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Pelvic organ prolapse

Posted , 9 users are following.

charlotte11610
charlotte11610

Hi everyone,

I have a question that I am hoping someone can help me with. I am 23 years old and I have 3 children who were all heavy babies 7lbs 14oz, 8lbs 8oz and 8lbs 14oz. For a couple of years I have suffered with problems opening my bowels, I have to strain even to pass diarrhea or I have to manually remove the stool myself. I have been going to the GP for quite a long time now regarding this and was always palmed off with suppositories or laxatives, none of which worked and just caused more pain.

Since last year I could feel a lump in both my vagina and rectum and was starting to have problems urinating and noticed my urethra was bulging.

I went to the GP regarding this and was again offered laxatives in which I declined, I was given an examination and was told that they couldn't feel anything. I went back several tomes to be told the same thing by numerous doctors.

At the beginning of the year I begged my mum to come with me as I suffer with anxiety and depression and I am not great at standing up for myself. I burst out in to tears and told them that I couldn't live like this any more and that I was in constant pain. I was given blood tests to rule out IBS, celiacs disease and various other problems and I was booked in to have a transvaginal ultrasound.

I have been for the ultrasound and when receiving my results they said all was well and that I had a small fibroid that would not be causing these problems. I asked to be referred to someone else and was referred to a gastroenterologist who booked me in to have a sigmoidoscopy - I did the enema on the day and I was in agony and still wasn't able to open my bowels, it was a further 5 days until I did and the doctors were not concerned in the slightest. I wasn't able to make the appointment and they're sending out another appointment in the post.

I haven't had a period since last December but 3 months ago I started to have brown vaginal discharge, I put this off to my period but this then happened again for the next 2 months. I made a nurses appointment 3 weeks ago due to this and I had an examination with two different speculums and was then told I had a uterine prolapse, I was then told to see the GP - I had this appointment last week and a further examination showed that my uterus is indeed prolapsed and pushing on to my bladder which is causing the bladder issues and I also have a rectocele. I have been referred for physiotherapy to deal with this.

In all of this I have not been offered any form of pain medication and today was the final straw for me, I have a strong pain threshold and after dealing with this pain for such a long time I have sort of learned how to push through it but today I collapsed to the floor in tears I was in that much pain and I just can't do it anymore. I am constantly leaking urine and stool and it is embarrassing, I cant take my 3 children out in fear that I wont have anywhere to clean myself up or get to a toilet quickly if needed.

I am 100% sure that this should have been picked up sooner and at least been picked up when having the transvaginal ultrasound. I have had to be in pain for over a year now fighting for someone to take me seriously and it took until I said I wanted to be dead for someone to actually listen to me.

I understand the NHS is under a lot of pressure but does anyone think I would get anywhere with a complaint and how I would go about it - I don't want compensation I just want other patients to be taken seriously as we know our bodies better than anyone and I believe if they actually did a thorough examination like the nurse did then I wouldn't still be suffering like I am.

I can't actually do this anymore I am in so much pain all the time and even with a high pain threshold its now getting to the point I cant do anything that I used to do and it is really getting me down.

If you've made it this far I am so thankful and I look forward to your response.

Much love Charlotte

0 likes, 10 replies

10 Replies

  • JeanineR
    JeanineR charlotte11610

    Posted

    Hi Charlotte.

    I am so sorry to hear that you are having such a hard time I really can sympathise with you. I too have been sent from pillar to post and always told I am constipated and offered laxatives for years to the point where I just walked out of a appointment as I could not handle the disappointment of the doctors not listening anymore.

