Rectocele & Repairs continued....

[CAZ1958]

Rectocele & Repairs...continuation

Hiya Ladies...
Don't know if this will work, above is the Subject Title
Don't want to lose my friends.
Will come back with a link if poss !!!
Fingers crossed
ZZZ

Morning all! Over the weekend I spoke to my mum ad sisters, told them I'd probably had a prolapse... And feel like a massive weight is off y shoulders!!! They were all really supportive, and gave me the while don't worry about it speech!! Ans also the why didn't you tell us earlier speech!! Lol it's a massive relief to know I have support should I need to have an operation!!

So tomorrow is d-day... Just want to get it over with and hopefully get the ball rolling!!

Nannasylv couldnt agree more with you re the lack of consistency in diagnosis and not making use of the diagnostic equipment .
The pity of it is that I dont feel its down to lack of guidelines etc I feel its down to differing attitudes and working practices of consultants which would
greatly improve if we were all treated as individuals and actually listened to when attending long awaited appointments. I have attached a link from the
Royal College of Obstetricians & Gynaecologists re the management of my condition just a pity I didnt find this sooner or I could have shown it to my GP and the consultants . I had a fantastic gynaecologist for over 20 yrs & I attended his colposcopy clinic, he performed a cone biopsy & my hysterectomy 12 yrs ago he was so patient & approachable taking time to explain everything pre op & post op sadly he passed away a few yrs ago

www.rcog.org.uk/womens-health/clinical-guidance/management-post-hysterectomy-vaginal-vault-prolapse-green-top-46

Take care xxx

I also couldn't agree more with it been down to attitudes - in my case GP attitudes & making unfounded assumptions about peoples personalities

The first GP I had here made it very clear she was writing me off as a complainer & when I didn't accept that I was pushed into taking anti depressants before she would do ANYTHING - simply because when I arrived at her surgery having moved cities, I was a heavily pregnant older MTB with a list of potentially dangerous pregnancy complications that I was being monitored for by my old GP & hospital - no GP would take me on - my DHs would, but first available appointment was 2 weeks after I was due to give birth - I literally walked the streets asking various surgeries until one finally told me I would have write to the PCT & be allocated a GP - so as you can imagine by the time I finally got to see a GP I was naturally very stressed & worried & being used to have a good relationship with my old GP, one where I didn't have to pretend to be dumb & wait for THEM to call the shots, I listed off what needed monitoring - big mistake - it was downhill from there onwards

When I look back, I first saw her a few months after giving birth, complaining of bowel problems, low back pain, leg problems, severe groin & leg pain causing my leg to collapse on me & feeling as something was pressing on my spine from the inside causing nerve pain problems as well as gastric problems & generally feeling very unwell - she gave me prozac - the groin pain was later resolved & diagnosed as a common childbirth injury pelvic bone problem by a Chiropractor, as I gave up with the GP

I do feel very angry about it now, I've lost 9 years of my life to this, had to give up my career & its affected my DD & my DH - thankfully she's no longer my GP - she left, but she also left her unfounded opinion of me all over my medical notes - I also have Sinus problems, when I asked for a hospital referral to ENT - I was told "I have Cancer Patients, why should I put you before them" - I was still under the ENT hospital before I moved & was still in recovery from surgery - when I finally did get an ENT referral, the ENT Dr went mad & wrote & told her off

I don't know if I can as she's not at my surgery any more, but once I finally get the tests over with & know exactly whats going on, I want to make a formal complaint against her, because I hold her attitude & not listening fully responsible for this situation & my confidence in speaking to GPs been in shreds - her replacement has been little better, she at least was nice & pretended to listen, though I can also think back to several appointments with her, where if she's actually done her job properly & listened to the symptoms I was describing, & my telling her I thought I had rectocele - she should have sent me to the correct hospital department YEARS ago - not the Gynea, or bladder clinic, but the Colo rectal dept

on my last appointment, the Colorectal Surgeon i saw, on realising I had the rectocele - told me I must be feeling like a "blocked drain & everything backing up" - that was EXACTLY the description I used to my GP along with complaint of the bowel & bladder problems - she gave me Movicol - which made me very ill - so on repeating the same symptoms next time I was told to take Senna, despite my protesting that constipation wasn't what I was describing

