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[jorainbow]

Hi Claire how are you a week on? My headache is still there in varying degrees so much so I ended up calling 111 who advised a call to my Dr on Tuesday and going to A&E if they get any worse. When its painful it is scarily so with a weird numbness and pressure. The bleeding has completely stopped and my mood is grumpy but wirh an 8 day headache, I think that's understandable!

[Moonshine54]

I was unable to tolerate utrogestan..it got steadily worse. The mirena coil took about six months to settle but was a bit bumpy at first. We are all different  xx

[Claire MM]

Dear jorainbow, sorry only just saw this my symptoms were not getting better, the only time I left the house I managed to tear the ligaments in my ankle standing on a step, I have hypermobility and did not realise that progesterone can make it worse, my feelings of being toxic/liver etc just were not getting better I tried to get GP to take it out but they were 'too busy' I wen to out of hours docs to have it out on Friday, last night they called to say I have an infection found on the extracted coil so just started antibiotics, I don't yet feel better, my liver still hurts I'm just hoping this can treat it and it will all settle down - that an infection could be the cause. I'm so sorry re the headaches, I did have a headache a bit but not as severe as what you are describing. I really hope you feel better soon, I think you were also waiting for biopsy, any news, sending hugs, it is scary I get it, 111 always tell me to go to A & E it's so tough what has happened to primary care, sending lots of love xx

[Flossieteacake]

Dear jorainbow, sorry only just saw this my symptoms were not getting better, the only time I left the house I managed to tear the ligaments in my ankle standing on a step, I have hypermobility and did not realise that progesterone can make it worse, my feelings of being toxic/liver etc just were not getting better I tried to get GP to take it out but they were 'too busy' I wen to out of hours docs to have it out on Friday, last night they called to say I have an infection found on the extracted coil so just started antibiotics, I don't yet feel better, my liver still hurts I'm just hoping this can treat it and it will all settle down - that an infection could be the cause. I'm so sorry re the headaches, I did have a headache a bit but not as severe as what you are describing. I really hope you feel better soon, I think you were also waiting for biopsy, any news, sending hugs, it is scary I get it, 111 always tell me to go to A & E it's so tough what has happened to primary care, sending lots of love xx

Oh no! I am so sorry to hear what happened. I too did not know progesterone can make hypermobility worse. No wonder the coil was making you so ill. When are they going to remove it for you or can this not be done until the infection clears?

[Claire MM]

Hi Flossieteacake, I had it removed on Friday last week - that's the only way they identified that there was an infection, so glad the out of hours doctor sent it off to be checked as I'm sure the nurse at my surgery would have binned it, I only hope the cause of the symptoms (especially the liver) is the infection and that the antibiotics are the right ones and clear it, as you can imagine I regret being pressured into having that coil at this point, yes news to me re hypermobility but honestly to do that kind of damage from stepping on a step is too much of a coincidence. I hope to look back on this unscathed (!) It was the meno clinic pressured me to do this becuase I couldn't tolerate utrogestan and they didn't approve of me using cyclogest, I have put in a complaint to them as they also wanted to 'strip back' my estrogen despite difficulty absorbing and my GP is now refusing to prescribe. I felt cornered into this. And now my liver really hurts and no blood tests until 17th May. I'm not a happy bunny this easter, I hope you are well xx

[Claire MM]

Moonshine54, Yes it's all a bit tricky isn't it! I'm glad it settled for you eventually xx

[Flossieteacake]

Hi Flossieteacake, I had it removed on Friday last week - that's the only way they identified that there was an infection, so glad the out of hours doctor sent it off to be checked as I'm sure the nurse at my surgery would have binned it, I only hope the cause of the symptoms (especially the liver) is the infection and that the antibiotics are the right ones and clear it, as you can imagine I regret being pressured into having that coil at this point, yes news to me re hypermobility but honestly to do that kind of damage from stepping on a step is too much of a coincidence. I hope to look back on this unscathed (!) It was the meno clinic pressured me to do this becuase I couldn't tolerate utrogestan and they didn't approve of me using cyclogest, I have put in a complaint to them as they also wanted to 'strip back' my estrogen despite difficulty absorbing and my GP is now refusing to prescribe. I felt cornered into this. And now my liver really hurts and no blood tests until 17th May. I'm not a happy bunny this easter, I hope you are well xx

It is appalling the way you have been treated. They should never have pressured you into the coil knowing you are sensitive to progesterone as it is not something you can just stop yourself. I am glad you are going to make a complaint because to also try to reduce your oestrogen does not make any sense to me at all. Are they a private clinic? So sad they have caused you all these issues and your GP will only follow their guidelines.

