IUD causing unexplainable pain?

Posted by j @jennyeco, Sep 7, 2022

Hi all, I got the Kyleena IUD in October 2021 and I've still dealing with some pretty bad pain every single day since, almost one whole year later.

To summarize pre-IUD, I was on the pill for about 11 years to help with heavy periods and PMS. I took a break from it for about a year, but was having a bad experience with cyclical migraines and periods that made me pretty miserable for about 3-4 days every month. So I went back on the pill but this time skipped periods altogether with it, which resulted in quite a bit of weight gain accompanied by depression and worsening anxiety (I've had anxiety since my teen years, but it was intensified with this pill). I decided to give an IUD a try.

For two months after insertion, I bled and spotted consistently for 2 straight months. I was in a lot of pain daily. My doctor said this unfortunately was normal. About 6 months goes by and I'm still experiencing cramps every other day (sometimes daily) that are consistently worse with exercise (light exercise, at that). At least once per month I get cramps that are so bad it's like the day I got it inserted - so bad I need to take time off work. I'm also starting to notice that I've been having intense mood swings. I'm bleeding after intercourse. My acne is all out of wack - experiencing it now on my body, which I never had before. My breasts are incredibly sore 50% of the time. So I went back to the OBGYN and got an ultrasound and they told me the IUD is in the right spot, don't know why I'm experiencing these symptoms, but should probably get it taken out. I decided I wanted to wait until about a year to reevaluate because I've already lasted this long, maybe my body just needs more time to adapt (and to be honest, these things are expensive).

Then, I wake up one morning and I can hardly walk. It lasted about 4 days so I went to the ER, and it's just an ovarian cyst about the size of a golfball. I've had small ones rupture before, but never experienced an ovarian cyst this large.

While I completely understand now that I should get the IUD taken out, I just want to know why I'm experiencing these problems and if anyone else has had such a bad experience with an IUD for so long. Any ideas? Anyone else? Any recommendations on birth control that might work for me? Thanks for hearing me out.

Interested in more discussions like this? Go to the Women's Health Support Group.

Amanda Roe | @amandajro | Sep 8, 2022

Hello @jennyeco and welcome to Mayo Clinic Connect. Your story seems to have many red flags when I read it. I am not a medical provider so this is just based on the personal research I have done in this space, and not medical advice.

If you go back to the start of why you sought out birth control, which was heavy periods and PMS, both symptoms can be pointed back to hormonal imbalances. There has been a lot of work done in this space regarding how to leverage diet and exercise to bring hormone levels back into balance naturally and may be something you would want to look into to get at the root cause. I will say diets with enough protein, regular exercise, eating healthy fats, and maintaining or achieving gut health could help.

Getting at your current situation with your IUD, it seems to me that your body may be rejecting it for some reason, even if you've been told it is in its proper place. While acne, breast tenderness, mood swings and headaches are all common side effects of IUDs, irregular bleeding should stop after six months.

Depending on your ultimate goal here, there are some options you might want to look into for alternative birth control methods, even if just for the interim if you are interested in working on balancing out your hormones.

One example would be to consider taking your Basal Body Temperature to track your cycle, which by the way, is rather fascinating if you've never done it before. It is very simple and now they even have thermometers that automatically update an app on your phone. This method will tell you when you are ovulating so that you may plan accordingly for intercourse once you know your fertile window. Knowing, and seeing your cycle, can be very helpful as well even if just for a few months as you let your body recover from the IUD if you remove it.

What is your gut telling you to do?

willows | @willows | Sep 8, 2022

Yes, I had terrible pain with an IUD especially with my periods. Finally had it removed. Did you know that there I’d something called a cervical cap that you insert yourself quite easily with no pain. Might be useful for you but check out the failure rate first.

sbirk | @sbirk | Oct 28, 2022

I am now passed my menopause but my experience with an IUD was directly related to yours. I had an device inserted and for a year it worked perfectly
I returned to my GYNO a year in to have it replaced - at that time these things expired! So, second insertion went fine but never settled with quite a bit of spotting and upon ovulation I was in horrendous pain so off I went to see my male doctor - he brushed me off, tried to tell me it needed to settle and it might take 2-3 months Hah! My husband could feel it - a mood killer for sure! Went to emerg to have it removed and was told it was in wrong, irritating the walls of my inards (hence the blood) so I went back on the pill! Never a problem since -especially with a new doc. So my advice - get a second opinion and take the thing out - your body is rejecting it!

onetiredmama | @onetiredmama | Oct 28, 2022

@jennyeco I have adenomyosis and got an IUD to treat it since the only alternative is a hysterectomy and I wanted to go with a non-surgical option first. It took about a year for my hormones to settle out and I bled so much in the first couple months that I got anemic! I've had it for five years now (got one reinserted this past spring and it caused so much pelvic pain that I could hardly sleep for a month) and I barely have any menstrual flow at all now. I am also perimenopausal, but I would say it has greatly improved my overall symptoms associated with heavy bleeding and cramping. I too have menses-related migraines and they have gotten a little better in the past 6 months for some reason. Anyway, I don't think an IUD is inconsequential at all, and if your uterus is unhappy for other reasons, it will be all the more irritated by this foreign object. Are cysts the only thing that's been identified? No suggestion of endometriosis or adenomyosis? How are you doing now?

Also, I was on oral contraceptives for 10-15 years before I started tracking my ovulation. I wish I'd done that way sooner because it was such a liberating thing to experience my natural hormonal shifts and it was a very effective form of birth control. I only got the IUD to treat my adenomyosis, not to prevent pregnancy. After experiencing my natural rhythms, I would never go back on hormonal birth control otherwise.