Prolapse in all 3 compartments............ Continued

Women's health
1

Thank you ladies for replying to my earlier post.

Just to say that I am not on FACEBOOK and would prefer to post here for the time being. 

So I am hoping I can still get support.

Thank you.

This is where I am after 4 years NHS I was discharged for pain management whilst I have prolapse issues, 

I shall not go into the depth of the story but it has been a nightmare.

This is where I am at now.

The gynaecologist has offered a uterine surgery.

Either hysterectomy and anterior repair, or an operation to suspend and lift everything which does include the dreaded

mesh which may or may not be fine. 

However even if I have one of these surgeries there is no confirmation this will help my anal end.

The colorectal specialist has offered me ventral rectopexy.

This is a different operation lifting the bowel and bladder also with a mesh. 

I have written to the colorectal consultant to find out what he intends to do with my prolapsed uterus which is at the entrance of my vagina.

Ladies we all have different symptoms.

Has anyone got similar symptoms to me.

Chronic back pain 10 years on waking.

May be disc or prolapse related.

Discomfort in my Anus 24/7.

Lots of wiping after a poop.

Some internal bowel prolapse proven with Proctogram. (Distal intususception)Disconfort in anus even on waking. worse when sitting, eliviated with standing but still there.

Little incontenance with bowels,  weak anal muscles lots of flactulence.

LIttle bladder leakage not bad yet.

Strangely my symptoms are not worse at end of day which I believe to be one of the main feeling of prolapse.

I began with haemorrhoidal symptoms but no constipation, and no itching and no constant bleeding.

Any ladies with prolapse in all 3 compartments?

With similar symptoms.  Would be pleased to have some support.

Sandra

 

2

Hi Sandra

here I am thousands of miles away in new zealand 

I have Uterine prolapse which is sore and uncomfortable but I dont want surgery so am trying hard to avoid in the eary stages . i wish I could comment on your situation but can only offer support and say just work out what will work for you. I saw a gynaecologist on Tuesday who fitted a ring which fell outwithin 2 hrs!! I have left a message on her phone but havent heard back! i will box on and determined to manage my symptons . i can only offer my best wishes and hope you get some good more informed replies . there seem to be so may of us out there

kindest regards

Angela

3

Thank you Angela for your kind support.

Nice to be comforted by a New Zealand lass.

I also had a ring fitted some months ago.

It also came out well it got stuck in my vagina and I pulled it out with difficulty. 

Outr NHS health care used to be renowned for the best in the world.

That was in my Mother's Day, and yes it was then amazing.

Now there is no funding.

You need to wait  over 2 months for a pessary clinic which I was not referred to properly.

I am combining private and NHS now.

My quality of life is greatly reduced as I like to be very active and I only work part time now.

Discomfort as though there is a foreign object in my anus or a flannel stuck there is difficult to accept, however I realise there are some ladies with tremendous leakage problems, 

I cannot exercise properly, sit down for any length of time et etc.

Although strangely my prolapse issues are not worse at the end of the day!

May be the  muscles in my vagina are strong, not pelvic floor muscles.

My anal end appears more troublesome for me which I believe to be rare in my 50s.

I have tried pelvic floor and anal sphincter muscle exercises.

However very difficult to do with a feeling of an obstruction in the anus.

It would be good to make contact with ladies who have had successful operations.

Good luck to you in this continuing journey.

If you can salvage your pelvic floor that is the first priority.

Best Sandra

4

Hi Sandra, It sounds like you are having real problems which are affecting your quality of life. I didnt have the three I had Uterine and Rectocele prolapses. The history was from smear screening which started in 2006 showing borderline changes in the cervix. Fast forward to 2014 and outpatient treatments which still showed abnormalities, the Consultant did a Colposcopy and said the Uterus was prolapsed as was the bowel. 8 weeks later (Nov. 13) I have a Total Hysterectomy and Rectocele Repair. The recovery wasnt exactly a walk in the park but I got there eventually. My problem however, is bladder leakage since the op and the surgeon has tried me with tablets, electronic device to help pelvic floor muscles all to no avail. I had urodynamics in February which came back all ok. So he suggested using vaginal cones which I am still using. I am due back to see him next month and although I am still leaking, dont want a TVT as he said I may need. Sorry I cant be of any other help or support other than its frustrating when our bodies let us down like this. I hope you find a good surgeon who can sort out your problems and restore you to a better quality of life.

