Lost in this new world: After 5 months of... - Endometriosis UK

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Lost in this new world

27Robbo profile image
5 Replies

After 5 months of random pains in my womb n ovary, i was told following at lap that they had found endometriosis..... what a bummer. From the pics that were taken it looked bad to me but was informed they removed it and put a marina coil in to stop the pain. Now 5 weeks after my lap the pains are worse. I am totally confused and lost. Some days am fine then when i relax the pains come back, other times the pains last for days to the point i am in tears as i just don't know what to do. I am not back to see my consultant till june so just looking for any tips to ease things. I know everyone is different but i feel so lost n on my own, the only people i personally know with this is my mum n she s having everything removed. Am 24 with no kids so its just not an option.

Any recommendations or information would be a massive help.

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27Robbo profile image
27Robbo
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5 Replies
worth71 profile image
worth71

My mirena caused me more pain for several weeks, maybe it's that, but to be honest my mirena never helped with any pain it helped with heavy flow though but I had it removed a couple of weeks after 18 months of it being in xx

Impatient profile image
Impatient

The mirena coil takes about 5 months to get working and to stop your periods and your period pains.

Up until it starts working, it's normal periods so you have to carry on with the usual methods of coping, ie pain relief (lots of it.)

Unless you also want to try GnRH drugs to stop your periods after 2 weeks till the mirena kicks in, though those drugs can actually give you all sorts of other pains and horrid side effects too as they are cancer drugs and there never was a cancer drug that leaves it's patients feeling like they are floating on fluffy pink clouds for side effects.

Personally from my own research and experience I wouldn't touch those with a barge pole. At least with pain killers you control the dosage as and when you need it.

A properly placed mirena should not be felt. and having one put in while you were having an op should mean it was scanned to show it was in the right location.

They can slip out or shift about for a few early weeks until they build up enough uterus 'goop' for want of a better phrase, to hold them in place to do their job. The mirena might give you side effects while the change in hormone balance in your body settles down.

5 weeks post surgery is still early days and not all your wounds inside will have healed up properly yet, even though the holes probably have, inside could still be recovering.

There is no reason that I am aware of to prevent you taking back to back BC pills to stop your periods in the interim till the mirena gets to work. It would certinly be a lot less risky than GnRH drugs would be.

Once the mirena does start doing what it is supposed to so, ie stop your periods, it's fantastic thing to not have to worry about. You can have it removed, but be absolutely certain that it is the coil that is causing your pains and not just post op recovery and your normal periods affecting your endo. Both of which will still be there is the coil is taken out.

I would recommend that you keep taking pain relief and do try and give that little mirena a decent chance to work. It transformed my life once it got going.

vicner profile image
vicner

I really feel for you and how you feel " lost in this new world" I took me over 3 years of constant pain before i got a diagnoses. Which at the time was a relief to know that i wasnt just imagining the pain. I am due to to have my hysterectomy on Monday, and although it sound strange i cant wait. I just want this stage of my life over!

I have the mirena up unitl last june and although i still had incredible pain all the time, boy did i realise how much relief it had given me once i had it removed. I have had prostap and the first course worked really well for me but the second one has had little effect, but i am told this was because i was allowed to start ovulating again just needs time to work.

Please give it a litlle longer to work, contact your gp and see if there are any other pain killers they can give you.

The other thing you need is to use this site alot, for information, ranting, and aything else you need. Everyone on here is really helpful and we are all in the same boat.

There is some evidence that the endo diet is good for removing some of the symptoms, this is quite a strict diet though,

Wish you all the best in finding something that works for you xx

27Robbo profile image
27Robbo

Thank you so much ladies, nice to know others have an understanding.

this is my second coil so am not sure its that, that is causing the pains as it never did.... But i guess only time will tell.

i need to try some things out as it is really impacting upon my work so back to the gp i go.

x

samovar profile image
samovar

Don't be afraid , everything will work out for you.

I have endo 3 stage ,had 3 laporoscopies ( didn't take any other medication, not even painkillers because very skeptical about all of them , sorry it not helpful probably ) I have 2 kids and I believe that God will help U and smile at U !

God Bless U !

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