Thankfully, due to this GP going off on maternity leave I now have a new GP, who took no notice of my notes, DOES listen & so far has been a HUGE help - I've also been diagnosed with H.Pylori, which she was amazed I wasn't tested for years ago, just her attitude has helped me feel more confident pushing for answers & consequently I am finally been heard - & I'm no wuss, I stand up for myself & argue my point, but it still did me no good

I don't know what the answer is, but something needs to be done about some GPs & Consultants attitude thats for sure - its outrageous that theres so many of us on this thread taking years & years to get heard, when after childbirth, it should be a standard Doctors thought process to rule this sort of thing out

MAISIED1959 I noted that you mentioned gynaecologists, but I've just seen one, who said it's not his field, and is referring me back to a different Colorectal surgeon.

I've been bounced between Orthopaedic (because of the affect on my hips/legs), Gynae, and Colorectal, but (probably because they haven't used the technology available) without definite imaging of the cause/s, they cannot really establish the right direction. Meanwhile the symptoms just get worse. I believe that anyone suspected of having a rectocele/cystocele/enterocele, should be sent straight for imaging scans, before they go into diagnosis/prescribing laxatives/painkillers/telling you there's nothing wrong. The guesswork may be cheaper, initially, but gets more costly/painful/debilitating/dangerous, the longer it is left unchecked. It ruins relationships, and robs people of quality life. Is there anyone to whom we can complain? I would like to think that, if enough people say something in the right places, procedures might change. Does anyone else think this?

rockinhippy, I've never been tested for H-Pylori, and tbh would be scared to ask for anything else, at present. You has made me wonder about a serious bout of diarrhea, which hit me on a flight to Canada 7 years ago, when I passed blood, lost 2 stone in 2 weeks, followed by skin boils, for which I had to take weeks of Antibiotics. My serious symptoms have been since that.
It's only since this new doctor replaced the old one, that I've felt I was being heard. It starts to make you believe that they think you're just some neurotic female, with nothing better to occupy you. I've been through the "take Senna ever day, to regulate you", the "use Movicol, it's just constipation" (despite the fact that I've told them my normal daily output is already on the soft side, it's stuff from the parallel channel that's like sharp gravel), the "there's nothing wrong", I was even told (in 1996) that it was linked to something which happened to me when I was 8, which would get worse with time,and that I should come back when the pain gets much worse, and we will have to remove a part of your bowel (I've been trying to avoid that happening).
I recently explained about why I thought it could be a Fistula, and was told "it's impossible" (???) I even washed, and took in what looked like bone fragments I'd passed from the small extra channel, to show the last Colorectal surgeon - he just binned them, patted my hand, told me there was nothing sinister inside me, and I should just use Glycerine suppositories every day, and manual evacuation. I get through 60 Anusol suppositories a MONTH! The pain is usually so bad I can't do much of anything. I miss sex, going out, walking, swimming, wearing sexy shoes (they often increase the pain in my buttocks), sewing, baking, working, being able to keep my house presentable, feeling alert and enthusiastic, and being able to sleep at regular times (I was awake until about 5, this morning, due to the pain! I'm absolutely exhausted, desperate, and b**y angry!

Footle, which bits have made you so angry? For me it's the number of us who just haven't been listened to, or referred for the right investigative process, and the apparently general dismissal of the impact on lives.

Oh Nannasylv, I really feel for you. It is the frustration and the inability to join in with life on a normal scale that gets so depressing, you feel as if you are permanently in limbo, waiting for everything to get sorted. GP's generally don't have a clue - one I went to didn't even know how to spell enterocele on her computer so it came up with no matches at which she told me to pay and go privately to get to see the consultant!!! Stay strong, you will get sorted by hook or crook and one day you will look back on your experience and maybe find something positive out of it, even if it is only guiding others through their experience.

These symptoms do wreck lives - my marriage went wrong because of this (me not enjoying sex post 3rd DS sent my husband off with another, leaving me to bring up three boys alone).

Sending all lots of > xxxx

surewoman, I'm sorry to hear that. I take it you are younger than I am, and the loss of a sex life (let alone the love) must be very hard. I only got re-married 7 years ago, after 26 years single-parenting, so this wasn't quite the plan for me either! I hope you are fixed, and find new, solid love again! The sooner the better!