    I have a intussusception and mucosal prolapse and I have had it for years and was always told I had piles but no one would actually investigate why I had piles which now have led to a rather serious defect (the prolapse) I have had a hemorrhoidectomy, which in a weird way actually kept the prolapse up as my prolapse is so close to the exit and once that was done everything just folded up on itself and the mucosal prolapse has pushed through and past my anus which can be very painful as I have constant pressure there all the time. (And looks like piles but are not)

    I also have to digitally help myself going for a bowel movement by pushing the prolapse to one side ... I have had 2 procedures which was a series of stitches and a furgeson hemorrhoidectomy, to remove the what I call bulges around my anus ( of which I still have two left) and the stitches was to hold the prolapse out of the way. The stitches failed within 2 weeks. I then went in for another set of stitches and that failed within 2 weeks as well. 🤦🏻‍♀️( waited 8 months in between procedures) I am now back on a waiting list for the laparoscopic ventral mesh rectopexy procedure/ operation as this is the only other thing that can be done.

    I have been at the mercy of the NHS administrators who in actual fact are the people that play manopoly with our lives as they make the GP’s and specialists jump through certain hoops and demand that steps a to b are done first before they will do what is really needed, in the hope that the lesser suggested things like physio, laxatives and stitches will solve the problem and it is the most frustrating thing ever! I have 3 kids and they where not unusually big, it’s just my body did not cope with me having kids and it just happens to us woman unfortunately.

    I really feel your frustration and you need to keep at it. It is the most humiliating thing you can go through in life having to explain to people what you have to go through over and over but we are the only people that will fight for us! I have been struggling with this for over 5 years now it is hard to stay positive I know... but just keep at it! I know it is no conciliation it just drives me up the wall! Unfortunately the tests that are available for our problems don’t show how severe it is because we are not in the position that the problem occurs or they shove things up your backside and the problem is from the other direction ... it just does not make sense to me at all 🤦🏻‍♀️

    I really hope that you can keep fighting your cause as you are worth every minute it takes what you have to do to get heard. Granted our issues are not exactly the same, but the suffering that we go through is. I have also tried complaining and got no where... I was very rudely told that the specialists that deals with me also deals with cancer patients. And believe me that was a very low blow. I just said to the woman “ oh so because I am not dying of cancer I am not that important?” And just put the phone down and cried. There is a ombudsman for matters with the NHS that you may want to look into. It is pure madness how they deal with us and our pelvic issues.

    I hope that you get the strength to keep fighting your cause and don’t give up!

    Best wishes

    Jeanine

    • charlotte11610
      charlotte11610 JeanineR

      Posted

      Hi Jeanine

      Thank you for commenting and I am so sorry to hear about all of the trouble you have had to go through.

      I really am trying to fight this but the pain is just getting too much and when I cant even do simple things with my kids any more its really upsetting.

      I haven't been to physiotherapy yet as I was asked to make my own referral on-line, I did this and a couple of days later I received a letter to say they had my referral and invited me to call them to make an appointment.

      I hope things get sorted for you soon.

      Charlotte

  • Imnotadoctor
    Imnotadoctor charlotte11610

    Posted

    Hi Charlotte,

    I think we have spoken before (apologies if it wasn't you) have you seen a Urogynaecologist yet? Tell your GP that you want to be referred to one, if you do have prolapses then they would be the best person to see. Take your Mum or a friend with you and insist that they refer you. You do not need to live like this there are procedures they can do to help you.

    Often scans are done whilst you lay down and the prolapse isn't picked up. My doctor examined me standing up (somewhat embarrassing at the time but don't let that put you off!)

    Make an appointment, write down what you want to say & any questions you have before you go. Good luck.

    • charlotte11610
      charlotte11610 Imnotadoctor

      Posted

      Hi,

      I think we may have, I have asked for further referrals but these have been denied. Since the very beginning they have seemed to think that I was lying and I honestly still think that as when I tell them my symptoms and how much pain I am in they just seem to look straight through me.

      I am going to make an emergency appointment today because I have woken again in absolute agony and I just can't do it anymore. I pray I don't wake up in the morning because I just can't cope.

