feeling completely lost😔 sorry it's a long post

[Lanniepie]

hello! Im new to the group!

I've recently been diagnosed with endometriosis via a laparoscopy last month! Ive been suffering for many years.

I've been treated by diathermy it was found on my pouch of douglas and left uterosacral. I believe by what I've read I don't think I've got it that bad,but the pain I've experienced has been horrible ☹️

I had the coil fitted at the same time on the 20th July, once I came round for the op and was back on the ward the surgeon came round - she didn't really explain it to me just said she treated what she could see and to preserve with the coil for at least 6 months. I haven't even got a follow up appointment, I feel like like they don't care!

I started bleeding on the 3.8.22 and only just starting to stop now , I've been having bad headaches, the one I've got at the moment I've had for a week!😔 my mood has been up and down, also got lots of pelvic pain. I phoned my doctors today and she said the coil won't cause my mood to change or cause headache! Im so tired aswell i just can't shake it, i want to get back running, but again can't seem to get any adviceon it? She gave me some antibiotics just incase I've got an infection from having the coil fitted.

Has any one else suffered from side effects from the Mirena coil?

thanks xx

[Gardenist]

Hello Sorry to hear you have been left without follow up. I had the same after I had my ovaries out last year. Zero follow up and nobody to give me appropriate hormone treatment for my age for 18 months to 2 years. Ridiculous! Anyway, to answer your question a bit. I bled every day for a year when I had the mirena. I kept it because it helped with pain. I had it another few years without bleeding. I definitely think it can cause mood change but that it gets better as you get used to it. I also get migraines every time my hormones are changed, progesterone or estrogen. It is exhausting! Over all I didn't get on with the coil very well but it did give me some pain free years. It is worth bearing in mind also that you have had a general anesthetic and surgery and your body will still be recovering from that. This might be adding to your tiredness. In my experience (4 ops for endo) it takes significantly longer than you think it should to feel better. But then you do feel better. Hope you feel more settled soon.

[GraceFace in reply to Gardenist]

Hi Gardenist,

I’m sorry to hear this is happening. I have Endo too, and the pain can be absolutely horrendous.

It looks like you’ve got some pretty sound advice from the other poster here, but I’d just add that it could be a good idea to call the Gynae

Department and ask to be seen again. Explain that you have worsening symptoms, and that you are struggling to cope with the pain.

Re. The GP, bear in mind you can request to see a different doctor, or a specific one who i’d more competent. I found one at my surgery, and I’ve stuck to her like glue. I won’t see anyone else now. Said GP prescribed me Naproxen for the pain before one of my Endo surgeries.

Unfortunately you will have to fight for what you need, but don’t take no for an answer. You’ve got this! X x

[El_Nino]

HI Lanniepie - please don't feel alone it's awful when you feel like no one understands. I was desperate to get back to living my life during my bouts of pain and surgery so I understand how you are feeling. I felt like I was a young woman with a life to lead, and really missing out as I was usually so fit, healthy and bopping around from here to there - I feel for you. Gardenist has given some great advice though (contact the gynaes) and I would agree that treatments can take time to settle and for your body to adjust to. The GP/Dr's prescribe and then wait until you've tried things out over a period of time - which is why they sort of leave you to it....it does feel like you've been abandoned but I hope you can find strength to keep going with it to see if long term it helps. I know my 83 year old dad is having some testing times finding the right treatment for his prostate, it's taking a long long time and he's up and down to the loo all night - it's wearying and he just wants his normal life back, but he's slowly accepting that there's a problem. Hopefully you get some really good days/weeks soon and find that it helps you get through - sending you a hug and understanding xx