Surgery: Endo or something else?

TW: I get real about periods, pain, hospitals and gynae stuff. Stay safe.

 

 

So I (26) basically am just here to tell you what has been happening.

So on Friday, we went to the medical appointment. Nineteen was her usual badass self and took us into the appointment, braved the waiting room and then the actual appointment.

She went in, sat down, and the doctor practically started asking questions as she sat down! He asked her whether she had pain all the time, where it was, if it hurt to have sex… She answered everything in her usual nineteen way, a little bit flippant but truthfully. She let him know when the pain started and that she had been having problems with awful pain and bleeding for most of her life.

He was calm and just got on with the facts. He asked her if she had had any children. We don’t count the miscarriage as having a child, because she was never born, so she said no. He also asked her if he could do an internal examination but she said no, on behalf of all of us, cause we do that thing where we agree to it them freak out later. She decided it was better to keep us safe.

He was fine with that and then basically told us we were going to have a laparoscopy. I absolutely melted. I was so incredibly relieved! Nineteen kept her head and asked various questions, such as whether not having an internal exam now would cause problems and what would happen. The doctor explained that he could do th exam whilst we were under anaesthetic (a huge relief!) and that he would check to see what was wrong.

He thought it was probably one of three things- one, a chronic appendix, two, a twisted ovary (they can untwist it during surgery but if it’s dead, it has to go) or endometriosis.

Today, I rang the Endometriosis UK helpline to ask them some of my questions, such as will the heart stuff stop us from getting surgery? The lady on the helpline didn’t think so, but she did think that I should ask the hospital that. She reassured me that an anaesthetic is actually a fairly pleasant experience, and isn’t as scary as we thought. One minute you’re talking to someone, the next, you’re awake and in a different room. She explained that there might be some pain in our shoulder blades from the gas, and that they will write a report on their findings. I was encouraged to get a copy of that report- apparently it’s a right and we should be able to get copies of whatever we request fairly easily.

All that remains now is to stay calm and wait for the surgery. I have a list of things to ask but I’m pleased that we will finally have answers.

Massive thanks are due to the Dutchman, lovely as always, and to the friends and family who always keep us floating. Puppy, too, has been lovely. I also want to thank everyone who keeps on reading, commenting or liking the posts I upload- you guys are amazing.

 

The consultant thinks it’s endometriosis. Yet another huge diagnosis that may or may not be right. However, in my personal experience, I’ve been right about PTSD, DID and Bipolar. I was right about my back not being fully better, right about the scar tissue there and right about needing further physio to fix it. I kind of hope in one way that I’m wrong this time, but I don’t think I am.

 

At any rate, here’s to answers after fifteen long years of awful periods, baffling times where there was pain but no bleeding, difficulty in having sex and, since May, non-stop pain. It will be a relief to know what the problem is.

Mental health assessment time again.

Right now, I’m waiting for a mental health assessment. London has chosen to be kind and offer me help here, so I am seizing it with both hands. I’ve had quite a nervous time getting here and I’m shattered from lack of sleep and battling through the wind and rain.

I want to ask them to fix me. Let’s hope they get the message- my personality has not caused my abuse. My abuse caused bad reactions to life. I will be telling them that.

Wish me luck folks. I have to sit in a room with two men and talk about my assault. This could be a huge trigger.

BPD/EUPD, Depression, trust and raw skin.

I had a conversation with my lovely friend Y last night. She was worried about her BPD diagnosis, and she said to me that she fits the criteria and that she didn’t understand why I am so against the diagnosis of BPD/EUPD.

Because I love her, and I want her (and you all) to understand, I am going to try and explain further.

-I have a problem with one of the descriptive words of BPD/EUPD – the PERSONALITY part. I don’t believe for a second that life experiences can alter your personality, or that anyone is born with a flawed personality, like the diagnosis seems to suggest. It essentially says to women, “Hey, guess what, because your personality is disordered, you are to blame for every bad thing that has happened to you,”. That isn’t unlike a certain psychopathic ex boyfriend I once had- he told me the same thing a lot. I think it is cruel for a psychiatrist to tell someone that, because they psych in question is now taking the part of my abusive ex and telling you you are to blame. In reality, you are not. BAD PEOPLE did this to you. They have hurt you and damaged you- BUT they have NOT damaged your personality, just your REACTIONS to other people and to the way they behave.

