What should I do? Help!: I'm a bit confused... - Endometriosis UK

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What should I do? Help!

SatansLeftHoof profile image
14 Replies

I'm a bit confused as to what to do here; I have a suspect cervical prolapse which is interfering with urination, and was referred for an "urgent" appointment with the gynae. However after waiting nearly two weeks for their letter I was so kindly informed there are NO appointments available and we all know how long their waiting lists are (can go up to four months I believe). I have been back to the doctor once who tried to hurry them along to no avail. With the walk in sexual health clinics I'm assuming you just see a nurse? Should I go private (not that I can afford it at all) or just go to A&E which seems melodramatic but I don't know what else to do... Any advice would be really, really welcome. Thanks.

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SatansLeftHoof profile image
SatansLeftHoof
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14 Replies
Impatient profile image
Impatient

Have you already tried a vaginal pessary to see if that helps?

nhs.uk/Conditions/Prolapse-...

has some info on the vaginal pessary - but you can google to get a lot more info.

It's certainly worth trying that to see if it does help.

Lilly83 profile image
Lilly83

Hello

I have the same, my GP confirmed a pelvic prolapse 3 weeks ago, my vaginal walls collapsed too, I'm struggle toileting both ways

My case was marked as urgent, I know a usual referral is 12-18 weeks so in presuming urgent might be between 4 and 8? Even if we got seen quick we wouldn't be put on an emergency surgery list as its not an emergency is it? I really wouldn't go to a and e I'm surprised you're considering it. Also don't think the sexual health clinic will be able to help at all.

Have you had surgery in the past? I had 2 ops last year that I think has weakened everything down there, i'm peeing 40 times a day (my ureters were blocked and I had bladder and bowel endo with stage 4 everywhere amongst several other problems) I can't pee properly though so I'm having to force it out and have given myself piles straining to go, I'm also leaking urine, when I have a bowel movement I have to push the area of skin between both holes (sorry tmi) as its getting stuck in an area that seems to of prolapsed, it's a nightmare!

I did pay to see a private gynae last year at one point, £150 for 30 min, def better than wasting a&e resources

I'm having ivf next month and really wanted it sorting before then but it looks like it won't be

Hopefully we will both hear soon,

Personally I would pay to see the consultant at the hospital for a private consultation. (You can usually be seen the following week !) and at your consultation ask for any surgery to be carried out in the NHS. You will probably shorten the whole process by a few months by paying for a private consultation.

Best of luck.

Barbara

P.S if it every gets to the stage that you can not wee because of the prolapse, you should go to A&E

Hi - I have prolapse nightmares too. A rectocele and a cystocele which, for anyone who may not know the terms, means that the back wall of the vagina is being pressed in by the rectum and the front wall is being pressed in by the bladder.

It does make it incredibly hard to pee - and also to stop once started. I have to wait a while after the first pee has finished and force a second as it gets 'caught up' and I leak if I try standing too early. Bowel movements are also not straightforward and I can be incredibly uncomfortable because of it. I also ache down there. Everything feels in the wrong place. When I first saw a doctor around July time last year (can't remember exactly) I already had a gynae appointment re endo so I was fitted with a pessary and felt more comfortable on the day. Unfortunately the pessary kept moving and became so uncomfortable it had to come out only a few days later. The gynae I first saw said 'minor' rectocele and do exercises. This was last August probably. I wasn't impressed by him for other reasons. Since then, and despite exercises, it continued to worsen and sex became suddenly painful around February time. I could feel that something else had moved into the wrong location. Saw the GP who said 'the prolapse looks alright' but the examination was so painful and when she clearly wasn't going suggest anything to help I cried. I could tell that it was worse and when pushed she mentioned the cystocele, which was new information, but she professed to still being puzzled by why this would cause painful sex. (I'm not remotely puzzled.) Some tears and incoherency from me led to my husband insisting on not leaving it at that (which is where I usually go wrong) and I was referred to a gynae again - although I asked to be referred to a different one as the last gynae was a 'box ticker' and not interested in individuals needs. I had a choose and book form and went online and made an appointment in early April. They had stopped using this method of booking consultant appointments but I was really pleased to see it back again. I am usually not well enough to deal with things until midday so dread being offered early morning appointments. So whilst picking the earliest available date offered I could also pick the time.

