Endometriosis Community
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Avatar universal

Paragard IUD and Endometriosis

I am 24 years old and just recently had surgery to remove a endometrioma/cyst and was then diagnosed with endo. I had a Paragard IUD inserted about 2 and a half years ago because it was non-hormonal and would last for 12 years. The IUD definitely increased my menstrual cramps (TERRIBLE cramps), and about a year or so into having the IUD I started getting symptoms that I now know were caused by the endometriosis. I am going to get the IUD removed now because I don't want anything causing irritation in my uterus, but has anyone had this problem. I never had bad periods until the IUD. I know "they" don't know what causes endometriosis but it wasn't until I had the IUD, which works by causing inflammation and irritation of the endometrial tissue, that I had problems. Any thoughts? Thanks!
18 Responses
Avatar universal
I had the Mirena IUD put in last May and thought it was wonderful because I have not had a period since. Now I have been in excruciating pain for about a week. The pelvic ultrasound was negative and my OBGYN thinks I have endometriosis. My surgery is in about 2 weeks.  I seem to have all the symptoms.  I think the IUD has something to do with it.  It is interesting to read of so many people with the same issues with IUD's.  
Avatar universal
I have also had a paragard IUD placed, and have had it for almost 2 years. I had extreme periods for the first year, both flow and pain intensity. The flow seems to have tempered, (although not to where I was before the IUD) but the pain is still pretty intense. In the last 6-8 months I have noticed other symptoms which I have yet to see a doctor for but I am concerned it is similar to symptoms of endometriois, including a 4 month bout with what I thought was a UTI but no doctor could find an infection, nor did the antibiotics or 'pain relief' help. I've developed Raynauds. I now have cramping all through the month, rather than just around my scheduled menstrual cycle and occasionally spot. I have other symptoms that coincide with endometriosis that all developed after I had it placed. I am seeing a doctor next week with my laundry list of symptoms and my ideas of the connection to my IUD. I'll let you know the outcome.
Avatar universal
I had the same problems that you are talking about when it comes to symptoms getting worse after the insertion of the IUD. I had my IUD inserted and a couple of months later, my symptoms (cramping all the time, excrutiating pain, bowel issues, etc.) seemed to appear out of nowhere. I have since had a laparoscopy and they did find endometriosis, scar tissue, and adhesions. My doctor informed me that the hormones in the Mirena IUD are not enough to mask the symptoms of endometriosis like regular birth control pills are. While I was blaming the IUD, it was actually just the fact that I was not on the right kind of birth control to treat the symptoms. My doctor is now wanting to remove the IUD and use a different hormonal birth control.
Avatar universal
At what point do the symptoms from an IUD no longer become normal and warrant removal of the IUD?  I can handle the heavier periods but the pain is excruciating.  I've had my paraguard IUD for 3 months.  For those with severe cramping like me, did the pain ever subside?  if so how long did that take?  I too am starting to be concerned about endometriosis.  HELP!
Avatar universal
I had a problem free pregnancy at age 24 (pregnant immediately, suggesting no 'endo').   No problems with cramping at periods.   I got an IUD (copper) around age 32 and have had nothing but problems since then.   I had the horribly long periods with awful cramps.   I finally had it removed after about 3 years.   My periods were less but still heavier than before and more cramping than before.
I recently had trouble becoming pregnant (age 38).   I had a laporoscopic surgery and the doctor found extensive endometriosis.
Coincidence?   No family history of endometriosis... (nor anyone in my family that has ever had any trouble getting pregnant) so I don't know.
Avatar universal
I am seriously considering a lawsuit. It's crazy how much pain and suffering this has caused me. I am glad to see we are all not alone. I am sure there are more possible women out there that are now suffering from this and haven't connected it yet. I promise I will try to prove this one way or another. Anyone in here interested please email me @ ***@****
136956 tn?1425606272
It is so unfortunate that this disease is so debilitating for women and that so many women suffer from this disease and there is so little they know about it.

I have dealt with Endometriosis since my second period at 13 only to be diagnosed 14 yrs later. The damage had been done and I have done so much research on this disease and I am an advocate.

I will tell you guys something if a doctor tells you that they are giving you these meds, IUD's etc to suppress the Endo that is a huge misconception because Endo can not be suppressed and the only way to find any kind of relief is to find a surgeon who knows how to excise the disease completely leaving nothing behind.

HRT's and IUD are said to help but they don't. The only good if you are suppressing your period, so no period no pain. However it doesn't work for everyone.

