sam cleasby sheffield blogger

I think I’ve found a topic even I feel shy in talking about… 

Type. Delete. Type. Delete. Draft. Scrap. Write. Burn laptop and bury remains in the woods.

I’m struggling at the minute with something that even I, Poo Lady Sam, am finding it hard to talk about.  I’ve shared with you all every high and low of my illness journey in the past two years, from shitting myself to surgery, tears to joy, complications and photos of my intestines!

So why is it that I can’t bring myself to talk about what I’m going through right now?

The truth is that I have a vaginal prolapse. My intestines and pouch are pushing against my vaginal wall from the inside and I am struggling with a rectocele.

This is really uncomfortable, makes toilet trips very difficult and hardest of all, I am so desperately embarrassed and sad about it all.

Why this complication feels SO MUCH WORSE than anything to do with my IBD I have no idea.  I suppose it’s because your fanny is so private, that it’s the centre of your womanhood, that the connotations around a less that perfect vag-j-j are humiliating and hurtful.

Perhaps it’s because we are taught to not speak about our genitals? Perhaps I am worried people will laugh? Maybe I’m concerned this is too private to talk about on a blog?

Even as I write this, I am very unsure of whether I’ll hit ‘post’.  But like every other medical ordeal in the past few years, I thought that the act of writing this could be cathartic, whether I share it or not.

When I say the word ‘prolapse’ out loud, I cry.  I get a lump in my throat and tears spring into my eyes. I feel shame burning across my chest and making my cheeks glow fiercely.

I’m in pain. It hurts, this dragging back ache and a psychological terror that everything will fall out.  Going to the loo is stressful, upsetting and scary.

But worse than all of that is this feeling inside like a small black hole that’s slowly absorbing any good feelings. It’s making the colour drain from life, sucking at happiness. I can’t think how I can cope with this setback, I’m scared.  It doesn’t feel fair. I’ve had my bad luck, surely I get a break now?!

I am trying hard to maintain a jolly personality and ensure that from the outside, everything is ok. I can sense, and I think others can too, that it’s all a bit forced, that my laugh doesn’t ring quite true, that my voice is a little too loud and my smile not very genuine.  I just can’t bring myself to admit to others that I am struggling as I don’t want to talk about my broken fanny!

And this is me! Bloody hell I talk about some of the most embarrassing conditions known to man! I go in the newspapers and on TV and talk about my arse!!!! Jeez, it’s ridiculous that this is throwing me so much.  I keep reading this post in my drafts and adding to it, all the while very much doubting my ability to send it out to the whole world.

As I read up on the problem, I see the nhs suggesting that often they will leave the issue if it’s not severe. This upsets me as I wonder what their levels of severity are?  Right now this is all I can think about. It always feels like there’s something in my vagina, it’s painful in my groin, I spend my evenings with a hot water bottle inbetween my legs!! I also can’t use the toilet very well, having a Jpouch means that on a good day, I poo 5 or 6 times and I currently have pouchitis so I’m going a lot more and I’m feeling very poorly.  So this added problem is firstly making me too scared to go and secondly taking so much time.

I don’t want more surgery. I’ve had 3 in 2 years! But I also don’t want to have this become my life.  I’m developing this intense fear of anything to do with inside my knickers!  The idea of using the toilet is too much to bear, so anything else is just a million miles away.

The thing that makes me want to share this post is that I have learnt that it is a complication that many women are dealing with, some due to IBD and the Jpouch and others due to childbirth, illness, cancer etc and I’m fairly confident many of them feel this embarrassment and shame that I’m experiencing.  So maybe I need to be brave for them in the way I stood up and was brave for those with IBD?

I’ve seen my consultant and I’m back on Tuesday for him to do a scope in my pouch and he’ll also see what’s going on in the front too. So hopefully will have more answers soon.

Till then I am trying to freeze and shrink that swirling vortex of doom that is this mental black hole. Trying to paste on a smile, get through each day and not let this sadness take hold.

