Anyone else have symptoms without the per... - Endometriosis UK

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Anyone else have symptoms without the period?

emmaquinny profile image
9 Replies

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 💛

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emmaquinny
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Abi_97 profile image
Abi_97

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 😮

emmaquinny profile image
emmaquinny in reply to Abi_97

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.

Abi_97 profile image
Abi_97 in reply to emmaquinny

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 😮

Fabbird profile image
Fabbird

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.

emmaquinny profile image
emmaquinny in reply to Fabbird

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

Fabbird profile image
Fabbird in reply to emmaquinny

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.

Penelopeel profile image
Penelopeel

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.

emmaquinny profile image
emmaquinny

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

Penelopeel profile image
Penelopeel in reply to emmaquinny

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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