This time I saw a really good gynae - he listened, examined me and apparently I now have the two prolapses. He said that they aren't 'catastrophic' which he explained usually means outside of the body. However he did say that exercises will only slow it from worsening. I won't be able to get it back to how it should be or improve it in anyway. He said the only solution is an operation. Lily83 - what this gynae did say is that he considered it completely unacceptable to have to live with needing to 'assist' yourself in order to have a bowel movement. He would definitely say you needed an operation. Not that I think you need convincing but some gynaes might not be so upfront about it. For me he also recommended endometrial ablation as Mirena and I aren't getting on too well. He left it with me to have a good think about my options and to go back and see him in 8 weeks. Think I was in shock about a) being listened to b) being offered treatment without a battle!

Yesterday I was a bit worried as I hadn't had the appointment letter and wondered if one had been sent but lost so I rang and the person I was speaking to said that they normally write a bit nearer the time to the appointment's due date. However, as I was on the phone the gentleman offered to make the appointment there and then and I'm going back on 4 June.

I agree with Lily83 that this isn't an A&E issue and a sexual health clinic would not be the right place to help this problem unfortunately. It's really horrible but not an emergency, even if internal parts are outside the body (gynae told me of one lady who'd lived 40 odd years like that and then suddenly in her 80s was fed up with it.) UNLESS as Barbara says you get to the stage of not being able to pee at all. That would make a person very ill and is time to go to A&E.

I know availability of consultants and waiting lists varies across the country. All you can do is wait the time your GP suggested it may take - if they didn't say roughly how long the waiting list is then it might be a good idea to find out from them. You could probably get a call back from your surgery? That often works for me if I have a query. You could also get the number of your appointments team and call them as well. The private appointment idea is a good one, if you do have the funds at all, and it will speed up the time between now and possible treatment. If it's NHS then sadly all you can really do is wait for the system to process you. That it's horrible waiting while like this I really do get but unfortunately, sometimes, that's the only option.

Good luck and hope you hear something soon.

Deb

Marion78 profile image
Marion78

Go to A&E and tell them you're in pain. That's what I did. And I kept on going (4 times) in 3 weeks. I cried a lot as well both at GP 's and A&E and gynecologist 's, until they understood how bad things were for me. I also phoned them nearly every day until they gave me an appointment. I'm having surgery in 10 days and it took 8 weeks in total. From the day I was diagnosed to the surgery. All this because I really insisted. I didn't mind spending 7 or 8 hours at A&E each time, as long as something was done. Go for it! Don't give up!

_hope profile image
_hope

Your local hospital may have a 'pals' team who could advise you - they would know the ins and outs of the system and what you can do. I hope this helps xx

I'm sorry. I probably should just keep quiet and moan to myself as this is probably going to annoy quite a lot of people but it's something I do feel very strongly about. I think there is a serious misunderstanding by many people about what our A&E service is for. If you need treatment for prolapse then bug the hell out of your GP and your consultant and push for what you need - yes, I'm behind that. But not A&E. They really aren't there for that. I can understand the desire, truly I can, however, A&E is a resource meant to be used by people in serious accidents or in a life threatening emergency. Obviously if in doubt don't take any risks, eg not being able to pee as mentioned earlier. Pain can be telling you that you need life saving treatment so do go to A&E if you need to or aren't sure. Knowingly going when it isn't something that A&E is meant for? That isn't the correct route to treatment. Taking time away from people seriously ill? I don't feel happy with that and I hope I'm not alone. Waiting times in A&E can be dreadfully long and that is so frequently taken up by people who shouldn't be there. Pain may be awful and yes it is indicating that something is wrong but it doesn't mean that it is putting a person at risk of death. Ultimately A&E is there to save lives, the lives of people who would die otherwise. Not for health matters that, no matter how unpleasant, can be dealt with by a GP or really by the consultant that sees the patients referred. I do agree that things take too long but that's because there is just too many people and too few resources. However, all the time a person is in A&E for non-emergency issues they are taking precious resources from someone who may very well be at risk of death. I hope that I don't offend anyone. I am really glad to hear of people getting the treatment that they need but lets leave A&E for the truly serious stuff. Thanks to anyone bothering to read this far.

