I put a big post up yesterday about my experience with endo/treatment I've received. But just needed to vent a little more. I have no idea how I am ever going to get out of this and I haven't stopped crying since my hospital appointment yesterday. It's not even the endo, or the treatment, or anything like that but it's the amount of internal examination I've had to have over the last few years it's just completely destroyed me psychologically. I feel like even if I was suddenly miraculously able to have pain-free sex again, I wouldn't be able to let anybody near there without freaking out. I feel angry, violated and almost abused by the system, particularly as yesterday somebody pointed out that as endo sufferers we are entitled to anaesthetic help with stuff like this, I can't believe that doctors just allowed me to cry and scream out and vomit without even mentioning that this is an option. I am so angry about this, I can't even let people touch me anymore, I can't deal with 'touchy feely' people if my fiance even touches my arm everything tenses and I just want to curl up into a ball and not let anybody near me. I can't get my head around how traumatising it feels and I feel sick just thinking about how exposed, undignified and now I know that anaesthetic would have been an option, frankly disrespected. If my doctor doesn't allow me to have smear tests under some form of anaesthetic or drug help, I simply won't have them done. I absolutely 100% would rather risk having a more serious illness than go through anything else and I don't care how ridiculous people think that is. Is there anybody else that has felt this damaged, I don't know where to turn to or who to talk to because nobody really seems to understand and just thinks I'm being dramatic and that just makes me even more angry. It's no wonder that depression/endo go hand in hand, but I simply refuse to go through anything more that makes me feel so utterly violated.
Completely traumatised.: I put a big post... - Endometriosis UK
Completely traumatised.
Hello
I too find examinations extremely painful. I have never heard of being given an anaesthetic unless you have the examination carried out under a general anaesthetic. It's also worthwhile bearing in mind that it won't be the policy of all nhs hospitals to carry out an examination in an outpatients dept using an anaesthetic for a variety of reasons. Pain during an examination is very rarely caused solely because of endo and is also related to overly tight pelvic floor muscles. I'm currently having treatment with a women's physiotherapist at the hospital where I'm treated for endo and adenomyosis. If that doesn't work they can use Botox although this isn't routinely carried out on the nhs and wouldn't be used as a first treatment, although it maybe privately. I've been told my pelvic muscles have become overly tight because of the endo and adeno pain and can also contribute to both pelvic pain and lower back pain. This is something that gynaes overlook when treating endo patients with many blaming everything on endo when a lot of the time pelvic pain is caused by a variety of sources, some if which can be 'easily' treated/controlled.
Maybe you could ask to have your pelvic floor muscles tested by a physio either privately or the nhs to see if this is a problem for you. You could also ask your GP about anaesthetic being used during examinations but I think they might say that many gynae patients generally would qualify for it to be used and not just endo patients, ie patients with IC can find them/sex extremely painful and it's at the discretion on the doctor in the outpatient clinic/hospital policy. You could also ask what other help is available as I know myself I've put off having my smear test because of the pain and I become tense just by thinking about it. Hope that helps x
How do they test pelvic floor muscles? The problem is I am simply not letting anybody else near there. There is no possible way that is going to happen for the forseeable future because I can't deal with the psychological trauma (I actually retched a couple of times while writing the last sentence, it's that bad). If the doctor thinks that's pathetic then I'll be telling him/her where to go lol...I would absolutely definitely rather just take risks with my health at this stage, I think 
V much feeling for you. Apologies if you've already tried what I'm about to say, but for what it's worth:
have no trouble remembering feeling this way.....years of agony from appts.....plus every examination left me with full on agonisingly painful UTIs....one colposcopy left me so injured, I finally insisted on serious help to avoid exam trauma....
ok, my version of this prob was mainly due to DES exposure in utero & infant onset systemic lupus, , but, after those years of pain on exams, what turned things round for me was my gp & gyn referring me to gyn physio who spent months training me in full on pelvic floor exercises (I'd been doing pilates for years & thought that meant I was in good shape, but I'd only just scratched the fitness I could achieve).....and a few years later they referred me again to gyn physio for pulsed shortwave diathermy treatments (PSWD) which also helped enormously but involved a lot of appts....meanwhile the physio organised me to do home-dilator training (my sexlife is active for a 50+ yr old! but due to my DES daughter birth defects+systemic lupus +sjogrens! I needed extra help).
All this has helped so much, that tomorrow, when I have my annual gyn oncology appt, I'll be ultra relaxed & in no pain....but, haha, I will be packing my cefalexin 'just in case' a UTI explodes (haven't had a UTI in years but mine are such a raging nightmare that no way do I go unprepared)....
Anyway, i've heard some take diazepam on the day of examinations...but I couldn't bring myself to try that, and I'd never heard that anaesthetic was on offer!
