I don't even know where to start. This is too sensitive for FB but badly need some support....
I was meant to go see the bowel surgeon today and have a sigmoidscopy. After freaking out about the sigmoidoscopy i called the secretary, said I was worried and he agreed via the secretary that I didn't have to have it, on which basis I agreed to show up.
But I was absolutely in a state of panic when I got there as a manual exam was still meant to happen. He was nice but could tell I was not right as I wasnt answering questions. I broke down, he got a nurse and left the room to give me space and I had to confess with my husband there that I was struggling because in my last marriage I was raped in the rear passage and the pain of it was so extremely bad that I was panicking about coping with any procedure there.
He came up with solution of having a GA as he said sedative wouldn't work in my position or winging the potential op with no pre investigation or I could not have op.
I have to decide tomorrow whether to do a (now flexible) sigmoidscopy on Saturday or wait until the new year. Or bail on the whole damn thing.
Home now in state of emotional and physical collapse. Despite needing maximum morphine when I had the lap last week I had refused the anal pain relief suppository. Only today did I put two and two together and work out that its due to the trauma memory of this past incident.
Husband keeps wanting to push on asap all the time but I just don't know any more why I am even putting myself through this just for one (admittedly big ) nodule in the RV septum. Maybe it can just stay there. What's a bit of dyspareunia vs a potential bowel resection??!!
Don't know what to do or how to cope anymore.
Delaying means a month or so of knowing its coming or dilemmaing about whether to do it, or both.
Don't want to let my endo surgeon down but this next step really hasn't been fully talked through; I just got told I had to see the guy and a stern look with words inferring along lines of not having the op isn't an option. Nobody has said what the risk is of doing nothing, it's just assumed the bowel op plan is next. Why can't I just stop now??
Aaaaaaaaaaaaaaaaaaaaaaaah!
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Starry
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Oh gosh that must be so difficult for you - medical procedures are often not very nice but if it's triggering past trauma, that must be very difficult to deal with
It'd be awful for you not to have vital medical treatment that'll improve your well being but it sounds important that it happens at a speed that's comfortable for you without you feeling rushed into it (physical improvement is good obvs but not at detriment to your mental health)- I really am no expert on navigating the system but that may mean a bit of counselling / extra talk throughs with the surgeon etc. Extra pain relief may help but you need your head on board as well. Can you call the secretary again to see what extra support they suggest? And explore a counsellor? I'm sure you'd be eligible on NHS but wait list likely to be very long so you may prefer private if you can afford it. my sister is a hypnotherapist - I've always been a bit of a skeptic but beginning to realise it can be pretty great (the good ones). I'm not really qualified to offer advice but wanted to reply to give a bit of support - I'm really sorry you're having to deal with this all. Good luck xxx
Hug hug. So sorry to hear you had such terrible experience in the past. No wonder you are reluctant with the bowel investigation. It must be difficult to talk about this in the clinic too. May be have it done under GA is the way to go. You would not be aware of the procedure that way.
Could you have another consultation with the endometriosis specialist? If you could let him now the reason why you don't want the operation see what he says regarding future complications? You could email the issue to I'm first so he is prepared.
Your husband obviously wants you well but he may have difficulty understand your experience and trauma. You need to take your time. Maybe next year is better for you so can get over the laparoscopy and more prepared ?
I am not so sure on having the major operation without proper investigation first. It may disadvantage the outcome of the operation.
Ah you poor soul, I think joeytheroo has offered some sound advice. Well done for being so brave and telling them & your husband. That must've been so hard. I think it would be wise to get some counselling there are self referrals to teams that you can access online & you don't can have telephone counselling etc. 'Health in mind' are one group if they're not in your area they may be able to suggest somewhere else. Or you could get a referral through your GP. In the short term, if you can manage to be sedated that may be easier simply because it's over & done with and you don't have the angst that'll build up to anticipating it. Could/would your partner go with you and also a nurse in the room too? My heart breaks for what you have had to endure and the affect it's having in you at present. Be kind to yourself and do what you feel but try not let the past affect your future health...easier said than done I know! Wish you well Xxx
Starry i am sorry you have had to go through this. Please dont worry about letting anyone down, this is only about you, what is right for you and having the right treatment. This is a necessary next stage in your treatment but only you can decide whether its right for you given the trauma you have been through. Whatever you decide we are here to support you x
I am so sorry to hear you've had such a horrible experience
The first thing I want to say is that ALL this surgery is optional. You absolutely do NOT have to go through with it if you don't want to, and the last thing you should be worried about is letting the endo surgeon down. His feelings don't come in to it at all. This surgery is for quality of life, and it's up to you to decide what that is, not the surgeon.