Lilly83 profile image
Lilly83 in reply to

Completely agree with this I cringe when I hear people going to a and e to hurry things up

Impatient profile image
Impatient

I agree with you in principal - but not being able to pee is a medical emergency and something A&E are equipped to deal with.

Being in severe pain that your prescription pain killers cannot touch is also something which can be addressed by A&E.

That said, so long as even a dribble of wee is coming out even if that means 5 trips to th loo every hour, it is not an emergency -it sure as hell is a great inconvenience.

I have been there myself when my bladder stopped fuctioning after a lapartotomy and took 17 months to get working again for itself without intervention.

Urinary retention, incontinence, assorted meds to see which gave the best of bad liveable with bladder function. I was checked or a prolapse and as I recall it was only about a 1 month wait near me, and I was sent to a private clinic by my localhealth authority to get it checked out, because the NHS own waiting list was so long.

So this is definitely one for your GP to chase up - even if that means travelling to somewhere that waiting lists are shorter. But mean time if you haven't tried a pessary as i mentioned above then do try that. Anything is worth trying if it can offer you relief while you await a discussion on whether surgery is indeed necessary.

The only reason to see a consultant about this issue is with a view to surgery.

The pessary can be prescribed by your GP.

Sorry, just to be clear I did say that a&e is the right place if a person can't pee but I do drone on so it probably got lost!! Severe pain I agree if you can't get an emergency appointment with a GP and get meds same day!

Your 17 months sound dreadful. I do hope things are much better now.

Unfortunately I do need surgery. The gynae said now or at some point in the not too distant future and as I react to PVC tubing used in ops (makes me struggle to breathe for a week or so after) guess I would do better younger and hope i can cope with it. That's the theory anyway. Ah well.

I completely agree with not going to A&E when there isn't a medical emergency.

In the ideal workd we would all have understanding and efficient GP's. Hospital consultants would treat us like real human beings and not just a patient number! And when we are suffering with daily pain, we should be treated as soon as possible and in a matter of weeks and NOT months.

But unfortunately we do not live in the perfect world! Most of us have experienced unsympathetic doctors and long waiting lists. And most of us have no choice but to get treated by an under funded and over stretched national health service.

Sorry for the rant..... But I completely understand the temptation to go to A&E in the hope we can by-pass waiting lists and get much needed relief from the pain we are in.

I am struggling at the moment with pain etc. I have to work for my family but it's becoming increasingly difficult. I have months to wait for my hysterectomy.... As my (very brilliant) consultant needs to carry out an exploratory laparoscopy to determine the extent of bowel involvement.

So I agree, A&E shouldn't be used in a non emergency situation but I can completely understand why someone would go!

in reply to

Did you say understanding GP? Sorry, not met one of those.... Well, once maybe. A locum, sadly, so never saw them again. Fortunately I have finally had some luck with the gynaecologist so they do exist. I agree about understanding why someone would go (sorry, I did say that but as I said in response to impatient I realise I did go on and on and so people might have fallen asleep part way through). Right, now just try and get off my soap box. I love your doggy pic. Is it your dog?

in reply to

Yes.... The pic is my little boy called Ozzy. X

SatansLeftHoof profile image
SatansLeftHoof

Hi, thank you for all your replies :) Where would I get a ring pessary? I'm guessing that getting one would mean seeing the gynae, which I can't as there are no appointments. Disasterdeb, wow it sounds like you have been treated awfully! I so get what you mean about pee 1 and pee 2, I have that too, if I stand up after I think I've finished peeing I'll wet myself as it'll all come out, very embarrasing. Its usually after pee 1 I have to manually poke my cervix back and then poke the top of my vaginal wall until I can actually pee again. Almost like I'm moving something else out of the way. Its really embarrassing and not to mention impractical, and I've had enough of it now. I also needed to see the gynae about my hormone treatment for my endometriosis, which was temporarily stopped but now as they cannot see me I've had to stop for good otherwise it'd mean starting from the beginning again and I've been told I can only have the 6 month treatment of zoladex and last time it took 3 months to kick in!

Lily83, I had a diagnostic laparoscopy to see if I had endometriosis (and sadly I do) but that is the only surgery and this has been going on way before I had that. Good luck with your IVF also, I'll be thinking of you :) My doctor is back on wednesday so I'll ring him to see if he can speed things up but if he can't I think I'll be going private as this is beyond a joke now. Thank you all :)

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