1. Community
  2. Women's health
  3. Lichen Sclerosus

Mirena & Lichen

Posted , 6 users are following.

dakangelk8
dakangelk8

Hi, I've been dormant awhile on here, trying to get myself in order.

Here's a little about me before I go on to my latest problem

I am 33, Female, 2 children (one is 14 one is 4) I live in the UK

I suffer with an underactive thyroid and LS as well as having bouts of Hidradenitis suppurativa (boils that don't pop) I have also had Rhinitis (just been operated on for this)

I was abused by my Father for many years and I know some people link sexual trauma to LS (not sure I agree on this or not)

I had the mirena coil fit for the first time in 2008.

I have had PCOS and Entrometriosis in the past as well as a large dermoid cyst and other cysts. I had the left ovary removed in 2009 (ish)

After the coil went in I still had periods - softer but still there and more confusing for me was the terrible pain I had in my left "ovary" which had been removed, sometimes it would cripple me and other times it feels like my womb is falling out - terribly heavy feeling pushing down.

At this point I persisted with it until I wanted to have a baby (number two, 10 years after my first) So the coil was removed.

After my Son was born, I had a new Mirena coil fit and found out after a few months that my Thyroid was underactive and was put on medication.

About 2 years ago I developed LS and the boils and the problem with my nose. and lived with it since.

In June I had more surgery to find out what was causing the pain in my left side, they found nothing apart from very large veins in my womb (?)

They also put me a new coil in as they felt it had run it's course.

A month later it fell out. A month after that I had the new one in (15th September 2014)

The month I had this out of my body, I felt like a new me, no flare ups of LS, no spots, HAPPY moods. Didn't put two and two together at the time.

NOW: I'm moody, gaining weight (after doing well and losing a stone in the month I had the coil out!) pain is back in the left side and the heavy feeling in my womb like it's going to fall out of me.

AND the LS has flared up like you wouldn't believe.

Doctors tested my hormone levels when this coild was out too - NORMAL.

Wonder what it would say now?

Long and short is that I am going back to the doctors to have this contraption removed and ask to be sterilised.

After googling LS and Mirena and Mirena and auto immune it came up with some pretty interesting reading.

Please can you tell me im not going mad and this is actually making my auto immune conditions worse? Any similar experiences?

Look forward to hearing back from you all

Thanks in advance and sorry for the long post

 

0 likes, 12 replies

12 Replies

  • Morrell1951
    Morrell1951 dakangelk8

    Posted

    Dak, I think you are very likely correct. I had IUDs in me for two periods when I was young and that heavy feeling sounds familiar. I had it again while using Premarin cream vaginally for my LS (recently – at age 62).

    If you google the Koebner phenomenon (or effect) you'll understand that a foreign object poking at our uterus could trigger a flare of LS.

    Some of us also suspect LS was encouraged by tubal ligations. I had mine at age 43 after the second round of having an IUD. Mine involved two metal clips, which I suspect influence LS.

    Anyway, these comments are only my personal experience and intuitions.

  • suzanne00
    suzanne00 dakangelk8

    Posted

    Hi Dak, I had IUDs for several years, though it was a number of years ago, including the progestasert T (which also had progesterone in it like the marina coil).  While I don't recall having had many problems with it (or maybe I never connected the problems that I had with it), there is no doubt that the marina coil is being connected with the autoimmune issues. I googled marina coil and autoimmune disorders and as you indicated, there is A LOT out there.  Thank goodness you have seen this pattern and are planning to remove it and you will get to see how you do.  That seems very wise!  You have been through so much!  Your experiences sound so difficult.  At least you are on to something hopeful that might make a big difference.  Good luck to you!  We're cheering for you and want to know how it goes!  --Suzanne 
  • marey
    marey dakangelk8

    Posted

    hey daaaaaaak......welcome back !!  Great to have you returned to the fold.

    Think you have precisely worked out that any kind of IUD is bad news....brill that you'll be chucking it ...what took you so long!!?  You are definitely in your right mind about this !!

    oh but getting sterilised? That's not so good. stay on the all natural lines and you'll be ok. you need your hormones to stay in balance.

    love marey xxxxxxxxxxxx

    • marey
      marey dakangelk8

      Posted

      same prob dak...check out causes of LS ....a number of women felt that tubal ligation was the original cause of their probs...if you're working towards recovery you may wish to re-consider? what's wrong with barrier methods and just taking care? even errors can be rectified ....but for example in addition to barrier there is the rhythm method....which helps you to attune to your cycles and the moon and your higher self. there are some lovely books on the subject. a different way of thinking....but to get more grounded and in touch with your body and encouraging your partner to share in that awareness...the women's mysteries type of thing....surely a very positive objective for the new wholesome you...and him?? what do you think dak?
  • Morrell1951
    Morrell1951 dakangelk8

    Posted

    Dak, I vote for vasectomy. Best argument in favour I ever heard.
    • dakangelk8
      dakangelk8 Morrell1951

      Posted

      Coil is out!

      Sterilisation does not affect my hormones in any way so I've been referred should take 3-4 months 

      Condoms til then, the doctor gave me cerazette but I'm not keen to take them?

      Any thoughts? Xx

    • Morrell1951
      Morrell1951 dakangelk8

      Posted

      Have you been on birth control pills before? I couldn't deal with the dose of hormones, but that's just me. There have been some posts on here where it seemed like they put LS into remission. Don't get all excited, it's just a faintly possible upside.
    • dakangelk8
      dakangelk8 Morrell1951

      Posted

      Well the doctor said it was the closest thing to the mirena coil.. That kinda put me off xx
    • Morrell1951
      Morrell1951 dakangelk8

      Posted

      Different delivery method of a similar hormone cocktail, but if the poking of the coil was the problem, maybe the pill will be OK.
  • clarabella44
    clarabella44 dakangelk8

    Posted

    Hello Dak

    I have been diagnosed with LS after having second mirena fitted - which was a right palaver, as the doctor couldn't find it at first and so I had to go to a speicalist.  Think all the prodding about and after 4 attempts, got it out and new one in, I developed LS.  Only just twigged that it was that that probably triggered LS off.  Specialist gave me a steroid cream that been using for 10 weeks and LS calmed down for now but heard it's for life once you have been diagnosed and need to use cream for flare ups.  The other day, I thought I had a hair down there but it was one of my threads poking out from my mirena, which has totally freaked me out and made me wonder if the longer threads, to make it easier to remove next time around, is also aggravating my LS and general area!

    I am very tempted to get it removed but like the fact I don't get really heavy periods whilst using it plus easy contraception.  On the other hand, like the idea of rythum method as natural and I did feel a much nicer, less moody person in few months break I had inbetween mirenas.  A few friends have also had mirena fitted and gone on to take Citalopram for anxiety and depression.  Is this lined too?

    Interested to hear what you think about this...

    Thanks

    • Morrell1951
      Morrell1951 clarabella44

      Posted

      You've reminded me of an IUD I had in my twenties. It was in crooked and stabbed like hell every time I had a menstrual cramp. I bet that didn't help my LS one bit. I really don't think foreign objects poking us here and there are good for LS.
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.