Let me explain the difference between PERSONALITY and REACTIONS. Your personality is, to me at least, what makes you YOU. It is responsible for whether you like the colour green or blue best. It is responsible for that wrench in your stomach when you have to see a friend in pain. It dictates what music you enjoy, what art pleases you best, how outgoing or shy or funny you are. It is, I think, a constant. Personally speaking, I have been told I’m warm, funny and friendly by people I know and people I have only just met. I love the colours red, black and silver. Sunsets are my favourite time of the day. I love really cold autumn mornings. I like laughing at twists of words and stupid animals. I enjoy sitting with good friends, maybe not saying anything, but just chilling and watching a film or something. That, to me, is WHO I AM. My PERSONALITY.

It is SO MUCH MORE than your reactions.

REACTIONS are how you are trained by your life to react to things that happen to you. For example, I had an abusive ex-boyfriend. He raped me. He called me worthless. He made me feel about a centimetre tall. So, when someone speaks or acts in the same way as he did, I become wary, hyper-vigilant, frightened and angry. Angry because he still has the power to affect me this way.

So imagine that as a small child, I was often ill, and I wasn’t able to join in with making friends and having fun with other children. Imagine I was homeschooled maybe, trapped in the house without the companionship of other children. Perhaps I just happened to live a life where my parents were so busy working that I barely ever saw them, and as a result had a stream of nannies. Wouldn’t that make you ‘frantically avoid abandonment, whether real or imagined’, in your everyday relationships as an adult? That is A REACTION to your past. It is because you never learned to trust, and you were so betrayed by the people who were supposed to teach you that. If you were sick, IT WAS NOT YOUR FAULT. How could you expect to learn to trust when you were trapped indoors? Now you have grown up, how can you be expected to trust anyone? You were never sure of it as a child.

The good news about that side of things, I think is that REACTIONS are LEARNED BEHAVIOUR. We learned, as small children, that trust didn’t exist, so we learned to rely on ourselves. That small child inside still wants to trust. He or She is aching for a simple trust-based relationship, and He or She can still have that. You learned not to trust, so you can unlearn that.

I think another problem here is that now, you have been hurt so many times, you feel like a creature without skin- a little stripped rabbit, bloodied and naked and frightened. You feel desperate and snappy because it HURTS so much to trust. I think that also, people are born like this- not snappy and frightened, but with the ability to FEEL emotion really intensely. I know I feel love, hate, fear, joy, nervousness etc much much more strongly than a lot of my friends. I get worried about things they don’t, because they grew their fur more thickly than I did. They don’t contend with the same damage as I do because they are not exposed to emotion with naked raw skin.

The next part of this is this: how do you learn to trust again with such a hurtful past and such raw skin?

It isn’t easy, I assure you, but I will try and find out more to add to my own insights.

I have decided that I over-think my relationships. I try too hard to second guess because I want to please the other person so badly. This is probably true for other people diagnosed with EUPD/BPD. My current line of thought on the matter is this: DON’T! Give yourself a break. Other people are probably not thinking about what you just said in the same way that you are. They are probably not even concerned with it! Take a step back, mentally, and take some deep breaths. Tell yourself that other people actually like you. Let yourself just accept the comment or conversation for what it is, and try not to shred it apart looking for the hint that the other person is using you or is going to hurt you. Most people in the world are good, and want to form a relationship with you based on trust. If they get it a little wrong sometimes, it is because they are human, like you. If they are worth trusting, they will see that too, and they will most likely let you know when they have slipped up. The healing part of learning that someone is worth trusting is so fantastic- it’s how I have re-built my relationship with my parents when the ex tried to destroy it. I won, and I trusted. It isn’t easy, and I still have issues, but you can do it too.

Start small. Tell a person you want to trust a small, true thing about you. See if they react well. They probably will. Try again, maybe when you feel ready, with something a little bigger. Build it up that way.

Another thing to bear in mind is the way you have been CONDITIONED to react, whether it was by someone abusive or by a lonely past. You are most likely going to try and cling on to affection in any form, regardless of whether it hurts you. That isn’t trust, nor is it affection. It is damaging you all over again. Something I have done is sit myself down and taken a long, hard look at how it would feel to be abandoned by various people I love in my life. I have gone through in my head the pain that this would involve, and then I have taken myself back out of that dark place, and I have thought of several reasons that this would never happen.

