My IUD has never really felt right. Help me proceed?
September 10, 2017 4:34 PM   Subscribe

I got an IUD back in April. It hurts all the time. I'm going to make an appointment to have it looked at this week. What do I say when I'm there so that they take me seriously/what can I expect them to do to investigate without them just taking it out? It seems to be my best bet for long term birth control given my tolerance for hormones.

It hurt like the dickens going in and has never been "right" since. (thank you Metafilter for preparing me, my body literally took over and tried to fling itself over the back of the exam table, I fought back) I was more surprised by this than I'd like to admit, because I have a pretty rockstar pain tolerance (hardly flinched at the uterine biopsy before surgery, a recent digital block for a thumb injury was very easy to handle.) I think if my uterus was punctured I'd have been septic by now, but wtf do I actually know?

There are two particular spots where the IUD is uncomfortable, constantly (though not as much pain as I was constantly in before the surgery that preceded the IUD). Sometimes the discomfort flares and I cry/can't function. The points correlate to a line. One point in my back and the other in my front. As I said before, I have a pretty high pain tolerance and a low tolerance for hormonal birth control, including low dose pill. The severity of my endometriosis indicates that I should be on long term birth control. The pain is different from the pain before my surgery.

I suspect that the discomfort of the IUD is just something I have to live with, but I felt/was told that about my periods for a long long time and don't really have the resources for other ways to manage my health. I have a heart shaped uterus (so not totally bicornate) and it's "tipped backwards," both of which can contribute to making them hard to place. I'm worried that I'll be dismissed and not assert myself, but I don't know what to say/request.

This will be a problem focused visit and I need to get/give as much information as possible in hopes of...I think I want an ultrasound to make sure it's in correctly? I'm a bit worried that this level of pain would translate to something much worse for someone else. (We also cut a bunch of nerves during my last surgery to mediate some of the pain response in my abdomen, so my understanding is that I should have less sensitivity in my uterus).

I'm 36 years old. I'd request a hysterectomy at this point but that might be outside the scope of this question. My periods are much lighter now and the cramping is much better than it was so because there's a chance the IUD is the cause of that improvement, that's bough reason for me to keep it. (how much of the inprovement may be due to the IUD and how much to the surgery is not a topic of this question.)
posted by bilabial to Health & Fitness (12 answers total)
You mention that your periods are lighter; is this a hormonal IUD? Have you considered an ablation, based on some other comments? I'm sorry for not directly answering the question.
posted by kellyblah at 4:42 PM on September 10, 2017

I am not a doctor but an ultrasound to check the placement sounds right to me. Some places do them as a standard part of placing an IUD (though I believe most don't).

I would tell the doctor something like, "I generally have a high pain tolerance and the pain from this is so bad at times that I can't function. The pain is interfereing with my quality of life. I am also concerned that the pain indicates that something is seriously wrong with the IUD or my body and could get worse if it isn't treated."
posted by insectosaurus at 4:51 PM on September 10, 2017 [4 favorites]

Response by poster: I had a four hour surgical excision in February. I previously had an ablation
posted by bilabial at 4:51 PM on September 10, 2017

Hi bilabial, it is reasonable to request an ultrasound to ensure the IUD is in the right place (both that it's in your uterus, and that it's in the correct place in your uterus.) However, assuming it's in the right location, there's not much that can be done other than remove it.

A question for you -- was your endometriosis causing you pain prior to placement? I would say there's a decent chance that your pain is caused by your disease and not by your IUD.
posted by i_am_a_fiesta at 4:59 PM on September 10, 2017

I am not your doctor and this is not medical advice. I can't tell from your question where the pain actually is (the back and the front of your vagina? your actual back and the front of your body?), but any kind of pain persisting for more than a few days after IUD placement merits a physical exam at the very least. Some patients have persistent discomfort from the strings, which can be trimmed, but it does sound like you have something else going on if it's true pain vs. discomfort.

As with all questions about how to be taken seriously about pain that interferes with your quality of life, the best way is to say that. Another way of saying it, that tends to get taken more seriously, is if the pain is interfering with your ability to do your daily activities -- like if you're calling out of work or not able to do household chores.

It pains me to say this, because it really shouldn't matter, but the majority of patients claim to have a high pain tolerance (sort of like how the majority of adults think they are above average drivers), so if I were trying to be sure to be taken absolutely as seriously as possible I would not bring that particular factor up. It sounds like you've already had a few different fairly serious interventions so I expect that your surgeon is already understanding of how much you are suffering and the severity of your symptoms, you just need to loop them in to the latest iteration post-IUD.

