Surgery - many questions

Submitted by nina10 on November 23, 2011 - 2:58pm
Body: 

Hi All
I have been a member here before but let it lapse for years. I've had a prolapse since the birth of my son 7 and a half years ago. I am now 43 years of age. I have just about every "cele" there is to have. I had been under the care of a urogynaecologist (a supposed guru in his field - but one with no bedside manner) for several years prior to having my son for overactive bladder symptoms. Not once during my care with this doctor for this was it ever suggested that I have an MRI to see what may be going on with spinal cord etc. I work with a paediatrician who suggested that I have one and referred me. As the overactive bladder was something I've suffered with since childhood she thought there may be something going on with my spinal cord which would warrant further investigation. The MRI revealed a tethered spinal cord, a Tarlov cyst and a lypoma at the base of the tethering site. I took these results to the urogyn and his reaction was simply "I guess we should have done that a long time ago, your options are surgery or just medications to help control overactive bladder". I take the medication and they've been great. I'm able to leave house and funciton without always wondering where the toilets are.

I was referred to a neurosurgeon who said that surgery posed a great risk because of the cyst and the lympoma which are in themselves harmless but it means it's it makes it difficult for them to detect where the nerve endings are. Either way, surgery wasn't quite appealing it it meant I might not walk again. He said my gait would slowly get worse and surgery, if successful, would now, at this stage in my life not make any difference to my bladder function.

So surgery avoided for that. Then came the prolapse. The urogyn has been trying to encourage me to have surgery ever since but suggested I put it off until my son was old enough to not require daily lifting. I've done that and kept on putting it off for the past 7 and a half years. Now it's time to revisit the idea of surgery and I actually have a date booked for 15 Dec but I am seriously reconsidering it. They want to do a vaginal hysterectomy and vaginal repair (sacrospinous colpopexy). Now, my problem is that I've been living with the prolapse and using a pessary all these years and really, my life is pretty much normal.

louiseds

November 23, 2011 - 6:44pm

Hi Nina

Well, you do have an interesting choice. ;-)

But seriously, The surgery they are proposing is pretty major. I suggest you have a look at www.hersfoundation.com to find out exactly what happens during hysterectomy and the side effects that have been reported, both immediately post-surgery and many years after . This site also has a very good list of questions to ask your gyn/urogyn before deciding whether or not to have the op.

Sacral colpopexy would involve tethering your vaginal vault to the ligament that ties the sacrum to the pelvis at the ischial spines. This may also drag your bladder backwards because it is attached to your vagina, so you might end up with bladder incontinence. They might also want to do a prophylactic bladder incontinence procedure to prevent this, but he has not mentioned this. After hysterectomy you may or may not have enough length in your vagina to tether it to both sides, so you may end up with a crooked vagina. Your vagina vaginal wall will be dissected from end to end so you will also have scarring the full length of your vagina as well. This is a consideration if you are sexually active because it can cause pain with sex.

There is also a risk of damage to this sacrospinal ligament after many years, risk of recurrent cystocele, mesh erosion and infection of your tissues (if they use mesh), bowel dysfunction presumably from the vagina being stretched backwards and interfering with the movement of the rectum and sigmoid colon, severe haemorrhage from damage to sacral artery during dissection, bone infection and death. This last paragraph is just notes from research I have done on sacral colpopexy. It is not the final word. Christine has ewritten extensively about these surgeries in her book, Saving the Whole Woman.

You owe it to yourself and your family to research these operations thoroughly if you are still tempted to have them.

By the sounds of it your are going along just fine with your pessary. How have you gone with WW posture and the other factors you can address?

You are at a difficult time right now, with the storm of pre-menopause probably gearing up. Many of these things will settle down once you have had menopause. My POPs were formally diagnosed about 8 years ago, but I was aware of them many years before that. I have now had menopause, with all the heavy bleeding and discomfort and resentment that goes with it. I am so glad I found Wholewoman, didn't have similar surgery, and learned to do all these techniques which have left me now as an active, normal woman with very little problem with my POPs.

I hope you will put your proposed surgery on the back burner while you research it thoroughly and get your Wholewoman techniques working smoothly along with your pessary.

Louise

nina10

November 23, 2011 - 8:23pm

Hi Louise
Thanks for your advice. I hadn't quite finished my story earlier as I had to get my son ready for school and accidentally submitted it. I guess I'm leaning a long way towards putting it off.