I'm fairly sure you are also still recovering from a traumatic lap (with complications) which also does not put you in a good position to be making decisions about further treatment right now.
If you want to know anything about what the sigmoidoscopy/rectal exam is like I've had both so feel free to ask (if and when you're ready)
Thanks everybody for your lovely supportive messages and helpful advice. I didn't really expect any comments as it's such a horrible topic but needed to vent about it somehow.
The Secretary called me first thing (goodness they're on the ball with everything ) I turned down Saturday flat but have discussed 21st January for the procedure under GA . Now I'm not in immediate threat of having it done it does seem to be the experience I'm phobic of rather than the procedure itself.
I guess I wasn't clear of the purpose. That is if this had been meant to be about assessing if surgery is essential due to risk or that that's a given already and is more plan to op, which was more how it came across.
The weirdest bit was when the surgeon suggested a hysterectomy as i dont need it for fertility so he could get better access to the nodule! I felt like saying back you're right handed, let me amputate your left arm so I can comveniently get past you to open the window better.
When it came to discussing surgery though really rather cavalier with the idea of removing my organs I felt ! Bizarre beyond belief.
Honestly the man was a bit strange, a bit of an extreme personality type I guess. Gifted, braggy, smart for sure, friendly and sympathetic about the whole trauma trigger scenario too. But weird.
Hope you are feeling a bit better now. I think the gynaecologist would not mind if you have another discussion with him on the major operation. After all he get pain £180 for a chat.
I asked the consultant regarding whether the operation is strictly necessary. He said it was an amateur question 🤔and if I don't have the operation I will loose my kidney. I had consultations with five consultants. They are all different and can be a funny lot! Keep asking questions until you got the clear and whole picture.
You poor angel, good for you for being so forward in admitting your fears. I wish I had your gall! I think it's amazing that any of us get up in the morning, let alone face these traumas and fears. I hope I'm not sexist in saying that women tend to be the best to discuss these sorts of things with. I don't think I've met a male doctor/surgeon who helped me with any of this. Good for you though, it's more than venting. It's pouring a little piece of you out for others to see and not being afraid of it. Thank goodness for these safe environments where we can truly be honest and for women like you who can show others that, no matter what we have been through, we are still here. Still fighting. And- even at our weakest- still going strong. xxx
I don't know how much my insurance will stump up to have an extra consult on top of an extra procedure for the sigmoidoscopy as well but I think it would be good to know what the endo surgeon found out or knows about the nodule now he's seen it in situe and his logic. I do rate him, he's conservative, balanced and not a risk taker. Perhaps I just need to play catch up.
When you had your diagnostic lap, the insurance authorisation you obtained would include a follow up consultation too. You could call them to on check on this. I am not sure what your insurance scheme is. Mine was pretty good except only has £1500 allowance for out patient. It only lasted a week in London 😱.
I know EXACTLY how you feel. After years of tummy pain I've recently been diagnosed with endo, stage 4 with multiple polyps, cysts and a mass in the 'Pouch of Douglas' area. Having already had my womb removed (I had constant bleeding but I think it was the closest thing to having my vagina removed to get rid of every bit the rape touched) this mass sits between my rectum and bladder with adhesions to both.
I had never talked about what happened to me. Still can't bring myself to tell people about it but thankfully I don't know anyone on here (I am pretty certain anyway). But things came to a head with my partner earlier this year. My mum came up to try and help us sort things. I nearly died when he told her that we don't have sex. Haven't for a looooooong time. I totally broke down and told them as much as they need to know. It happened. For around six months, most nights, it happened. He stalked me. That's all.
I really think you should go for the sigmoidoscopy. But with a GA. And first a long conversation, preferably with both consultants, about what is happening, why its happening, what comes next and why. You also need to find someone you can talk to about being raped. It's often easier when it's not someone emotionally invested in you. The worst of what was done to you isn't something you will find easy to talk about with those you love.
You should also know that you have done NOTHING wrong. You have NOTHING to be ashamed of. That you have gotten this far is not by chance. It's through sheer grit of getting out of bed every day and putting one foot in front of the other. The medical stuff will pass. The emotional stuff will probably take longer to heal but heal you must.❤️
Please be kind to yourself and do what YOU feel most comfortable with. Make a list of questions you would like answered before your next appointment. Will your condition not get worse if it's left untreated? If so, what would you be advising a good friend to do? Take the advice that you would give to that friend.
Wish I could take my own advice though. It is easier said than done! 😜
Good luck whatever you decide. Please update the post when you have made your choice?