Surewoman Ouch! did you contact your consultant again?. Hope you feel better soon x
rockinhippy... I dont know about the calves, although mines are huge x but for me defo the legs, back, dragging sensation in lower bowel( thought I had IBS) and OMG my hips I actually thought I was developing arthritis would awaken with the pain in the middle of the night regularly if I could get to sleep that is, did think it may be related to being on my feet for long periods, but since the the op I can say no pain in hips or legs now (well not the same as old just post op discomfort). I also had issues with GP not with diagnosis that was immediate (without exam hhmm) but attitude of "it is not life threatning so put up with it"........ NO.. it was all consuming life changing . I did get reffered for abdo scan but again due to bleeding not prolapse symptoms. This is because the cannot ignore anything they think may be linked to symptoms of cancer( guiedlines again lol) . It was my Gynaecology consultant who manually examed/diagnosed both anterior and posterior prolapse and I am so grateful that I did not have to struggle for diagnosis and treatment. And also got it done on the NHS, he also does private but I do not think moraly people should have to resort to paying for things which is readily available on NHS unless for personal choice(most of these surgeons work private too) but this is another argument. I am glad you are now on a path to getting better and enjoying better quality of life , hope it is not a long one x
Maisied... definately agree it is attitued of individuals, having worked with a few although not in this feild, I think some of them skip certain classes at med school xx
Ifonly... hope all goes well with GP, dont be nervous just explain all if necessary write down some points you want to discuss xx let us know how you do.
Jackie .. How is the recovery coming along , I hope you are feeling better and staying positive xxx Still painting?, I've never been very good at that and admire creativity like this xx I am more practical soft furnishings, curtains all these things no probs but no imagination for art x

How is it that the doctors we rely on to protect us, often know less than we now do? Is there anyone, who comes on to this site, who works in this field, or can get a relevant person to see what is said here? We need help to promote this issue.

I told my consultant that I felt I now knew enough to get a degree in this subject - he was slightly unnerved when I started discussing the pros and cons of laparoscopic intervention rather than vaginal incisions and knew all about which fascia you could connect stitches to to re-suspend a uterus!!! He went slightly pink and said that he liked to stay ahead of the game so was actually a laparoscopic surgeon too although many others couldn't be bothered to re-train!! Ha ha - caught him out there . Now I know what I'm talking about I actually enjoy the discussions at my appointments, like the idea of trying to catch them out!!!

Nannaslyv - been on my own for 8 years now and have been trying to get this all sorted as I promised myself that once my youngest was at secondary school I would kick-start my life again. What has p.......d me off the most is that mentally I had prepared for a "one op fixes all" scenario and it appears I'm only on the first hurdle of this long and arduous journey into the nether regions . What a bummer in more ways than one!!
My GP never even suggested a colorectal surgeon even though I obviously had big BM issues. Luckily for me the gynae consultant figured out what was wrong straight away. I feel I can trust him a bit more now since my major psychological breakdown in his surgery last Tuesday - will have to apologise on Thursday as he must think I am completely bonkers and psycho, but I suddenly lost the plot after years of being mrs unbreakable (as my kids call me! ).

Ifonly - Best of Luck for tomorrow - hope you come away feeling in control of things xxx Don't forget to write down answers to your questions or you will forget what they say with the nerves xxx

nannysylv sorry my op was actually done by a urogynaecologist although I have heard of colorectal surgeons correcting rectal problems I have been informed rectocele/enterocele usually corrected by gyn. I agree that all the issues that people have come through/ are living with and the lack of diagnosis / investigations should be highlighted . Perhaps sending a link to this thread to the British Society of Urogynaecology who list there aims as:

?To encourage the study and management of female pelvic floor dysfunction, urinary incontinence, POP and faecal incontinence.
?To raise and set standards of training in urogynaecology, by providing a network of support through discussion, study and communication.
?To aid an effective network of care for Urogynaecology patients throughout the UK and Republic of Ireland.
?To provide a forum for practitioners with an interest in Urogynaecology throughout the UK and Republic of Ireland.
?To train gynaecologists in Specialist Urogynaecology skills and to oversee Continuing Medical education.
?To promote the work and provide support to the research Urogynaecology Society.
?To collect and disseminate information on all matters including epidemiological research and multicentre trials.
?To organise clinical meetings and bring together conference members and where appropriate other allied organisations, patient support groups, relevant Government bodies, statutory authorities and individuals.
?To arrange and provide for exhibitions, meetings, lectures, classes, seminars and training courses for benefit of its members.

nannysylv

this is a really useful website for any condition www.patient.co.uk and as you will see in the link below prolapse diagnosis relies on examination rather than investigations :-(

www.patient.co.uk/doctor/Genitourinary-History-and-Examination.htm

xxx

maisied1959, I don't know how to send a link (I need someone else's help to do this).

