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Finally had my gynae appointment - what a complete waste of time(29 Posts)
My only option, as I'm not sure if I've completed my family, is to take hormones. I have painful, heavy periods. I've tried almost every pill under the sun and I can't take anything that has ibuprofen in.
No attempt to establish the cause of the pain - I had an ultrasound a couple of months ago that was clear. She took a history, then spoke to a registrar for about 20 minutes, then reiterated there was nothing she could do. I wasn't even examined. She sent the nurse running after me through the department to come back for an examination, but I was on my way out fgs and the doctor had already said "there's nothing that can be done".
I have a leaflet about the coil.
My other option is to have another baby. She actually said that.
So peed off.
I had a Mirena coil put in, to treat heavy periods, and it has been amazing - no periods at all, and no pain. Getting the first one removed, and another one put in was uncomfortable, but over quickly.
I feel your pain. I too have the same problem, I'm only 35 and can't contemplate losing my fertility just yet. But when I am sure, I'm going to have an endometrial ablation.
We just have to grin and bear it, it seems.
I'm incredibly nervous about the Mirena coil. I've heard so many horror stories, and I'm petrified of gaining weight.
Have you tried a Mirena coil or similar, barleysugar? If not, can I strongly advise you to try one - if it doesn't work for you, you get it taken out, and you're no worse off than you would have been if you hadn't tried it - and if it does work, you haven't lost your fertility - you get it taken out when you are planning to conceive.
I genuinely can't enthuse enough about my Mirena - it has made my life so much better.
Yes I had one for about 4-5 months then it fell out without me knowing! It didn't seem to help my periods at the time though.
I've got a gynefix now, which is stitched in. Non hormonal though.
Crossposted, manchestermummy - I do wonder if we tend to hear more horror stories about anything, because 'It was fine, nothing bad happened' isn't really news.
I haven't had a single problem with mine - I am obese, but that is down to depression and not caring enough to look after myself. I was like that before the Mirena, and whilst I have gained weight since having the Mirena coil, I am sure this is to do with my other issues, not the coil.
So sorry to read this. No wonder you are peed off; I would be as well.
Neither of you should grin and bear it.
Its all very well treating the symptoms but the cause needs to be properly determined.
Saying to you that there is nothing they can do is something I would be complaining to PALS about. This is poor service on the part of the hospital and I would certainly put in a complaint.
Endometriosis is not picked up on an ultrasound scan in many cases and it looks like you saw someone who was completely out of their depth and had no idea.
You ideally need to see a consultant gynae with an interest in endometriosis.
Do not give up, make a complaint and put in a request to see a consultant gynaecologist at another hospital (preferably in your nearest city rather than town). Also if your GP practice is unhelpful then I would certainly change GP practice (that is easier to do these days).
St Marys Hospital in Manchester actually has the "North West Pelvic Pain and Endometriosis Centre". I would contact them forthwith.
Do not put up with being fobbed off; apart from anything else these types of issues impact on your day to day lives.
I'm sorry it didn't work for you, barleysugar - and Atilla is right - neither of you should have to live with this, and I'd second her advice to push for better treatment.
I second the recommendation of St Mary's in Manchester - I did my nurse training at the MRI, and did my gynae and obstetric allocations at St Mary's - that was a long time ago, but it has always had an excellent reputation.
Do I need to go back to my GP? I'm going to be changing GPs as it is because this has been the final straw.
You can take tranexemic (spl)acid for heavy periods which stems the bleeding. This is not a hormone.
Whitegrenache it makes me very unwell, as does Mefenamic acid.
You can certainly inform your current GP practice, whether or not they would be interested mind you is another matter entirely. I would contact St Marys in any case.
Do let us know how you get on.
Does seem to be a common attitude - I was told I could either get the coil, put up with my symptoms (which at their worst had me either bedridden or in hospital) or have an endometrial ablation. I want to have children one day so the ablation just wasn't an option, and I couldn't work if I was just to 'put up' with it. Had the coil fitted, which at first was absolute hell but I haven't had a proper period now for almost two years and I don't miss them at all. I get some light spotting at times but I don't have the other crap - no more monthly vomiting and diarrhea, fever, hallucinations, all over body agony, night sweats, fainting ..
