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Pelvic organ prolapse would not be addressed by my GP.

GeetarGirl profile image
22 Replies

I began to have a lot pain in my lower tummy & feeling like my pelvic floor was pressing down heavily after I'd had a heavy cough in February 2020. My GP refused to refer me to any services or diagnose me for 8 months. I wasn't referred until the following year while my condition began to get worse. In September 2021 I had to give up my job because it was too painful for me to be on my feet all day & I couldn't lift anything. I have been on sickness unable to work ever since. My GP practise would not offer anything to help me with my condition. Eventually in February 2022 I was given an appointment to see a specialist in London. I have been diagnosed with a complete pelvic organ prolapse & I need surgery. I have been told I will not be notified of a surgery date until September 2022.

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GeetarGirl profile image
GeetarGirl
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22 Replies

When you saw the specialist did they not suggest anything to help in the meantime? I know that pessaries are not suitable for everyone but worth a thought. You could always contact the specialist secretary and ask? not sure if any suitable thing can be bought over the internet? GoodLuck.

GeetarGirl profile image
GeetarGirl in reply to

Hi, The specialist was a surgeon. He didnt talk about anything else. My primary care are awful & dont want to provide any help.

Stellababs profile image
Stellababs

Yes IAlso went from

GP to GP with them saying nothing wrong with me . Soul destroying you feel powerless but was really upset as well when got the diagnosis . Now facing job difficulties because lifting would make things worse . Keep going with it you know your own body . Such a taboo prolapse no one talks about it .

Rostom profile image
Rostom

Hello

The specialist you visited would have sent his report to your GP so why not check with your practice that they have received the specialist's report and arrange another visit to your GP. The diagnosis by the specialist should be enough for your GP to act, if only to try you for a pessary which could relieve some of your problem. These can be fitted at your surgery, usually by the practice nurse. They try different sizes until they find one right for you. The pessary holds everything back up in place, releasing you from that horrible dragging feeling. They didn't unfortunately work for me but many others have had excellent results.

I was referred to a gynaecologist and asked if I wanted to try Kegal exercises. I was very sceptical but have found that they do work, at least for me (I did not want surgery). Takes time and is not a quick option but everything is much better! I also use an Elvie trainer and have heard good reports of the Kegal8 trainer. These are both gizmos that help train (just as in Kegal exercises that one does on one's own) your bits and pieces to stay where they should! All these exercises have to be done daily but they do work.

Please revisit your GP and ask about the specialist's diagnosis, pessaries and Kegal exercises.

Wishing you good luck.

MOLLYMILO007 profile image
MOLLYMILO007 in reply toRostom

Yes I agree I've used hrt and a kegal 8 for 10 yrs with success although had to have surgery 3 weeks ago as had to come off hrt...xx

GeetarGirl profile image
GeetarGirl in reply toRostom

I saw a bladder & bowel specialist a few months ago. The waiting list for pessaries in HEYNHS is over 2 years.

Poppycat999 profile image
Poppycat999

Hi sorry to hear of your prolaspe. I had a gynecologist tell me l had a prolaspe. A doctor tell me l hadnt. I still haven't had a proper diagnosis of what's on the descent! My doctor says he thinks a bit of all has prolasped (bladder uterus and bowel )The good news l have a kegel8 and a ring pessary. The pessary does help alot. I dont stay too long on my feet and have altered my life to accommodate things. l do take a small laxative sachet daily to make my stools softer and easier to pass.

I don't want an op as l am definitely not having the TVT mesh tape!

Now l have a thyroid problem as well l dont know which is worse! I am on levothyroxine now only second week still feeling terrible especially tired even got puffy red eye surrounds!

Recently turned 60. I have 7 more years before my state pension thanks to this government. To cap it all l have been waiting 2 weeks for a spare pessary to come in at my chemist thank goodness it's a spare!

Definitely try a ring pessary and pelvic floor exercises l have been told by a B/B nurse mine was non existent now its weak so an improvement!l do really hope a pessary gives you some relief.

Elaine2710 profile image
Elaine2710 in reply toPoppycat999

NICE guidelines says that they not allowed to use TVT tape now or any type of mesh unless it’s part of a trial. If it’s a trial you would have to be willing to take part. I’ve just had a hysterectomy and an anterior repair though the NHS and the repair etc was done using dissolvable stitches. Make sure that your specialist is a urogynecologist.