Regards,

Nuala

5

Hi

I have it in all three as well.  I don't experience the pain like you do though.  I feel period type pain if I am active for over an hour.  I am constipated and IBS makes life awful sometimes.  I am very cautious about surgery as people seem to have so many issues.  I have children so I don't think from a practical point of view that it is an option.

The facebook group you mentioned which people on here have pointed to instead of replying directly has mentioned your comment about them.  I hope it isn't mentioned on here again.  They called the admins of this website jobsworths and seem to be trying to promote their page while criticising this one.  It seems to be working as many people reply to posts on there and I see not many replies to yours.  I personally don't want idiotic posts with small penis jokes on it and irrelevant 'may the spirit enter blah blah blah' so I left the group.

6

Thank you so much for spending time coming back to me I truly appreciate.

It helps so much to know there are others in a similar situation.

Im also experiencing little family support too but how could I expect them to understand what us women are going through.

I used to be so active and now all these limitations.

We all need to be strong and remember others in more unfortunate situations.  It is though so very difficult because we do not have a proper labelled illness.  The NHS cannot help us because they do not have enough skilled surgeons to deal with prolapse issues.  

I have had an incredible journey and everyone has an opinion as well as telling me to go on pain management for prolapse and then dismissing me after 3 years.   If your lucky to find an excellent surgeon and he hits the nail on the head then I guess you can hope you will be on the mend for a period of time possibly till the next op if you can face it.

Your symptoms are different to mine.

For sone reason I do not have period pain after an hour of being up.

For me I have this awful obstruction in my anus, incomplete evacuation its this internal prolapse and lining of my bowel causing problems with no constipation.  I am at a midway stage but getting worse.

Im having to see people privately now as have struggled to find expertise.

Thank you for your reply.

Sandra

 

7

Thanks Nuala for your posting.

I do hope the doctors can help you with your bladder leakage.

I am hoping for a surgery for all three areas but I am not sure this is possible.  

I am researching and seeing different doctors.

The gynaecology and colorectal surgeries appear to overlap.

Good luck whatever you decide.

Sandra

It may be crude to say but neither specialist wants to be out of work do they. 

When my mum had a hysterectomy it left her some years later with bladder leakage.

So the hysterectomy is becoming a lesser an operation in my opinion than it was 20 years ago.

i believe this is why the new op for uterine prolapse came about suspending the womb and the bladder with mesh, hence some ladies had problems with the mesh.

So there  are no clear answers here.

I know I need the support of my womb to help keep the support of my other organs.

 

8

Hi Sandra I've just been reading your posts and saw it was 5months ago,what did you have in the end . I'm having surgery for all three in three weeks time regards Alison

9

Hello from Texas, I never actually join these discussions but felt compelled to after the long ordeal I just went through, in hope that it will help someone else. I have had back pain , sciatica and hip pain for approx 15 yrs. I almost underwent a fusion and laminectomy. In 08 I was diagnosed with atonic bladder and had to start straight cathing. Since 98 my gyn has been treating an ovarian cyst and endometriosis. I had a uterine suspension in my 20s to try and treat the endometriosis. For three years I have retained fluids, my urinary output has decreased, I started lasix , have had several strokes , have been unable to maintain my weight , began getting so distended esp with my cycles I was miserable, ended up having to leave my 20 year nursing career. Last month I had a stat CT after my gyn said he saw an abdominal mass. Only thing that showed was a large ovarian cyst, partially collapsed bladder, fluid throughout colon, thickening of rectal wall , partially collapsed gallbladder and possible colitis. He was going to continue treating me with progesterone . I went for a 2nd opinion and was on his next OR date . I'm 10 days post op, had the DaVinci hyst plus I had a triple prolapse. He repaired the rectal and bladder prolapse at the same time , all via laproscopy. I no longer have to cath, everyone says my color is better, I had horrible neuropathy and edema that's resolving. The difference so far has been amazing.