X

27 replies
  1. Steve Faulkner
    Steve Faulkner says:

    Sam this is an amazing post as these barriers need to be broken down. It’s people like you that help us move forward and progress past these pointless ‘rules’ we find ourselves feeling the need to follow. Thanks for being in the arena and being so real. You’re and inspiration x

    Reply
  2. Jennie Carter
    Jennie Carter says:

    You poor thing, you really have had enough to deal with. Get it sorted as soon as possible. I’d say that if you’re in pain, as you are, then it’s bad enough for the NHS to deal with it. xx

    Reply
  3. Sharon Connors
    Sharon Connors says:

    What a great post, well done for giving the unspeakable a voice, wish I was half as brave, hope you get a resolution soon

    Reply
  4. Teaghan
    Teaghan says:

    Sam, you are such a beautiful person. I wish you didn’t have to feel shame about this! How could anyone laugh when you are so genuine and brave for voicing concerns that many would have.

    Reply
  5. Sandra
    Sandra says:

    Sam I am the same. I was recently told I have the start of a prolapse but this was just an a an e doctor who refused to get a gynae to see me and sent me home treating me for a uti 😢

    Reply
  6. Rachel
    Rachel says:

    The biggest, hugest telepathic cuddles I can muster are being sent your way. I hope you start to feel yourself again soon, you’re an inspiring lovely lady xx

    Reply
  7. Linda Bethea
    Linda Bethea says:

    I hope there is help for you. This is a miserable situation. It is courageous of you to discuss it and will makes other women who are dealing with it. They will be relieved that someone has spoken. Good luck.

    Reply
  8. Rinse
    Rinse says:

    Oh darling, I wish I could scoop you up and make it all go away. Yes you have suffered too much already. They were discussing vaginas on womens hour today and someone inevitably phoned in to say “is this a subject we should really be discussing at 10 am?” To which Jane Garvey, just said a resounding “yes”!! Thank you so much for discussing all these unspoken topics. I know you woukd rather be well and not have to talk about them, and I wish that for you too, but we all really and truly admire your fortitude in breaking down the taboos. Its funny because even though I couldnt say either vagina or rectum without cringing, I would still rather discuss my vagina. Poo is still such a major taboo for me ( which i am slowly working on with your help). I only mention that to point out its all a question of degrees for different people. There is some graffiti on the back of the school toilet door (so my daughter tells me) which says sthg like ” let your farts ring out loud and free” I would love to shake whoever wrote that by the hand because that is such a positive message to eliminate embarrassment- especially for girls. Farts are normal, poo is normal and vaginas are normal, etc etc. I long for the day when there is no embarrassment or shaming about any if it, and you are helping us get closer to that day Sam. I wish you well sweetheart x x

    Reply
  9. Dave Pawson
    Dave Pawson says:

    The smile isn’t mandatory Sam? Shit happens, your concerns are genuine and understandable. If the guys in the white coats want to ‘leave it’, turn on the bolshy bugger and ask for someone willing to sort it?
    I’m sure you’ll be smiling again, you’ve beaten all the other shit?

    Reply
  10. Sue
    Sue says:

    Sam
    I am so sorry you are feeling poorly again with yet another ‘undercarriage’ issue. I have read up quite a lot on the issue as I saw a woman on embarrassing bodies with it.
    It is much more common than you think but nobody wants to talk about it.
    As a 50+ woman with the battle scars of 2 kids things have got a bit ‘slack’ shall we say and I worried I might have a prolapse issue but my doc reassured me.
    You are certainly not alone with this. I’m sure you’ll find loads of stuff on chat rooms and forums.
    Do what you need to to be pain free and I hope you feel better soon xx

    Reply
  11. Millymollymandy
    Millymollymandy says:

