MNHQ here: do you have experience of birth injuries that led to longer-term health problems?

[ClaireTMumsnet]

Hello,

We at MNHQ are getting ready to launch the next phase of our ongoing Better Postnatal Care campaign www.mumsnet.com/campaigns/better-postnatal-care. The first part of the campaign was focused on women’s experiences on postnatal wards. This second phase will focus on women’s experiences of birth injuries and related health conditions, especially those which can affect women for months or years after birth.

As part of our campaign, we’re looking for Mumsnet users who are or have been affected by health conditions that arose as a result of birth injuries or difficult births, who would be willing to be media case studies to help publicise the campaign. [MESSAGE EDITED to remove reference to women having given birth in the past three years - MNHQ]

We're talking about things such as painful scarring from birth injuries or stitches, pelvic organ prolapses, pain or discomfort that affects sex, or problems with urinary or faecal incontinence.

We’re looking for as broad a range of experiences as possible - we'd love to hear from both women who sought and received good medical care, and those who have not sought medical care (and those who sought it but did not receive what they needed).

If this sounds like you and you’d be comfortable talking to the media about your experience – anonymously or not – please email [email protected] for more information.

Getting in touch with us does not commit you to acting as a case study. We always run any media opportunities past our volunteers, and you will always have the final say about whether to go ahead with a media opportunity or not.

Finally, ideally you'd be reasonably available and in the country/near a reliable phone during the first couple of weeks of April.

Thanks very much,

MNHQ

Putting my name forward.

Had my daughter in July 2017 and thoroughly let down by lack of post natal care.

My stitches failed and suffered multiple infections and eventual POP. Getting help from GP was impossible as was 10 week wait for appointment.

I'm lucky and have been able to pay for private care, spending hundreds on gynaecologist, physio and trauma counselling. As far as the NHS stats would show I'm fine but that's very far from the truth.

Yes.
My first child was born in 1995. It was a difficult labour, they were back to back. Despite contractions being every three minutes from the beginning, it was about 36 hours until they were born.
Around 15 years after they were born I began to suffer with problems with both my bowel and bladder.
I had a prolapsed uterus, rectum, bladder and urethra.
I had a hysterectomy, a rectocele repair, a cystocele repair and a pelvic floor repair in two separate operations.
They took me ten weeks and nine weeks respectively to recover from.
I'm currently aware that my rectocele repair has totally broken down, but do not want to pursue a repeat operation as the recovery from the last one was so difficult.

Thanks for this campaign, I was shocked at the lack of info about wound care provided to me after 2nd degree tear. I had a similar experience to a PP reading the Guardian article about rectoceles and realising immediately that I had one! Pretty shocking really that we just don't have the understanding/ language to talk about our bodies as mothers.

With the NHS on its knees daily it doesn't really feel like my prolapse is that important, which is really just women getting on with suffering as we have done for so many years. Also friends have had unsympathetic treatment after too tight scars and painful sex "oh we'll treat you after you've had your next child" etc. Well, what if there won't be a next child as sex is so unpleasant??

From articles I read the care is much different in other European countries. Perhaps we need to have a check like the 6 week check but more like 12 or 18 months post partum to flag these issues up.

Fourth degree tear after a vbac. Varying long term effects including bladder problems and sexual issues and some early steps taken to resolve them. Am now considering seeking further support after recovering for a year

Was left with a prolapsed bladder after my first child (5 years ago) and went undiagnosed as doctor just said things were still repositioning themselves after the birth.
Got letter for a smear so went along, but found out I was pregnant same morning, nurse didn't want to do the smear but I asked her to look and she said it was an obvious prolapse!

This gave complications for second pregnancy and birth. (3 years ago).
Have had to chase and chase for help. It seems that if I don't chase after each appointment the next step never happens.

Have practically reached a point where I've given up ad am just going to live with it.
I'm 33. It's uncomfortable.