Some things that I would recommend doing before you go so that you can't be sent home to do them: keep a diary of when you feel the pain, noting where it is, the severity, how long it lasts, where you are in your menstrual cycle, and any relation to eating, physical activity, sex, bowel movements, voiding, or pain anywhere else in your body (e.g. migraine). Try taking an NSAID or other over the counter pain reliever and document if it relieves your pain, and if so how long the relief lasts.
posted by telegraph at 5:00 PM on September 10, 2017 [8 favorites]

I didn't even want to attempt an IUD because of my (at the time probable, now confirmed) endometriosis as I'm prone to pain and cramping. (Had total resection in June). I tried an arm implant (Nexplanon) instead and would recommend that to try if you want to get the IUD out but still want low level hormone treatment. They numb your arm, shoot it under the skin, it's sore and bruised for a couple weeks. No vagina poking required.

Unfortunately my body can't tolerate hormones so I had it removed after about 5 weeks. Insertion and removal was 10/10 though. Super easy.

First, if your doctor isn't taking you seriously -FIND A NEW DOCTOR! I'm a person with multiple chronic illnesses and it is essential that you find a doctor that believes you.

Now, I understand you may not be in a position to do that. So phrases to use are "impacts my quality of life" - "interrupts my ability to function" - "Makes me unable to do normal tasks" and "Is severely painful and different than anything I experienced before"
posted by Crystalinne at 5:05 PM on September 10, 2017 [3 favorites]

Since April??!!! That is unusual and awful. You should not have to live with discomfit and pain like this. If you are considering a hysterectomy anyway then perhaps just get tubes tied? I had tubes tied + ablation at once and it has worked great (had a lot of pain and ridiculous amounts of bleeding before), one of the best decisions of my life. I also had an IUD for about 5 years when younger and never felt what you are feeling, worst was some poky string problems during sex, I think there is definitely something wrong with yours and your doctor should take you seriously. There are also some differently shaped and sized ones (doctor might have to order) so if you are dead set on an IUD maybe try a different one.
posted by meepmeow at 5:34 PM on September 10, 2017 [1 favorite]

Did you get a Skyla? It's smaller and has literally the lowest possible amount of hormones any BC can give you. When I had that, as opposed to regular dose IUDs (Mirena), I had more spotting and a light period, but fewer cramps.
posted by DoubleLune at 5:39 PM on September 10, 2017 [1 favorite]

If you tell them you are in serious pain from your IUD, they will likely take it seriously, because perforated uteruses are a real thing and they will not want to risk that. (Not trying to scare you! That's really rare! You probably just had a misaligned insertion.)

You can't reposition the IUD once it's in. If the ultrasound shows it out of place or incorrectly positioned, they'll have to remove and put in a new one. You may want to do that anyway if you can feel it -- you are NOT supposed to feel it once it's in.

That said, I had horrible cramps from mine and the best thing I ever did was get it removed.
posted by ananci at 8:26 PM on September 10, 2017

I had some cramping (not as bad as yours!) in the first year or so after I got my IUD and my OB/Gyn had no problem sending me for an ultrasound. I think I technically had two, one external and one transvaginal. Mine were normal and my IUD was in the right place, but I still feel "twinges" occasionally, usually after sex or running. I feel that it's settled down somewhat now that it's been in place for almost 4 years. On the plus side, my period went away entirely!
posted by MadamM at 9:38 PM on September 10, 2017

How was it sitting when you went back for your post-insertion check-up? I had an ultrasound then on mine (trans-vaginal) to check it. Also, I have gynefix mini in now, which has given me so much less pain than the non-hormonal copper coil and the hormonal coil. This sounds like you need a different coil at least! Good luck!
posted by london explorer girl at 4:20 AM on September 11, 2017

I have a Copper-T IUD (ParaGard), with no hormones; you haven't said what kind of IUD you have, and they have different shapes. All the US IUD options are T-shaped, but exact sizes and shapes vary - the Skyla is smaller than the others.

Europe has a lot of other options; US FDA regulations have stifled the IUD market in the US, so there's not much variety in shapes.

Since you're having severe pain, definitely ask for at least an ultrasound, and find out if you can get it adjusted, or switched out for a different brand that may work better.
posted by ErisLordFreedom at 3:28 PM on September 11, 2017

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