Not really a question, would love to hear positive stories

[sadandalone]

I hope it's ok to post thing here, it's not really a question as such but more that i'd love to hear some positive stories. I'm having a lot of problems with my prolapses, and I'm finding it impossible to get any help, it's like the doctors in my area are nuts or something, I've had two tell me "it's all normal" and refuse to refer me, finally I got a referal but it was just to a normal gyno who just told me to do my pelvic floor exercises even though yes, basically everything is falling down.  So I've been googling like a mad thing, trying to find out what to do, or where to go, and I'm now feeling so depressed. It's all so negative. Stories of failed surgery, women who can't have sex (which I am one of), advice for pushing organs back inside, failure rates for surgery, long recovery times..... I can't handle it anymore. Surely there's some women who have either found ways to ease systems a lot or had really successful surgery? No offence to anyone but I can't stand any more articles that make it all seem ok, just push things back in, rest when u need, try to have sex in different positions and hope it doesn't hurt/make you wee/feel humiliated you can't feel his penis etc. Surely there's a better quality of life than that especially for younger women?   I feel like I've been sucked into the bad mood of it all. In this day and age surely theres hope that we can feel good again? Sorry to ramble, I'm pretty upset. Anyway I'd LOVE to hear any positive stories, whether it's just how you deal with things or if you've had successful surgery, just anything happy :-)

[sadandalone]

I also get confused with who posted what on here lol but thank you everyone for the advice and sharing your stories, it seems most prolapse forums and just filled with worse case scenarios or less than ideal situations and it gives me hope to know it doesn't have to be all gloom and doom so thank you :-)

[UKlady1001]

Youre welcome.  
Let us know how you get on and good luck

[momohealth]

Thanks for the kind words, UKlady.  I definitely agree with you that we often hear more of the unsuccessful surgery stories which is why I wanted to post my experiences.  

I talked to my urogyn about surgical techniques, use of mesh, recovery and long term success rates.  He didn't promise a 100% guarantee, but his choices were well reasoned and they dovetailed with the reading and research I had done so I liked my odds entrusting his approach.  But I was still plenty nervous in the weeks/months leading up to my surgery date.  I tried to keep my focus ahead to the moment I woke from the anesthetic.  From that point on I just tried to remember that each day that passed was getting me my life back.  And it did.  Not exactly the same life, but a very near facsimile that I really enjoy.  And that includes my sex life ;-)  It's pretty amazing what having everything back in the right place can do for you.  

I'm 54 and I can honestly say that my vagina feels back to a normal that I haven't known since my 23 year old son was born.  Too bad I can't rejuvenate some of my other body parts back to when I was 30!

And, maybe best of all, I go through entire days without thinking about how it feels down there at all.

[UKlady1001]

Like you say, there are restrictions like no lifting, before and after a prolapse operation but there could be so many more advantages to a successful surgery.  We do hear so much about things going wrong and are so lucky when ladies like momohealth come forward to share a successful story.  

Get your appt and ask all of your questions then gather all your information together to make sure you are happy with whatever decision you make.
I know it is confusing at times, and life is so different to what it used to be that we do feel frightened at times as well not knowing what is the best thing to do, but you can ask your Urogynecologist if they offer you an operation, how often they perform this op each month and what success rates they have.  
It is all about you feeling you are doing what is best for you, and looking at all the options with all the information you need is another step forward

[UKlady1001]

Thank you for your sharing your story and great to hear that you had successful surgery... eventually with a Urogynecologist.  
Your experience of aftercare and length of recovery is shared by many ladies who take healing seriously..  Healing after the op and how careful you are in general long term like not lifting heavy weight and not getting constipated etc really indicators of how successful repairs can be for as long as possible.. many years hopefully.
Great to hear you are doing so well and long may it continue

[sadandalone]

I've made an appointment with a specialist but I have to wait for 4 weeks to see him, I have no idea what he'll suggest but I hope whatever it is it's something that puts me on the track to fixing this. To be honest I'm not sure what I think about surgery, on one hand I'd be happy to go through the long recovery time and lifetime restrictions on lifting etc especially since I already don't lift much, won't push trolleys, and do no excersise other than walking, but it seems so many women need further surgery, or it only helps some of their symptoms , and in some cases they end up worse off. My main issues at the moment are that I constantly feel things down there, like something is so close to falling out and it drives me insane, and the fact that sex is and has been awful since I had my daughter 11 years ago at age 26. I haven't had sex now in over a year and as it is I doubt I'll ever have sex again. I stretched so much having her, there's no grip or friction, all I can feel is the bulges being poked, and I'm terrified I'll wee, and I feel so sore afterwards that it's just not worth it. It's really getting me down at the moment, I'm only 37 and it makes me so depressed to think ill never have sex again. But I really don't know what to do, it seems that surgery may not fix those issues anyway. I do my pelvic floor excerises, my pelvic floor actually seems ok, it's the vaginal walls that are weak or damaged. So for now I'm basically living like an old lady, trying not to make things worse. I really wish there was better help for these issues, because it really does affect quality of life.