However - and this is what I mean by it being a common attitude - when they mentioned endometriosis they said I 'most likely' have it but they won't go any further because there's not much they can do even if they find it. So I basically know that I have it, one day I'll need the coil out and all the issues will return again.
Have gone down the line of trying other doctors but it happens I've seen all the bloody gynaecologists in the area , so not much option left really!
It would be good to get these things sorted out, seems it depends very much where you live as to what care you actually get.
to all who are dealing with this crap.
I'm going to see if I can call the consultant's secretary and see what I can do, and complain to PALS. The more I thought about it yesterday the crosser I got. I've also just read the NICE guidelines again and none of what was recommended happened yesterday.
The Mirena coil was an absolute life changer for me. Would it be worth giving it a go?
I think I'd be happier about something like the Mirena if I knew why the pain was there. I had awful pain in my teens and twenties, a window between the ages of 28 and 31 while making babies where things settled, all for the pain to start again in spades.
I was waiting for "bad period pain" when I was pregnant and waiting for contractions, which resulted in being sent home at 4 cm dilated because I was "coping too well" and in both labours eventually admitted at 9 cm because we'd sat at home waiting for "bad period pain".
The doctor I saw yesterday seemed to think I was very lucky to have good labours .
Sounds awful, but she seemed very young and I can't think she'd been qualified very long at all, as a doctor, nevermimd some level of gynaecologist.
Truthfully, I want another baby so much it hurts sometimes. Our circumstances are all wrong; it's off our agenda. To have someone be quite flippant about this was actually hurtful. I appreciate this is my issue, however.
Mirena has been great for me. Another voice suggesting you might only hear the problems not the good news stories.
Your pain sounds awful. I would be tempted to give it a go. If it doesn't help you can always have it out.
So, I called PALS and the nurse manager I think!) has just called me. She made me feel like a complete idiot.
I've been discharged - which the doctor never mentioned - and there were inaccuracies on the letter that's gone to the GP which I'm not happy about.
They dispute that the nurse came after me to tell me to go back for an examination and will "have a word with the nurse".
The woman I spoke to said that I have no options barring the Mirena, that as my scan was clear there's no need to investigate further, that it's the GP who should be sorting pain relief, and really the hospital only deals with complex things, and painful period are normal.
But hey, I can just have another baby, or wait for the menopause so it's all good.
I'm so upset.
MM....Sounds very like me even down to the birth stories!
Nhs is rubbish for chronic conditions.
If you can please see a private gynae and ask to be investigated for endometriosis which does not show up on scans
re your comment:-
"I had awful pain in my teens and twenties, a window between the ages of 28 and 31 while making babies where things settled, all for the pain to start again in spades".
I would say that is likely due to endometriosis (and my experience of that disease is very similar to what you describe above).
Re this part of your post:-
"The woman I spoke to said that I have no options barring the Mirena, that as my scan was clear there's no need to investigate further, that it's the GP who should be sorting pain relief, and really the hospital only deals with complex things, and painful period are normal".
You have really been fobbed off here and badly so; chronic period pain is not normal at all. You really do need to see a gynae who actually knows what they are talking about rather than some inexperienced person like the one you saw previously. Endo as well does not show up on internal ultrasound scans; I have had more of those than I care to mention and my endo was only seen on laparoscopy (keyhole surgery). Your GP as well has been less than helpful IIRC and if that is the case I would change GP practice.
It wasn't actually an internal scan, just a 'normal' one (don't know the correct term!).
The nurse's attitude this morning was poor. She suggested I came back but I really don't want to go: it's been made abundantly clear that I had no business being there as "nothing can be done".
Well you need got find a better gp!
And as for it getting better with meno! Ha!
I have just started hrt at 42....it ain't No picnic!
"It wasn't actually an internal scan, just a 'normal' one (don't know the correct term!). The nurse's attitude this morning was poor. She suggested I came back but I really don't want to go: it's been made abundantly clear that I had no business being there as "nothing can be done".
That's even worse; you have been failed here by these people and you should never return to that particular hospital.
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