pelvic prolapse

Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.
sam
Posts: 98
Joined: Sun Mar 06, 2011 5:43 pm

pelvic prolapse

Post by sam »

I am a newbie suffering from pudendal neuralgia, sacral pain, SIJD since 8 months after a colonoscopy. I have extreme difficulty with bowel movements, suffering from anismus and I am asked to do a surgery for pelvic prolapse in a week. I am so scared and I am wondering whether I'll be able to bear the surgery and pain. My stomach is so bloated due to constipation and I am scared if they will burst, have tried movicol and laxatives but nothing works, scared to death.
pianogal
Posts: 437
Joined: Mon Sep 20, 2010 2:11 am
Location: Orange County, CA

Re: pelvic prolapse

Post by pianogal »

Oh gosh, I am so sorry.

I have heard of prolapse causing PN like pain, because it presses down on the nerves... so I think getting it fixed may help as long as they don't scar near the area further... what kind of prolapse repair? Mesh? Sutures? Other?

After a colonoscopy causing PN like pain. Why were they doing the colonoscopy? Was it because you have a prolapse already? Or did the prolapse come after the colonoscopy?

My prayers are going up for you.
-straddle fall age 4-7 w/bleeding labia, tampons hurt in teens, papsmere started annoying pelvic 'tingling' & pne in 02
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
pianogal
Posts: 437
Joined: Mon Sep 20, 2010 2:11 am
Location: Orange County, CA

Re: pelvic prolapse

Post by pianogal »

also, for the anismus, are you getting physical therapy on your anus internally? Some rectal work would really benefit you from someone who specializes in pelvic pt. there are many listed on the main part of this forum.
-straddle fall age 4-7 w/bleeding labia, tampons hurt in teens, papsmere started annoying pelvic 'tingling' & pne in 02
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
sam
Posts: 98
Joined: Sun Mar 06, 2011 5:43 pm

Re: pelvic prolapse

Post by sam »

Thanks a lot for the reply.I am from Belgium and I had a rubber band ligation for internal hemorrhoids and colonoscopy for my internal bleeding and my whole problem problem started with that. I have been suffering since the procedure from perennial pain and burning and recently was told about the pelvic prolapse grade 3 after a lot of tests. My nerve pain and burning is also spreading all over the thighs, back, legs and above all constipation and extreme bloating. The surgeon told me the pelvic prolapse surgery will be done using a mesh.
calluna
Posts: 1058
Joined: Mon Sep 27, 2010 11:57 pm

Re: pelvic prolapse

Post by calluna »

I've been there too, with the bowel problems. I also had a severe pelvic prolapse which was causing it all. No back problems, though.

Big difference with me is that I didn't have PN before the surgery. Please please please please don't be put off the surgery though! - since I had everything put back with lots of mesh to hold it there, my bowel works properly again, and that has made so much difference to quality of life. In a way I was lucky in that I ended up in A&E because GP thought I had a gut obstruction - when they did an xray it turned out that I did in a way, but it wasn't quite what they were expecting. After that I had a lot of support from GP and the nurse practitioner who were both just wonderful, so helpful, and we managed to get the constipation back under control.

I was taking movicol too, I was needing up to 12 sachets a day in order to keep things moving. Usually I had at least one day a week when I took 12 sachets, the rest of the time I was on maybe 4 or 6 a day. Yes I know that is way more than recommended but this was under medical supervision, I would not recommend you do this without your GP's knowledge and approval.

I would never wish to go back to the way I was before surgery with my bowel not working - it is easier to manage PN pain, by a long way. Since I had the prolapse surgery, I have my life back again. I hope that it works that way for you, too. My bowel was working again the day after the surgery.

One thing that occurs to me - once everything is back in the right place again, and your bowel is working again, your PN may ease right off once the terrible pressure is off the nerve. I really hope it does! And please don't worry about the constipation and bloating, they will look after you in hospital, they are used to dealing with problems like this. It is embarrassing for us, but not for them.

Make sure you get lots of rest after the surgery. My surgeon told me, no exercise at all for 4 weeks. I was allowed to walk around the house and garden, but not out the front door. No driving of course - and no car travel as a passenger, once I was home from the hospital. I had to be very careful getting in and out of the car coming home. Also no bending. No housework at all, no laundry, no cooking, no anything basically. It was a blessed relief to know that all I had to do was rest and heal, I can tell you.

