I’m new here, could my endometriosis be c... - Endometriosis UK

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I’m new here, could my endometriosis be coming back? Any advice would be great

BlueOasis27 profile image
5 Replies

I was diagnosed with endometriosis in January last year. It was removed from my pelvis and the surface of my bowel and bladder. I had the Mirena coil fitted during my laparoscopy. My recovery was difficult but I eventually got there and 7/8 months later I was back to myself. All was going great until last month when I started to feel some pain although it wasn’t every day so I tried to ignore it. However it is slowly becoming daily pain and I am worried my endo could be back. I am feeling so tired again and the thought of all this starting again terrifies me. My doctor said to get in contact if I was worried about anything. I know I should do it but I’m worried about how I’ll cope if I’m told it has returned.

Could my endometriosis be back this quickly and should I be worried? Any advice or kind words would be great. Thank you

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SimplyDeeDee profile image
SimplyDeeDee

Being worried is only natural, you’ve been down this road before and know what a tremendous amount of strength you have to have to deal with it. Contact your GP and explain how you are feeling, they have stated they are willing to help; they’ll also be able to request a consultation with a gynaecologist specialising in endometriosis if you no longer have one.

Getting the the ball rolling with tests is always best in my opinion because it will help you to plan your next steps.

Due to your tiredness (and if you can) take someone with you for extra support- 4 ears will be better than two.

I hope today is a bit more bearable

BlueOasis27 profile image
BlueOasis27 in reply toSimplyDeeDee

Thank you so much for your reply. I think it’s just scary taking that first step and contacting my doctor again. It’s been lovely having time away from hospitals and appointments but I know it needs to be done

SimplyDeeDee profile image
SimplyDeeDee in reply toBlueOasis27

Just a little break from the poking /prodding and a little normality is all we ask for, however, it's best to stay on top of this, it's a nasty condition to deal with. Keep a pain diary with a scale system. Include extra information like how you are feeling, diet, mobility and if you are experiencing any difficulty with your bowels so you are well prepared for your GP appointment.

Mal_w profile image
Mal_w

Hi there! Unfortunately, yes, endo is a progressive disease, so it may indeed be coming back. Do you know if the first surgery removed as much as possible? Odds are it doesn't grow back super, SUPER quickly, but it does indeed grow back. You could also be cramping and feeling terrible from the Mirena coil itself. I have heard nothing but horror stories about it, which is why I take the birth control pill every night instead. Try not to panic as you are already experiencing pain, and the panic signals your brain that something is wrong, and actually makes the pain worse. Contact your doctor to talk about the next steps. I would ask about the Mirena and if what your feeling could be a result of the device. It could have slipped or be out of place/penetrated the uterus wall.

BlueOasis27 profile image
BlueOasis27 in reply toMal_w

Thank you for your reply. Yes I was told my surgery removed as much as possible. I think I still have some on the surface of my bowel which couldn’t be removed. My doctor also mentioned adenomyosis. I read a lot of horror stories about the Mirena and I’ve been really lucky with mine so far, I haven’t really experienced anything from that. I never thought about that moving so that’ll be something I can ask about. It’s just scary making that first step and contacting my doctor again

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