Endometriosis UK

Anyone else have symptoms without the period?

This may seem like a strange question-I’ve been suffering over a year now, extreme pain and fatigue, bowel and bladder problems around my period, pain after sex, and originally I had ridiculously heavy bleeding, flooding regularly. I tried the mini pill on my consultants orders and whilst it took the edge off some symptoms it made me extremely depressed so I had to stop taking, I then gave in and give the mirena a try. Since the mirena my periods stopped, but I still get the cyclical exhaustion, bowel issues, pain, bladder issues....

to me this is strange if it is endo (I’ve had no lap yet) the mirena is stopping the build up of tissue in my uterus at least-can in still be happening elsewhere does anyone think/has experienced the same? Thanks for your ongoing support ladies 💛

9 Replies
oldestnewest

Hello,

I have the coil in at first I still had my period but now I dont get it but still get pain so I sympathise with you 😮 I have severe endo though which hasnt been removed yet so I'm hoping when some of its removed it will ease up even more 😮

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Thanks for your reply....I really hope once they remove it for you it eases your pain. It’s reassuring to me to hear it could still be endo without the period, I keep thinking if it’s not that what on earth else could it be and I am spending all this time in pain messing with hormones and waiting/hoping something will stop it.

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Thank you 😊 If they feel like your period issues/ if you've had them before then they are likely to be endo 😮 I know how you feel because I've lost over 17kg in weight and have gastro problems its hard to decide whats endo or not 😮

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Hi, my experience of the Mirena is that my symptoms gradually got better. How long have you had it? You might not have got the full effect yet.

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I’ve had it in for five moths now. In the first month it wasn’t too bad, but it’s got progressively worse til I feel still at square one- it’s good to hear that it could still get better. Can I ask what sort of symptoms it helped with/took a while to work with? Thanks for taking the time to reply x

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I’ve been using the Mirena for years, so it’s quite hard to remember that far back. I have a clear memory of it taking several months just to feel OK, then I think after about six months I was better than before having it. After maybe a year or two I had virtually no pain and when I had a follow up lap after three years my gynae said it all looked much better. So my impression was that the effects accumulate over time.

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I had mirena in and

Still the pains and bowel symptoms. They added in a systemic progesterone tablet. You could try Prometrium ( it does not affect mood like other progestereones) and see if that helps. I took a high dose progesterone and it changed my life. Other doctors said mirena is enough but then a doctor said the mirena only acts locally if you have endo in parts further away then you need a progestereone to suppress that. He was right and I was better in days after chronic bowel discomfort nausea and upper abdominal pains. Endo isn’t just near the uterus it can go anywhere !!! I would ask for high dose prometrium as a trial and see if it helps. I’m sure your pain will be endo.

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Thanks so much. I did actually think about seeing if I could take 1-2 tablets of the mini pill on top to see if that’s enough to help but not make me crazy! Did you have a lap to confirm? Thanks so much for the advice I will definitely look into the prometrium! X

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I had a laparoscopy and excision of widespread endo in the lining of the pelvis.( the peritoneum). That’s when they put in the mirena. But my symptoms came back after less than a year and I had chronic pain for another year before going into the oral progesterone. It was life changing for me.

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