PCOS & navel pain. 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?

[OakTreeBlossom]

Isn't this community great? So glad you stumbled across it too. Your story is so interesting but again highlights how how different PCOS is for each woman.

I haven't tried the coil yet although this is something consultant has suggested for me also. But I have some similar experiences with the combined pill.

It was suggested to me at 17, that I had symptoms consitent with PCOS (I wasn't diagnosed until 28 however) but at 19 I had chronic abdomen pain (that resulted in hospitalisation twice) that would tally with going back on the pill. It wasn't until years later that I connected the pill and the PCOS to that pain however. I came off the pill at 20 and the pain was gone (not that dramatically but as I'd just finished A Levels everyone including myself put the pain down to stress).

Since last year I have begun to chart my hormones in a different way. And I have spoken here before about the idea of keeping a diary of symptoms and moods to run concurrent with blood tests. I can now link my nightmares to a rise in body temperature caused by a spike in my oestrogen. That would explain your sweats and waking at night too as the combined pill contains oestrogen. All the symptoms you speak of are common to spiking oestrogen.

I think PCOS management is a trial-by-error thing. The combined pill doesn't work for you so try the Minerva coil. But don't stop there if you don't get the feedback you want. There are other coils and other pills; I'm on a POP pill, which is progesterone only and no oestrogen. There are tens of combined pills that will dose you with different levels of oestrogen also.

The best piece of advice a consultant has ever given me is to prioritise your symptoms. What can you live with and what do you want to address? There's no magic pill to treat all your symptoms so starting with what you need to be healthy (periods at least 4 times a year and healthy BMI) and what affects your day to day activities most (you need your sleep e.g!) work on what you need most with your GP or consultant.

As you mention GPs are pretty ignorant of PCOS but they have a vague idea. If you find a particularly bothersome GP try seeing a Gyne or just keep asking to go to a PCOS clinic. it can be time consuming but at least you won't be wasting time in GP surgeries.

Finally, have you looked through the threads on diet and PCOS? I managed my symptoms for years on diet and many others swear by it too. Have a look at gluten-free, sugar-free, diary-free or paleo diets as these are complementary to PCOS symptoms.

Good luck x

[Hidden in reply to OakTreeBlossom]

Thank you so much. I'll take a look at diet management. I do need to lose more weight. It's just odd that the pcos symptoms 'came back' after taking the pill back to back to try and manage the tummy pains. Grrr I'm not giving up so will get there eventually.

Thanks again.

[SKR31 in reply to Hidden]

I just came across this while looking for support for early pregnancy in PCOS sufferers.

I also suffer from tummy button pain and I have PCOS! It's really strange, I also thought it was a hernia but it's not. I always have to wear a dress or unbutton my jeans, it's really quite painful.

I went Gluten free nearly 3 years ago now any it has vastly improved many parts of my life. I'd never connected PCOS with the digestive problems I was having but weird that I see in this thread that they might be connected.

I hope you get the support you need and the pill works out for you.