I actually wrote a letter the Canadian Health Ministry about the lack of surgeons and this disease. We will see what happens
Avatar universal
I believe a lot of us never even had this disease until after Implantation  of this IUD. The Mirena already has cases relating to Endo. I never had to battle with this disease and I am still not convinced completely I  have it since I haven't had a Laparoscopy done yet but they have found tissue implanted by my Rectus Muscle and now they say I may have multiples.  
136956 tn?1425606272
hmmm Interesting. Its funny because they try to push the mirena for Stage IV Endo. I would never have that put in, just because I just dont like the fact that something is inside me
136956 tn?1425606272
I did want to to say I did my research and I do believe in Dr.Redwines response to me as he has researched this disease and operated on over 3000 women with Endometriosis that have used IUD's and who have not.

It is possible that you had Endo but didn't realize it as many women do no matter what stage. Everyone has different symptoms with this this disease or without.

I am posting this because I feel his knowledge of this disease is one of the best in the world.

My Question to Dr. Redwine today

I have heard so many people say that the Mirena IUD or previous surgeries caused Endometriosis. I don't understand how that is possible if there really is no definitive answer as to why some women get Endo and some don't
Like ·

David Redwine's answer today.

Neither the IUD nor surgery causes endometriosis. Just more empty talk

Avatar universal
I had my son in 2006 and three days later, had the ParaGard inserted.  I was 28 then and had always had a normal period.  Started on time every month.  Two previous children with no issues.  After I got the Para IUD, downhill I went.  Immediately after having my other two children, my period went back to normal.  After the Para, I was heavier, irregular and more.  I literally thought, due to multiple symptoms I kept experiencing, I had copper toxicity.  I had it removed, and that was 4 years later.  Well, my health is going crazy.  

I went for my routine check and was told it was the worst she had ever seen.  I know a little of endometriosis, but not extensive knowledge.  I am afraid to look information up or ask.  

Now mind you, I suffer from 3 rare, extremely rare, diseases now.  All my symptoms started at the same time.  Which, as i said, led me to think copper toxicity.  Complete exhaustion, extreme weight gain with no change in diet or exercise, pain all over and more.  I have read enough to make me think there is a definitive link to the Para IUD and Endo.    What is really weird is that prior to this, my health was perfect.  Never got sick.  Always energetic.  Life was good.  Now, i have tumors all over.  Brain disease, lung disease, goiter with nodules, eye issues due to brain disease and more.  It seems one hit after another and I swear by gut feeling, time symptoms started and more.. it goes back to this ParaGard IUD.  I will put my life on that line, that is how sure I am there is a link.  My life is now hell.  I have three children, the youngest now 6 and fight for my life, so i can see them grow up.  Even more, none of the diseases I have can be treated.  No cures and anything medicinally, I react too.  Chemical sensitivities.  I have had every autoimmune test ran, been to Shands in Gainesville, FL and Mayo Clinic in Jacksonville, FL.  Nothing.  Blood is fine.  No autoimmune diseases.  Just my body going crazy for three years with NO known cause and NO answers.  Something is up, Para.  Own up to it!!!
136956 tn?1425606272
It could have been a coincidence  as some people have no idea that thy have Endo as they are asympomatic until something happens like a cyst or a surgery for something else and it he's diagnosed by fluke. It's possible the iud cause a lot of the problems but I do not think it caused endometriosis I have done lots of research and I too have co morbid disease but dr Redwine is the a very influential doctor go has studied this disease for over 30 yrs so I am going to have to say I agree with him because he knows what he is talking about. I know people don't want to believe it and want to sue the company claiming it caused endometriosis but that case won't go far in my opinion.

