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.

It's because of people like WLF that these problems aren't a priority and women are supposed to consider themselves 'lucky'

Well done for setting feminism back 100 years, WLF 👏🏻

If only that would happen Raven, this thread doesn't have enough sex/drama/cheating etc for the fail to be interested I expect. Such a shame 🌺

Feel for you op. I had a horrific hernia after 3 kids. My internal organs were very literally hanging out. Had to wait a long time for surgery on the nhs and jump through hoops (physio that they knew wouldn't fix it, see consultants...ling wIring list) but it was so worth the wait. I would try to get bumped up the list. Go back to docs and say you are getting very depressed and can't cope. So sorry op, hugs x

You poor woman, that's horrific. I had triple prolapse, my uterus was almost external. It happened a year after my first baby but was told like you, finish my family. I had my second child and it took till they were 3.5 to get my surgery. It was a hysteroplexy which puts a sling under the womb and hitches it over the base of your spine. The vaginal walls were reinforced with mesh. For those 3 and a half years I was in constant pain and it had a serious affect on my mental health. I had to constantly harass to get it. It's not how it should be.

I suffered from grade 2 cystocele, rectocele and urethracele for 4 years without any treatment. I had constant painful urinary symptoms, difficult sex life and felt like my bloody life was over.
I struggled to get a gynae referral and when I eventually did 3 years into my issues I had an awful, rough and rude consultant who left me in tears and still no further forward.
The only useful thing he said was that my pelvic floor itself was in good shape and my problem was stretching/thinning of the vaginal walls.

So I started looking at ways to thicken them up... Tried supplements, vitamin e oil, massage all bull poo. Then a few months ago I saw a news story about a laser treatment predominantly marketed towards tightening but it also thickened the walls. So I thought I'd enquire to see if it might help me. I had it done about a month ago and most of my symptoms have eased tremendously and I'm only on the first of three treatments.

I don't know if it's for everyone and obviously it wouldn't help those with pelvic floor weakness but if the issue is atrophy/stretching/hormonal thinning then it just might help.

The lady who developed the treatment is trying to collate data to present to the NHS in the hopes of there being a middle ground between suffering and surgery for NHS patients, she's really lovely and very frustrated at the current lack of options.

I'm not sure if I'm allowed to say the name of the clinic on here but pm me if you want it as I genuinely can't speak highly enough of them!

Well said to that doc, ocelot.

OP, much sympathy

try PALS

you shouldn't have to put up with this

www.nhs.uk/chq/pages/1084.aspx?categoryid=68

Just occurred to me you could also contact the BBC if you want to use the media...I just read a story on BBC news about NHS vs. social care funding.

Thanks Raven. I have actually contacted Woman's Hour and Inside Health both Radio 4 programmes. Heard nothing back.

Little thread bump but can't help but be reminded about my own feminist vagina issues when I see this kind of crap www.huffingtonpost.com/entry/donald-trump-abortion-men_us_5886369be4b0e3a7356a7910?

Policies about women's bodies and policy funding being made by men. I realise I don't live in America but in the UK we are still dealing with a system set up from years of men deciding what is important and what is a "woman's problem". It stinks.

Anecdotally, my husband went to the GP recently with pain in his testicles. Whilst my husband was having there the GP phoned a hospital Urologist consultant and got a prescription organised between them for antibiotics for a suspected infection and within 5 minutes he was off having his testicular pain accurately treated.

How long have I been living with pelvic pain? 4 years and counting.

I too have pelvic organ prolapse: rectocele, enterocele, intussusception/rectal prolapse & perineal descent; just two more to collect and I'll need a jute bag for life permanently between my legs to house everything.

Similarly to an earlier poster, I'm in my twenties and have never been pregnant which leads to the wry smile and biological destiny type conservations pretty much every time I'm seen in clinic by the colorectal surgeon and uro-gynaecologist. That focus really is infuriating when I have repeatedly said that I don't want to have children; as the issue really is more that operating earlier (chronologically speaking) means more surgeries across my lifetime as I am relatively young to have experienced the collapse of my undercarriage. The other issue is that there is so much pressure (not only just from all the organs sardining themselves onto my gooch [essentially]) but from the surgeons also as it's a case of "when you can't cope any longer, we'll talk about the surgical options", so it'll be my fault then if I opt for a procedure that doesn't work or replaces my list of symptoms with an entirely new but equally life-interfering list.

