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Aibu to want to talk about pelvic organ prolapse?

(20 Posts)
anditallfallsout Tue 30-Jun-15 08:29:36

I know this isn't a classic Aibu topic but I am desperate and wanted to reach as wide of an audience as possible. I have also namechanged, I don't know why, I feel terribly embarrassed about it all and although my DH and DM are supportive, I am struggling sad

I am 36 and I have severe pelvic organ prolapse. Uterine, bladder and bowel. There are various contributing factors: I had a large long baby and a very traumatic 70 hour labour (which lead to a mentally and physically disabled DD - I have a clotting disorder which is what caused the terrible labour), I have Crohns disease which increases toilet sitting and I am also prematurely going through the menopause (confirmed) so the lack of oestrogen adds to the issue (no idea why, although both my Mum and Nan were early 40's).

I am having surgery to correct the mess but in the meantime, my standard of life is awful and I would love to know whether anyone else has had a total failure of the walls holding everything back? One prolapse would be enough but having absolutely everything fall inwards and downwards (and into my knickers) is absolutely awful sad the pressure in my vagina and lower stomach and back is like permanently crowning my ginormous baby. When I say baby, I should add that she is 7 years old.

I am doing all that I can to avoid adding to the issue but it is difficult to avoid everything as I am both nurse and Mum to my DD and I have to lift her daily. I am already on a ton of very strong painkillers, warfarin, steroids and biologic medicine as well as insulin (uncontrolled type II) and several hypertension meds. It is grim sad and to say I have complex cormorbid health issues is probably an understatement.

I rest as much as possible. I am unable to lay on my stomach and lifting ia agony. I cannot easily get up and down off of the floor as everything is hanging. It is very heavy. I do my best to push everything back in but sometimes the tissue mass is absolutely huge and who knows whether the bladder or bowel are where they are supposed to be. This morning, I can actually see my cervix without a mirror. It's that bad.

What can I do? Short of laying down until I have the operation I am stumped on how to live, function, look after disabled DD, enjoy the sunshine, be a wife, be myself. By lunchtime I am literally crawling, actually that's a lie as I can't crawl, by lunchtime I am horizontal and rolling almost to wherever I need to be.

Has anyone been through this? I'm not expecting a bunch of people to have had all 3 prolapses at once but what did you find caused some relief of the symptoms for you? I have been on antibiotics for 4 months because my urethra is god knows where and urine is pooling in a place it shouldn't so I have perma-UTI's. The pain is so heavy. So uncomfortable. I feel like I have a rugby ball half hanging out of me. The genitourinary team and my GP are being wonderful, they are so sympathetic and are giving me every drug they can come up with to try and help but for various reasons, nothing is helping.

I am told I will be having the sling procedure whereby they will take skin from my abdomen or thighs and transplant it into the cavity to hold everything back and reduce the risk of rejection. The mesh procedure isn't an option for me due to my age and the severity of the prolapse(s). I am also told that a hysterectomy is a very real probability but that is a whole other can of worms because due to my clotting disorder I am unable to have HRT and I am already suffering enough with the menopause so to have a hysterectomy at 36 doesn't fill me with joy sad Has anyone had the sling procedures with their own tissue?

Aibu to hope there is another woman here who can I help me? sad

Again, I'm sorry this isn't a classic Aibu sad

StarlingMurmuration Tue 30-Jun-15 08:33:25

My God, you poor thing. I'm having surgery this afternoon for a stage two rectocele.... I can only sympathise as I don't really know what it's like to have all three. When are you having your operation? How long have you been waiting? Is there anyway you could afford to get nursing help for your daughter?

WhatsTheT Tue 30-Jun-15 08:40:19

I have been in a very similar position, not as severe as yours but many treatments and operations. The constant feeling of carrying a bowling ball in your grown, uncomfortable, unnatractive. But trust me it gets better, and I'm getting better.

I dont have many suggestions for you except follow all the exercises and advice throughout your treatment, and have faith in the healing power of your own body.

I can only imagine how it must be for you. Birth and how are bodies can react to it can make us feel so out of control of our own bodies.

So many flowers for you. xxx

Moomintroll85 Tue 30-Jun-15 08:44:22

I don't have any experience in this but flowers it sounds horrendous.

All the best for your op and like Starling said can you get any more support to help you with DD?

WhatsTheT Tue 30-Jun-15 09:26:49

Bumping for you, hope you find someone who can share experiences with you.

SonjasSister Tue 30-Jun-15 09:36:47

You clearly need help - you are the one who shoukd be being nursed! Have you contacted ss to see what help can be found for DD ? Even a respite stay ? You will need to be planning now for post op as well, as no one will be impressed if you start knackering all the hard and expensive work the surgeons have done!