EVERYONE -
My forte (on an amateur basis) is drumming up interest in issues, once I find out where/who to go to (I have even done fund-raising, on a minor scale, for the kids at a place I used to work. I am very active, whenever something in my neighbourhood crops up, although it's harder since being so ill. However, I can manage to communicate, via the internet/phone, whilst still being near my own loo! I considered contacting the press, and am thinking of looking for a good reporter (preferably female), who is likely to have an interest in female health issues (I know of a feisty, mature one, here in the Midlands, but there may be a more prominent one elsewhere?).

I also thought about trying to communicate with an MP, but, so far, I can't seem to find out who is at the top of the tree (Anne Milton perhaps?). Any suggestions here would also be welcome.

The idea is still in it's infancy, but I'm dammed if I'm going to continue to take this lying down! (forgive the pun - I have to spend a lot more of my time lying down now, than I have ever had to in my life).

Does anyone else think this might be a good idea? We can't continue to be left to wither like this, and neither should the following generations. If the NHS can waste £86 million on ineffective websites, which I read (today - on-line, from a leaked copy of the NHS Digital Communications Review), then surely they should be made to see there are more important/effective ways to spend our money!

I don't think this neglect is intentional, I am sure most of the powers-that-be would be shocked/horrified to hear how deficient a service we are offered, and the suffering it causes, for something which takes good, hard-working women out of the workforce, I just think we need to force it to their attention!

If anyone thinks this is a bad idea, please tell me, I'm not afraid of constructive criticism/suggestions, I just want to find a way forward.

Nannasylv, these 'bone fragments' sound fascinating. I am really surprised that your consultant hasn't fallen over backwards to try and find out what is happening, I know I would if I were your consultant. What is wrong with them, why did they train in the first place, there must have been some element of choice? Surely they didn't go into this field so that they could have a really miserable life? Why cant they be interested, especially when something so unusual is happening? We can't all be that uninteresting, can we?

After my miserable experience 15 years ago (I was suffering from an antibiotic resistant infection that had taken hold in my womb because I had just given birth) about a year later I started passing small pieces of really tough pure White 'membrane' which literally scared the living daylights out of me. Putting these pieces together would have covered a hand area. Considering I hadn't even been signed off for maternity services because things had gone so tits up I was still under my useless consultant. Well, trying to get him interested in this amazing medical phenomena was as difficult as getting my children to clean the bathroom, he was so not interested! Eventually he stuck a camera up into my womb, no local or anything, and hey presto there were two large bone White 'nodules' on the inside of my womb. No apology or anything, having not believed me, but he and his colleague had a fervent discussion about what to call them!!! He certainly wasn't thinking about how it happened, what it was or how to treat me...

Footle, I'm not surprised you felt angry reading Nannasyl's post. I felt angry too. Nannasylv and so many other people are being let down. These medical people are only there to help diagnose and treat as best they can...that is their job. They are there because people get ill and need their interest, medical expertise and treatment. No other reason at all. Some of them need to learn to become humble, they are not supreme social 'at the top of the tree mega beings'. I have to say in my experience consultant no. 3 was my angel and saviour. She has been amazing throughout consistently since I met her @May 2010, I have been so lucky!

nannasylv, sorry i am really going on, but having given this a lot of thought today I wonder if a letter to the Patient Liaison Service would be appropriate. I don't know where you live but in England they are quite a powerful organisation. Once a letter goes to them things seem to become more coordinated, questions are asked and the consultants realise that they are being watched which in the case here that may be an excellent idea. I for one have always steered clear of 'rocking the boat' because you can't afford for things to get even worse, but on the other hand sometimes it is good to stand up and say 'I MATTER'. Just a thought?!