Take care XO
Thank you! I'll bear this in mind when I think I'm ready to try it. Tbh right now I don't want anyone (or even myself) to have anything whatsoever to do with that part of my body, I'm simply not in a mental state to be able to deal with it. They've put me through so much trauma it has really messed me up psychologically I can't even hear certain words without almost blacking out now. I'm certainly in no rush to bother with smear tests etc though I feel like personally I will be less damaged just to take the risk! Maybe I will in the future though..
It might be worthwhile asking to be referred to a psychosexual counsellor as they deal with these sort of experiences as it does sound as though physio might be an option but until you have help with you fears of painful examinations it might do more harm than good. My gynae did a normal internal examination without the speculum which was too painful although I still experience a lit of pain during and afterwards. I think they can just tell from the muscles and also if they can see the cervix. If they can't because they can't open the speculum enough then I think that's a good indicator of overly tight muscles. I also have the dilators barnclown has mentioned but can only use the smallest size as the moment. I also have IC so examinations are painful because of that as well but antibiotics can't be used as it's not caused by bacteria - going to ask the urology nurse next week when I see her for my gepan therapy. It might be worthwhile looking into IC as well, usually the cytoscopy is done whilst awake and isn't painful it can be carried out under a GA which some hospitals do routinely whilst others have to be asked.
I know you have said you'd rather risk possibly cancers by avoiding examinations but believe me it's a horrible way to die if it's too advanced to treat and treatments with radiotherapy often use internal radiotherapy techniques. I think if you have a chat to your GP, nurse at your surgery you will find there is a lot of help out there. I hate my gps but thankfully I love all my consultants at the hospital which compensates for it x
Thank you - I didn't realise I might qualify for counselling. I think that might be the best approach for the time being. I just feel really aggressive about my own body right now because I've been forced to have so many things done that I've found so upsetting, I just want to be in control, nobody has the right to assume I'll be totally fine with them rootling around in there like a pig in a trough just because they say it's for the greater good and I just need to chill out. I'm in no way going to continue allowing myself to be oppressed, abused and in massive amounts of physical pain simply because they can't bring themselves to understand how traumatising it is. I booked a GP appointment for next week and I'll be telling them they can either do something about it or they will be responsible if I do and up dying horribly because they've scared me off of going! lol..
go girl go: it doesn't take much for me to tap back into feelings like those you're describing.....and i think you've got a good attitude + i like your approach: start with your gp: full frontal frankness! hope you'll let us know how you get on
xo
Thank you, I will do! I already replied to this but then it wanted me to log in again and it seems to have disappeared! So sorry if I have posted twice :S anyway, I've decided that my body belongs to ME and nobody can force me to do anything I don't want to do, because it's obviously having a really negative effect on me. If I'm not comfortable having something done all I have to do is say no and it's up to THEM to accommodate ME without judging me, or they're not doing their job effectively, and I will go to another doctor. I'm reclaiming my body!
Dear "Jaypalf",
I hear you... I REALLY DO! Please do NOT ever think you are alone in this; or that you are making a fuss, depressed, or anything like that... There are others of us who feel pretty much the way that you do. I do NOT think you are being over-dramatic.
I have Endo. I've had four surgeries so far (my Endo is Deep Infiltrating Endo in Utero-Sacral Ligaments, POD, and between bladder and bowel). Depending upon various things; including where your Endo is, the nature and depth of Endo growths, your own pain threshold, whether you also have adhesions, etc.; Endo can be intensely painful. This can mean that sex becomes very painful (Dyspareunia is a symptom of Endo), and internal exams of any kind can be very painful. If you have, for example, Endo growths in the recto-vaginal area, they can cause all sorts of painful sensations when using the loo, having sex, having smears, etc. I think that if you read some of the posts on this Forum, you will see that lots of women suffer from discomfort and pain due to Endo, that affects them in many ways (such as those I have mentioned). You could try a search using the green bar (above) and looking up RECTO-VAGINAL ENDO or DEEP INFILTRATING ENDO to see the kind of problems it causes.
Like I said, I have Deep Infiltrating Endo, and I'm well aware of the pain it can cause. I've had bladder and bowel related symptoms for a number of years (I'm also under a Urologist, and have been backwards and forwards to the Gastro team as well). I absolutely DREAD having smear tests, as I find them extremely painful. Like you, I have NEVER been offered any kind of anaesthesia or local pain killer to help reduce pain when I have to have a smear (or other internal exam). It's not like anyone has even mentioned it as a possibility! I TOTALLY AGREE this makes you feel violated. I mean, HOW can a "medical professional" see you lying there with your eyes watering, wincing, face screwed up in pain, and NOT feel concerned? I even break out in a sweat because of the pain. I had the Mirena coil device inserted in 2008 - without any pain control - AND IT WAS ABSOLUTE AGONY. SO PAINFUL IT MADE ME FEEL SICK! It feels like you are just expected to grit your teeth, and bear it!
