peritoneal lining and, although rare, even the kidneys, lungs and brain. If not excised properly and thoroughly pain may continue.

    Given endo is a complex disease specialist accredited endo centres have been set up nationwide which have a specialist teams consisting of endo gynaecologists, colorectal surgeons, urologists and pain management specialists. If a person is suspected of having or have formally be diagnosed as having endo they have the right to be referred to a centre of their choice. A list of these centres can be found at the following website by clicking on the tab "Endometriosis Centres" and then "BSGE Accredited Centres":


    Unfortunately it is possible your GP and even gynaecologist has not heard of these centres - my GP hadn't until recently when I printed off the list and gave it to her! Please bear in mind most are NHS but I know of at least one that is private only (Elland Spire Hospital) so if you at some stage need to be referred to one unless you have the funds or private health insurance ensure they are an NHS accredited centre.

    With regards to treatment options unfortunately there is currently no cure for endo and this includes hysterectomy.

    Often women with endo have to educate themselves rather than rely on their GP's or the so-called specialists. Unfortunately I know from personal experience and from reading others' posts on this forum that the myths still exist amongst the medical professions ranging from "its normal, deal with it" to "a hysterectomy cures endo" or "getting pregnant cures endo". There is a woman on this site, called Lindle, who has recently posted in detail about rectovaginal endo and its worth reading. She has also posted other interesting reads on endo.

    For reference hysterectomy rarely cures endo because endo may be on other non-reproductive parts of the body such as those I mentioned above meaning if this isn't thoroughly removed it is likely symptoms will continue to exist as the endo is still there.

    Furthermore, endo is widely believed to be oestrogen driven and even after hysterectomy with oophorectomy (ie ovaries removed) the body still excretes certain oestrogens. If you'd like to know more about this again Lindle has posted on here regarding this subject quite recently so search and you will find this. Also endo is complex and there is still a great deal unknown about this disease, including the exact mechanisms and causes involved. There is new research coming out all the time including a link with it possibly being an autoimmune disease. Therefore I cannot understand why still in the year 2015 some so-called medical professionals are still giving out such antiquated advice as to suggest hysterectomy or even pregnancy is a cure!

    Pregnancy is no guarantee of a cure either, although there are some reported cases of symptoms either reducing or being eradicated entirely during and even after pregnancy. However, in the main symptoms are merely dampened down during pregnancy only to return afterwards.

    For reference hysterectomy is a cure for a condition similar to endo called adenomyosis which is often called a "cousin" to endo. It differs however in that it effects the muscle of the uterus walls where endo does not grow. So unless you have been diagnosed with this or another disease which can be treated by hysterectomy there is no reason a medical professional should be recommending this as a treatment option.

    Hormone based treatments such as the pill, the coil, Zoladex etc, are considered initial treatment options, although in the main tend to dampen down symptoms more, though can slow endos progression also. It is sometimes worth trying these first to see if it provides you with the relief you need. The decision to try the merina coil is a personal one as no one can unfortunately guarantee your experience or the effectiveness. Some women seem to benefit from it whilst others do not.

    However if you have been diagnosed with severe endo you really need to be seen by an accredited BSGE endo centre to ensure no further complications due to inadequate treatment.

    The gold standard of surgical treatment is excision surgery (ie cutting it out) as opposed to burning it off with a laser (though please bear in mind some surgeons use the laser to cut with too). Burning endo is less effective as it tends to just remove the top rather then remove it from the root meaning, much like a weed, it is more likely to grow back. However, as there is no cure even with good excision surgery endo can, though not always, grow back and it's often said this is after approx. 5 years.

    Unfortunately it is really important that women reduce the number of surgeries they have in their lifetime as apart from the usual risks associated with any surgery, with abdominal surgery there is the risk of scar tissue and adhesions forming which can cause pain and other issues in themselves.

    As endo is regarded as being oestrogen driven woman can also help themselves by following the endo diet as strictly as possible. I found that following this combined with daily exercise and reducing my stress levels where possible reduced my symptoms to a more manageable level for a good number of years before requiring treatment again. If you search the Internet or even this website you will find more information on the endo diet.

    I hope this helps and I wish you all the best, x

  • Hi, well for me I've had the coil in for nearly a year and I'm still in a lot of pain. I still bleed,but I have got to say it's no where near the same amount as before and I'm not losing loads of huge clots sorry for tmi, I still have chronic back pain .Leg pain, bowel issues and the feeling I've got a uti even when sample is clear, my stomach still burns with the hot poker feeling the stabbing sensation is the same. I get head aches that that put me to bed, mood swings are the same. I still get really anxious. Exhausted and low the only added bonus is now I get acne... But they still want me to keep it in ?? And they look at me funny when I say ( it's not working ) I'm not saying it's not worked for many women but it's not worked for me. Big hugs kx

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