After my second child 2 years ago we decided that we didn't want anymore I made appt to have coil fitted it. Dr who did this said I had a prolapse - I didn't even know what one was yet alone knew I had one. I never said anything I was too ashamed I didn't realise there was something wrong wirh my own body but the Dr never said anything either.
Afterwards I did my own reading and realised this was probably why I was finding sex more difficult and uncomfortable. I haven't really got any other symptoms - and I haven't done anything about it. With the NHS in an absolute crisis I most definitely think I would not be a priority patient - but after reading this thread I'm thinking if I don't get checked out now I could develop problems later down the line which I never realised.

I have experience of long term health issues as a result of pregnancy and childbirth in my case incontinence followed by depression. I have blogged about this on MMHQ and am really keen to talk not least as I think the link between continence and depression is even further entrenched in the stigma around incontinence than leaking itself. I would be v happy to talk about this.

As background my first child was born 2007 leaving me with severe stress incontjnence and a prolapse.

I had pnd as a result of this and my delivery which was traumatic.

I had AND before my second child as a result.

After my second child in 2010 that was worse resulting in the need for physiotherapist and other interventions including physiotherapist (years) surgery (not mesh) and use of a peasant.

My episiotomy was done with blunt scissors by a student midwife. Doctors had great difficulty sewing me up. For months I thought I’d never walk properly again. GP was no help - I even asked my then husband to speak to him - he was told to be “more of a caveman” when he mentioned sex was impossible. There was nowhere else to turn.

I feel the scar every time I sit down, the “baby” is 40 this year!

My first grandchild was due recently which rekindled my interest in all things maternity. I foolishly assumed things would be a lot better now.

At least women aren’t suffering in silence any more, but they are still suffering. It’s still a lottery.

I'm not sure I want to go through it all tbh and probably isn't relevant to today's pre & post natal care. But here goes, in brief.

I had my first child in the early 1980s and had an episiotomy and then horrendous problems after (2 repair operations - eventually) and then ongoing different problems over the years as time passed. I've lot count of the number of surgeries, (including a hysterectomy which went wrong and I nearly died) all related to the birth but my most recent 'repair' operation was in 2014, over 30 years later.

I am still struggling with certain issues yet am trying to live with them as long as I can as I can't bear the thought of another op which might or might not help, and even if it does probably only in the short term.

It seems you if remove a painful knot / lump of scar tissue you create a weakness somewhere else, and all the problems that brings.

Reading the thread it seems my problems are similar to mineofuselessinformation - I've had prolapsed everything and hysterectomy in 2010, then mesh repair for complete urinary incontinence in 2011 then ventral mesh rectopexy for prolapsed bowel and intussusception in 2014.

Prior to that I had 3 vaginal repair operations, the first one 2 years after the birth in 1983 because penetration was impossible as i was stitched up the wrong shape. The last one was in 2003 (Fenton's procedure) for painful intercourse due to excessive scar tissue.

It seems never ending and I'm now 61.

Thank you

@ShovingLeopard

I'm personally fine (had a private ELCS, which was brilliant). But I'm so glad you're doing this, for the many, many women for whom it was not fine, and who have subsequently been let down again in the ensuing years.

I had my son 8 years ago, he was occupito posterior position. It took the midwife 23 hours to realise, she said she wasn’t allowed to give me pain relief (I was at a midwife unit) she also left me alone for long periods and told my husband she didn’t know if either of us would survive! she broke my waters and called an ambulance. Got to the hospital and she left me so another midwife id never met stepped in. Finally had him and despite not being able to walk I was sent home 6 hours later.
Anyway because of the 23 hours of my son pushing into my spine I have to see a chiropractor every week, I’m in agony every day and I’ve been told there’s nothing anyone can do

Glad to see you have accepted that it shouldn't all be shrugged off after three years. My injuries were life changing and, no, I'm not prepared to have media contact about it. However, I'm pleased to see that MN has changed its original and, frankly, hurtful position.

I’m suffering with terrible incontinence 12 years after my most difficult birth. This is quite recent and I’m not expecting it to get better with age.