Over the years, it DOES fee like you completely lose all your dignity because of having Endo. You have so many tests; get poked and prodded, answer tons of questions (some are VERY intrusive and personal); have to listen to various Doctors' different theories (some of which are wrong!). In my case, I've had to put up with the following:
1. Delayed diagnosis and treatment (2002 - 2011).
2. Misdiagnosis as IBS (KEEPS cropping up!).
3. Misdiagnosis as stress/depression/anxiety (KEEPS cropping up!).
4. Transvaginal ultrasound (2006) - the NHS Hospital appear to have LOST the notes from this!
5. Misdiagnosis as PCOS (2006 right through to 2008) - the NHS Hospital still need to apologize!
6. Lack of treatment (2006 - 2008).
7. Intrusive questions (e.g. asking about my mental health); unfair questions (e.g. asking me to choose between fertility treatment and pain/symptom control); intrusive and possibly unnecessary procedures (e.g. constant weighing and measuring at every appointment - STILL happening!
8. Hysteroscopy with D&C (2008).
9. Colonoscopy with colon biopsy (2008).
10. Painful smear tests, some with borderline abnormality, requiring repeat smears (ONGOING!).
11. Incredibly painful insertion of Mirena coil (2008).
12. Slippage of Mirena coil, leading to flooding, and removal (2009).
13. Internal exams (2006 - ongoing).
14. Laporoscopy x 4 with laser ablation and radical excision of Endo (2011, 2012, 2014).
15. Ureteral stenting during surgery and catheterization post surgery (2012, 2014).
16. Urodynamics tests (2014).
Like a woman WOULDN'T feel VIOLATED after putting up with all of that! My body no longer feels something pleasant to inhabit - I just feel like a textbook study! THIS is the TRUTH of what women with Endo put up with... And that's not even the half of it... You also have to deal with people who think you are lying or faking it; people who think you are "crazy"; people who think you are a hypochondriac. You have to try to cope at work, at study, at home, in your social life - trying never to let people down. You have to learn to deal with insensitive comments, bullying at work, intrusive questions...
Yes! I kind of get where you are coming from. And I definitely think it's anything but "depression" or "making a fuss" - pain is pain, pure and simple.
I totally agree with comments already here - you DO need to have this checked out. Physio may help; so might Counselling (provided that you are offered support from a Physio or Counsellor who is fully trained and specializes in dealing with this sort of thing - the average Physio or Counsellor probably won't have the requisite experience). It looks like a chat with your GP may be a good idea, as you DO need to explain how you feel; it's important that you do NOT feel scared and unable to have smear tests (as they are important for your health).
Maybe you could book a double appointment with your GP to give you time to talk things over? Like I said, I don't think you are fussing - this is important, and needs to be sorted out. Maybe your overall pain control is not as effective as it could be? Maybe there is something else as well as Endo (e.g. adhesions, nerve pain) that is adding to the discomfort and pain you feel when having smears, etc.? Maybe fear of pain is now presenting as a Pobia? These are ALL things to consider, and to look into. There ARE things that may ease the problem for you...
Perhaps a referral to a Chronic Pain Management Service may help? Just a thought. I was under such a service for a while, and it can be helpful. These teams are multidisciplinary, and have various staff including Psychologists, Physios, Pharmacists, Doctors... The staff generally work together, alongside you, to come up with a programme that helps manage your pain. They can review medication (looking at effectiveness, side-effects, etc.); thy can provide physiotherapy; they sometimes do acupuncture, or relaxation therapy; they may offer Counselling. This is one avenue to consider - along with suggestions made by other people who have responded to you...
So, hopefully it is now clear to you that a) YOU RE NOT ALONE OR "ABNORMAL", and b) THERE IS HELP POSSIBLE. Please don't give up, or feel that you have to risk your health by avoiding smear tests. DO talk to your GP about this - and if that GP is unhelpful, ask to get a second opinion. YOUR health is important.
Apologies for the long reply... I just really wanted to try to help, and give as much info as possible. More info on Pain Management Services can be found here
nhs.uk/Livewell/Pain/Pages/...
Best wishes,
Elaine. x
Elaine, thank you so much for such a big reply. I have spent a lot of time on this forum since discovering it a few days ago as it has really helped me to feel less alone in what I am going through - when you've constantly got people telling you you're just being a drama queen you sometimes start to believe it yourself! I will take time to look into all of these things and do some research before my GP appointment next week so that I feel like I can speak as coherently as possible without getting upset. I guess a lot of GPs work so mathmatically and clinically getting through patient after patient it is easy for them to become somewhat desensitised? That's certainly no excuse for not trying though lol...!
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