PCOS, navel pain, possible umbilical endo? Can the mirena coil help?

Wow. I've just stumbled across this website while googling symptoms. I can't believe there are so many of us suffering with the same symptoms yet everyone we've all spoken to says they've never heard of this before.

I'm 35, and have been diagnosed with PCOS within the last year.

I started having sleep issues, I kept waking in the early hours. I was always too warm, I gained weight, have awful nails which peel and break, bad skin, greasy hair, hair thinning, depression, anxiety, heavy periods, You name it.

I went to my GP and was tested for thyroid issues. I was so convinced it was my thyroid. I came off the combined pill to ensure all hormone tests were accurate. It came back as borderline. Which meant it wasn't severe enough to be treated. My testosterone levels were only very slightly above normal too. My GP referred me to an endocrinologist who carried out further blood tests to check for Cushings, which came back negative. Eventually diagnosing me with PCOS and putting me on Metformin to help manage suspected insulin resistance.

I don't have the usual PCOS symptoms. I don't have excessive hair growth, I had regular and very heavy periods. I've subsequently had scans of my pelvic area and they didn't reveal any polyps or problems with my ovarys either.

I started taking the Metformin and almost all of my symptoms improved. I lost the 1.5 stone in weight I had gained the previous year, my periods were VERY regular, but still heavy. My hair loss was still quite apparent. But the rest of the symptoms improved. Due to the navel pain I'll talk about below, and the PCOS symptoms the endocrinologist recommend I start taking Dianette as this would help the PCOS stuff and might also prevent the hair loss.

Then....

Since coming off the combined pill the previous year to allow for all the accurate blood tests, I started having navel pain each cycle. I ignored it for the most part. I also thought it was the belt buckle of my jeans that had some how hurt my belly button... I feel pretty stupid about that now. Anyway, I got to the point where I couldn't turn over in bed because it hurt so much. Like a pulling feeling, a sharp pain, like a stab maybe. Just around my belly button on my left side. My boyfriend persuaded me to go to the doctor about it.

The day I went for my appointment I couldn't even fasten my jeans and it hurt to walk. That was the worst its been.

I could feel a lump within my belly button. I'd noticed it changed in size. But I hadn't had any weeping or bleeding or smell or anything from my belly button at that point. The GP referred me to a surgeon as he thought it was a hernia. Despite me explaining it was DIRECTLY LINKED TO MY CYCLE.

So off I trotted to see the lovely consultant, who again, had never seen these symptoms before (after he confirmed it was not a hernia). I had several ultrasound scans to check the belly button yet nothing showed on the scans. The guy couldn't find anything. We went as far as planning an appointment for the week I had my period when I also had the pain, and while they could both (consultant and the guy performing the scan) feel the lump in my belly button, nothing showed up on screen. He even did a scan of my womb and ovaries and confirmed they looked perfectly normal. No thickening of the womb lining and no polyps on my ovaries.

He mentioned that though rare and unlikely (because I haven't had surgery in that area and I've never had kids etc) it could be umbilical endometriosis. He referred me to a gynaecologist.

Well, wasn't he a complete waste of f-ing space.

He had a bit of a feel of my lower abdomen. Didn't think I had endo but could only confirm by doing a laparoscopy. His advice was to take my pill back to back to reduce the number of periods. I asked whether this would affect the PCOS symptoms at all and he said no. he didn't ask what pill I was taking, offered to complete and internal exam (wtf?!?!? If you can reach behind my belly button mate you've smaller hands than is normal!) and sent me on my way.

Thank goodness I went back to my GP. It turns out I can't take Dianette back to back because it can cause liver problems. My GP agreed to me doing this for a short period of time until I have my next appointment with the endocrinologist - which is in three days time.

Since I've been taking the pill back to back I've started having the same symptoms again. Waking at night, acne, greasy hair, headaches on 'hormonal days' (since I don't technically have a period any more). I've also been experiencing break through bleeding every month. Which I realise can happen, but while I've had this bleeding I've had ALL the usual period related PMS and my navel is still sore in line with my cycle. Only now, I am developing regular infections (I think). It hurts to bend forward because I can feel something obstructing me around my middle and the lump inside the belly button is growing and shrinking.

I've come across another person with the same PCOS & sore navel symptoms as me. She had come off the combined pill and tried the MIrena coil and swears by it. Her symptoms have reduced and she no longer suffers with navel pains or infections.

Does anyone else out there have any feedback on how the Mirena has helped any of the symptoms I've described above?

5 Replies

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  • Hi, I had my laparoscopy in October, was told I had endometriosis, got the mirena coil fitted as a result as I was told this would help manage the pain and deal with the awful periods, a week ago the horrific pain started again and my period is worse than ever I feel so drained and generally feel crap all the time, it's really starting to take its toll on my daily life my wellbeing is not good, I am due to go back to the gynaecologist, I am really disappointed as I thought the coil would help me as I had heard great reviews about it managing the pain, my partner does not understand which has made things more difficult...

  • I've had a gyne recommended to me so I'm going to ask for a referral I think.

    Does the coil take time to settle down? I've read up to three months but everyone is different. I hope you get your answers.

  • I have umbilical endo. I'd suffered with pain exactly as you've described just to the left of my belly button for a couple of years. It wasn't completely linked to my cycle at first though. I'd had scans etc and my Dr said it was a pulled muscle! Then one day I woke up to blood coming from my belly button. Not much but enough to freak me out! Went back to the docs - still no clue! Ruled out infection etc. Happen a few more times this time definitely linked to my cycle. Seemed to stop the pain at the side although it replaced it with a pricking stabbing pain in the belly button. As soon as I mentioned the link to my cycle the Dr said endo and basically told me off for not noticing the link sooner! Refered me to a gynecologist. I'm trying taking my pill back to back for 4 months without a break. No bleeding belly button so far! I was recommended the coil too but thought I'd try this first. Still in near constant pain with my hips and lower back though...

  • I've had a gyne recommended to me so I'm going to ask for a referral I think.

    Does the cool take time to settle down? I've read up to three months but everyone is different. I hope you get your answers.

  • Sorry I meant that reply for the other person who commented!

    I used to take my pill back to back to prevent periods no problem. But this one just isn't working. Maybe I need to try a different pill before I think of the coil.

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