    I think I know how you feel. I have no anus or rectum any more and talk and laugh about it openly with friends and on my blog. I have told people openly that I have nerve damage to my bladder due to my surgery and I’m not phased or embarassed after having had a catheter and a camera shoved up there, legs akimbo. But what I haven’t talked about openly, and still feel embarassed talking to doctors about, is atrophic vaginitis, which can be caused just by the menopause but also from radiotherapy. I can’t even get a finger comfortably up my fanny! So sex is out, that kind anyway. But now I’ve just said it in public!! and I have done so because you have been so brave talking about your prolapse. These things are thought of as old ladies’ problems (and I can’t think of myself as an old lady at 54) aren’t they? I really hope you can get medical treatment and are not left to have to put up with it, that is just ridiculous. Be brave, and thank you for sharing. xx
    P.S. I’m hovering over the Post Comment button wondering whether to go for it….. 🙂

    Reply
  12. Jenny warmington
    Jenny warmington says:

    Sam I’m so sorry you’re having such a tough time, you don’t deserve it and it’s simply not fair. I feel like we have traveled a journey together as I had emergency surgery in July 2013 resulting in a stoma. You helped me more than you know through the hardest time in my life and you continue to inspire me and countless others.
    This is shit. Total and utter, Pure and simple but you can do this. you are a WARRIOR and you are stronger than you know. You have a loving husband and a family that loves you. Take each day at a time and if you need surgery you will face it like the warrior you are and you will get through it.
    I’m on aw of your blog it is such a brave thing that you are doing but let it help you too, it’s out there now the secret that you were keeping that formed a dark cloud over your life. use it to give you strength from the comments and love from the people that read your blog and can relate to your situation. You are an inspiration and I offer my love support and healing thoughts. Xx

    Reply
  13. Bec
    Bec says:

    Hi Sam. First up, I’d just like to commend you on your courage and general awesomeness for speaking up about such a difficult issue. Your blog is so perfectly named because you are the epitome of bad ass, yes even when you’re feeling like rubbish, your humour and radness shines through. You’ve been such a great role model for me this last year or so and you do such important work for people with invisible disabilities and for women. It’s beyond awful that you’ve had this set back, and fuck it, it’s totally not fair that it’s happening to you, after everything you have been through. I really hope you can get treatment and care from your doctor/team ASAP. I’m sending love and well wishes to you and I hope you start feeling better soon.

    Reply
  14. Alice
    Alice says:

    Oh, Sam! I struggled with the J-pouch more than I did with the UC before the crohns showed up. I was supposed to be such a good candidate for the anastimosis until I developed a rectal-vaginal fistula. Something I’ve not said much about, so I can identify with your reluctance to talk about this. My only saving grace was that I had been through a hysterectomy at age 38 due to severe endometriosis, and had no prolapse of that sort. When the fistula showed up, I had no idea such a thing could exist and it scared the living crap out of me. (No actual pun intended.) I rushed to the gynocologist because I couldn’t figure out what could be coming out of me that looked like that a good decade or so after a hysterectomy. I was sent straight to surgery; no messing about with this.

    I truly hope your doctors will sort this out right away. Yes, it’s scary, painful, and downright awful. I am also here to tell you that even though my solution was a permanent ileostomy, your mileage will vary since you are much younger than I. My life is so very much better, and I’ve not had a return of fistulas since the permanent ostomy. Many positive thoughts your way, and I want you to know how much I admire your strength in dealing with this catastrophic disease. You are a champion, the Joan of Arc against IBD and related problems. I am with you in spirit during this really tough spot.

    Reply
  15. Sophie
    Sophie says:

    Sam I have so much respect and admiration for you. You are a courageous, awesome lady and I’m so glad that you posted today! Being brave all the time and putting on a mask of ‘everything is fine’ is really tough. Especially when things are terrible! Thanks for your honesty. Now let us (your readers) be the brave ones, and lift you up in your sad/difficult times, as you have done for us with your blog. Please remember how wonderful you are to so many people.