      Thank you for your reply

      Charlotte

  • mandie69638
    mandie69638 charlotte11610

    Posted

    Hi Charlotte,

    i am so sorry that you have had to go through this. i am very lucky that i have a great GP who referred me straight away. i put up with my symptoms for 4 years before having the courage to go and so i empathise with your frustrations. i do not think you have been treated well and would encourage you to make a formal complaint. your doctors surgery should have a practice manager - i would start with them. dont be frightened to name the doctors you have seen.

    it takes someone with great courage to follow through with a complaint but if you do, you will be saving someone else having to go through what you have been through.

    i hope you get the surgery you need and things start to improve for you. take care

    • charlotte11610
      charlotte11610 mandie69638

      Posted

      Hi thank you for your response, my GP surgery isn't the greatest but unfortunately the only option for me as I don't drive and find it difficult getting public transport.

      I have had the symptoms for such a long time but the doctor's kept putting it off and it wasn't until last year that it got really bad and I just wasn't going to leave it anymore.

      I haven't even been told what stage my prolapse is at just that I have one. They won't even consider surgery and want me to go to physiotherapy first to do pelvic floor exercises despite me telling them I do that everyday.

      I am definitely going to speak to someone about making a complaint though as through this whole process of telling them there was something wrong they didn't listen at all and just told me I had constipation.

      Thank you again

      Charlotte

  • julie09111
    julie09111 charlotte11610

    Posted

    Hi Charlotte

    You poor thing...I am not sure about how to lodge a complaint with the NHS however I have had a uterine and bladder prolapse and had an op last year for the uterine surgery Sacrospinous fixation and 4 weeks ago I had surgery for cystocele bladder prolapse.

    Both went well and am now on the mend

    Diagnosing in my case was pretty much straightforward to be honest it sounds horrendous what you have and are going through

    I would demand to see a consultant in gynaecology and find out what stage you are at re the prolapse or maybe go private if there is a long waiting list? I know that stinks that to get things moving and of course it will depend on cost

    I take Movicol which is a laxative as Iam a constipated person ! This works brilliantly for me I take two sachets in water per day so you may want to try this?

    See your GP I get this on prescription but perhaps its available over the counter at the chemist

    I am offering you some positive thoughts that if you have surgery my experience was really good with the NHS

    I really hope you get sorted soon Charlotte this site helped me enormously by the way

    Hugs

    Julie x

    • charlotte11610
      charlotte11610 julie09111

      Posted

      Hi Julie thank you for your response. When I go in for my GP appointment tomorrow I will ask for a referral to see a gynaecologist as they have told me I have a prolapse but not what stage it is at and just told me to make an appointment with physiotherapy to do pelvic floor exercises, despite me telling them I do that everyday anyway.

      I'm not sure if I would be able to afford private although my Nan has offered to pay if the doctors don't hurry up and sort everything out regarding the pain I am in.

      I have had Movicol and Macrogol both of which give me severe stomach cramps because it all just gets stuck and I have to physically strain even for watery stools - even passing wind is a challenge most days.

      Thank you again and I hope everything goes we with your recovery.

      Charlotte

  • karen61515
    karen61515 charlotte11610

    Posted

    hi Charlotte

    sorry to hear about your issues and troubles regarding your pain etc. i also have been stuck getting passed to different consultants regarding problems with pain and bowels after gynae surgery for a posterior and anterior repair over a year ago and no-one addressing my pain (at one point i ended up in hospital as the pain was excruciating, but still no take home pain relief or answers!!

    i did put a compliant into the nhs but to be honest you don't get much response back to your answers!!

    i have found that buscapan tablets have really helped me with the pain from the bowels, not sure if you've tried these but these are a lifesaver for me.

  • megan0424
    megan0424 charlotte11610

    Posted

    I am 35 and had 4 kids, 8.9 lbs, 8.1 lbs, 7.9lbs, and 8.1 lbs. Ironically the smallest baby completely did me in. I had a really bad rectocele and had to repair all the way up to my cervix. Before that I couldn't have bowel movement. I would become depressed when I felt one coming because it took days and lots of smearing.

    The urogynocologist I saw offered things, but said it's all temporary fixes to surgery. I'm now 2 weeks post op and feel so much better. I've never been so thrilled to poop because its easier. I'd say I' 80% improved, but I'll take it!!!!

    Make sure you see a good urogyno because that is what they specialize in.

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