Sure, I am feeling better now and can see an improvement from a couple of days ago, here's hoping.. The painting is going well. If it is accepted perhaps people would consider buying their Christmas cards next year from the charity? It is medical based partly because of my experiences. Ayway I will let you all know, no point jumping the gun as they say!!
Xx

Footle, thanks for saying that.
I wish someone with the right power, would read all that I have read, since joining MN, it's heart-rending, shocking stuff, isn't it?

Thanks sure woman, footle and happy will have a look at Michelle kenways site and will checkout the I touch bit of extra help never hurts :) bummer the swimming so hot here at the mo.
I have my 6 week post op on Monday so I wil get his take on the pf and swimming. So want him to yes lol

Sad to see some ladies still struggling to even get diagnosed, when I was in the uk I had been struggling with my breasts ( they were huge 34j) they gave me terrible back and shoulder pain I had deep grooves in my shoulders from my bra strap and absolutely hated them. Over a 10 year period I tried to get a referral for reduction. 1 dr told me to do chest excercises to strengthen the muscles. Another told me they were in proportion to the rest of my size 10 5ft 3 in body ( i say 10 my bottom half was a 10 top half 16 - 18) finally after 4 doctors saying no, I was told i would be put forward for it, but not to a surgeon! The referral was to the pct who fund hold for certain surgeries! WTF any how finally after 6 years was put on the list to possibly see a breast surgeon if there was money left in the budget... There wasn't, I waited another 4 years and had to re-apply every year. I waited that long I had enough money to pay and go private, which I think was their cunning plan...

What I am saying is some Dr like to dismiss people and fob them off because they are a fund holding practice, I had no idea about fund holding but the sad truth is many Dr surgeries practice it but they don't tell patients that's is why they wont refer hence the fob off. I would also be asking the consultants who are giving people the runaround and sounding completley incompetent, if fund holding is happening and playing a part in the lack of diagnosis and treatment. Because it happens in departments too! If its not the reason I would be asking for a second opinion at another hospital or to see the head of department.

Some Dr and hospitals if they specialise you can be referred even if it is over county lines.

I am starting to feel very fortunate to be here in Australia and i really feel for the ladies having problems getting heard. I have to say the Dr here didn't even look at my prolapse, he listened and referred, it was that simple and it should be like that everywhere. Not many ladies want to build up the courage to go to the gp about a very embarassing condition and flash ladies bits off for the sake of it if there is nothing wrong! I really hope you get sorted out soon x x x (((((((((((hugs)))))))))))

Nannasylv - I actually think the main issue is the lack of awareness of prolapse when one is actually pregnant, pre/post birth, and the consequences of going straight back to work, lifting heavy objects (as in my case, lots of house moves by myself) and constipation.

I think the consultants do their best (often limited best) but don't address the psychological impact to a woman when her very core of womanhood is destroyed. The feelings of being washed up, useless, dysfunctional, abnormal, un-sexy, suffering from pain, having to plan your every move to be near a toilet, etc.. etc.. are never taken into account which surely has an impact on healing. Most of the consultants seem to be men, and the only thing I can think of to get them to understand these issues is to liken them to problems with a penis i.e. "Now, how would you feel if your penis was completely dysfunctional at the age of 30/40/50..????" Only then do they seem to understand the impact this has on women .

I'm going on and on and must wake the boys up or we shall all be late!!! xxxxxx

IfOnly - Good Luck xxx

Thanks folks (especially Bruffyj - your experience, in the UK, is the norm, and, yes, you are lucky to be in Australia, by the sound of it). Surewoman, I agree that returning to heavy lifting etc, can only exacerbate the problem, before you are even aware it exists! I also think that being in a job where you can't go to the loo, straight away (when the urge hits), as was the case of my job in my 20's, probably contributes to the problem growing.

I've been finding out everything I can, and it's not just pre/post birth women affected (although it seems they are the majority), did you know that some are caused by childhood abuse, or other abdominal trauma (car crash, etc)., so anyone, presenting with the description we have to a Dr, should have the scan early on, not after loads of what is really "guesswork". I agree that, since the majority of the specialists are men, there is probably a lack of understanding of the impact, but if they can learn about our reproductive needs, and differences, they should be able to grasp this.

I'm going to approach a person I thought of this morning. I'll keep you posted.

Hope everyone is feeling reasonable today (I won't say "well", as that would be taking the !

Thanks Footle, this is just the kind of help I need. I'll look into these, and get back to you.