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NOT SURE WHAT TO DO

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NOT SURE WHAT TO DO

Postby TROJAN WARRIOR » Thu Aug 25, 2016 9:53 pm

I've never posted in this section,before, as I've never had cause to, but a phone call I had from a counselling service that I was hoping to be referred to for a personal problem I have been struggling with since May, and only opened up to District Nurses a month ago, have given me cause to pose a question.

Brief outline of problem: Am Transgendered, and only have had top half and hysterectomy done, and the rest seems to be impossible as I'm paralysed from the waist down. I currently have sores on my privates(female)the rest of me outwardly is male, I have a daily district nurse who comes in and dresses the sores(one is more of a cavity at about 3cm deep, and this has been going on everyday for four months.) It has screwed me up mentally and now I need help with the psychological impact this is having on me, and all avenues seem to be closed unless I cough up money.

The woman on this phone call today, I would have to be at risk of harming myself or others before I could get help. I've only ever abused alcohol to cope with problems like this. I've never self harmed in any other way. My question is, do you really have to harm yourself or others before you get constructive help? I'm from England and at the mercy of the NHS.
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Re: NOT SURE WHAT TO DO

Postby smurf » Sat Aug 27, 2016 7:59 pm

Hi TW.

Things sound pretty crap for you just now. May I ask what it is about the wound that is distressing you? Or is it more about still being 'female' there? Sorry I don't mean to pry, I'm just trying to understand.

To be told you must be at risk to yourself or others is disgraceful. I am aware most mental health services in the UK are over stretched and have had many cut backs, but I'm also aware there are several charities who offer talking therapies. Have a look at your local resources and maybe in the county you live in. Have you talked to your GP? They sometimes have counsellors who work from the surgery.

You could always try to work the system to you advantage if all else fails.

Try to stay positive.

Hugs if ok
The End!
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Re: NOT SURE WHAT TO DO

Postby TROJAN WARRIOR » Sat Aug 27, 2016 8:55 pm

Hi Smurf,

I really appreciate your response to my initial enquiry, it showed me someone cares enough to respond.

My hang up is that despite having had my chest done and my hysterecctomy done some years ago(2001 - 2004)I will never have the lower body surgery done as the doctors keep saying "You need a healthy blood supply below the waist for any surgery to create a phallus to survive, and with yours being so poor, a phallus would only last a week". They said they could give me artificial testicals in my vulva, but to my brain that was an insult. I opted to do without, and have up until the past five months had a coping mechanism where I imagine I have the correct tackle, but that only works when I have my clothes on.

Now, since I've had these sores down below, my coping mechanism has vanished. I get stomach spasms when I know that the nurses are coming, and when they touch me down there I kind of freak out and it is painful in certain areas. Painkillers dont work. The Diazapam that my GP prescribed for the stomach muscles spasms don't helpvery much.

As for what this has done to me psychologically. It has screwed me up completely. I feel dirty as showering is almost impossible down there, even washing or using baby wipes is uncomfortable. The daily dressing leaves a mental scar every day, to the point I have to go out somewhere straight after to try and get my mind off it, It never actually seems to work though. I started getting smashed on cider every night and am still doing that, but what I'm also struggling with, is that I have now been referred to a Dermatologist in October, and I'm trying to get things sorted to get my head sorted, and this woman who my GP arranged for me to see basically said "unless you are thinking of harming yourself or others, we can't really help".

I have this urge to run away(ironic when I can't even walk - no sympathy please, it's a birth condition)from any appointments that involve below the waist, but my logical self says, this needs to be dealt with. I've always had this rule that people can look but not touch, but things have now got to the point where they have to touch and that freaks me out.

I was seeing a Gynaecologist recently as his initial gut reaction was vulval cancer, and I had to have 2 seperate groups of biopsies from down there, and the first was inconclusive. The second lot came back clear, but that didn't make me feel elated as it should have as it meant months more of doing daily dressings, also I felt like I'd been grated down there.

The nurses that come in are all senior level nurses, and understand how hard this is for me, but it doesn't make it easier in my head.

I decided to tell my Mum how I was feeling at the moment, as she had rung up to see how I was. I could have lied and said I was fine, but I told her the truth, and her answer to that to give me a self help book on Cognitive Behavioural Therapy. She accepts my transition, but she can't deal with my negative attitude and current low mood. She sees the positive in everything.

