Anyone had success with Mirena for endo?

[Trillian]

Hey everyone, just wanted to ask if any of you have had success with this? I'm having a lap and hysteroscopy/D&C done on december 5 and I'm having the mirena put in then too because my Gyno said it would be very similar to taking oral meds like I did last time (Duphaston) in that it would give me a constant dose of hormones and it would have the benefit of being in there for a few years etc.

And did any of you experience any adverse side effects from it?

[joel's girl]

Hi dear,

This is the best option that my specialist mentioned to me after I have this bub. He said its an excellent alternative to many pills, has minimal side effects, keeps endo at bay for years to get me thru to menopause.

I will be getting one in the new year !!!

[MantaRay]

Trillian, I had one for contraceptive reasons and it certainly made AF lighter and less frequent. I had spotting for the first 6 weeks, but then no real side effects. In fact I found it much better than the awful hormonal mood swings on the pill. I have had it removed now, and that was really quick, easy and painless, so it's good to know that if it doesn't work out for any reason, removing it is no hassle.

Best of luck. I hope it works for you.

[Trillian]

Thanks, both of you

Cindy, that's what I'm hoping! I hope it works well for you too when you get it in - I'll be sure to let you know how I'm going with it.

Mel, when you had it out, was it done by your Dr and how do they do it? Do they just use a speculum?

[MantaRay]

Yep. My ob/gyn who fitted it also removed it. Just a speculum like for a pap smear and just as quick. She said I might have some mild cramping afterwards but I didn't.

[Willow]

Trillian - I was planning on having one inserted for that reason. I dont' have endo symptoms as such, but had a large endometrioma (cyst) removed from my left ovary which caused secondary infertility. So I'm eager to stop that happening again.

I haven't had it done yet and am actually having second thoughts...going through IVF makes it seem a bit crazy to remove any chance (no matter how small) of a natural conception so I'm a bit torn over it still.

My gyno/ob is starting a study this year with endo patients. They will undergo a lap and have a mirena inserted. The hope is that it has a significan affect on the endo returning. He says he has anecdotal evidence that it can significantly reduce the recurrence of endo.

[joel's girl]

I've heard the same Willow. My dr has been running a study for the past six or so years now and he bases his opinion that mirena is the best long term option as seen by those study results.

Ive got a good feeling about this sherie. I think you going to be pleasantly surprised how good you'll feel in a few months sweet.

I've got everything crossed for you.

[Kitty_Angel]

I had my first mirena inserted in 2003 (I was in my early 20s) and am onto my second (got this in mid-2008). I have never had children and am not sure I can. I have severe recurrent endometriosis which was discovered about 8 years ago but I'm so sure I've had it longer than that - more like, 'since forever'. Mirena was recommended as a 'treatment' to improve my symptoms (heavy bleeding, cramping etc, and therefore hopefully to keep it 'at bay'.

I had the first mirena inserted during my second laparotomy (yes both times I've been cut wiiiiiide open and in different directions too -- I am sporting a very trendy vertical scar, and a fancy horizontal scar and they were both keloid (don't get me started on that... that's a whole book in itself) as well... how lucky was I?) to remove the endo (so I was under general anaesthetic) and had scarier things to worry about LOL!

For the second mirena my doctor recommended I go under a general anaesthetic (for my comfort) to have it inserted which I did. I had a little spotting afterwards but since then I've been fine.

Some women complain about weight gain - well I had my first mirena experience when I was recovering from major surgery and I expected to put weight on anyway as I couldn't move around very much (added about 5kg). It took about a year for me to start feeling good enough to exercise again and feel 'normal' and eventually I lost about half the weight I'd put on. My periods got lighter within about 4 to 6 months (they were very heavy previously) and eventually I got to the point where I had no bleeding for like 2 to 3 months! (Apparently this is not unusual, and it's nice not to have periods).

Other women mention mood swings after getting a mirena. Initially I'd say for the first 2 months after insertion I was quite touchy/sensitive and moody and overemotional - I def. did not feel my normal self (that on top of being 'reminded' of my illness again and how it's getting close to CRUNCH time when I have to decide (or let it be decided for me by doing nothing) whether I want my own kids or not cuz I still have no idea). But now I actually feel more stable than what I was before having the mirena.

Towards the end of my first mirena I found my periods getting somewhat heavier and cramping starting to return (about 4 months short of the 5 year anniversary) again.

