rectopexy operation

[tigga]

hi all,had a rectopexy op 11days ago for intussusception.been having excruiating lower ab pains (like labour pains+!) doubled up with hot w bottle for 18mnths until finally got a diagnosis. unfortuneatly NOTHING has changed im devasted,back to hosp on 29th jan .anyone been in this situation or has any idea what my next option could be? cant have any sort of life like this,im on tramadol,amitrip,gabapentine which dont work!im very prone to constipation taking movicol &docusate,not very affective either.any advise welcome ,thanks in advance.

[Hidden]

Please don't feel I am being rude or anything but I have a friend who's daughter was in severe pain to the point of not being able to wear clothes as they hurt. It turned out that she needed to retrain her brain as it was telling her it was pain when it was not. This is a real condition and took some real hard times for her to get over. I just wonder if your body has got so used to telling you it is pain that it believes it is. I am not saying you are mental or that it is in your head. Just thought it may be an avenue for you to explore.

Hope you find an answer soon and keep positive. We are all with you.

[pouletlondon in reply to Hidden]

What kind of therapy did you use for this? i would be interested to hear more as a reply or email to [e-mail]

Thanks

[tigga in reply to pouletlondon]

thanks for your interest, not quite sure what you mean by therapy? im open to answering any questions you may have.Ann

[Foxface]

Hi tigga, I have just had a laparoscopic ventral rectopexy done 7 days ago. I wonder if you could tell me how you are getting on now 2 months later? I am struggling as still have not been able to have a bowel movement and am feeling pretty rough. Hope you are feeling a little better now? Do you work and have you gone back to work? Xx

[tigga in reply to Foxface]

hi Fox face, unfortuneately the op didnt stop my pain, dct said there was only 60% that it would.like you i was very constipated after op, was given Lactulous & Docusate helps a little .my problem still is pain after b m which leaves me in agony at least 10hrs a day.been waiting 9wks to be referred back to Gastrology.i only work p/time & havent gone back yet. so v fed up no painkillers ,including Oramorph dont work!hopeyou start to feel better a s a p.if you dont mind me asking ,what were your symptoms before your op?.x

[Sandra2468 in reply to Foxface]

Hello Foxface,

How are you now after your ventro rectopexy?

Which hospital, which surgeon?

I'm considering as it has been mentioned as a way forward.

[Foxface]

Hi tigga, just wrote this long message and then lost it!! Argh! Il try to summarise my essay again as too tired to write all out.

I'm so sorry to hear you have not had relief from your pain what have the doctors said is there alternative treatment options? Do you mind me asking where you had yor surgery done?

I am getting really concerned now as had no bowel movement for 9 days and I am feeling really sick and in pain with the bloating. I have tried so many laxatives - movicol, lactulose even 5 bisocodyl/dulcolax tablets which normally give me urgent need to go within a few hours, suppositories also and nothing at all. I feel like I cannot push and I have no peristalsis!! Freaking out about it as was told I cannot get constipated after te surgery. Tho your surgery has not helped the pain have you managed to get any better with your bowel movements?

I had rectal bleeding, obstructed defeacation, pain on bowel movements and afterwards, constipation and just before my surgery began getting leaking problems too as when I had to go it would be very urgent tho never could have complete bowel movements so back and forth to the loo constantly. I also have had chronic stomach ache for a long time - but does not sound as severe as yours. I am 25 they told me I had a large rectocele, enterocele, intususseption which then became also external prolapse by the time I got surgery. This whole thing is just a nightmare I want to end!! Really hope you get some more answers and some ways forward soon, have they given you any indication as to why the surgery may not hae worked for you or how it might improve with time?

Xx

[tigga in reply to Foxface]

thanks for your prompt reply!at my post op appointment all i was told was the op was a success & said theyd refer me back to gastro,wasnt interested i was still in v bad pain.have had all the meds youve mentioned ,im regular now but never feel completely empty.hope youve more success , thank god for this site where people like us & others have more understanding & sympathy than the docs!x

[Sandra2468]

Hello,

How are you now?

Did you have a laparoscopic ventral rectopexy?

I have distal Intussusception and chronic discomfort in anus + prolapse in all 3 compartments.

Are you in a better state now.

