No one cares about my vagina(115 Posts)
I have had a bad pelvic organ prolapse since the birth of my son nearly 4 years ago. I was relatively symptom free at the time and I was told to finish having my family and when I had stopped having babies I could get fixed up. I went on to have one more child.
My symptoms have been getting worse -
chronic pain needing daily painkillers
pain during sex and after orgasm
lack of sensation during sex
cervical irritation and spotting
needing to pee 10 times a day
difficulty walking on occasion
My youngest is 2 and he will be my last.
Women's health in the NHS is so chronically underfunded that so far I've been waiting 18 months and I am being told to wait at least 6 more before we can schedule an operation in.
I am mad as hell.
I'm cross about the lack of treatment I've received so far. I'm angry I have to wait months in between invasive and horrible tests. I'm mad I have to chase appointments. I'm mad that no one really cares that I am a young 30 year old woman whose life is in limbo and I have to continue to look after 2 very young toddlers/preschoolers on my own with all these complications.
And on days like today I can't help but think if I was a bloke suffering with pain and incontinence and erectile dysfunction there's no way I'd be left on this slow conveyor belt of shit treatment. There's no way he'd have to turn up every 3 months and get his knob out in front of a different person and suffer a painful and embarrassing examination, and then wait another 2 months for a consultant to tell him what he already knew and then book him in for another test in 3 months time.
And there's no fucking way that if men had to give birth out of their penises which became scarred, broken and damaged that natural childbirth and instrumental delivery would still be the expectation of today.
Have you really pushed your GP to ask them to try to move you up the queue?
If the symptoms are affecting your mental
wellbeing you may find yourself bumped up the queue
Sorry Polly, I understand that was trying to be practical and helpful but I'm also really fucking fed up of the fact that somehow I feel like I should be doing more to help myself.
Can't someone do something without being forced? Every time I have to fight for assistance for such an embarrassing personal problem, every time I have to cry in front of someone, every time I have to show someone a picture of just how bad my vagina looks to get help it just makes me feel even fucking worse.
These are my sexual organs. I'm a young Mother. I shouldn't have to keep going around consistently badgering people about my fanny.
This is the state of the NHS at the moment - I believe for people just starting out with these problems they can be waiting a year just for an initial consult!
I'm sorry, that sounds absolutely awful and really miserable for you.
That is shit Fauxgina, utterly shit. I don't understand why more people aren't furious about the state of the NHS. It's as though we should all just be terribly grateful for anything we get and so put up and shut up. Everyone says, well at least we get free treatment, be thankful you're not in the US. But what about continental Europe where afaic see they get a far better health system without crippling costs.
I wish I knew what the answer was, I just feel so angry and ashamed that you're going through this.
YA Absolutely, Definitely, 100% NOT BU.
Women get such a shit time of it with the NHS when it comes to pregnancy and childbirth injuries.
Men wouldn't have to put up with it if the situation was somehow reversed.
I hope you get your treatment soon and get a bit of relief.
I think you should spell out your symptoms in terms of how it affects your life. So "faecal incontinence" translates to "I can't go further than 20yds from a toilet" or "I'm changing my nappies more often than my kids'", "chronic pain" and "difficulty walking" to "I'm in so much pain I can't even take my kids to the park", the sex problems as "I can't bear the thought of having sex with my husband" and so on. Stressing the practical difficulties, especially as you're in charge of young children, may drive your point home. Don't worry about crying; that will underline your frustration and desperation. Refuse to have any further intimate examinations until you've been given a date for admission.
It sounds grim. Battle on.
This sounds absolutely terrible. I understand your anger at feeling it's up to you to sort it out, but sadly that does seem to be how the NHS works when you need treatment. It's abysmal that your condition should be regarded as 'non-urgent'.
Nothing practical to suggest other than going to the GP and letting them see exactly how bad you feel - I've found my GPs have been much more proactive about prodding the system on my behalf when I've been upfront about my distress. I know it doesn't come easily to most of us.
GPs are struggling with the system too. There's only so much they can do but the fact is that waiting lists have nosedived over the last few years. I'm waiting for an 'urgent' referral and my GP has been superb but we are still looking at an 8 month wait minimum. It's horrendous.
And I agree with you about women's health being bottom of the list of priorities. The number of friends I have who are having ongoing untreated symptoms (some very major) from birth injuries is huge. It's a massive silent issue that isn't being dealt with because it doesn't affect the men in charge.
It is unbelievably shit. I honestly think many gynae patients are being left without dignity, trying to manage conditions that are just awful. The dismissiveness with which these issues are treated is terrible.
Can you afford to pay for private? Its shit but seems to be the way to get quick treatment
Preach my sister!
I have always said the same; if men had to give birth and ever had these sorts of problems it would be considered emergency
They would never be fobbed off with the age old 'it's part of giving birth/ having kids etc etc'
You have summed up my feelings perfectly
I hope you get the surgery you need and you can be happy my dear
support from me
I agree totally that Gynae issues are under-researched and underfunded because they are women's issues
I know the point is that you shouldn't have to fight, but have you escalated this to the hospital?