No wonder you are not happy. I am so sorry you are in this pain. Hopefully you will soon be over this nasty infection now that you have started the antibiotics. Please rest as much as you can.

[Claire MM]

Thank you so much Flossieteacake, no this is the NHS menopause clinic, I started (due to lack of GP response) 3 years ago with Newsons and have kept them going as only spoken to NHS clinic twice for a phone appointment, the first one went really well but I think that clinician has left and the nurse I spoke to in January was passing on messages from a locum gynae and they were responding to the December statement by the British Menopause Society. I have followed up with Newsons but my GP is now basically saying they will only listen to the NHS clinic, depite the previous consultant prescribing what I'm on now. Yes I really hope this gets resolved. I remember you saying you were not really able to leave the house so you will no doubt relate to ME/CFS to some extent. I don't have a 'normal' ability to handle these physical interventions etc I wish I'd said no. The nurse otherwise said I would have to go onto utrogestan which I reacted to before. I will just have to stay outside the NHS if they don't have a positive response to my complaint. I really don;t like complaining and don't have the energy and emotional state right now to tackle conflict over my health. Sorry for going on, I just thank you for being out there and understanding xx

[Flossieteacake]

Thank you so much Flossieteacake, no this is the NHS menopause clinic, I started (due to lack of GP response) 3 years ago with Newsons and have kept them going as only spoken to NHS clinic twice for a phone appointment, the first one went really well but I think that clinician has left and the nurse I spoke to in January was passing on messages from a locum gynae and they were responding to the December statement by the British Menopause Society. I have followed up with Newsons but my GP is now basically saying they will only listen to the NHS clinic, depite the previous consultant prescribing what I'm on now. Yes I really hope this gets resolved. I remember you saying you were not really able to leave the house so you will no doubt relate to ME/CFS to some extent. I don't have a 'normal' ability to handle these physical interventions etc I wish I'd said no. The nurse otherwise said I would have to go onto utrogestan which I reacted to before. I will just have to stay outside the NHS if they don't have a positive response to my complaint. I really don;t like complaining and don't have the energy and emotional state right now to tackle conflict over my health. Sorry for going on, I just thank you for being out there and understanding xx

The menopause clinic sounds really badly run! It is such a disappointment when we have to use the nearest clinic and it is no good.

I completely understand how you are feeling. I am not able to leave the house at all and often medical people get annoyed with me for that. It is so wrong for them to give you an ultimatum. There are other options for progesterone and I would have thought a menopause specialist would know that. For example, two destrogestal (mini pill).

Please do not apologise and think you are going on. You are just explaining what is happening. It is not going on. Like you, I cannot handle such situations or make complaints. It is just to emotionally draining to have to deal with it and I freeze if somebody is angry or shouts at me. I totally freeze so I would not be able to deal with any backlash.

If you can afford to go private then it does sound like it would be less stress but you really should not have to as the NHS is for everybody.

[Claire MM]

Thank you Flossieteacake, I can't really afford to go private at all I'm actually exempt for prescription charges and the GP refusing to prescribe is a concern, but mentally I can't afford to have people supposedly advising or treating me physically who don't have my best interests at heart. I also have that issue with complaining and the fear of backlash, 100% relate to that freeze response, it took me two months to send my complaint to PALS and I tried to stop it today because they said it had to be a formal complaint to get a response but they said it is already too late. Anyway I just reassure myself that hopefully in time my financial situation will improve but health is an essential. I contacted the British Menopause Society also and they said they could try and speak to my GP surgery. It's not just me they don't seem at all positive or helpful when it comes to HRT (the GPs) I feel like unfortunately just through experience and talking to other women, reading etc I know more than they do and that is just astonishing when 50% of the population will deal with this hopefully if they live long enough! I'm sorry you are not able to leave the house, on the positive side you will never get strongarmed into unecessary medical intervention. The gynae did not think I needed a hysteroscopy it was the meno clinic on the phone who had not reviewed my scan which showed no thickening of the lining of the womb. I'm sending you the very best and understand the lack of others 'getting' being housebound, for several years I was bedbound (and kind of recently too) but I had been doing better xx