It often feels that I am in the no man's land of conservative management phone calls from my bowel nurse to discuss kegels (I picture two wet flannels being slapped together) and the effects of caffeine on the bladder... However, I was prescribed peristeen by my consultant, which is an anal irrigation system which is revolutionary for me. My Mother did cry when I first got all the tubes out over the thought of me having to jet hose myself out every day, but it means I'm not scooping/sweeping/splinting/scraping/hoiking at myself 20 times a day. My GP had no idea what it was, so if any of you are stuck in between referrals, maybe look to see if that could offer some level of control of some symptoms for you.

ebop I've just watched a YouTube demonstration on peristeen, how clever!! I'm glad you've been given a better way of self management. I hope it might help other women reading. I'm actually due for surgery soon which is a nice change from how I felt when I started I wrote this thread - I hope it will be a complete fix for my problems but I am wary it could lead to further complications so I'll keep Peristeen in mind should I need it. Funny how management techniques like yours and pessaries aren't mentioned even during specialist consultations

What surgery are your considering? My personal view is that yes it's a difficult to begin surgery knowing that means when you are say, 50 your surgery might fail and any further surgery could be less effective. But by delaying it another 10 years you will delay failure until you are 60. Which years would you rather you struggled with the 10 years of difficulties from 25-35 or from or your 50-60?

It might be a case of "better the devil you know" and better to struggle through now as you know you are capable of managing the complications and you don't know what the complications will be. But I am god damn fed up of managing mine. Sounds ghastly for you.

A small thought - I know that pelvic organ prolapse can begin after menopause (or worsen) as the ligaments weaken further due to hormonal changes. I know that often the strain and damage has been done during childbirth and pregnancy but that this doesn't show up until after menopause. What strain is the bowel prolapses putting on the ligaments holding up your uterus etc and if you continue to self-manage might it eventually all fall down after menopause? Worth talking through with your urgogynae, I know the gynae thought that the extra straining caused by my intussusception could have worsened my uterine prolapse.

I'm also a member of a very decent Facebook support group, if you would like the details let me know and I'll send it to you via PM.

Fauxgina, I'm glad to hear that you have been offered a date for your surgery and wish you well on your pathway to better health

I absolutely take your point about timing the "risks" at the right time in your life. When I was initially seen by the surgeons 6 months ago I really was at the end of my tether; I had spent 10 years of being bounced backwards and forwards between the GP and gastro with an IBS vs. IBD diagnosis, had to leave my career in the NHS as working on the wards was just entirely intolerable with daily continence misery, let alone repeat admissions to hospital. I finally had a colonoscopy where they found terrible sigmoid and rectal ulceration and that then led to a tell-all proctogram. I feel none of the bastards ever really took me seriously and were more focused on telling me that as a student, I probably didn't eat well/had a dirty kitchen or sodding chlamydia. I was suggested to try yoga at one point...

Now that I've given over control of my bowels to the peristeen, the ulceration has improved and it should slow the rate of further deterioration down, but I will require the repair. I'm seeing them again in four months re the posterior mesh repair and blocking off of the enterocele.

I do urge any woman reading this with poo-based misery to explore whether irrigation would be suitable for them. I was backwards and forwards to the toilet all day every day (when I was in halls with a shared bathroom, I sometimes had to sleep in a disabled toilet), the horrendous pain, incontinence & bleeding and feeling like I was going to invert myself simply trying to clear my bowels out. It's not a fix but might improve quality of life whilst you are awaiting it.

I just re-read your last paragraph and wonder how any body could hear that and advise you to "Try Yoga". Absolutely incredible that a health care professional would dare say that to you!

Some of the dismissiveness from HCPs on this thread has been appalling.

Hi op just wondering if things got sorted for you?

Nope you are wrong when you say they wouldn't leave a man to suffer. Won't go into my husband's private medical stuff here but he is being given the run around by the NHS and has been in pain for over 4 years with urinary issues. They keep repeating the same tests and not getting back to him with answers and he has been left in pain.