Oh my Gwen, that sounds absolutely terrible and terrifying! My heart goes out to you. I hope you feel safe and loved and are getting all the support you need x x x x
Mine was just a single incident in the context of an emotionally abusive former marriage, around the time his controlling tactics started to stop working on me. I think he was ashamed after and at at the time I gave his excuses the benefit of the doubt, marital rape being rather a grey area. I divorced him a long time ago, am happily remarried since 5 years and had not (consciously) thought anything of it in some years other than to put it out of bounds with hubby. But the memory of that extreme pain obviously lodged fast subconsciously and got triggered.
The replies you've had have made me well up. I am SO glad you've felt able to discuss this trauma with others on here.
This is clearly no where near what you've had to deal with but when I was a child I had surgery three times due to a gynaecological problem. Probably as I was so young and every examination caused so much pain I've been left with an intense fear of Drs doing any examinations in that way. So then in my teens being diagnosed with Endo and being faced with it all again felt like the worst possible thing.
I think the advice that you've been given is really good. You've done amazingly to open up about the rape and its impact. I would certainly try to get another consultation to discuss things. It may help to write it down or email it to the consultant as I know if it were me I wouldn't be able to speak for crying. To me, it really sounds like you need to know what will happen if you decide not to have the sig or surgery in the immediate. If they think it's necessary it needs to happen in your own time so you can cope with it psychologically. I would certainly seek out counselling. As others have said, it's surprising what you can become ok with discussing with someone who is not close. Again, writing things down and handing it to the counsellor was helpful to me for the first session or two while you build up trust in them.
Do keep in touch on here. You need a lot of support with this. As I say my experiences have been nowhere near as horrific but I understand that awful feeling of knowing you have to have procedures done for the benefit of your health but your mind just can not handle it. It's a terrifying situation and feels out of your control but if you can get enough patience, care and empathy from a consultant there will be ways round it.
Big hugs x x x There is no league table of bad things, trauma is trauma. The pain and distress that you've gone through sounds every bit as traumatic to me especially being a child. Not to mention getting this awful horrid disease so young. It's easy to diminish our own feelings but we shouldn't, they are always valid. I am very glad you're getting counseling and support to help you.
Poppy, what Starry said is true. There is no league of bad or worse trauma. What you went through at such a young age, well, it makes me think of my own daughter and how traumatic that would be for her. Just awful. No wonder you were left with the fear of examinations!
And Starry! Look at all of the wonderful advice and counsel you are giving others! Rape is rape. Regardless of how many occurrences there were. It's just an ugly secret we try to keep under wraps and carry on as normal. But we are not the ugly ones here! The men who put us through this are and marital rape is the same, if not worse! It was done by someone you trusted which I feel is worse. At least mine was done by a maniac who was (and I believe still is) out of control.
All you ladies on here, I'm glad we have one another to talk to about the most awful experiences of our lives. Ladies who don't judge us for our confessions and fears. Big love and thanks for support to you all ❤️
Well, it's the 21st January and I survived the sigmoidoscopy just about in one emotional piece!
I started a new job and it was my first full week back in work so ive found it tough going and have been off the scale anxious about it all .But it did at least stop me from focussing on the procedure today too much. In fact I even forgot the blood test appointment for woke up at midnight Wednesday in a panic remembering and had to book a mad taxi dash in my work lunch break to get it done in time.
I didn't sleep well as the nerves kicked in yesterday big time. When I got to the place I suddenly realised that bowel prep (enema) also meant interference in the trauma location for me and panicked. What an idiot for not realising sooner! The nurse initially got cross with me as she didn't realise my delayed responses and frowny face was proper fear paralysis mode. But after hubby was sent from the from I managed to tell her it was a trauma issue for for a particular reason and she got out why and was then lovely. I did break down a bit and she just sat beside me and gave me a hug and reassurance.
The insertion was still distressing and hard to bear emotionally but she did it incredibly swiftly and the worst was then over, the rest was just physically unpleasant.
Mad egomaniac surgeon swung by briefly and had to ask me to remind him what he was meant to be doing. I wonder if he knew and secretly enjoys unsettling patients for fun.
The GA went much more smoothly this time so was a great solution for the rest of the exam. I'd never have coped and gotten through given the distress I had with just the enema experience.
So very very glad it's over!
I was left a photo in a kidney bowl to look at when I woke up, which was bizarre and hubby and I both found quite amusing.
It was good news and I was told when I came round that at least as far as the sigmoidoscopy reaches my bowel came back clear of Endo and most importantly Dave the nodule hasn't infiltrated all the way through the wall lining from the other side, which from the sounds of it may give me more surgical options or better odds of needing less radical options in surgery.
Next step 2 follow ups. One with each surgeon. My friendly talented colorectal sociopath first of course.
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