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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

No one cares about my vagina

116 replies

Fauxgina · 21/11/2016 11:27

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
faecal incontinence
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
and more.

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.

Sad
OP posts:
shallichangemyname · 21/11/2016 12:50

my original post re the FOI request - the word evaded me at the time I wrote it, but it's target not" guideline". so your questions need to ask what is the official target period in which treatment is meant to be given, etc. The NHS is all about targets these days.
I feel sad that it is necessary to do things like make FOI requests, but it's the world we live in and you need to get your treatment OP.

carefreeeee · 21/11/2016 12:49

Sounds shite. NHS has really declined in the last few years. Unfortunately the current government don't care at all so you will need to argue your way up the queue. People need to vote labour in large numbers otherwise more and more people will suffer like this.

shinynewusername · 21/11/2016 12:47

PS Great advice from Shali

DoItTooJulia · 21/11/2016 12:47

Caste=care. Sorry!

Mouseinahole · 21/11/2016 12:47

My dd has just had surgery for a bladder prolapse which happened after the birth of her 2nd child...7 years ago.
She wasn't as affected as you op but she couldn't run, walk far or really enjoy sex. She was peeing many times a day. She was offered no post op support and has just made a private appointment to see a specialist physiotherapist.

DoItTooJulia · 21/11/2016 12:46

It's crap. You're right.

I've been fighting to get caste for a family member and it's exhausting constantly having to chase up forgotten things, correct things, get the appointments we were told we're coming, getting letters for appointments the day after the appointment.

As much as you don't want to hear it, you need to make a bloody fuss. Do you think your consultant is the best there is? If not find one and ask for a referral to them. I have actually emailed a consultant out of the blue that I had found online and asked for his help. He replied to my email within the hour and got us into his clinic 4 days later and the care has been fantastic ever since. In our case we had a crappy consultant and the minute we got a good one, it was all stations go. Emailing that surgeon saved my Mum's life.

Flowers
shinynewusername · 21/11/2016 12:46

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

Please don't do this. I am very sorry for your distress, OP. It's crap and you are right that women are expected to put up with a huge amount (though, in fairness, services for erectile dysfunction are also under-funded).

But GPs do not control the speed at which a patient is seen. It is totally unfair on other patients and unproductive to pester your GP - all it does is waste an appointment over something the GP cannot control

GP appointments are a precious resource - I never cease to be amazed at the MNetters who can't see the connection between advising patients to "turn up every few weeks to pester your GP" and the lack of GP appointments. If every patient on a waiting list does that, tens of thousands of appointments will be lost every year.

Contact the PALS service at your local hospital and the local clinical commissioning group - they are the services that actually control how quickly you are seen.

PollyPerky · 21/11/2016 12:46

OP I think the circs are different across the UK; some areas have shorter waiting lists, it all depends on where you are and I don't think women's health is being singled out for long delays. I also think there is the option of having surgery anywhere- not your local area- if waiting lists are shorter.

I was trying to helpful and I still say you should go back to your GP and tell them how badly this is affecting you. You don't need any more examinations- I assume you've seen a consultant and are on the waiting list?

As others have said, you could pay for the op and put it on a credit card. (I know this is far from ideal and maybe not even possible but I'm trying to be practical.)

Or your other option is to have one private consultation for £150 or so, with the gynae who will do the surgery on you and see if they can bump you up their NHS lists once they know how terrible you feel.

Coffeethrowtrampbitch · 21/11/2016 12:44

That is so shocking and unacceptable.

Next time you have a consultant appointment, don't leave until you get treatment booked. Do not be fobbed off, do not get up and leave your seat, not even if the consultant is standing holding the door open.

They are the only ones who can move things along, and they are always busy. Make it clear they will be even busier as you aren't moving until you get seen, repeat all the symptoms you have to live with and ask what is being done right now to alleviate them.

I think in times of crisis it is true that the squeaky wheel gets the oil, and the consultant is the best person to squeak at. It shouldn't be like this, but if it is you will have to fight to get the treatment you are entitled to, even though you should not have to.