Just wanted to add that Snaga has been a great support, but I wanted to find out whether the self harm info I'd been told by this woman held any truth.
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Re: NOT SURE WHAT TO DO

Postby realityhere » Sat Aug 27, 2016 10:39 pm

Hi TROJAN,

I realize that NHS services are not very helpful, but the staffer's telling you that getting prioritized as a suicidal mental case in order to get both treatment and psychological counseling for a physical condition just sounds, well, unethical? I can understand how physical pain can drive a person "crazy" and up a wall, heh, but that remark is pretty extreme. Go kill yourself and maybe it's too late to get treatment for what is a temporary problem? Dunno what's up with that kind of bureaucracy.

Has the Gyne doctor checked for Bartolin's gland cysts? Not a doctor here but I'm just taking some guesses. The gland itself becomes infected by bacteria and swells up with fluid and creates a cyst to handle the excess fluid building up. The cyst pressure causes extremely painful and sensitive tissue, as well as muscle pain. Painkillers do nothing for this condition. If the swelling doesn't break thru the skin and drain, the Gyne can lance the cyst so that it can drain and the pressure goes down to alleviate the pain and soreness.

Another guess is that the sores may very well be something else, like fistulas, a more common condition in both men and women. This condition is more for a GI doctor to treat and a fistula often requires surgery. Another guess is bedsores, which should be gently treated and requires frequent rotation of body positions to take pressure off the sores. Again, just guesses here, but it's surprising how some doctors with all their training overlook or don't know about some conditions.

I realize that you may have no desire to discuss what are causing the sores, but is it possible to get a second doctor's opinion there? I'm in US, so I don't know what the protocol would be for something like that.

Is it possible for your mum to help pay for another doctor visit and any subsequent treatment of the sores? Smurf's suggestion about checking into charities is a good one-- are there any specifically geared to the LBGT community? Hope you find some kind of help soon.
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Re: NOT SURE WHAT TO DO

Postby TROJAN WARRIOR » Sat Aug 27, 2016 11:05 pm

The Gynaecologist was 92 per cent that when he first looked, that he thought it was cancer, so that
was the line that was followed. They then thought it might be pressure sores, because I spend a large percentage of the day sitting. and I sit more forward than upright. Now the GP wants a skin specialist to look, and I am dreading it.

The sores themselves just look like normal pressure sores where a hole has been worn in the skin and created like a crater and the one on the left is the worst one was 5cm deep but is now 3cm deep. The nurses are packingthat hole with some wort of dressing but the edge of mt vulva on the left is very tender to the touch and they(or I)have to move that out of the way to get at the 3cm crater. Also. what seems to have happened is that 2 sores have tunnelled through to each other.

The dressing never stays on all the day, and the only way I can sleep at night is to get smashed.

I think my head needs sorting out before my body, as I am really screwed up about this. I've lost the confidence to be the people I felt I was before all this started, I'm crying a lot of the time, I'm using alcohol to shut my head off, and the few friends I have doon't know what to say.

I've been keeping things about this away from my Mum, but told her yesterday, and all she did was say " you need to change your thinking from negative to thinking positively" and gave me a book to read on Cognitive Behavioural Therapy. I hate reading!

I think the District Nurses and GP are hoping the Dermatologist I am seeing in October will have an answer, so unless I skip the country before then, we shall see.
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Re: NOT SURE WHAT TO DO

Postby realityhere » Sun Aug 28, 2016 3:06 am

If these sores are pressure sores, is there any way to get different body positions, as when you're in bed? or to relax more in a position when you're more on your back rather than on your butt? or to get an air-cushion seat in the wheelchair? Try to think of anything that can alleviate the pressure on those sores. My spouse and I are constantly shifting ways regarding his father's pressure sores, so anything that is different from the norm can help. His dad is paralyzed on the left side.
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Re: NOT SURE WHAT TO DO

Postby TROJAN WARRIOR » Sun Aug 28, 2016 9:28 am

I do try to spend two or three hours on the bed, laying on my stomach, as that is my usual sleeping position, so I'm hopefully giving the sores some relief from pressure, but it depends at the moment what mood I'm in also. I've been quite depressed lately, and when my dressing has been done, I like to go out and try and get my mind onto something else.

I tried having my dressing done in my other bredroom recently as I thought taking the negativity away from my bedroom would help me sleep better, as my bedroom is where I have the dressing done each day, and I experience pain, and then I smash my head in with alcohol at night. Trouble is my room has a bed in it which raises and lowers, so it has to be that bed it is done on.

The main problem is keeping the dressing on because, I move from A to be and that causes the dressing to come off, so it never actually stays on for the full duration between visits. That then makes it more painful, and I don't want to waste every day laying on my bed.