I truly feel for you.

Stay positive

Sandra

[Sandra2468]

Hello,

How are you now?

Did you have a ventral rectopexy via the tummy?

At which hospital, are you in UK?

Hope you are feeling better,

Sandra

[tigga]

aw thanks for concern! still in v bad pain,seen Gastro at ST James hosp Leeds hes baffled & referred me to pain clinic & to have Slow Transit Marker Test,both appoints could take weeks!Yes ive have had Rectopexy via abdomin not helped my relentless daily pain at all! how are you? have you had a rectopexy as yet & hows your pain at the moment? wishing you well.Ann

[Sandra2468]

Ann and Foxface,

I am sure you will get better in time.

After all Ann you have had major surgery.

Do get better I am positive you will this is early days.

Im sure it could take 6 months for things to improve.

If the doctors say 6 weeks I guarantee its more like 6 months.

Can I ask what were your symptoms prior to Op?

I have been told that Ventral rectopexy is a way forward for me by one consultant.

I realise it is not a good time for you to help me as you are in so much pain, but it you could spare some time I would be more than grateful.

WHAT WERE YOUR SYMPTOMS PRIOR TO SURGERY GIRLS?

If your pain gets worse not better then I guess you need to go back to the consultant for advice.

Also there is a possibility you have pudendal pain where by the nerve in the bottom could get released.

This often happens with prolapse, or from being pregnant.

I have found there are these LVSPG meetings for people with pudendal pain.

email [e-mail]

Some people may of had nerve decompressions surgery. It is a way of meeting with people with this problem. The next meeting is 13th June in London.

There is also a pelvic pain support group on the net.

Hope this helps,

Sandra

[tigga in reply to Sandra2468]

hi Sandra, my symptoms before Rectopexy were the same as i have now daily ie excruiating abdo pain after a bowel movement lasting up to 10hrs a day(doubled up at the moment with hot water bottle) on the v rare times i dont have a bowel movement im virtually pain free & feel like a different person! forgot to add have constant breathlessness with the pain ,had chest x ray which was fine. interestd in your mentioning Puendal pain,how are you feeling pain wise ? Ann

[Sandra2468 in reply to tigga]

Ann,

I am sorry to hear that you are doubled up with pain after a bowel movement. For you to get to this stage prior and after surgery I feel for you. Can you ask your specialist to be put you in contact with other patients? This pain does sound like intussusception which I am assuming was fixed with the operation.

If you read about Pudendal nerve pain there is a site which has a form you can fill out for your own use. Pudendal Hope.

It may be an American site I am not sure.

If you answer the questions you will have some idea if this is relevant to you.

Ventral Rectopexy has been mentioned to me as a way forward.

However not every doctor has the skill for this op.

In fact some doctors are not colorectal prolapse specialists so would not offer this operation. I have prolapse in all 3 compartments.

I have discomfort in my anus not PAIN.

It is an awful feeling as though there is a flannel stuck in my bottom 24/7.

After waking lying on my back I have the discomfort.

Low back pain wakes me and this pain I feel is driven from the back.

I have had 10 years of back pain on waking that eases when I am up.

Its as though this back pain as been pushing into my anal end.

I am better when standing and walking around, worse when sitting on a hard chair like now typing on the computer.

I do not have PROLAPSE pain at the end of the day, I am not worse at the end of the day, this is what is so weird.

I have my womb and bladder right down and lining of bowel down.

I have this distal intussusception. (not full blown internal prolapse yet)

Luckily I do not have constipation.

I have urge incontinence with my bowel and a little leakage with urine.

Firstly I went to a back surgeon thinking I had Cauda Equina syndrome, however all looked ok. The MRI did not indicate a problem.

However CT SCAN showed some focal uptake at left L5/S1 facet joint which is degenerative.

So I don't quite understand why the CT showed up different stuff to the MRI.

Although I think I will get a second opinion with my back.

I am trying to get hold of my NHS CT SPEC on disc.

I do not know if one could have a very slow Cauda Equina syndrome, like 1 years slowly getting worse effecting my bowel and bladder.

From looking at utube it is more often the bladder than the bowel that is affected. So I think I do not have this.