    Reply
  16. Suzanne Wheeler (Sue)
    Suzanne Wheeler (Sue) says:

    Hi Sam

    I’m so sorry you are going through this. I hope you feel better soon and your consultant can help as I am really feeling for you both mentally and physically. I myself have suffered since rectal cancer and trips to the loo and almost have developed a fear of the loo. Not knowing every day how I am going to feel or will I need the loo and I have gone 4 weeks not leaving home only to visit my GP today to find out I have high blood pressure. I know all this isn’t as bad as what you are going through and please don’t feel embarrassed talking about it as you are a wonderful women who has bought so much hope to people like me showing them that they are not alone. If this proplem is bringing you such discomfort I am sure that something can be done to help so hang in there please. Love Sue xx

    Reply
  17. Candice
    Candice says:

    As someone who suffered very recently through vjj cancer, radiation, chemo and surgery, I know all too well the horror you are feeling. I too laughed a little too off, Spoke a little too loudly, had a little too much flip in my flippant because anything was better other than admitting the sheer horror of my inner terror. Treatment ceased nearly a year ago and I still go for monthly vjj probing. I used a cylinder every day that’s cold, clinically hard plastic, designed to stop my insides sticking together. The radiation has given me IBS and has fried parts of my bowels and colon. I bleed from my bottom every time i poo and my poos are either “holy shit out of nowhere explosions” or long, drawn out boats of horrible, bloated, cramping constipation where I swell up two sizes and look pregnant.

    And yet all along; the hardest thing? The horror of it all. Why? Why are we so ashamed of our vjj? Our amazingly designed, all powerful vjj! I truly don’t know,! But what I do know is talking helps! Talking shines a light in the darkness and sends some of the creepiest creepies, crawling. I still feel ashamed, I still can’t quite deal with all that’s happened or what may come, but the harsh brutality of this horror is now less of a drowning roar as opposed to a mewling meow. It gets easier, you become braver, stronger, yet weaker and more scared. Older women were such a godsend to me (I’m only 31). All their stories of menopause and birthing and everything in between really made me smile. Seek women who know what you are going through, who have gone through it, who have mentally processed it enough so that their scars now shine pearly white instead of the raw fleshy pink so significant to new trauma.

    All my love to you. This should send you my email address if you feel like chatting more xxoo

    Reply
  18. Donald
    Donald says:

    There is some subject that feels more embarrassing to talk about . I I feel very fortunate to have met you and having someone that is really honest talking about obviously some of the most intimate and personal things .
    Myself being a male I can tell you because of the gas pressure inside my guts bloating I often get extreme pain in my testicule not something I usually don’t care to share but you give me inspiration that nothing is taboo anymore thanks . XX

    Reply
  19. Tig
    Tig says:

    Wow Sam, how much more eh? Thank you for sharing, that was brave. I wish you the best possible outcome – no I don;t don’t – I wish you an even better “impossible” outcome. They happen sometimes. You deserve a break! Love Tig xxx

    Reply
  20. Dolores
    Dolores says:

    I felt exactly the same last year Sam. I had both types of prolapse – from the bowel and the bladder. I was referred fairly quickly to a gynaecologist (who was wonderful) and she said I didn’t need surgery even though it felt as though my vagina was going to come out when I went to the loo. As this was sometimes 10 times a day it felt really traumatic, as you rightly say. I felt so very low at this point and completely understand how you feel.

    A year down the line after religiously doing pelvic floor exercises my prolapse has improved loads. They made a massive difference within a few days in fact. They’ve also improved my sex life as after my j pouch surgery I had very little feeling in that area which was devastating. When I asked my surgeon if the operation could affect your sex life he refused to answer!

    Hope you don’t need surgery and if you do that all returns to normal asap.

    Best wishes,

    D

    Reply
  21. Elaine
    Elaine says:

    Helllo sam, I was sitting in a waiting room reading your blog waiting for my jillionth unproductive appointment with a colo-rectal surgeon who has no idea why I have daily life destroying pelvic pain. It was supposed to be “fixed” by an ileostomy but long story short it wasn’t. I’m so sorry you’re suffering and can only hope your physicians are smarter and more compassionate than mine. I have Crohn’s refractory to all known treatment so naturally doctors tend to be most unkind. I’m writing you from the USA. Our healthcare system is mean and getting meaner. Though they are committed to blaming the patient (esp. women) for every horrible detail that is IBD I just know there’s someone out there who can fix what really sounds like a structural problem. I hope we find that person soon and send you every good wish. Nothing to be ashamed of. Its they who should be ashamed.

    Reply

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