-The people I am close to love me for me. They don’t care about my flaws. They will be there until the end of time. I would literally have to kill puppies to get them to hate me, and I bet even then a couple would stick around and ask me why I did it. This is true for other people too. Trust me. Ask them.

-If, for some reason, someone I am close to abandons me, I have to think about it rationally. Why would they abandon me? It is NOT because I am the most wicked and horrible person around. Maybe they have their own problems to deal with, and they are being selfish. Maybe they have trust issues of their own. Most importantly, though, do you really want to cling onto someone who WOULD just drop you and leave you alone? Where is the trust there? They are not worth it if they didn’t trust you enough to hold onto you. You, and your loves and hates and sense of humour. Your appreciations, your film choices, your hairstyle. Why drop this unique person and wander off? It’s callous, and it doesn’t deserve a second of your time.

 

These are jumbled thoughts, but I hope they help you, Y, and anyone else given this stupid diagnosis. I do not believe for an instant your personality is flawed. I believe your reactions to the outside world are damaged, but that this damage can be repaired by giving yourself a chance to trust.

I’m right here if you want to ask me more. Hopefully I explained myself clearly.

Manipulative? Ugh, please, YOU are the manipulative one, Mr Shrink.

I’m once again researching BPD/EUPD and I am once again filled with disgust about it. It is nothing but an ugly sham.

The website I gleaned the link below from purports to be ‘helpful’ to BPD/EUPD sufferers, and the link is supposed to be to get people to ‘think twice’ about calling someone with BPD/EUPD ‘manipulative’ or ‘demanding’. Unfortunately, it’s worded in such a way that it just reinforces these preconceptions.

Take, for instance, this:

Manipulative

Dictionary definition: “To manage or influence skillfully, esp. in an unfair manner: to manipulate people’s feelings”

This is a very harsh comment to make about someone that is using the best skills they have available. Try to imagine what someone with a personality disorder has gone through, and then think about what extremes you would go to protect yourself. Isn’t it true that life is a fight for survival or would it be seen that way through the eyes of someone with a personality disorder?

Now hold it right there, folks. This is cleverly written. I think I was taken in at first glance- I thought that there was another medical professional out there willing to think. Now I’ve re-read it, that isn’t the case. The words ‘the best skills they have available’ makes out that a BPD/EUPD sufferer is literally incapable of normal interaction at all. Moreover, it’s still saying in a roundabout way that sufferers are actually manipulative. Apparently it’s because ‘we are lacking in skills to function normally’.

I call bullshit on that one.

I have said many times I don’t believe it should be recognised as a disorder, but to actually go as far as to say that one of the ‘symptoms’ of this ‘personality disorder’ is manipulation actually blows my mind. To say that if you have suffered so badly from abuse, the only tool left to you is manipulation is utterly demeaning.

I was raped. I was emotionally and sexually abused. I was laughed at, humiliated publicly, and, to cap it all off, I was manipulated.

Now I’m intimate with the horrors of emotional blackmail, so you would think I might be the least bit capable of recognising it in myself. Guess what, shrink- manipulation is a zero here. I have asked countless friends and family members to tell me if I am, and they have said no, not at all. I haven’t seen its ugly claws in me, and I know I would lose so many friends if I really was manipulative. Bullshit.

So I will keep demanding that this archaic, misogynistic diagnosis is ended. It seems to me the epitome of manipulation for a shrink to convince everyone who knows you that you are a horrible bitch who brought this on yourself for having a “disordered personality”. Isn’t that true manipulation?

It feels to me how I used to feel with the ex- like no-one would believe me, like I was a crazy bitch, a drama queen, and I needed to keep my mouth shut.

All you other BPD/EUPD girls out there, I believe you. You are not this label, and you are not manipulative. This label should not have been given to you, and it should not exist.

Come join me in defiance. It’s a really good feeling.

(PS: Sista, I’m talking to you too. I believe you have PTSD, like me. We’re in this together. x)

Time to shake things up.