I’m posting just to reiterate what pps have said - three years post birth I thought I had just about got away with it

My injuries have ruined my life. Countless operations will never change what happened to me physically or mentally. If I hadn't been so ill in the yrs after giving birth I would have done everything in my power to get the midwife sacked so she couldn't ever go near another woman. I have no interest in talking to the media. I'm just glad this is being given the recognition it deserves.

ClaireTmumsnet I’m not sure why you’ve chosen to give to the one woman in this thread who has posted to say she avoided birth injuries by having a private caesarean? Are you actually listening to what the rest of us are telling you?

You’re acknowledging the one person who says mumsnet is wonderful and ignoring everyone who is sharing extremely distressing experiences and I can’t quite understand what that’s about. Obviously none of us want a bunch of virtual flowers but it seems remarkably insensitive.

I received flowers with a private message.

One thing to look at MNHQ and perhaps campaign for is better data collection. Who is collecting this data? I suspect (please correct me if I’m wrong) that there’s a disconnect because obs/gyn are not seeing the long term effects, because they’re dealt with by different specialities. I would like to see birth injuries followed for the lifetime of the injury and included in the statistics. Right now all I am seeing is items like c section rate etc.
A ‘successful’ v birth is counted basically as a live baby - to me that needs to be qualified with what injuries were suffered. What women need to know is ‘if I give birth at x hospital, what are the chances of a second/third/fourth degree tear/episiotomy rate etc. What is this hospitals long term follow up rate needed for prolapse? Etc.

Data is absolutely critical - it’s what drives our ability to hold people to account and to improve practice. Please make this a key focus of your campaign.

My sincere sympathies to all who have suffered trauma and damage. Women’s health generally is scandalously under-valued. Ante and postnatal care doubly so.

Hello all,

Thank you so much to those who have shared their experiences on this thread. We're here and we're listening. We've been privately messaging users who have shared their distressing experiences, and we can only respond to individual users during our office hours.

@hazeyjane

Is this only concerning vaginal births or long term difficulties as a result of C-sections too?

Hi Hazey

Most of the material we've gathered is about vaginal, anal and/or perineal injuries and prolapses (whatever the mode of birth was).

We don't want to exclude other experiences though (sorry, don't want to be presumptuous about what your experiences are) and it's really useful for us to have a range of case studies to draw on - so please do get in touch if you're up for it.

(Focus specifically on all aspects of mothers' experiences with c-sections is coming, probably as the next phase of the campaign)

@Anatidae

One thing to look at MNHQ and perhaps campaign for is better data collection. Who is collecting this data? I suspect (please correct me if I’m wrong) that there’s a disconnect because obs/gyn are not seeing the long term effects, because they’re dealt with by different specialities. I would like to see birth injuries followed for the lifetime of the injury and included in the statistics. Right now all I am seeing is items like c section rate etc. A ‘successful’ v birth is counted basically as a live baby - to me that needs to be qualified with what injuries were suffered. What women need to know is ‘if I give birth at x hospital, what are the chances of a second/third/fourth degree tear/episiotomy rate etc. What is this hospitals long term follow up rate needed for prolapse? Etc.

Data is absolutely critical - it’s what drives our ability to hold people to account and to improve practice. Please make this a key focus of your campaign.

My sincere sympathies to all who have suffered trauma and damage. Women’s health generally is scandalously under-valued. Ante and postnatal care doubly so.

Yes, we think this is a great point. When we launch we're going to ask MNers what sort of action they think needs to be taken but we're going to highlight data as part of that and we've got a few suggestions for research/data gathering.

My youngest is 3y 9m. As a result of his birth by c-section I have PTSD. He has long term problems as well.

I don't know if my experience is relevant to your campaign as my birth was a c-section and my health problems weren't physical. I did technically have a birth injury though as the registrar made a bit of a mess of my womb in his haste to get ds out. My scar looks normal on the outside but the one on my womb is L shaped.