I had a question about long term pessary use - I am very uncomfortable without it, but cannot find much information out there about the effects that may have and how long is too long?

I have heard many women who say that it all seems to settle somewhat after menopause and I'm hoping that may be the case.

I know a surgeon is going to tell me that surgery is the best option as that's what they're in the business of doing - surgery - but after surgery I would have a lifetime of never being able to lift more than 15kg which for a busy working mother is near impossible.

I think I'm convinced that it's not the way to go for now.

I would love to hear from other women who have used a pessary for several years or longer and their opinions and stories on that.

louiseds

November 23, 2011 - 8:36pm

Hi Nina

How many years have you been using the pessary? Has it ever been removed? Are you able to remove it yourself, clean it, and replace it?

nina10

November 24, 2011 - 12:54pm

Hi
I have been using the Pessary for about 7 years. I take it out and clean it regularly with no problems.

louiseds

November 24, 2011 - 8:56pm

That sounds like a pretty good long term solution to me.

I am curious. Do you use anything like Trimosan, or diluted vinegar douches with it?

nina10

November 26, 2011 - 2:40pm

No, I don`t. Should I?

louiseds

November 26, 2011 - 8:55pm

Hi Nina
No, if it is not a problem then don't use anything with the pessary. Some women find they have an offensive discharge with a pessary. We are told that this is because the pessary causes an immune response as the body tries to reject it. One of the results of this is a change in the pH of the vagina.

I have always assumed, obviously incorrectly, that this happened to all women, because products like Trimosan always seem to be packaged with a new pessary.

I would have thought that it would be ideal to just use an inert pessary by itself, so the body doesn't have to adjust to yet another factor, Maybe this is a key to your success?

It is great news. You may have just smashed another wives' tale!

Is there anyone else out there who uses a pessary but does not use any product out of a tube with it?????

Louise

Sammy

November 29, 2011 - 10:59am

Hi Nina10
I have used a pessary since last spring. I had had the sacral attachment at the same time the upper part of my uterus was taken out of the way.
It was (though never horrible) a very wrong thing for the system to have done to me.
I am left with a bit of mesh on my lower spine, about 3 big surgeries, and a prolapse worse than before any medical intervention.
The 3" donut pessary has kept my guts up past the pelvic bone and works very good for me. I appear to have finally stopped bleeding from the eroded mesh and sugery to deal with it. I had bleeding for 4 years not heavy just from the mesh erosion and repair efforts- this was no big deal to any of doctors 'cause they knew the cause of the bleeding!
I think my vagina is trying to get rid of the pessary though as there is a chemical odour and slight discharge continually which i believe to contain molecules of the silicone pessary.
Right now the pessary is out, soaking in a tub of mild soap to try to make the odour go away. The pessary causes me to tear and bleed a bit when removed and it takes a few days for it to heal. So far, things have stayed in place without it and I am thankful for even a few days away from the use of the pessary. When put back in, my husband has better control and can make it narrow so that it doesn't cause tearing of flesh(as did the birth of my babies) Without the pessary the heaviness ihas been unacceptable. It seems to me that the prophylactic engineers have a challenge on their hands with which they have not yet dealt.

what type of pessary are you using?

Louise I so enjoy your concerned and robust comments. When at Mass the other day, I found myselt standing and sitting and Kneeling with every effort to stay in posture- it seems my very soul has been influenced by the help offered here

Nina10 If you were hoping to have a surgical correction when u no longer had a child to hold and carry - remember the grandkids- i refused to not carry and hold mine after the mesh sacral colpopexy. i also shovelled my car out from under 6 feet of snow, more than once. when stuff needed doing i did it - flinging snow tires into my car and on and on- I should not have ever had muscle attached to muscle to wait for me to tear it out with activity- doctors are senseless clods.

louiseds

November 30, 2011 - 8:20am

Hi Sammy

Putting some vinegar in your soak water might work. Vinegar is very good for removing or neutralising nasty smells.

Sammy

January 12, 2014 - 6:48am

my newer smaller donut pessary removes very easy I used Trim-San for a few months 2x week but it added more guck to the pessary and I find removing nightly to suffice. The strong odour still bothers me but at Christmas I got a soap antibacterial from Body Shop that has olive oil and balsam and have been using it and now my silicone pessary smells of Balsam not sure what to make of this but the odour is far less offensive and I feel a little relieved that there may be a remedy to this negative side of pessary use. The pessary appears to still hold my larger than average bladder out of my vagina