I shall be thinking of you.
sam
Posts: 98
Joined: Sun Mar 06, 2011 5:43 pm

Re: pelvic prolapse

Post by sam »

Thanks a lot Calluna, your reply was very comforting, I am really fortunate to have found this site and it feels so good to communicate and exchange ideas with all of you. I keep reading all the posts and I can identify myself with almost every symptom and suffering in the post.
calluna
Posts: 1058
Joined: Mon Sep 27, 2010 11:57 pm

Re: pelvic prolapse

Post by calluna »

You are very welcome Sam. I do feel for you, I know how miserable I was before the surgery.

I know I was very lucky to have such excellent support at my GP surgery - really it was the nurse practitioner there who helped me the most. She was so supportive and just kept saying not to worry, we will sort it out, we just have to keep you comfortable til you have the surgery. It made such a difference when I was feeling so unhappy because my insides were refusing to work.

You have surgery next week, I think you said? Maybe you could try again, asking someone at your GP surgery if they have any advice re the constipation, before the surgery. It might well help to make you more comfortable if that situation can be eased even just a bit. The 12 sachets a day thing with the Movicol, they don't use that very often but it was the only thing that helped me. Not a nice experience, but more comfortable afterwards. Again I was lucky though, because I had an xray so they saw exactly how bad things were, and there was no argument at all about the degree of things and whether or not it was actually necessary.

One thing - after the surgery, they wouldn't let me go home until they were sure my bowel was working. After surgery they started me back on movicol, morning and evening. I had to stay on 4 sachets a day for 4 weeks after the surgery, and then weaned off it very slowly over about another 4 - 6 weeks.

Take care of yourself, I hope things improve.

Edited to add - And please do stay in touch! You are welcome to pm me if you like, of course!
sam
Posts: 98
Joined: Sun Mar 06, 2011 5:43 pm

Re: pelvic prolapse

Post by sam »

Thanks Calluna, Good to hear about the positive outcome of your surgery,it is truly encouraging for me.I am trying to post a reply since two days but couldnt since some login problem. I have got an extension from the doctor till the first week of April but still I am seriously scared of it because I am already suffering from pudendal neuralgia, and will this injure my nerves more, they are advising me for a hysterectomy also but I dont have any serious bleeding problems. I am 45 and have two children. My quality of life is already a zero, I have no life at all.I have no interest in anything whatsoever, feeling tired and extremely painful all the time even to do the slightest chores. I have become totally dependent on others for everything , this disease is truly debilitating. pudendalhope is really very close to my heart.
calluna
Posts: 1058
Joined: Mon Sep 27, 2010 11:57 pm

Re: pelvic prolapse

Post by calluna »

Hello again Sam
With regard to whether you should be wary of the surgery - I would say that it is really your best option right now, and if it were me, I would not be wanting to put it off.

With pelvic prolapse, your bowel cannot empty itself normally. The idea of the surgery is to put everything back where it belongs, and then it can begin to work again. Until then, you have this awful constipation problem, and please don't underestimate how low in yourself and how unwell this can make you feel. Also, with extreme constipation, the whole abdomen becomes painful and bloated. Movement is difficult and painful, just living one's life becomes really difficult. I've been in this situation.

Surgery is the only way to sort it out.

With regard to your pudendal nerve - remember that nerves can heal. You are ten years younger than me, so you have a much better chance than I do.

Please don't be put off by the fact that I developed PN after my reconstruction surgery. In my case, both the prolapse and the surgery were very unusual, there were a lot of complications, and I have many sections of mesh, I think ten in all. At the moment, as you know, I do still have PN, but the pain is managed, and life is good. I would never wish to go back to having the prolapse and constipation - that's much more difficult to deal with.

At the moment - you have the worst situation, you have both PN pain which is not being managed, and the constipation. With surgery, you have a chance of getting back to normal again. Without surgery, there is no chance at all that things will improve, in fact they can only get worse. And it is not a good idea to leave this situation with the extreme constipation any longer than absolutely necessary, it can do real damage to the bowel.

With regard to the hysterectomy - I don't know why they are recommending it (I had a hyst about 12 years ago due to uterine prolapse) but there will most definitely be a reason, it is not something that they do lightly. If they haven't explained this so that you understand, then they need to explain again. Talk to your doctor!

Have courage. It isn't easy, I know.
User avatar
Violet M
Posts: 6651
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: pelvic prolapse

Post by Violet M »

Hi Sam,

I'm not an expert on this subject because I have not have a prolapse repair although I considered it. I would think twice about the hysterectomy because quite a few women have developed PN symptoms from having a hysterectomy. My docs have said that when you have the pelvic floor muscles tightened after a hysterectomy it can contribute to PN-type pain and they actually refused to do that surgery on me since I already had PN.

Best wishes with the prolapse repair. I hope all goes well. ;)
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Post Reply

Return to “WELCOME CENTER”