I've extensive damage from giving birth, every time I've had a gynae procedure a HCP has made an unpleasant comment which has reduced me to tears. None of them have ever offered any help or advice, just bitchiness, and I think that is typical of how women's health problems are viewed in the NHS, even by other women.

EllieHJ · 21/11/2016 12:39

You poor thing I hope you don't have to wait too much longer.

I also need to get myself sorted after three kids and I have been putting it off because I know it will be a nightmare and it is difficult to constantly get your bits out for different people all the time. I had some first timer stitch me up after my 3rd (last one) - I have no idea what she did but it was bloody painful....and a prolapse after my second and my bits have never been the same since.

I should have said something seeing as this is the same person that cut the cord in the wrong place (on the baby side) and covered me, my newborn and half the room in his blood. I have never seen doctors arrive so fast! But you are so high after giving birth and grateful you and your little one have come through it on the NHS that you suck it up and think I'm just lucky to not have to pay for this!

Good luck with your treatment and thank you so much for reminding me to book an appointment with my GP to go on the list for treatment. Hopefully we will both feel a lot better in a year or so!!

OldBootNewBoots · 21/11/2016 12:36

sounds bloody awful, you have my sympathy, I couldn't even cope for a few months with this. Can you try seeing a different GP every time if you're in a practice of GPs until you get one that takes it seriously?

GizmoFrisby · 21/11/2016 12:29

I feel your pain. I have been bleeding heavily for 18months,nearly 19. Since the birth of my daughter. All I get is fobbed off. And I hnderstand how it has an effect on your whole life. Fingers crossed you get sorted soon.

Shakey15000 · 21/11/2016 12:23

Fellow prolapse sufferer here who totally understands.
I see my consultant on Wed and am going to beg to be put as a priority if surgery is on the cards. I'm trying to hold down a FT job and it's so hard Sad

shallichangemyname · 21/11/2016 12:22

Another option re private is just to see the consultant privately but tell him you can't afford the op privately. You've then cut a chunk off the NHS waiting time by not having to wait for the consultant's appointment.

Also, many GPS assume the problem is gynae and refer patients to a gynae consultant when in fact often the issue is colorectal and you should be seeing the latter. I didn't mention this in my post above because I went private and didn't want to be criticised for it, but after 4 DCs I had a rectocele and was referred by my GP to a gynae consultant. A friend was suffering a similar problem and someone had told her to go to a colorectal surgeon so she took a second opinion. I did the same. After some awful, invasive tests which I try to forget my problem was not vaginal and started a bit higher up in the intestine. Had my friend not guided me to seek a second opinion, rhis would not have been discovered and I would have had unnecessary vaginal surgery which wouldn't have solved the problem at all. I ended up having keyhole colorectal surgery.

Malermalergoni · 21/11/2016 12:22

Yanbu.
I totally hear you on the referral system. I've been there for a different issue and it would reduce me to tears at each appointment. The anticipation of the eagerly awaited magic date, the let down, the passing the book. Awful. The worst was when they'd say 'what do you think we should do to move forward?'
I had private surgery in the end, but it was expensive. I need a second op and this time I'll go to Eastern Europe, where the same op is a third of the price, and the standard far higher. Of course, I shouldn't have to, and neither should you.

Sugarpiehoneyeye · 21/11/2016 12:20

Faux, you really need to make yourself heard.
Tell them, not only is your day to day life becoming totally intolerable, but you are feeling destroyed mentally.
I really feel for you.
Please take the good advice of Shallichangemyname.

QuimReaper · 21/11/2016 12:19

Also triple fucking gold star to shalli for that post Star

Alyosha · 21/11/2016 12:17

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. Flowers

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.

QuimReaper · 21/11/2016 12:17

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 Flowers

peggyundercrackers · 21/11/2016 12:13

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.

shallichangemyname · 21/11/2016 12:13

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. Good luck. 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.
AChristmasCactus · 21/11/2016 12:12

YANBU at all. I'm sorry you're going through this.

Prawnofthepatriarchy · 21/11/2016 12:10

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.

Agerbilatemycardigan · 21/11/2016 12:09

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' Angry 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 Sad

ItShouldHaveBeenJingleJess · 21/11/2016 12:08

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.