MOLLYMILO007 profile image
MOLLYMILO007 in reply toPoppycat999

Just had the op for prolapse at spire my surgeon used stitches all OK so far I didn't want the mesh but he said he didn't use that anyway I went private as didn't want to wait xx

Harvhug21- profile image
Harvhug21- in reply toMOLLYMILO007

hi how much did it cost at spire? Im fed up of waiting i need surgery

MOLLYMILO007 profile image
MOLLYMILO007 in reply toHarvhug21-

hi im blackpool north it cost around 6.000..that imcluded the 2 night stay and aftercare..im.sure the nhs has the same surgeon but it was my first ever op and im 63 so i was nervous as hell..as fear of the unknown ....op went well staff were fantastic however my recovery wasnt great ..i think i expected to be super woman as im healthy no other issues but it took my a good 3 months to start to feel ok ish..im fine now back to normal in everyway this was feb...so if you can afford it go private its interstimg to know the surgeon only gets a small part of the money ..the anesthetist and spire get the rest..but if you can wait get your name down on nhs...tget dont use mesh now just stitches ..i think thats why my recovery took so long as i had alot..but all is ok now..good luck xxx

GeetarGirl profile image
GeetarGirl in reply toPoppycat999

The surgeon told me only stitches were used after I had Sacrocolpopexy. As far as I know they didnt use mesh to pin my vagina up.

Poppycat999 profile image
Poppycat999 in reply toGeetarGirl

Thankyou for your reply. Polypropylene is the material that is best avoided as its man made and after several years can erode and degrade. I am extremely interested in what is used today in case my prolaspe becomes worse. Do you know what the stitches used were made of? I am finding it very difficult to find out what is actually used today and what materials are used. I wish you well and hope you will soon feel better and everything is more comfortable for you.

Bluebah profile image
Bluebah

That is awful, I feel so bad for you. It is total neglect from your surgery and you should be complaining heavily! I hope it is all sorted soon x

marilwyd profile image
marilwyd

take a look at this website uterusprolapsed.com - it's Ayurvedic treatment.

Meze profile image
Meze

Go back to your doctors and push for an earlier appointment.You should not have to wait that long my lovely.Or find another Dr.Could you afford to go privately?In the meantime rest,do your pelvic floor exercises and take life very, very gently until you are well.It will get better I promise.I understand totally as I had the same issues...but I certainly did not have to wait that long for my op which sorted it all out.Take care.Sara xx😘

SusiReadsALot profile image
SusiReadsALot

There are these physical therapists who specialist in the pelvic floor. I watched a few YT videos on it. It is very helpful. It does seem a bit extreme to go right to surgery when women have suffered this for millennia and there are ways of coping with it, easing discomfort, so that you don't feel rushed into a surgical resolution. In Chinese medicine we learned about this as being a "Spleen sinking" phenomenon. The forces that lift things up are not working right - so organs sink. There are herbs and treatment. The question is why did it happen. Can it be eased up. I would ask for a referral to a pelvic floor specialist - just to get some real world help while you are pondering your decision. <3

MOLLYMILO007 profile image
MOLLYMILO007

Hi I've just had pelvic surgery as I had a bladder prolapse which after I came off hrt got worse through lack of estrogen so I do think if it's so bad surgery could be the answer...I went private as didn't want to wait if u can afford it go see a consultant at spire its norm about 150 send get his opinion he may be able to push you up the nhs list if u can't go private def worth a try xx

FloPelvicproblem profile image
FloPelvicproblem

Thank for sharing you story ...i am 54 going through same problem with my doctor...I have severe lower abdomen and lower pelvic floor back passage pain ask doctor to refer to see g doctor urgently said no...had many trips a&e still no help never know that the pelvic area could be so painful

Person99 profile image
Person99

Hi there, so sorry to hear of your situation. Did they examine you when you went to the GP each time? Might be worth making an Access Request to get a copy of your records and see if they made a note of you asking for a referral etc.

Certainly would be grounds for a complaint as may have been treatable by less invasive means at the earlier stages. So sorry again.

GeetarGirl profile image
GeetarGirl

After 2 & a half years I have a surgery date on 15th August. Hopefully I'll be free of pain & bladder urgency before the end of this year.

GeetarGirl profile image
GeetarGirl

On 15th august 2022 I had a Sacrocolpopexy operation (vaginal vault surgery for vaginal prolapse) at a Nuffield hospital in London. I was referred by the NHS. I feel quite lucky after waiting 2 & a half years. Ive heard many other people are on waiting lists up to 4 years for this surgery. I couldnt have laporoscopic surgery as I already had adhesion scars from a previous abdominal surgery. I was discharged after 2 days. The 6 hour ride back home in an ambulance to Hull was very painful. I had to search out guidance for rehabilitation as GPs dont seem to want to provide any help. The 1st 2 weeks of recovery were awful. I didnt recieve any aftercare. I had to make multiple phone calls just to have a district nurse visit to remove the metal clips on my surgical scar on my tummy. I was left without pain relief at home for the 1st week. Its 6 weeks Im post op now. It doesnt feel like Im carrying a lead golf ball in my pelvic floor anymore but I have to be very careful lifting anything & what activities I do for the rest of my life. I have to do pelvic floor exercises every day to strengthen my muscles.

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