[Claire MM]

Hi Donna, Oh gosh it sounds like you have been through a lot with this too, it sounds like you have a good consultant who is doing all they can. My liver pain started after a couple of days and the really bad itching started that night. The only time I have had such a reaction was in late pregnancy when they thought I might have cholestasis (the itching, not liver pain). I did have the intial severe pain after the hysteroscopy etc but I wasn't under anaesthetic. It wasn't so much the pain that caused me concern. It was the generally feeling unwell. I did also have headaches. I'm glad they feel they can clear the infection and leave the Mirena in, I am sorry for what you are going through. They say it is rare to get an infection - I guess we are the rare ones!! The thing I noticed was that although I stopped bleeding almost right away I had slight amount of yellow discharge and was nothing like I remembered, the GP unfortunately did not pick up on this. Glad the ovaries and everything else are good. I did ring the ward where I had it done but with the coil etc they seemed to think GPs was best. The hospital is quite far and I can't get there and noone is really around to take me so I can't really follow up with them. The actual gynae team were really nice. Do keep us updated with how it goes wishing you the best for a speedy recovery now xxx

[donnafloyd]

Hi Claire,

Thank you for replying the reason I asked about the pain with your liver is I have a dull pain started a couple of days after the coil was fitted and strange thing is I have really dark urine.. consultant says swelling and I know its only been 6 days since op and the dark urine could be the metronidazole maybe am  being paranoid 🤦‍♀️
The consultant is amazing and she refuses to retire which most GPS are like her.. so sorry yo hear your going through all this its frustrating that no one will actually listen and we know our own bodies! I had a male gp that was so patronising to me with regards to hrt last thing i needed when my mental health was an all time low. Think I'll take every day as it come just see how I go, will keep you posted xxx

[Claire MM]

Oh thank you Donna, I think that Metranidazole can make your urine change colour, it is also a really strong antibiotic and in itself can make you feel pretty awful short term, maybe it is swelling that causes liver pain I had never thought of that, or maybe it's infection. It seems a bit of a coincidence that we both have been aware of the liver pain and got infections so lets hope once the infection clears then the liver is not working so hard?! One day at a time absolutely. In fact my daughter got me into a TV comedy show called 'One day at a time' that helped me pass some of the being ill time of the last couple of weeks. I also take B vitamins because they are really good for the liver and antibiotics can deplete b vits as can stress and I think it's been pretty stressful! I wish you well and so glad you have a good consultant who is treating you well she sounds lovely and it makes all the difference to have understanding and support, do keep us posted. I'm sure that a lot of people who have Mirenas without hysteroscopy have less reaction or chance of infection so not to scare people considering a Mirena off, all the best do keep us updated xx

[Flossieteacake]

Thank you Flossieteacake, I can't really afford to go private at all I'm actually exempt for prescription charges and the GP refusing to prescribe is a concern, but mentally I can't afford to have people supposedly advising or treating me physically who don't have my best interests at heart. I also have that issue with complaining and the fear of backlash, 100% relate to that freeze response, it took me two months to send my complaint to PALS and I tried to stop it today because they said it had to be a formal complaint to get a response but they said it is already too late. Anyway I just reassure myself that hopefully in time my financial situation will improve but health is an essential. I contacted the British Menopause Society also and they said they could try and speak to my GP surgery. It's not just me they don't seem at all positive or helpful when it comes to HRT (the GPs) I feel like unfortunately just through experience and talking to other women, reading etc I know more than they do and that is just astonishing when 50% of the population will deal with this hopefully if they live long enough! I'm sorry you are not able to leave the house, on the positive side you will never get strongarmed into unecessary medical intervention. The gynae did not think I needed a hysteroscopy it was the meno clinic on the phone who had not reviewed my scan which showed no thickening of the lining of the womb. I'm sending you the very best and understand the lack of others 'getting' being housebound, for several years I was bedbound (and kind of recently too) but I had been doing better xx

It is shocking you have to think of going private just to get decent care. I understand you did not want to carry on with the complaint but perhaps it is a good thing for it to go through. Something needs to be done about the terrible care you are getting.

It sounds very hopeful the BMS have been in contact and are willing to speak to your GP.

Thank you for the understanding.

[jorainbow]

Crickey what a nightmare youve been through! I hope you'll be feeling much better soon. Sending huge hugs xxx