I went to my hearing voices group yesterday. One of the topics of conversation that came up was “does schizophrenia exist,” i.e. Should it exist as a diagnosis or not?

It was an intense debate. Several of the members of our group have it as their diagnosis and all have very conflicting beliefs on it. One person is convinced it is a medical label for the disease they suffer. Another says that it is partly the illness, and partly down to other spiritual entities that they hear voices. Yet another believes that they are hearing the spirits of the dead.

I decided I would put my half-penneth’s worth in. I told the group I believed that there is a line I draw in the sand depending on the feelings I experience between seeing ghosts and hallucinations. My ghosts are always calm and non-threatening, whereas the hallucinations terrify me. They have an element of personal threat, and I feel physically vulnerable and often frightened for my own life. I said I felt like by drawing this line, I am able to differentiate a hallucenogenic experience and a supernatural one, and it’s therefore easier to tell when I’m ill.

The group received this well, I think. It made room for everyone’s beliefs and also I hope it will help them draw their own lines in the sand.

Anyway, I was struck by the bold statement of “schizophrenia does not exist.” It made me think. If people diagnosed with the condition are reluctant to believe the veracity of their diagnosis, then what does this say about psychiatry? Moreover, what does this say about BPD/EUPD?

My feelings on the subject are pretty clear- I believe that a lot of women are thrown into the “crazy place” when they are given this diagnosis, simply for not fitting one simple diagnosis/ pissing off their therapist/ being a woman with bad life experiences. We are effectively told that we were to blame for every single last bit of the horrific trauma we suffered, for all the horrible people who hurt us, and for not being a more stable person. I believe that EUPD/BPD should be changed from a personality disorder, and reclassified as a part of PTSD- face it guys, I was abused by my ex and that has caused my problems, NOT the other way round. I think the whole damaging label should be discredited as hogswill- seriously, people used to be burned at the stake for hearing voices, so why persist with this chauvinistic and medieval label?

I went to see one of the psychiatric nurses who help run the group at the end and I told her of my grievances. Brilliantly, she agreed completely with me. She thinks that I’m right, and she is working in the system!! I was so pleased to talk to her on the subject and hear that another person in the mental health profession thinks that this diagnosis is wrong for so many women. She agreed with me that there isn’t enough research done, that the real questions are not answered (such as why in the hell are we not addressing the people causing the abuse? Why are psychiatrists blaming the victim for her problems?) and that she also believes it is a form of PTSD.

Good. That pleases me.

I think it is about time we people diagnosed with this archaic and demeaning “disorder” spoke out. I think it is time for us to stand together, demand PROPER help, and demand to be listened to. We know the insides of our own heads better than anyone, and we know that being listened to, as a normal human being, really helps us.

I think I am going to be raising awareness of this fallacy, and I won’t stop until I have made some serious noise. The medical profession HAS to start seeing things our way.

(Also, in a completely weird side note, when I went to the doctor recently, I discovered that the psychiatrist wrote “diagnosis unknown” down, despite telling me I had EUPD. What the hell!? Yet another instance of tell your patient one thing and write down another. Lack of bloody transparency. )

I’m here with you, people. Let’s get this started. Time to shake things up.

Success, persistence, and a huge thank you to you all.

Guess who woke up with her boxing gloves on today?

I decided to ring the psychiatrist back and explain how sad and angry I was. Luckily, I got through on the second ring to the consultant’s secretary.

“Hi, I’m just ringing because I’ve recently been to an appointment here and I’ve been thinking about it a lot…”

The secretary was lovely. She listened carefully to my concerns about my diagnosis, the time between appointments, and my desire to get an appointment with the psychologist. She was polite and understanding, and immediately took my number so she could talk to the consultant and then ring me back. She asked me if I had been referred to secondary care psychology, and I said that I had. She assured me she would get back to me as soon as she could.

That in itself was pretty good, so I gave myself a tick for being assertive and arguing my corner. I had a nice rest of my day: my dog is really sick now but he is so up for cuddles still, and I managed to get him to eat something today. I talked through the whole situation with my mum, who is of the firm opinion that I just need talk therapy, and she always has been.