My only means of getting around indoors or outdoors is in a powered wheelchair, so I'm only able to lay down to change my position. I do lift myself up off the cushion in the chair(which says it is supposed to be a pressure relieving cushion) but because I had to have my left buttock rotated some years ago, because of a previous large pressure sore caused by a crash diet, so now I lean to the left.

My GP prescribed me some Diazapam as an anti-spasmodic as I was getting stomach spasms when I thought about certain things related to the dressing changes and when I knew the nurse was on her way, but they don't seem to make much difference.

I made the mistake a few days ago. of telling my Mum how I was feeling, and as is typical of my Mum, she gave me a self help book. :roll:
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Re: NOT SURE WHAT TO DO

Postby realityhere » Sun Aug 28, 2016 5:27 pm

I take it that your power wheelchair doesn't have a rocker frame that allows you to sit back, resting more on your back? My FIL has a new power chair that has this capability, but damn these things are really expensive. Is it possible to have an upholstered chair with an automatic remote and footrest that can change positions from sitting to lying straight in the room that doesn't have your bed, so you can get away from the reminders of dressings? Just a suggestion, not that we're much help here on the forum.

Some ppl seem oblivious to what another person's pain really is and not realize what a downer it is to live with pain. My FIL has trouble expressing where he hurts but he can express the degree of it pretty well. He gets deeply depressed when in a lot of pain. That's when we have to start asking him questions about where in his body does he hurt and it sometimes actually requires examining him and doing gentle presses until we hit the sore spot. He's been in a wheelchair for about 15 years now. :(

Hope you find a solution that works for you soon and that you start feeling better.
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Re: NOT SURE WHAT TO DO

Postby TROJAN WARRIOR » Sun Aug 28, 2016 5:46 pm

No the wheelchairs(manual and powered) are usually made so you are sitting upright, or slightly leaning forward. I wouldn.t want to be laying on my back for long periods of time. I rest on the bed at the instructions of the District Nurses(not long got off the bed actually and was there for over 2 hours).

I let the nurses know when they are hurting me, and they usually stop untill I've had a breather and then carry on. There is one nurse though, who likes to think she is against the clock and rushes, and I think she is coming tomorrow or Tuesday, and I am going to say to her "Can you please take a bit more time, and if I say stop for a minute, you stop". She's not as caring as the others. She wants to get in and out as quick as possible. That leaves me feeling overwhelmed.

You're right, only you can know what pain you are in. No-one else can, and I have to sit on that pain a lot of the time. I do lift myself up in the chair a few times a day, but it still gives me grief.

I've had to use a wheelchair most of my life as my legs are totally paralysed from Spina Bifida, so I'm well used to sitting, and having sores from time to time, but it is the nature of where these are that is dragging me down and the fact that they cause me pain, and I can't wash properly as they hurt to touch, and I just feel out of control of everything at the moment.

I need to talk to someone to tell them how screwed up this has made me feel, and ok, I've got the nurses, but they aren't trained counsellors. I'm waiting for a referral to a Psychiatrist but have no idea how long it will take before I get an appointment. I can't talk to Mum, one of my closest friends has cut herself off as she can't handle my misery. Some days I don't want to talk to anyone and then I just come on here.

Fortunately, Mum doesn't know I drink at night, as if she did, she would take that away. I'm 51 and feel like I'm still tied to the apron strings.

I just feel like the help I need to get my head better isn't coming fast enough, and as for the appointments to get my body right, don't even mention them as my head is going to run the other way.
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Re: NOT SURE WHAT TO DO

Postby realityhere » Sun Aug 28, 2016 9:27 pm

i understand that because painkillers don't work too well for pressure sores that you have to resort to self-medicating with alcohol to knock yourself out enough to get some sleep. Be careful not to imbibe when you're on meds though. FIL is on so many meds that he can't take alcohol, as it messes up everything else.

I've seen FIL's bedsores, they're nasty numbers. His usually appear on the buttocks, just where the pelvic haunches meet seat cushion. Besides that, his skin is very thin due to previous steroid treatment, so the sores have be very gently cleaned (like sterile q-tip dipped in sterile solution) and dressed/taped so it won't pull on the skin. Each person has his own scale of pain and what is intolerable and what is tolerable varies from one person to the next. Don't hesitate to tell off a nurse for rushing things.

Unfortunately it's going to have to require getting appointments if you want to feel better physically, it's understandable to dread such times but you don't want those sores to get worse. In the meantime while waiting for a psychologist appointment, have you tried listening to any soothing music you like or meditation tapes to help get your mind off the pain? Any reading list to catch up on? And I don't mean your mum's self-help book. :wink:
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