two years post op today and still struggling

I thought for sure by two years post op I would be feeling great. Unfortunately not. I still have bloating on and off and a lot of discomfort in the abdomen. Has anyone else experienced this. My dr says I also have the fallen bladder which is getting worse so I am not sure if that is part of the problem. The drs don't really give me any answers. It is really upsetting. Any insight would be great.

I am almost a year post op and struggling daily with severe pain. I've been to many doctors, nobody knows what's going on or why. It is very frustrating and can leave me feeling quite hopeless. I deeply regret my surgery and feel resentful about that.

I am currently seeing a physical therapist who specializes in pelvic floor dysfunction. She believes she knows exactly what's going on wih me and why. Says my nerves are trapped in scar tissue and the muscles around them are protecting them. Therefore throwing my hips and tailbone out of whack, etc. She is very expensive but at this point I'm willing to try anything for a chance at getting my life back. I went to my second session today so not really sure if it will be successful. But perhaps this is something you should explore. She told me today we will also strengthen my pelvic floor muscles so my bladder doesn't fall and she also said she can help me get my intense orgasms back, as they are much more superficial since my surgery. Perhaps there is hope for us.

Are you keeping a symptom diary? This can help you and your medical team figure out what is going on and which symptoms go with which health condition.

Are you seeing a urologist about your prolapsed bladder? Is there any chance all of your symptoms are actually related to issues from the prolapse? It could definitely cause abdominal and pelvic discomfort and any pressure on the wrong areas could then create new pains and symptoms.

in there and keep talking to your doctors and/or add new doctors to your medical team who can help you!

Thank you so much for your insight I too deeply resent my surgery and get angry about my decision. I am glad that i am not alone with that. Most women say that they are really satisfied with their decision. And for me that is not the case. I will have to look into the physical therapy aspect. Was this person someone that your gyn. recommended. How did you find that particular specialist. Let me know how the therapy works for you, I am interested if it works for you.

And thank you (Weiser) mentioning about a symptom diary. I think I will try that as well. I do see a urologist. she is keeping an eye on the fallen bladder but she did say she can't do surgery until I can get my IBS w/ constipation under control. I have had that my whole life so I can't see that happening anytime soon. It is all very frustrating!! I feel like since the surgery I have traded one set of problems for another.

Thank you for your support and understanding!!!

Isavril,
My first day back to work post op a coworker enthusiastically asked "Aren't you so happy you had it done?!" I'm sure I looked at her with an expression of pure horror. I was very worried about trading one set of problems for another, and that's exactly what I've done. The pain from sitting is unbearable. And I've got a 50 minute drive before I even get to work. It takes 2 percocet to get me through my work day. I found out about this physiotherapist through the anesthesiologist I am seeing at the Pain Clinic at the hospital. She specializes in pelvic floor dysfunction and is certified to work "internally". My last visit she had her finger in my vagina for at least 10 full minutes. Its a strange experience. She's able to feel where I have nerves trapped and which muscles aren't functioning properly. At least that's what she tells me, time will tell. The pain since my last visit has been terrible and I have called in sick to work today. I can't believe this is my life.

(((lsavril)))

Have you ever worked with a gastroenterologist for the IBS? Mine was helpful at least to a degree. Some of my issues weren't actually IBS (it was endometriosis and adhesions) so she couldn't help as much as she would have liked. But I am glad I worked with her.

My GYN knows a pelvic floor physical therapist so you could check with yours and even with your urologist. Both may know someone in your area. Your GP may know of one as well.

I know it is very discouraging when our hysterectomy doesn't turn out as we had planned and we continue to live with issues, both old and new ones. It can be frustrating and depressing. But, concentrating on regrets doesn't help us move forward. We have to accept we can't change the past (yes I know, MUCH easier said than done!), and then take it one step at a time forward. While miracles do happen and I experience one myself a few years ago, often we have to fix one thing at a time on a slow path to recovery. Definitely not what any of us want, especially when those around us don't understand or are focused on "you can wear white and don't have a period." HA! If only that were the only things we had gotten out of surgery!

My goes out to anyone who ends up on the more complicate road as I did, but hang in there! There is hope, there are options, but it may take patience and perseverance. Not what we had planned, but we can make it one day at a time with the support of each other!

Isavril-
You might consider seeing a second urologist. I personally think that the restriction re: your IBS and constipation is too strict, especially if that is a chronic thing for you.
If I waited until I wasn't constipated to do anything, I would never go out of the house!
Best of luck and hang in there!

