My periods are ruining my life. - Endometriosis UK

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My periods are ruining my life.

Lornalost89 profile image
5 Replies

Morning all.

I know the title may sound a bit dramatic to some but my word I am beyond shattered with the lack of relief and support.

Im nor here to twine I want to talk about what everyone does during their menstrual cycle OR their worst flares to get through? Especially with work/ parenting if these are part of your life.

My period brings out the worst pains crippling can't straighten my torso as everything feels "stuck" my belly button leaks foul smelling liquid (ONLY during my cycle and I'm always given antibiotics for the same thing to happen in 28 days) the list is endless I won't get into it all, I have complex cysts and possible "DIE" RECTOSIGMOID, my MRI hasn't been reviewed properly since December which I'm currently having a battle around.

I have codiene. This week I was given tramadol and told "don't think about it, stop worrying" so there goes any support until I see a specialist in August.

Nothing seems to help the pain, as mentioned it's more "stuck" feels like im peeling my insides from themselves just to move, I'm struggling with work, normal life I know the worst days don't last but any help on what gets you through

I've tried heat, different diets, pain relief, tens machines. Meditation, exercise . I'm at a loss. Any help put there? Xxx

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Lornalost89
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5 Replies
CitizenErased profile image
CitizenErased

So sorry to hear you're struggling! Have you tried going to a pain clinic? I've heard quite a few people going to one on here. Some don't get anything helpful from them, but some swear by them. The people working at them are specially trained to help people with chronic pain and find the right option for you. It might be worth asking your GP to refer you while you're waiting.

Them telling you 'don't think about it and stop worrying' is unacceptable if you're in this much pain. Sadly this happens to many of us 😞 You'll just have to go kick up a bit of a fuss and say you can't wait until August for help!

Hello

OMG I can’t believe you have been left in this state! I am so sorry to hear this. Do you have a supportive GP? Perhaps they could write to your consultant and request a review appointment. You certainly cannot continue like this. You are also entitled to a second opinion with a different consultant if they refuse to listen. You can also request not to see a certain consultant. It’s hard to stay strong but we women find the strength somewhere and fight on. Good luck I hope someone listens to you soon.

Lornalost89 profile image
Lornalost89 in reply to MrsPaddingtonBear

Hi thank you. Unfortunately my GP is NOT supportive and told me to not think about it and stop worrying. I am currently in discussions with someone around a second opinion as they have a different view of what plan should be in place to what my current consultant things but when I have tried to discuss it again my consultant wrote to me saying "kindly keep your appointment for August in the meantime I'm discharging you from my clinic (hes passed me over to a specialist centre) which is GREAT but in the meantime I'm just left in limbo with no where to go when my symptoms are worsening as no one is listening and just telling me to wait until August 😭 If I could afford private I'd have went down that route now and it's something I'm looking at to try and get into

MrsPaddingtonBear profile image
MrsPaddingtonBear in reply to Lornalost89

Hello

Sorry your GP isn’t listening. This is all to common a thing. Hopefully the second opinion person will listen to you. The first consultant sounds like he’s pressuring you to stay with him. Make your own mind up don’t let him bully you. You can also speak to pals at your hospital if you think your not being listened too. Good luck

asread profile image
asread

At the GP you should contact the practice manager and explain what has happened - this is kind of an informal step before a complaint so they should act on it.

You can contact PALS at the hospital who are patient support and explain what has happened and they should give you advice or being to help.

From experience I would also get the Gyne secretary details from the letter you have been sent or on their hospital department website page and email your concerns about being discharged etc - this has happened to me several times. If you have it in an email you have a paper trail and the evidence in case there are any further issues and I would just keep pushing back and questioning things - it’s draining and I’m in the same situation but otherwise you are just ignored.

You could also just go to a walk in or A and E and see if they do anything - they might give some more specific short term relief.

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