Actually, thinking about it the constant lifting of dd must have exacerbated your condition. So you need to find another way. She isn't going to get lighter. PLEASE do notfeel you have to do everything for her just because you are her mum. You wil end up like you are now, not able to do much at all. Ifyou can go to a physically undemanding paying job for some of the week, and earn so you can pay a physically fit , professionally trained carer who could enrich DDs life through variety and by helping your health, wouldn't that benefit everyone?

however Tue 30-Jun-15 09:49:00

You poor thing. I'm so angry on your behalf that this does not seem to be being treated as urgent and it's taken this long. Also that you are not eligible for assistance for your daughters care (are you)?

When are you scheduled for your op?

I wish I could help more.

GloGirl Tue 30-Jun-15 09:54:21

I'm just hopping on this because I've had a partial prolapse and I'm curious if some other symptoms I'm having are caused by a larhlalarger prolapse. I'm meeting with a gynae on Friday.

Are you seeing a physiotherapist? I was told pilates was really good for core strength not that it will fix anything but if you are able to carry yourself slightly better it might alleviate symptoms?. What is the delay on your surgery?

flowers

BeyondDoesBootcamp Tue 30-Jun-15 10:00:43

flowers flowers flowers

I have severe rectocele and moderate cystocele. Mine is 66% likely to be unfixable due to my eds and i've been told they are too severe for physio to help (to go off on a tangent, this followed me being told there was nothing wrong at my first gynae appointment and was perfectly normal in the postnatal period with an 18m old and three year old... Took another 18m for me to get up the courage to ask for a second opinion) I'm 29.

I dont know what can help, but i want you to know you are not alone. <un mn hugs>

StarlingMurmuration Tue 30-Jun-15 10:41:46

Not meaning to hijack but can I ask you and the other posters with prolapse, did you have a forceps delivery? My consultant said it was most likely the forceps that caused my problem. It makes me really angry because I was very firm in my birth plan that I didn't want forceps and they used them anyway, and now seven months later I have to have an operation, and I'm terrified I'm going to die under the knife and my DS won't even remember me. sad

BeyondDoesBootcamp Tue 30-Jun-15 11:15:59

My first delivery was with ventouse, second was unassisted. But i've also had an inguinal hernia before, so with the eds it was somewhat inevitable, assisted delivery or not

What time are you due to go in?

QuiteLikely5 Tue 30-Jun-15 11:19:52

Can I ask what the signs are of a prolapse? Both front and back?

I think I have issues but I'm too afraid to see the GP

StarlingMurmuration Tue 30-Jun-15 12:01:35

I'm on my way now. The surgeon was very reassuring but obviously in still nervous, of the pain afterwards at the least.

I don't have any symptoms tbh. I saw the gynaecologist about another issue which was causing problems, caused by my episiotomy scar pulling when I have sex, and he noticed the rectocele and said he might as well fix that while he's at it, as it could get worse in the future.

GloGirl Tue 30-Jun-15 12:12:18

QuiteLikely, I had a talk eith the GP and he was happy to refer me without giving me an examination in case that helps you.

GloGirl Tue 30-Jun-15 12:13:14

Good luck today Starling, let usknow how your recovery goes flowers

BettyCatKitten Tue 30-Jun-15 12:14:40

Op, I don't have any experience of your condition but with regards to your disabled dd have you a physiotherapist to help with a moving and handling plan for her? Can you get adaptions and equipment in your home to help? Hoists, profile bed etc to minimise the physical effects on your body? Do you have a SW through the children with disabilities team from your LA. It sounds like you need respite either in or outside of the home so you can recover.
I wish you all the best and hope you get the help you need flowers

TheNewStatesman Tue 30-Jun-15 12:28:05

I am so, so sorry for what has happened to you and your daughter. sad

Is there any chance of getting some apparatus that would alleviate some of the strain--stairlift, bed/bath apparatus for moving her?

Plarail123 Tue 30-Jun-15 12:34:32

OP, so sorry to hear of your troubles, have some flowers! I have very similar issues to yours although not as severe, I can't imagine how difficult this must be for you but I am sure it will get better. I have a clotting disorder with early menopause at 38 and no HRT. I am getting through it but it is very mentally tough. I have severe problems caused by a 52 hour labour and then forceps which also damaged my child. Unfortunately there is no public healthcare where I am so I can't afford to get it properly investigated or fixed. I have lost weight and will continue to do so as this seems to help with the heaviness. I really feel for you and hope you get the surgery you need soon. If a hysterectomy is on offer I would personally go for it. Good luck, you sound very strong,
I'm sure you will conquer this.

StarlingMurmuration Wed 01-Jul-15 16:51:01

I just wanted to say to those of you waiting for surgery, I'm back home safe and sound, in very very little pain at all. It was a bit painful last night, but now I feel fine. In fact, it's going to be hard to remember I'm not allowed to pick things up or drive because aside from some tenderness around my external stitches, I just feel like normal. So fingers crossed that your ops go just as smoothly!

saltnpepa Wed 01-Jul-15 17:02:10

Why isn't your operation an emergency if you can't really live normally? How long have you got to wait? Poor you, it sounds unbearable.

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