Sugarandspice, your symptoms seem very similar to mine. I had my HYSTO 3 years ago, and many surgeries in that area since then to fix other things that went wrong. I still have HUGE pain in my vagina, pelvic floor and lower abdo. Saw specialist in vancouver and she thinks it might be a trapped nerve in my scar from prolapse repair last september. Starting with physio at the hospital at the pain clinic in 3 weeks. They gave me shots into the vagina OUCH!!! and abdomen around my bikini scar to numb the nerves to see if that would help, but no change. So trying numbing gel in vagina today. have you tried the lidocaine gel for the pain?

Isavril, im sorry you are having trouble too after your surgery. It truly sucks, pain becomes a way of life after a few years. But we can't give up!!! I too had bladder prolapse repair, and It was done with belly bloating issues. have you tried taking out gluten out of your diet, or at least find out if you have allergies that your tummy cant' handle, of course after you have ruled out anything medical like what weiser mentionned. but if nobody can figure it out it doesn't hurt to check for allergies, unfortunately everything takes time to figure out..

Good luck, hang in there

mo

	Quote:
Originally Posted by mojo1234 Sugarandspice, your symptoms seem very similar to mine. I had my HYSTO 3 years ago, and many surgeries in that area since then to fix other things that went wrong. I still have HUGE pain in my vagina, pelvic floor and lower abdo. Saw specialist in vancouver and she thinks it might be a trapped nerve in my scar from prolapse repair last september. Starting with physio at the hospital at the pain clinic in 3 weeks. They gave me shots into the vagina OUCH!!! and abdomen around my bikini scar to numb the nerves to see if that would help, but no change. So trying numbing gel in vagina today. have you tried the lidocaine gel for the pain?

Do you live in Vancouver, BC? I grew up in Richmond and now live an hour outside Vancouver. The physio put lidocaine inside me when she was done treatment the other day. It didn't do much for me. It didn't help with the nerve pain all through my groin. I tried physio before Christmas but the stretches made it worse and my belly swelled even bigger than usual. This time its just pelvic floor and the only thing I'm to do at home is Kegels. This lady is my last hope.

I pray you get relief from the pain clinic you're attending. I am so sorry you've had to endure multiple surgeries and needles in your tender areas. I'm in awe of the strength you must have.

	Quote:
Originally Posted by Weiser (((lsavril))) Have you ever worked with a gastroenterologist for the IBS? Mine was helpful at least to a degree. Some of my issues weren't actually IBS (it was endometriosis and adhesions) so she couldn't help as much as she would have liked. But I am glad I worked with her. My GYN knows a pelvic floor physical therapist so you could check with yours and even with your urologist. Both may know someone in your area. Your GP may know of one as well. I know it is very discouraging when our hysterectomy doesn't turn out as we had planned and we continue to live with issues, both old and new ones. It can be frustrating and depressing. But, concentrating on regrets doesn't help us move forward. We have to accept we can't change the past (yes I know, MUCH easier said than done!), and then take it one step at a time forward. While miracles do happen and I experience one myself a few years ago, often we have to fix one thing at a time on a slow path to recovery. Definitely not what any of us want, especially when those around us don't understand or are focused on "you can wear white and don't have a period." HA! If only that were the only things we had gotten out of surgery! My goes out to anyone who ends up on the more complicate road as I did, but hang in there! There is hope, there are options, but it may take patience and perseverance. Not what we had planned, but we can make it one day at a time with the support of each other!

First I want to thank you for your support and kind words, they mean so much to me.
I do have a GI dr, he has been limited help, he did all of the tests and then tried me on amitiza which made me sick and then put me on this syrup Lactulose which didn't help. Then he just said I need to come up with my own regimen. A mixture of stool softeners, fiber supplements and diet and then he said I need to stop worrying so much in my life because that effects my IBS. (easier said than done). My urologist said sometimes taking a magnesium supplement helps. So I think I will try that. I will also ask my urologist or gyn for the specialist for the pelvic floor.

I did want to ask you I noticed that you suffer from fibromyalgia and migraines. Did that happen after the hysterectomy? because about a year after my surgery I was diagnosed with both of those things. I wonder if there is some sort of connection. My gyn said no about the fibromyalgia she said it would have happened anyway. I don't know about that.
Take care.
My heart also goes out to anyone experiencing complications after their surgery
Your hystersister, Laurel