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Endometriosis Community
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Avatar universal

Mirena/Endo/Chronic Pain Advice

I've never had heavy or painful periods. As I've gotten older they have decreased to the point where I have maybe 1-2 days of light spotting (I'm now 36), no pain, no bloating, no headaches and no mood changes. Having said that I do have chronic abdominal pain all the time. Incapacitating pain which requires me to take heavy painkillers just to get out of bed each day. We've ruled out all stomach related or allergy related issues. Now my Dr's are saying I have endometriosis. I've had a laparscopy which has shown that I do have some endo there, albeit quite old. They tell me this is the reason for my pain now, probably because they can't find anything else. My latest suggestion is to try a Mirena device. I've read up on side effects etc and am very concerned. I don't have typical symptoms. I have chronic pain all the time and not exclusively in the pelvic area or around a "typical" period. I DO NOT have periods or any related symptoms. We have tried colonoscopies, endoscopoies and laparoscopies with no other conclusion but that there is old endometriosis there. Quite frankly, I'm scared of having Mirena implanted since everything I've read indicates it's better for people who suffer from heavy periods who want relief and birth control. I already know I cannot have children due to policystic ovary damage when I was younger. I also have a duplex left kidney that leads to regular infection and causes UTI's - which is a different pain to that which incapacitates me as I've had it all my life and have learnt to live with it.
I just need help/advice/opinions. I'm completely at a loss and terrified that the Mirena will cause side affects that I really don't need on top of all the rest :-P
5 Responses
136956 tn?1425609872
So question here. Did they remove the old Endo? I hope to God they did.

All Endo needs to be excised (cut out) to find relief. Laser will leave behind Carbon residue and cause pain along with more adhesion's than if it were cut out.

Have you had your bladder looked at? Have you heard of interstitial cystitis?  

Also where was the Endo found? I really hope to God you tell me they removed it not left it.

When it comes to Endo any med you take the purpose is for it to suppress your periods, no period no pain. It does not stop the Endo from growing.

I have heard 50/50 reviews for the Mirena.

If you have had previous pelvic infections like PID or Bacterial Vaginosis I would not take it as it could put you at risk for reccurance.
Avatar universal
Thank you. I know... too many questions!
The endo has not been removed. I have two fairly large sections of it. One has led to my left ovary being completely stuck down and the other section is a fairly advanced portion that has led to the adhesion of a portion of my bladder to the uterus. I was informed a year ago that the best option would be a hysterectomy. As I cannot have children anyway I was ok with this but because of my age and the fact that I have no children they are reluctant to do it. I am 36. Potentially I have 14 years in which I could still "safely" conceive. Although since both my ovaries are policystic I doubt that is going to happen - especially when you consider that I don't actually have periods anyway. I have VERY minimal spotting once every few months and do not have an increase in pain when this happens. It is inconsistent and there can be a period of 5-6 months before I get even the spotting. I do not get mood swings, headaches, breakouts of bloating. I barely notice that my "period" has happened. Having said that, my abdominal/pelvic pain is constant and chronic.
I am on the waiting list to have my bladder looked at further. I have not heard of interstitial cystitis. Although I am familiar with the term cystitis. During my last endoscopy in January 2013 the urologists came in to have a look and biopsied the bladder with the conclusion that as a result of the long term UTI's and kidney related problems the interior wall of my bladder is heavily scared and "rough". Although they assure me this is not the cause of my pain and I tend to agree since I've dealt with UTI's since I was born. My kidney reflux and UTI pain is something quite apart from what I have been experiencing chronically for the past 3 years. That old pain and discomfort I can manage - this newer pain is having a hugely debilitating effect on my lifestyle to the point where I cannot work (I am a Personal Trainer by trade and am therefore a very fit and otherwise healthy person) or get out of bed most days.
I understand that typical endo can have similar effects (i.e. the pain - although I experience no other symptoms and it is not better or worse during my few and far between cycles) and I have been told that mirena can be very helpful in managing the symptoms. In any case I expect they will end up either lasering the endo out or performing a hysterectomy but for the meantime I am pretty much being forced to have the Mirena in case it helps. My concern is the side effects. Since I never have any of the usual period symptoms and don't get spotting very often, I am worried about the reviews that I have read that indicate that I might suffer mood swings, continual spotting, loss of sex drive, pimples, weight gain, etc...
Prior to the laparoscopy diagnosis of the endo I had nothing but good PAP smear results and have never had any sexually transmitted or bacterial infections or diseases.
I have done as much reading on the Mirena device as possible and really am not sure it will help. I am reluctant to have anything inserted in me that I do not know will work and am really wondering if anyone else has had similar problems and been successful or otherwise with Mirena. I understand that my symptoms are not typical of most endo sufferers. Hence my questions. I know I have it but it has NEVER caused me pain in the past and it is really old. All my reading tells me that once it starts to develop and spread is when the most pain occurs. Mine has been there a good many years and apparently has only relatively recently been a problem.
I was on the pill (since I was 16 until I turned 34 - a good portion of time). The chronic pain started well before I stopped taking the pill and has not in any way decreased since I stopped. Nor would I say it has increased... it's just the trial of 3 years of chronic pain that has worn me down. I don't think taking or not taking the pill has made any difference and my doctors tend to agree.
I'm sorry, I know this is very lengthy and there are lots of questions. I just really want to know if there is something else I should be doing or looking at before trying Mirena which I am not at all sure will help and may even produce symptoms and side effects that I would be better off without.
Thanks again for any help you can give.
790669 tn?1465192699
Hi there :)  Sorry for your pain..I have endo also but the pain it causes me is awful, plus I have cysts, big ones.  I'm having surgery Thursday for the 2nd time to remove all of this :) .  Anyways, I've never had the Mirena but I know 2 people who have.  1,) my cousin..had it put in and within 2-3 weeks had an infection from it..THEN after getting that cleared up, about 4 months down the road it was causing her to bleed constantly.  
2.) was a friend..had it put it and over time began hurting, pain constantly..cramping and after having test done they said it had inbedded into her uterine wall.
Now I know this won't happen to everyone, but as far as myself..I'd never have it.  I would do birth control continuiously.. at least with that I have a choice of stopping it when I want to.. it's not a foreign object in my body that can do damage before I realize it.. Completely up to you, just read your story and wanted to offer what little bit I knew about  it :).  Best of luck!!  And hoping you can figure out something to help with all of this. :)  Keep us posted please! :D
790669 tn?1465192699
Also wanted to add that just because your endo is "old" doesn't mean it can't bother you.  When you have your period, your endo spots bleed as well.  How long ago was your surgery?
Avatar universal
Thank you. That is really helpful. I don't know anyone who has had a Mirena put in so I'm flying blind. I am meant to have it inserted today. All the possible side effects and troubles I am hearing and reading about really concern me. I don't like the idea of a foreign thing in my body either but then I can't go on with this pain as I am now completely non-functional as a result.
My surgery was in January. Since I don't bleed at all and spot for a day at most once every few months I am worried that not only will I have to contend with constant pain but also add in the bleeding and other possible reactions to having the Mirena in,
I appreciate all your interest and will keep you updated.
Wish me luck!
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