Several months after having my second mirena I put on about 4kg. In the last 3 months I have increased my exercise from pilates once or twice a week to include cardio, walking and light weights and have managed to shift that weight and then some. The only challenge now will be to keep it off.

The only thing I don't like is my hair and skin feel much greasier than ever before (I didn't have this problem on the first mirena so it seems odd to me) but it's only a minor annoyance compared to all the benefits.

As for my endometriosis, well, I just keep going for annual scans and keep getting the same "it's still there" or "it's growing (but perhaps not so rapidly as it did previously)" but doctors don't want to do more surgery if they can help it as it just reduces what fertility I may have (which means cutting and resectioning my ovary tissue where the endo is the worst), but doing nothing can also damage my fertility anyway as the endo grows and 'pushes out' onto my healthy tissue. I'll just plod along... trying to stay as *healthy* as I can.

So would I say I've had success with it? Sure, when it comes to symptoms it's been great - just about wiped all my symptoms out and I'm so grateful I can lead an 'almost' normal life. As for keeping the endo itself at bay? Perhaps it's helping that too ... I try to stay positive... but I'm just not sure.

I hope my story has helped you in some way in terms of what you might expect.

Anyway, I figure by now you will be recuperating from your surgery - hope you are feeling better and on the mend.

[Trillian]

Hi Kitty and thank you so much for you response! Its great to hear that you've had a positive experience with it. So far things are going OK - my recovery was good (although took a bit longer than my first one ,but that would be expected cause I wasn't chasing after four kids that time LOL) and I'm not quite sure if I like the mirena yet. I am a bit moody (OK, so probably more than a bit ) and I haven't had any weight gain, but it's not so easy to lose the weight I need to loose (about 20kg overweight). I have had a fair bit of spotting though, especially after DTD so I am going to ask my gyn about that when I see him in a month. Also, I'm still getting all the usual cramps I get, but not as bad. I'm hoping that like you, this will all settle down in another month or so.

[Kitty_Angel]

You're welcome Trillian. Just take it easy on yourself and keep us posted ok?

I'm just so glad I found this forum - up until now I didn't know of anyone else going along with mirena for endo so it'll be interesting to see how others, like yourself, are coping.

[chris]

Hi
I am thinking about the Mirena to help me with my endo.
I was worried about the weight gain as it has provera (hormone in it).
When I was on Depo Provera I was very moody and I gained alot of weight.
I had to take a high dose of provera after my M/C and it also made me gain weight.

Have any of you girls been on any provera / progesterone hormone treatment? Did you have side affects from it??

I have read so many bad stories about what can happen!!!

I hope you have a pleasant experience with it.
Take care
Chris

[Kitty_Angel]

Hi
I am thinking about the Mirena to help me with my endo.
I was worried about the weight gain as it has provera (hormone in it).
When I was on Depo Provera I was very moody and I gained alot of weight.
I had to take a high dose of provera after my M/C and it also made me gain weight.

Have any of you girls been on any provera / progesterone hormone treatment? Did you have side affects from it??

I have read so many bad stories about what can happen!!!

I hope you have a pleasant experience with it.
Take care
Chris

Hi Chris,

I was put on oral provera for about 5 months before my second laparotomy (and it was during that lap that I got my first mirena). I probably gained about 1 or 2 kilos, extreme breast tenderness, had the mood swings and also had some pimple breakouts which was never a problem for me before. My specialist had prescribed this for me as just a temporary measure to try and reduce or slow down the growths before I went in for my next surgery - whether it actually did anything in that regard I'm not so sure.

I have to say though, overall, I much prefer the Mirena over the oral provera, as the side effects seemed to dissipate over time, with the provera (and bearing in mind I was only on it for 5 months) the side effects seemed to remain the same for me during the course of the treatment.

Hope this helps!

[Ducky]

I'm interested how it affects sex, to my understanding it has to little wires sort of hanging out.

[MantaRay]

Ducky, the wires are there so that it can be easily removed. They are very high up in the cervix, and when fitted properly they can't be felt. It shouldn't affect sex at all.

[chris]

Thanks Kitty angel

I was on depo provera for 6 months and put on 40kg .
The Gyn then put me on the pill but I didn't really loose or put on weight on it. In that 12 months I ate a healthy diet and I am was walking regularly.

It just seems that every time I have progest hormone it reacts with me (except when I am preg as I loose weight then). I get mood swings and weight gain so I don't know if it will be worth trying. I have got enough going wrong with me at the moment with out adding another. I'd be constantly analysing myself.

thanks
Chris