[momohealth]

Hi,  Just ran across your post today.  I'm glad to hear that you are getting a referral to a urogyn.  I have dealt with prolapse for the last 6 years.  I first was dx with uterine and bladder prolapse.  I had an abdominal hysterectomy and burch bladder repair performed by my gynecologist in Dec 2009.  

By early 2013 I had developed another bulge.  After I got past my depression and denial I got referred to a urogyn who dx an enterocele.  He suggested repair to this weakened tissue, sacrocolpopexy, small rectocele repair and perneoplasty.  It was performed with the DaVinci in a big 5 hour surgery in February 2014.  

It was a long recovery - 6 weeks of lifting nothing heavier than a gallon of milk, another 6 weeks of nothing heavier than 20 lb. as well as avoiding bending too far at the waist and no pushing / pulling type things.  (My husband or son grocery shopped alone or with me so that I didn't have to push a heavy cart for instance.)  After that I slowly felt more and more healthy until finally about 11 months after surgery when I realized I truly felt good again.  It is a major surgery and it takes your body around a year to get over it.  

Now I am nearly 18 months past surgery and I am feeling good and very glad I had it done.  Prolapse wasn't painful for me, but it was ruining the quality of my life.  I did a lot of reading and hope that I made the surgery choices that will make this a lifetime repair.  I will always have some issues, I assume.  I am very careful with water intake / urination.  I work hard at staying regular - constipation is very bad for my repairs.  I use vaginal estrogen cream to support my tissue health.  I walk my two 60-pound dogs separately rather than at the same time.  I ask for help with heavy items in a store.  But I'm not too bothered by these limitations - if we live long enough all of us can expect to have issues crop up, these just happen to be mine.

[UKlady1001]

Get an appt for a Urogynecologist as they are the prolapse specialists.  Gynes generally deliver babies but if they have further training they can do prolapse operations as well.  Find out what background and training your consultant has.  
It does sound like you have font and back wall POPs but you will need to get a proper diagnosis to know for sure.  
You dont 'have' to have an operation and could opt to try a pessary first and will need to be measured by a Urogyne for one.  However, few Urogynes, nurses or even womens PTs have seen the full range of pessaries so look on line and do your homework first before your appt and take a measuring leaflet with you.  
I use a T pessary type R for my front wall POPs and it also helps with my rectocele but I may progress to a further pessary either as an addition or seperately due to my POPs slowly working their way down.  Gravity does take over... or I may have an op at some point when I sort out my bladder wall infection...
I am 54

[UKlady1001]

There are a range of support undergarments available for ladies with POP.  Some women do find they are helpful and I am glad you are happy with the one you have found.  I have used several types of support garments and still use them from time to time but found that a vaginal pessary was far more helpful personally.  I still use my support underwear but normally when I am having particularly bad back dragging and need to stay upright for work etc.,
Thank you again for your input

[Hey_J]

Totally got confused with who posted what there!

Sorry, sad and alone, not sure if you are from the uk or not. But i totally get your post.

My question was to UK lady, hope you dont mind me asking! Thanks

[Hey_J]

Hi uklady!

Can i ask what your symptoms are? I am currently just starting the process here in the UK and GP has referred me to a gyne just waiting on an appointment.

I just hope that when i go i dont get fobbed off too!
I have a bulge that is visable at the front of my vag which i believe is bladder prolapse, also have to push my vaginal wall for my poo to come out which i think is a rectocele, aswell. Im so worried thay they will fob me off too, and also stressing if i have to have surgery. Did they say what stage your prolapse is at.

