No one cares about my vagina

[Fauxgina]

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.

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.

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.

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.

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

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.

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?

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!!

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.

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.

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.

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.

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.

Caste=care. Sorry!

PS Great advice from Shali

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.

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.

Having had continous gynaecological problems since I was a toddler I fully agree with you that women's health issues are misunderstood and woefully underfunded. I had major vulval surgery when I was 20 and the surgeon said if I got sore - if - to take two paracetomal and lie down. I had 25 stitches and couldn't walk for a week.

I also collapsed , completely blacked out at my work in February with what felt like period pain. Work sent me to A&E who said it wasnt an emergency and to contact my GP. Funnily enough, the male GP on duty didn't want to know and said as I always complained of period pain surely I was used to it and could wait for a routine appointment. I had to then phone gynaecology myself and they saw me within an hour thank God , I was in 'cervical shock' and my mirena was too small for me (despite me complaining for 2 years noone noticed this before).

And they question why I'm frightened of pelvic exams - I've been shouted at, had my legs forced over the bed rails so I couldn't stop them if I wanted to, been left humiliated and feeling dirty and all sorts.

I sometimes feel like noone gives a shit. My GP , my own one not the ones on duty etc, understands but I think only because she has fibroids too. She gets it, I don't feel afraid with her and she makes me feel like I am worthy of respect from other HCPs.

I sometimes want to write it all down and send it to someone in my NHS board. I doubt that would help though and why should I have to tell strangers about my vulva and uterus and ovaries? It's crap, I really really feel for you and wish I could come see you with a big bottle that we can drown our upset in!

I wholeheartedly agree with you, and I think that, while the practical advice given by other posters is very good, it's shocking and humiliating that you have to cry and describe incontinence in detail to be taken seriously. Hope you get the help you need

yanbu

I have had a rectocele for 17yrs, since the birth of my child aged 16. I had years (14) of Drs saying they had no idea why my poo settled in a pocket of back passage inside my vagina and had to be digitally removed, until I finally found a corner of mumsnet where it was discussed, and a physio who had had the same symptoms and could diagnose the problem with a two minute conversation.

No treatment offered. The NHS physio I saw advised me to get private consultation and take the results back to my NHS GP, as that was what she'd had to do.

Men wouldn't have to put up with similar.

My daughter was on the waiting list for an operation. After 6 months of chasing up with the consultants secretary to be then informed that it would be another 6 months wait at least, I told the gp to write a letter. She did, because my daughter was repeatedly going to A&E, including 999 call where they gave her morphine, during this wait for the operation.

I then left it 2 weeks, rang secretary back and said if she didnt get a date within a month I was going to the papers, put it all over the internet etc.
She got a date the very next day, for the op with the same consultant but at a different hospital, and had the op a month later.

Sometimes you do have to push push push. Shouldnt have to but if you want it sorting, pull your finger out and dont let it drop.

Sounds utterly shit OP & I hope you can get it sorted.

This government couldn't give a monkeys about the NHS or anyone who needs to use it and unless the public start understanding what they are doing (underfunding, dismantling, quietly selling it off..) with it before it is too late it will only get worse. The people who work on the front line for the NHS are incredible and providing the best service they can despite massive cuts, lack of funding and adversity.

Thank goodness they have the money to spend 200 billion on trident though eh !?

I don't have any advice but just wanted to give you these and say YANBU at all, provision for women's health is fucking atrocious and no one but those affected seem to give a shiney shite. It's utterly infuriating

Hi OP

I have not read past the first page and I DO think this is a feminist issue, but....

It is not necessarily different for men.

DH has had severe ED problems since his mid-20s (now late 30s). ED can be a sign of circulatory/ cardio problems I believe. In his case they were also related to chronic prostatitis which left him in too much pain to walk properly sometimes.

Over 10 years, and 3 different GP practices, do you know how many consultant referrals he got? 0.

How many even just basic physical exams by the GP themselves? 0.

They did however give him a bumper pack of antibiotics to take if his prostatitis symptoms came on

It only changed when we were ttc and couldn't because of his issues. I basically made him go to the GP every time he had an attack of prostatitis. When he'd gone 4 times between Feb and June, they finally referred him to a consultant andrologist who saw him once and said that this happens to some men and he'd hopefully grow out of it.

That was 7 years ago. He hasn't.

I remember my GP actually refered me to Burns and Plastics in the end. That got me an appointment within the month to see the head professor of gynaecology for the area. I'm still not sure how that one worked exactly. GP said she could do it because it wasn't totally out of plastic surgery's expertise but she knew they would send it down to gynae anyway. Worked a treat in terms of actually seeing someone and getting the surgery.

Have you asked about the costs of going private? We constantly have this kind of trouble and when we finally decided to pay privately for ds to have surgery the operating only cost £350. We got the bill in the post.

I'm sorry you're having all this trouble. We're in a very similar situation and I'm considering a private GP, thinking hard about it though as he charges £84 for 15 minutes.