Have PCOS & Using Mirena IUD (Have ?s) - Polycystic Ovary Syndrome (PCOS) Message Board

kycountrygirl · 06-20-2006, 12:37 PM

I posted this under birth control over a week ago and never got a response. I have the Mirena IUD not for bc, but to control my periods due to PCOS...here's my story and questions at the end. I hope someone out there has some form of answers or knows what is going on. Thanks for listening.

I'm 25 years old. Got Mirena IUD inserted April 2005 as a "last resort." I have been on BCP for years until I had a DVT blood clot in December 2001. Taken off of them, got rid of the DVT with treatments.

April 2005 period went from bad to worse...extremely heavy bleeding, passing many blood clots in 30 minutes at a time, loss of blood, and it was just a mess. It happened before back in 1994 and they stuck me on BCP back then. This time around, they put the Mirena IUD in me due to blood clot history. It was either that or do the ablation (spelling?) or another option that would cause me to never have kids.

Before the IUD, they did the biopsy and it was fine. After the IUD, I saw a big change in my overall body. The bleeding stop...well should I say slow down, stopped, and came back. I had the same full heavy bleeding until about September 2005 (5 mths after insertion). Then afterwards until now, I would go bleeding for a week-two weeks at a time every day and then be without a period for a few days and back having a period for a day or two at a time and then stop.

Along with the bleeding, I gained weight (10 lbs) even with exercise and eating right. In July, I started to have low back pain that has yet went away. I also became very sleepy all the time and acne became a huge problem that I hadn't have in years. My legs are also swelling up a lot as compared to before.

Because of my back troubles, I had MRI's done in August, November, and March. All showed cysts on both ovaries. I had ultrasounds as well. In one year, I had a major increase of cysts on my ovaries as compared to beforehand. I do have Polycystic Ovaries but the IUD seemed to make it worse. The GYN that inserted the IUD really didn't have an answer for what was going on and all I got told was "it was normal." Not only that, she tried to get me to use the patch (even knowing I had a history of DVT) and said that it wasn't a big enough dose to cause a blood clot. My pharmacist thought otherwise and the new gyn thought otherwise because the old GYN tried to give me double dose than what is recommended! I don't know what she was doing...and this gyn is supposively highly regarded since she teaches at the local university. Boy were they wrong!

I went to a new GYN and talk about a big difference in care! She's carefully monitoring the cysts, my diet, everything. She did an ultrasound and my uterus lining is too thick and really hasn't thinned any since I've had the IUD last April. She said that she feels the Mirena IUD is doing more harm than good for me given with my past. She tried to manually get the IUD out this past Monday, but without success. She said that the string was cut way too short and it was hard to get a grip on it. She went ahead and did another biopsy to make sure nothing else was going on. All that fooling around in there really was a painful experience.

In a week and a half, she is going to use an ultrasound and then a pair of tweezer like things to pull it out. She said that if that doesn't work, then I will have to have it taken out with an outpatient surgery.

My questions are:
1) Anyone have increase # of cysts being on Mirena IUD?
2) Did anyone have periods pretty much all the time and never stopped?
3) Which was worse, getting the IUD put in or taken out?

My number one piece of advice is to take some pain medicine when you get it inserted and when they do a biopsy because it is a very bad cramp feeling. Have someone to go with you in case you need them to drive or just for general support.

Anyone have any advice of what I should do to help control periods, even with a past history of a DVT caused by BCPs??

Thank you in advance for your help and advice!!

shadowreaperx · 04-24-2008, 08:40 AM

I've been diagnosed with pcos and have had the iud inserted. The only problems I have with it is the cramps and gaining a little weight and then losing a whole lot more (every woman's dream but I think it's a pain wearing baggy clothes or buying a new wardrobe).

Everything that you have said is NOT normal. The first gyn is a quack. Listen to one that is saying that the iud is causing you harm because it is.

With an iud, a gyn won't remove it unless it's either been a year since the insertion or if you are having complications from it. Talk to your gyn about removing it. To me, it seems like you may be getting an infection along with other serious problems from the iud alone. The reason why I think you may have an infection is because of the back pain and whatnot. Of course, I could always be wrong because I am not a doctor.

Just talk to your new gyn about the possibility of removing the iud or alternate ways to help you keep the iud.

I've never had my iud removed, but it can't be that much worse than getting it put it. I have a friend that had the iud and said it wasn't a pain when she removed hers, but it's different for everyone.

Hang in there. There's nowhere you can go but up on this one.

nehenehe27 · 05-19-2008, 03:32 AM

Aloha. I also have PCOS and have had the Mirena IUD/C in for about 1.5 years. I decided to have the Mirena placed in my uterus after a long battle of trying to regulate my period and to ovulate. I took BCP for years, and "the ring" for a short while because of side affects such as swollen feet and legs. Then after being off a hormonal method of birth control, my periods also stopped. I went to a woman that practices Chinese Medicine, who suggested Vitex to regulate my period. I took it for less then a month and got a period, and then my period arrived every month. Soon, I went in for a pap smear and I was ovulating at that time!!! It scared me so I tried the pill again, which made my periods come twice a month. So I tried a copper IUD wich got expelled. Then I tried the Mirena and was very happy with it. Now, I have some serious acne and swollen feet. I believe it's because of the Mirena. I want to get it removed and talked to my OB/GYN and they don't understand why I want to remove it. I am considering trying to conceive also.
Any suggestions on what to do and how to approach my doctor again????

bleigh · 05-19-2008, 07:56 AM

I can't answer all of your questions, but I can tell you about the removal of the Mirena. Sounds like your situation is alot like mine. My string was short and retracted. I wanted mine out before a year and my OB/GYN did not have any issues removing it. I never heard that you had to keep it in a year before they would remove it....doesn't make sense. If you decide you don't want it they should take it out even if you don't have complications. Anyway, mine was slightly embedded in my uterus (couldn't tell by routine ultrasound), but my doctor was able to get it out with ultrasound aid. I was not given any local anesthetic and it did feel a bit like going through labor. My GYN was only doing this because I was tolerating it well and I begged him to get it out without having to go the hospital. He told me he would give it one more try and then we going to have to surgically remove it in the hospital. Thankfully he got it out on the last try.

I would highly recommend getting a local if your doctor is going to attempt the removal in office...unless you're prepared to go through labor like pains. If the doctor is not successful after a few tries, then by all means have it surgically removed. It's not worth the risk of infection. Also, if there is alot of digging in there to get it out, make sure you're put on an antibiotic to prevent infection.

Your removal will probably hurt worse than insertion. Insertion is not supposed to hurt too badly. It will be okay though....sounds like it won't be any worse than what you've been going through.

Hope you feel better soon.

bleigh · 05-19-2008, 07:59 AM

IF you wan to have your IUD removed all you have to do is schedule and appointment for removal and get it done. Tell you doctor this is what you want and be firm. They shouldn't make you feel like you're in the wrong to get it removed. You are in charge of your health and this is your decision. This is a form of birth control and I can't imagine a doctor not allowing a woman to make this choice for herself.