Avatar universal
I had the Mirena for 2years. I started having severe pelvic pain went to my doc she said pid. Then had the pain so bad one night I went to the Er and the er doctor removed my iud said pid. I went to the doc I currently have and she suspected endometriosis. I started treatments nothing worked. She went in and did a laparoscopic surgery confirmed endometriosis and also found interstitial cystitis. I then went through bladder installments,Lupron depot shots and Elmiron nothing seemed to help. So this Monday we are having a full robotic laparoscopic hysterectomy and I sure hope this ends it all! These past three to 4 years have been hell! I am 100% positive that the iud had to play a hand in this! I was perfectly normal before I got that thing after my son was born. Anyone else have a similar experience?
Avatar universal
Did u have a c-section?
Avatar universal
I didn't really have issues with my period until I got a paragard at age 36 (2009). My periods were intense and painful immediately after getting it. The Dr said they would be bad for 2-3 cycles. By the 4th cycle I was having cramping so bad it was reminiscent of labor contractions. I pulled the paragard out and the labor-like contractions stopped immediately, but my periods never went back to normal. The pain and flow was so severe. Over the same time, I developed intense sensitivities to scents and chemicals, with severe headaches from exposures. It's like the inflammation in my uterus spread like wildfire not only to my abdominal cavity but to my entire body, and liver. I've been living in what I call a bubble, ever since. I don't get out much socially as I can't have foods with chemicals and I can't be around people who wear scented lotions, soaps, perfumes, etc. I  have no proof it was all the paragard...and I have no proof that I didn't have these conditions brewing before... but I do feel strongly the paragard tipped the balance in by body from being functional to being a complete mess.
Avatar universal
It's weird that I'm reading all this about endometriosis. Until just a few weeks ago I had no idea what endometriosis was. I had a paragard inserted a year ago, painful as hell. Had I done my research, I definitely would have held back. Right after the insertion I got cramping, heavier periods, excruciating pain everywhere! My hips, my abdomen. I became so sick I didn't even want my child around me! Anyway, the pain is not as intense as before nor my periods, but I still continue to have all types of symptoms. Spotting in between. Hip pain, abdominal pain, lower back pain, even my sides hurt. I even passed some ground coffee looking clots while I was not on my period! That made me go see my doctor asap and when I showed her the pic she had me do an immediate sonogram. Well, everything seems to be normal and IUD in place except my endo lining which she mentioned is twice the thickness of normal. I'm frustrated. I hate having all this pain, I've even thought maybe I have something worse. I thank you all for your posts as this has helped me to  conclude what may be happening to me.
Avatar universal
I was 23 when I had Paragaurd inserted (Dec 2014). The pain after insertion was unbelievable. I couldn't even drive home because the pain was so intense. The 5 months I had Paragaurd was hell. I had so many er visits, it was my life. I had to quit working. I had constant bladder infections. Sex became too painful to bear. My periods became so heavy I had to go to the er for rapid blood loss. And every er and doctor visit I was told my iud was in place, my CT's, ultasounds, and test results were always clear (except for a ruptured cyst and inexplicable bladder infections), and I was told by several doctors "this kind of pain is normal with Paragaurd".

After 5 months (May 2015), I had it taken out. When it was pulled out I experienced excruciating pain. And a week later I was diagnosed with PID. From that point, the pain just kept getting worse. It took me months to find a obgyn that believed me when I explained how bad the pain was. Until I found him (Sep 2015), I was looked at like I was a pain pill addict who was exaggerating her pelvic pain.

In Nov 2015 I had a diagnostic laproscopy. I have stage 3 endometriosis. I tried Lupron for 5 months, but it made me suicidal. Even while take it with estrogen and depression meds. After I stopped the Lupron and my periods came back, it's only been getting worse. I can't stand, or take cookies out of the oven, or walk my dog around the block, or live anything close to a normal life. And I can't do these things even though I'm taking 60 MG of Oxycontin a day. The pain around my period leaves me screaming and crying in pain.

I have a hysterectomy scheduled in a few weeks (Aug 2016). It wouldn't surprise me if my endometriosis has moved to stage 4. I know this won't cure my endo, but I'm hoping it will lower my pain level. I'm 25. I want to be able to walk my dog, and work part-time, and not need this amount of pain medication.

It all started with Paragaurd, and from the stories I've read, it seems less and less likely it's just a coincidence. If they are responsible I hope that it's proven soon. I can't imagine how different my life might be if I didn't decide to get Paragaurd. And I hate to think there might be women out there unknowingly getting Paragaurd, not knowing what consequences that might face.

I've decided to keep one or both ovaries, since surgical menopause and hrt seems like an even worse hell than I'm already in. And I've decided to switch to a whole food, plant-based diet following the surgery.

If you're experiencing this terrible disease: I hope you can find something that will help you and give you hope.
I can relate to you SO much!! My case is pretty much exactly the same; excruciating pain within months of insertion, burning sensation, ER and Dr visits where im constantly told that it has "nothing at all" to do with paragard. It seems like these Dr's treat iud's like theyre the best thing on earth and ignore complaints about absolutely UNBEARABLE pain. I swear, we will have grounds for a lawsuit and hopefully that is soon. In the meantime, im considering the laparoscopy and am terrified of infertility...if we find out this is linked to the iud, that we have suffered so much unnecessary pain and even infertility, that is serious grounds for recalling these torturous devices that are so often praised while our pain falls on deaf ears..
Avatar universal
Alright I definitely see a trend going on!     I had the copper iud inserted when I was 23. After two years of awful painful periods and unusual labial cuts I finally got the iud removed. I am 30 now and within the last 3 years like clockwork I have had absolutely  awful pains/bloating before my period (usually a week before I start to bleed). I am 100 percent positive that the copper iud I had is the cause of my endometriosis. For shame on all these doctors and nurses who push women into getting these"little" T bars inserted into their precious bodies. I am currently trying to figure out a more wholistic way to deal with my endometriosis, so I have started to take a low dosage of bladderwrack (seaweed). If this does not improve my pain I will try the fuyun pill. If this too has no affect I will try hormonal birth control. Wish me luck! GIRL POWER!!!
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