Vaginal Vault Prolapse and EDS

I had a TAH 2 years ago - kept ovaries it was supposed to be a TVH but it didn't work so surgeon did TAH instead. Along with a rear and frontal repair [rectocele and ( can't remember the terminology ,..) ]
a year ago I was diagnosed as having EDS Ehlers Danlos syndrome type III. ( collagen deficiency)

I now have a vaginal vault prolapse ( diagnosed )

I think I have bowel protrusion into vaginal cavity - need to press perineum to actually empty bowels - although new consultant doesn't believe me - is it supposed to bulge into the vagina when the bowels are full?? that's what happens.

also have bladder probs and am awaiting urodynamic tests to check out what is going on !!

normal gynae consultant said i needed to get this dealt with straight away- get an appointment tomorrow morning and deal with it immediately she said.

So I did and a week later saw the second gynae- who didn't seem to have any sense of urgency - or consideration for my feelings he didn't listen well to me - and disbelieved me when I told him stuff....

H said he couldn't do the best op because I am too overweight - told me its easy to lose weight - just starve yourself eat one meal a day for 6 weeks and id lose 20% of my body weight ... simple ( yeah right !!!) - I put weight on 17 years ago when pregnant and have never lost it - have tried and tried - only way is to exercise and at the mo I cant do that as my joints keep dislocating with EDS.

Everything is just getting worse Ihad 2 spine x rays today and it seems I have 2 parts of spine with curvature - but need to wait for full report before i jump to conclusions- whatever the prob is it will be related to EDS.
Ist gynae said that's why I had a very baggy uterus and also why I now have new prolapse.

I cant seem to cope with the fact that my insides are bulging out... I feel squeamish about this - and don't know how to deal with it - I also have lichen sclerosis ( LS) on vaginal area which is v uncomfortable - and the bulge of the prolapse is irritating on the skin affected with LS
. Consultant 2 thinks I can live with it by losing weight - but I cant see how that will make the prolapse suddenly rebound back to its normal position. I DO need to lose weight I know that but surely the wall of vagina wont just spring back - especially with ligament laxity from EDS.

I feel like crap and now there are delays with the urodynamic machine -
I am due another op in October but was hoping to have this gynea op done 1st - now that wont happen because of the machine - and it means I will have to wait ages as they need to allow a few months gaps between general anesthetics.

anyone got any ideas about what to do ?
especially about feeling squeamish
I am beginning to feel really depressed and low about this ...
anyone else have EDS too??
JooB

JooB
I know what you mean about how losing weight is supposed to be the "cure all" for what ails you. It is true that being overweight puts you at greater risk for prolapse. Somehow I just can't figure out if you already have prolapse how weight loss will make those organs suck back up into their rightful places. I'm currently in the intake process for bariatric surgery which I believe will happen some time in January. I also have Global prolapse. I think seeing is believing so once I lose weight if my pelvic organs suddenly retract to where they're supposed to be I'll let you know. I still can't believe your second Consultant told you to starve yourself and eat only 1 meal a day. Aren't they supposed to be advocates for healthy diets? What's wrong with him? Sounds like he needs to attend some nutrition conferences to educate himself!
I know that thinking about how all your organs beginning their descent to the "outside world" makes you squeemish. Truth is that prolapse is nearly never an emergent situation and many women live without doing anything about their prolapse. If it bothers you that much and you are unable to have a repair any time soon you can always try a pessary to hold everything up until the time is right for repair. Why not talk to your first Consultant about it? It sounds like she has a sympathetic way about her, I'm sure she'll do her best to help you.
Michelle

THanks for replying Michelle.

Can a pessary hold up a vaginal wall and bladder prolapse- ?
I have had a TAH so no uterus to hold up ...
How do they work then? - Is there any info on this site re pessarys?

JooB

JooB
Although a pessary can't support a whole vaginal wall it can definitely help and works well to hold up a bladder especially. I have used a pessary before and after hysterectomy. My first experience was during my pregnancy when my historically tilted uterus was laying on my bladder and I was unable to pee. My OB/Gyn fit me with a pessary that was not very comfortable. Every time I pushed to have a BM it would nearly fall out. Once the pregnancy advanced and the uterus got bigger I was able to stop using the pessary.
The second time I needed a pessary was after my first prolapse repair failed. My new Gyn explained that you should not even be able to feel a correctly fitted pessary. He said it may take several tries with different sizes and styles before finding the best fit. And he was right, after a few tries we found one that was very comfortable and worked well for me. DH and I were even able to have sex with the pessary in place. The pessary I had could be kept in place for 3 months. Then my Gyn would remove it, clean it and inspect the vagina for any abrasions or problems from using the pessary and then reinsert it.
I had the pessary removed the morning of my second prolapse repair. Since then I have had another 2 surgeries and sometimes wish I had kept the pessary instead of going through all these surgical procedures that didn't work.
Why not talk to your Dr and see if a pessary is an option for you? Some women hate them but by using a pessary with the right fit you can definitely hold off on a surgical procedure until you are more ready.
Michelle