Best to all of you

10

Amanda,

Just found you posting.

What is the hyst plus.  I realise the Da Vinci is with robotic help.

Here in the Uk very few surgeons are qualified to use a robotic.

Definitely very few when it comes to prolapse, and if you find one who is qualiified he has done minimal surgery as many insurance companies will not cover Ventral Rectopexy.

I am assuming you had a hysterectomy via laparoscope with robot help.  You mentioned repair of rectal and bladder prolapse too.

Was this done with a dissolvable mesh?

I have been offered a surgery privately which incorporates ventral rectopexy and a possible suspension of the uterus too with mesh.

Really do not know what to do.

So many negatives on the net for this surgery and I have not met with a patient who has had a succcess. The surgeon will not give me any successful past patients.

His preference is the non-biological mesh which could erode in the body so my reason for hesitating.

If I go down the hystorectomy route I will probably end up with bladder leakage as the other organs need support.

How are you now?

Best Sandra

11

Hi Sandra I had a laparoscopic total hysterectomy 4 years ago.

Currently I am seeing specialist for 3 compartment prolapse mine has been complicated by a very slow bowel transit time meaning I am permanently constipated.

The plan is to have an ilieostomy followed by prolapse surgery a month later.

My gynae consultant is going to repair front and back walls of vagina and add an ISTOP

I am looking forward to having these issues resolved as I have put up with it for 2 years

Are you any further forward?

12

Hello there,

To be honest I have not been looking at the site too much and missed some of the other remarks. My apologies.

No I am not further forward.

The mesh surgeries scare me.

The ligament surgeries too from this site.

Very few centres in UK have a coming together for global prolapse.

The gynaecologist and the colorectal and the radiologist, pathologist, spinal doctor should be coming together to try to help the patient.

Most GPs haven't a clue

I am still struggling as other women are.

Your operation sounds intricate and I wish you all the very best.

May be make a new posting.

Sandra

The newer surgeries are frowned upon by some specialists as unsafe.

May I ask which centre you are at?

I do not suffer from a transit problem.

I am thinking why are the specialists not zooming in with a CT scan to look at the organs. And I don't mean CT Pelvis.

Has anyone had a video CT colonoscopy for more info surrounding the bowel?

It is always proctogram

There are no guarantees with any of this.

Ventral rectopexy only has a 50 per cent success rate. There are no long term outcome reports here in UK.

13

Sorry Sars,

Meant to delete latter part of message.

Sorry using iPhone and forgot to edit.

Truly wishing you wholeheartedly the best of luck. I am not a clinician but Ventral rectopexy may have been offered to you too.

I would make a new posting.

If you want to PM feel free.

Best wishes

Sandra

14

Hi Sandra and ladies I wanted to write as I have a bladder prolapse have for around 5 yrs on and off I say that as between my hrt and using a legal.8 it practically reversed it I was astonished how much better it was...however my premique was discontinued and it came back .I'm trying to cope with it makes me quite miserable at times when it's bad but felt had to say my constipation makes it 10 times worse I'm taking aloe puts colon cleanse tablets and must say it's making my life a bit better as going to the toilet more without side effects which has a positive effect on my pelvic floor so it's not half as bad. Just wanted to pass on this in case someone else can benefit from using this colon cleanse tablets...regards Jeanette hardman

15

Hi Sandra I have a triple prolapse been told will need a hysterectomy and surgery to repair bowel and bladder I've been putting off surgery due to my partner's health conditions as he's epileptic and he can't watch younger children on his own till seizures under control,I'm in constant pain an been prescribed morphine now but I can't put it off much longer as I'm at stage 3 prolapse now x