How old are you? I totally get your post and was nodding along. Im 29, and really dont want to have this vagina for the rest of my life.
Thanks J

[UKlady1001]

Not many Drs or Urogynecologists think of this either so make sure you mention this and ask them to measure it.
Good luck

[sadandalone]

Thank you so much for all the advice, especially about the bladder thickness because I never would've thought of that :-)

[UKlady1001]

Great news you have had a much better experience from your female GP.  Good luck with the appts you have coming up and with getting a Urogyne and physio appt.
If you have bladder pain at all then see if they will mark down how thick your bladder wall is when you have your ultrasound as well as look at possible prolapse areas as a thickened bladder wall can be due to infection.. this is only if you are having urinary symptoms.  
Hope all goes well and you get all your questions answered.  Write them down so you dont miss any out.
Let us know how you get on

[sadandalone]

Thank you so much for all the advice :-) I saw a female gp and she was lovely and very understanding and seemed to know what she was talking about. She wants me to have an ultrasound and Pap smear just to make sure those areas are ok and then she'll refer me to a urogynecologist and physiotherapy, so I'll have those tests done next week and in the mean time I will do as you suggested and have a look for specialists that seem good. I'm in Australia and maybe it's just me but it seems so hard to get a lot of information on these things. Especially in the area I'm in, most women seem to just accept prolapse etc as a part of life and don't seek help, so I don't think the doctors around here have a lot of hands on experience with it, and there are no urogynecologist's etc here, I'll have to travel into the city. But that's ok, I feel like I'm at least on track now :-) Thanks again for the advice.

[UKlady1001]

Have a look on the net for Urogynes in your local area and do some homework on them and what Urogyne training they have had, what medical associations they belong to and how long they have been practicing etc.,  I dont know the system where you are so see if you have a patient association as well for you to find out what rights you have if you feel you are being fobbed off by your GP.
Great to see you are going to see another GP.  If the door is closed, then knock on another door.  
Ask to see a womens physio as well.  Keep plugging away until you get to see a Urogyne, a PT, and some answers.
I took a photo of my POP in the evening to my Urogyne as it is a lot worse in the evening for me and most ladies.  I felt odd doing this but it did help for my Urogyne to see what I was trying to explain.  Obciously keep any POP photos off the internet, and just show them to your health professional if you feel this could help to show what is going on for you.

[sadandalone]

Hi uklady, thanks for for your reply :-) I tried a couple of years ago to get a referal for a urogynecolohist but the dr basically said no it's just a gynoecologist you need to see. I hope this doesn't sound nasty but really the Drs around here seem like  totally idiots, I'm not even sure that dr knew what a urogynecolohist was lol. I'm actually about to go to a new gp today and ask for a referal and also a referal for physiotherapy (I don't think I need a referal for physiotherapy but it's cheaper or something if I can get one) I'm feeling pretty determined, if the gp won't give me the right referrals I'm going straight to another dr until I get them lol. I don't know what grade my prolapses are because the gynoecologist I saw wouldn't tell me, he just said they're "mild", to be honest I'm not even 100% what prolapses I have but I know for sure my bladder and back wall are bulging, I feel like my uterus has dropped slightly and I suspect my urethra is dropping or something as well, I also have issues with the vagina and vaginal entrance being VERY stretched and lax. I do my pelvic floor excersises and use a kegal master every day but nothing has improved, only gotten worse. Anyway I'll go dr shopping now and hopefully get to referrals I need lol Thanks again for your reply.

[UKlady1001]

Hi there.  
So sorry to hear you have had such a negative experience so far from your health system.  
Can you ask to be referred to see a Urogynecologist?  They are the prolapse experts.  Gynes deliver babies etc and really need to have a much longer separate training for prolapse expertise.  Have you looked at pessaries at all?  Look round at pessary sites and get a measuring guide as well so you have take this in to the Urogynecologist to measure you for an appropriate pessary for your prolapse/s.  
I havent had a prolapse operation yet due to a bladder wall infection that may take a long time to sort out as it has been left too long so I am using a T pessary type R which is a silicone pessary which is helpful for my urethrocele and cystocele and also helps with my rectocele although it isnt specifically for a rectocele.  
When discussing surgery for prolapse/s ask your surgeon what their success rates are and how many of these specific POP ops they do a month.
You dont say what specific diagnosis you have in terms of prolapse/s as well as grade of POP/s.  
Seeing a womens physio therapist is really important as well to make sure you are doing your kegels correctly and to get an assessment of your Pf muscle strength etc.,

Right now if I were you I would return to my Dr to get a referral to see a Urogynecologist, get all my questions ready, ask also to see a womens physio therapist and while you wait for your appts to come through you can find out as much as possible about the different pessaries ( and there are lots ) that are on the market and what POPs they support.

Have a plan and work step by step forward to get the information you need as well as a proper and comprehensive diagnosis from a Urogyne.  Look at your options, and strengthen your Pelvic Floor muscles with the help of a womens physio therapist.  It is worth traveling some distance to see the right heath professionals.  You are worth it