I went out with my mum and sister to the dance school my mum owns, and Ive had a great time teaching the children here. They’re bright and hopeful and innocent, and it makes me so happy to teach such uncomplicated souls. I feel protective over them, and as a result I only ever raise my voice to them if they need it. I am determined that in their dancing lives they should feel capable and not knocked down. I want these children to have good self esteem and good self confidence, something which the voices have tried to drive out of me.

I was in the middle of explaining a point of technique when my phone went off. I ran to check what the number was, and was surprised to find that it was listed as private. Hope welled in me- perhaps this was the psychiatrist! I asked my mum to quickly take over for me, and she did so as I left the room to answer the phone.

It was the lovely secretary again. She had talked to the consultant and he had agreed to take over my care. He agreed that it was too long in between appointments to leave me, and I would be sent a letter detailing when I would be seen. Also, she had asked about the progress of the psychology and it turned out that my letter had been dictated today, to be sent on Monday. I should hear back from them within two weeks.

Apparently, if you ask politely but firmly, and insist you need something different, people are inclined to listen.

I am so proud of myself for doing this, and so grateful to all of you here, my parents and sister, and of course J, for all your support, advice, sympathy, encouragement and help. You are truly a crisis team all by yourselves, and I want each one of you who reads my blog to feel proud of yourselves too. Without your backing, I would be so much less than I am today.

The voices are pathetic at the minute. I think they are scared of all of us.

They’d better be.

Diagnosis? Yeah right.

Today was D day. You know, something I had been dreading and looking forward to in equal measure. I have finally had a label slapped on me, and I am SO FUCKING ANGRY right now.

Apparently, I could have ‘Emotionally Unstable Personality Disorder’, which is, yes, you’ve guessed it, Borderline Personality Disorder.

Only, the Psychiatrist failed to tell me I apparently have BPD.

Apparently, ‘the label doesn’t matter, just finding out what works for you matters.’

Right now I am so angry I feel sick. Right now I want to scream. What is the POINT in explaining that I need HELP when all that happens is I am given a generalised diagnosis which is given to a lot of young women who also need HELP? What is the fucking point in telling him my ex RAPED ME, ABUSED ME emotionally and then tried to get me back if he wasn’t prepared to think about how that might fit into the picture?!

I’m so fucking done with this shit. I don’t see him again til March. In that time, hopefully Psychology will be in touch with me and my newly-perscribed antipsychotics will be working. That is, if they will.

I am ready to throw in the fucking towel with the NHS. I would accept this label if I believed it fit me. It fucking doesn’t. I don’t have unstable relationships with my family. I don’t have an eating disorder. I don’t get into physical fights or snap at people uncontrollably. I most CERTAINLY don’t use self-harm to get attention, as SEVERAL clinical websites have tried to tell me. Christ, I am so angry.

I thought the session went well. I thought I was listened to. I thought I was getting somewhere. The fact that he DIDN’T FUCKING TELL ME that EPD IS BPD blows my mind. Clearly I am fucking back to square one.

I wasn’t angry like this an hour ago, but since then I’ve done my research and I am so so angry for not having been listened to AGAIN. That’s what I feel. “Oh, she doesn’t fit happily into one diagnosis so let’s shove her in this box and hope she fits.” AGAIN.

WHEN am I going to get practical HELP for this?!?! J, my mum, my auntie, my dad and sister have all helped me FAR FUCKING MORE than any bloody psych. My friends have helped me. All these amazing people I know have held me when I cried, believed me when I told them about the rape, dried my tears, reassured me, taken me out when I needed it… the list goes on. They have HELPED me PRACTICALLY.

The NHS? I can see now I’m being bullshitted to again. I would be more content to accept this “diagnosis” if any of the mental health professionals actually KNEW what was involved in BPD, instead of taking wild and often derogatory guesses. I think it’s another way of saying to all of us diagnosed with this, “Shut up, you know you’re crazy, and nothing you say is true.”

Well I have had enough of that with my ex, thanks. If I am going to be treated this way by the NHS then there is nothing you can say to me that will change my mind. Screw you. I want out of the system if all that is going to happen is that I am treated as a stupid, silly little girl AGAIN by people who are promising to help me.

There isn’t a word for how I feel right now, but I think BETRAYED is the closest I can get to.

Sorry for all the swearing and the rant, but I am so angry and I have no clue what to do with it.