You could write to the Senior Consultant and/or Manager for Women's Services and/or the Chief Exec of the Trust?
I'm really sorry you're going through this.
I have three pieces of practical advice - have you looked up the 'any old prolapse' threads on here? Full of good advice.
Have you been on 'the whole woman' website - it's very anti surgery. I'm not sure which is the right attitude to take (probably a balence and case by case) but they might have helpful advice while you're waiting to be seen.
Thirdly, and I'm sorry I have no idea about your financial situation so sorry if this is totally useless but could you consider going privately? It can be a big mental adjustment to spend a lot of money on yourself like that when you know you could just put up with it and be seen by the NHS eventually. I did it with a episiotomy that wasn't healing properly and the speed with which I was seen and time the gynae was able to give me was amazing. I'd rather have done that than gone on holiday for example.
Different situation but I remember my own issues with the coil; I was pretty much permanently bleeding, had lost weight, was pale as fuck and looked ill. Repeated appointments told me the same thing, it was the 'safest option'. It was only when I cried in front of my GP that she finally bloody realised how distressed I was. Women's health services are crap.
Have you tried the MH route OP? If they think that this is affecting you mentally and add that to the fact that you are taking care of young children, they should push things forward more quickly.
I know it's shit OP, and the way that the medical profession dismisses women's problems as 'par for the course' (yes, I've heard them described as such) and 'it's part and parcel of having children' makes me fucking furious.
As for the argument that if men had children these sorts of conditions would be treated seriously, I very much doubt it, as the dynamics would be reversed and they would be seen as the weaker sex, ergo, they would be treated just as badly.
Sorry for the rant, but these sorts of things infuriate me as I feel so impotent to do anything about it. I dread something like this happening to one of my DDs or granddaughter. We may not even have an NHS by then
Oh, OP, what a horrible situation! Poor you. And you're quite right to say that it's because you're a woman that you're getting such shoddy treatment.
I think that, however unfair it is, and it is totally unfair, your best bet is to pester your GP. Turn up every 4 or 5 weeks describing just how limiting and debilitating your problems are and, as PPs have said, if spelling out the details makes you cry so much the better. You want your GP to go into battle for you.
A friend has a proverb: It's the hinge that squeaks that gets the oil. Be that squeaky hinge.
YANBU at all. I'm sorry you're going through this.
OP, in situations like these a bit of formal rattling of the cage works wonders.
1. the NHS hate complaints, they ruin the statistics. There will be a formal maximum waiting period (eg 6 months) and you can complain if they exceed it.
2. all official bodies, including the NHS, hate Freedom of Information Act requests.
I suggest you write in to the consultant, explain how long you have been waiting, the physical and emotional effect on you of the long wait and how acute your symptoms now are and how they affect you on a daily basis - express it like you did above which I think is very powerfully worded.
Then ask 1. What is the NHS Trust guideline acceptable wait for the type of operation/treatment you need; 2. for what period does the average patient suffering from a similar type/degree of pelvic prolapse have to wait before receiving surgery/treatment within that NHS Trust; 3. how many other patients currently remain on the waiting list after the period in 1. ends; 4. how many complaints have they received from other patients about delay in receiving treatment/surgery for a pelvic prolapse. End with saying that you would like to make a formal complaint at the lengthy period you have had to wait without treatment, and could they please tell you what the process is for this.
Hopefully this will get the ball rolling.
Any request for information is treated as a request under the Freedom of Information Act so you don't have to actually say that in the letter if you feel it's a bit aggressive (although you could end it by saying "please note that the above request for information is made under the Freedom of Information Act").
The acceptable period in my NHS Trust for prolapse surgery is 6 months. When my friend went to a consultant's appointment she was a couple of months outside the 6 months and felt there was no end in sight, she mentioned this and asked why she hadn't been treated within the time period and they apologised and fast tracked her surgery.
I agree it's awful, there was a recent Guardian article I saw online about how much better other European countries are at dealing with post-childbirth problems.
i don't think the issues are because your a woman struggling. I think its the way the NHS deals with everyone unless you are on deaths doorstep and even then it seems to be a postcode lottery.
For example anyone needing to see a cardiologist for anything in the area I live is waiting 9 months minimum, the local trust say they cant recruit cardiologists and are down 2 consultants and have been for over a year. if you need a CT/MRI/TIA scan, you will wait months, I have 2 male friends who have had their scans repeatedly pushed back even though one has a suspected tumour and the other had a suspected stroke. another friend has just had his operation put back an undetermined amount of time even though he has already waited for over a year already.
its absolutely shocking the way people are being left to suffer.
OP you poor poor thing, this sounds hideous.
I absolutely agree that childbirth would be treated entirely different if it were men having to go through it.
Best of luck
It sounds horrible, so much sympathy for you. You're completely right that no one seems to give a toss about women's health. I hope you manage to access the services you need quickly.
I'm not sure this is possible, but could you go to a women's health clinic and perhaps they could refer you more quickly as they have their own referral systems? Probably a bollocks idea, sorry.
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