I also have another slight complication with small pelvic tumours which may be causing some pushing, but they are very high up but the nerve routes may be doing something. Nothing conclusive here.

I have a recent NERVE MRI scan which shows the sacrum in depth as far as the nerves are concerned. The lesions may be giving me some form of nerve discomfort, although the nerve doctors don't think so.

Well they have been taking pictures of my pelvic area not sacrum.

Now I have these other scans showing nerves relating to sacrum.

However you know they are not G-D.

For me this surgery may well help me although I believe it is still a relative new surgery.

I am not rushing into anything as I do not want to be in a worse state than I am now.

Nothing that straight forward.

Do get better Ann and look at that Pudendal Hope site.

Ps I began NHS and have had to seek private opinions too.

This all began with me probably 5 years ago with this sensation of something pushing into my bowels whilst sleeping.

All the best,

Sandra.

[tigga in reply to Sandra2468]

Sandra i really feel your pain & hope you get some relief surgically or not! i dont think other people ,apart from this site)realise how much the pain effects our lives. im phoning my gp to see if she can speed up my appointment forSlow Transit Colon so desperate for a diagnosis.please let me know how you get on .Regards Ann

[Sandra2468]

You too Ann,

i am assuming you have seen a gynaecologist too.

All the best,

Ann

[tigga in reply to Sandra2468]

no i havent seen a gynaecologist,my Gastrologist is v narrow minded & insists its colon related ! will ask my g p if i can be referred,thanks for the idea Sandra.All the best to you too!

[tigga]

Foxface ,so pleased your op was a success & your painfree!im still waiting for Slow Transit Test & pain clinic appointments ,my pain is severe & relentless! Desperate for a diagnosis'ann the best Ann

[Sandra2468]

Hello there,

I can not thank you enough for this posting.

I have sent you a private message too.

Sorry obviously it is approx 10 weeks for you now after your op.

How are you now?

Considering a surgery now.

Please make contact,

Sandra

[tigga in reply to Sandra2468]

thanks for your interest Sandra,im still in pain 10hrs a day ,on v rare days that i dont have a bm i feel so much better & a bit breathless too,spoke to my Gastro doctor on the phone & hes trying to speed up my appointments for pain clinic & test for slow transit colon,rang pain clinic myself & there fully booked ,couldnt give me a clue to how long ive to wait.so desperate for a diagnosis ,pain getting me down,no quality of life! let me know how you are & if you decide surgery or not,if you dont mind me asking what surgery are you considering? take care! Ann

[Sandra2468 in reply to tigga]

Ann,

I am considering Ventro rectopexy, but now very nervous.

I've researched for you.

Ask you doctor for immediate Xrays or scans, as you fear you may have Chronic sepsis.

I am just helping, but there are cases of mess not doing so well in the body or the body rejecting the mesh after surgery.

The transit study is about food, the sepsis is related to the mesh in the op.

Just feel you should get this checked out.

Best Sandra

[tigga in reply to Sandra2468]

Sandra ,thanks for the info! good to know someone has some understanding ( hard to get across the severity of pain /duration to family & friends) Deff going to ask for scan ,as not had one since my op.how are your symptoms at the moment? Ann

[tigga in reply to Sandra2468]

hi, Sandra,forgot to add ,my GP thought i should see a Gynaeologist too,got appoint m,ent for 24th June.im willing to try anything!!! Ann

[Sandra2468 in reply to tigga]

Ann

Trying to private message you.

The site is not accepting tigga.

Is your name tiga.

Get back to me Sandra

[tigga in reply to Sandra2468]

hi Sandra ,i dont know how to send a private message can it be done on this site or is it like an e mail?would like to know so i can reply to you.Yes my name on this site is tigga,good luck with it! Ann

[Sandra2468 in reply to tigga]

Hi Ann,

I think you may have PN.

Bristol is a good centre to go to.

Sandra

[tigga in reply to Sandra2468]

thanks for the suggestion Sandra, seeing Gynae end of June ,presume they will have knowledge of PN or do i need to see a PN specialist? Bristol too far away for me though.Ann

[Sandra2468]

Ms a Fox,

Just to say more than grateful for your replies.

Very few ladies show positivity and thank you for all your postings.

May I wish you all the very best for the future.

Sandra