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Severe OCD and medical procedures.

14 replies

flourella · 28/05/2018 14:39

Hi.

I've been posting a little on the cancer support thread about my upcoming tests on a breast lump, but I don't want to fill their thread with my mental illnesses so thought I'd try here.

I have suffered with extremely severe OCD since I was a child; the focus of it has shifted a few times over the years, but for the last 18 years or so, the main focus has been contamination, especially with regard to things that go into my body. So, food and drink, mainly. I have been lucky enough to not need any interventions for my physical health and have deliberately avoided the dentist (despite having several decaying teeth) and blood tests (despite a lot of symptoms relating to poor diet).

My current situation is that I haven't worked or had any social life for about 15 years and have lived in supported accommodation for people with severe mental illness for about ten years. I have not used crockery, cutlery, cooking utensils or been able to store food or drink in my home for about 12 years, so no hot food or drink in that time. I buy food and drink and consume it straight from the packet without touching it, but only after long-winded and intricate rituals around cleaning the outer packaging and my hands. The rituals are so exhausting that I can only do it every second day; the other half of the days I stay in and limit my activity to try and help me get through the 24 hours or more without food or fluids.

I mean, I could go on about all the ways the OCD restricts me, but this post isn't supposed to be about that!

I have found a lump in my breast and next Monday I will be going to the breast clinic for an ultrasound and likely a mammogram and biopsies. I don't know how I'm going to manage this: touching surfaces that have come into contact with other people is going to be bad enough, but the biopsy needles...I don't think I can do it. Are biopsy needles single-use? What about the syringes and syringe holder/biopsy gun? Will the staff let me see them clean all the surfaces, and the needles being unwrapped from their packaging? I've read that if a core biopsy is needed, they nick the skin with a scalpel: is that single-use, or will it have been used on other patients?

I'd really appreciate it if people with OCD or friend/family of sufferers, or maybe health professionals, could tell me how such tests are done and if the staff will be sympathetic and able to accommodate me by using single-use items and letting me see everything that happens re: cleaning procedures. For further detail, my main fear is contracting vCJD or another prion disease from inadequately cleaned, reusable equipment.

Sorry about the long post. I'd be so grateful if anyone reads it and replies with suggestions on how on earth I'm going to manage this.

OP posts:
flourella · 28/05/2018 18:31

I know my OP was very long and probably quite boring. Sorry to bump, but I have no one at all to talk to in real life.

Does anyone have any experience of dealing with unwanted, potentially risky situations when their life is utterly governed by OCD and strict routine, especially around contamination fears?

OP posts:
NothingElse · 01/06/2018 18:25

Bump

Sorry I don't know anything to answer any of your questions. Is there someone supporting you where you live who would be able to go with you to the appointment? It sounds like a really difficult thing for you, I'd hope the health professionals would do everything to support you to access treatment, I hope it goes well.

Wolfiefan · 01/06/2018 18:28

I'm so sorry you are facing this.
Why "likely" a biopsy? I had the all clear just from the ultrasound.
When I've had single use equipment used it had always been unwrapped right in front of me. They won't sterilise stuff in front of you.
I hope you are having treatment for the OCD issues.

LapinR0se · 01/06/2018 18:33

Flourella it sounds so very exhausting. I’m sorry that OCD has such a grip on you, it is relentless.
I wonder if someone in your supported accommodation could call ahead to the clinic or hospital, or maybe accompany you there? It might be helpful to have someone you know and trust to support you through it.

flourella · 01/06/2018 19:23

Gosh, I can't believe people have found this thread from days ago! Thank you for bumping it NothingElse!

Wolfiefan I don't want them to sterilise anything in front of me; I trust that if they are single-use, they will arrive sterile. I just need to see any needles unwrapped and stuck straight into me without touching anything else! I asked my GP what tests they would do and she suggested I should be prepared for all three because the lump is very solid(?) Does that make it trickier to ascertain what it is? I know ultrasound easily identifies fluid-filled lumps.

LapinR0se my support worker is more concerned with "maintaining the tenancy" and offering support around benefits, than even my mental health issues. This is not in their remit, unfortunately. My GP attached a note to the referral and I'm hoping whoever I see will allow me a chance to discuss things before they get started.

My OCD is really difficult and it has only become more complex and restricting over the years despite repeated long-term stints of CBT etc. I am currently on the waiting list for a specialist OCD ward in London, and am hoping something will happen with that this year.

Thank you all again for responding, it means a lot.

OP posts:
LapinR0se · 01/06/2018 20:06

Oh if you could into a specialist ward that would be amazing. Fingers crossed for you.
Now that you know when and where the appointment is, you could call them up and tell them you have diagnosed OCD and ask them whatever specific questions are on your mind.
There’s not much point other people telling you their experiences in case the protocol
differs slightly which might make you anxious.

Wolfiefan · 01/06/2018 20:23

I have lumpy boobs. My lumps aren't fluid filled but were cleared of being anything horrid just by ultrasound. Hopefully your GP is just preparing you for the worst likely testing situation (if that makes sense) rather than the most likely.
Sorry if I wasn't clear. (I'm often not!) in my experience (recent skin biopsy) the single use stuff was opened right in front of me and I saw exactly what they did with it. I wasn't trying to be awkward about the reusable stuff. Just trying to prepare you for what may and may not happen.
I can't even imagine how awful it is having OCD to that extent. I have some OCD traits (if that's the word) that go with my anxiety. I'm lucky it doesn't control my life. It's scary.
I am really really hoping that specialist referral comes through ASAP. If anyone is in a situation of needing such help it sounds like you do.
Good luck. Really hoping for good result for you. Flowers

flourella · 01/06/2018 21:28

It's good to know that ultrasounds alone can be enough to confirm that even solid lumps are benign. I think I will be all right if that is the only thing they need to do, so here's hoping. I've left it too late to call in advance, so if I need a biopsy I'll just have to do my best to explain my problems on the day. I knew no one was going to be able to tell me if things were definitely going to be single-use or not. I think I just wanted to describe my fear and have someone acknowledge it, so thank you again.

I feel really lucky to be on the waiting list for the hospital ward; they don't have a lot of beds and there's only a handful of similar places to service the whole country.

OP posts:
LapinR0se · 01/06/2018 21:37

PS I wish you the very best for your biopsy

Wolfiefan · 01/06/2018 22:11

But you deserve the help. I really hope you get it.
Here's hoping it's a quick ultrasound and no more. Good luck.

flourella · 05/06/2018 19:18

Just an update on my appointment, in case anyone is interested. It turned out to be fine. I didn't really enjoy any of it, but who would? In terms of my OCD, it was manageable.

I had an examination, mammogram and ultrasound. All the staff were very kind and understanding of my fear of contamination, and let me see surfaces being cleaned, hands washed, new gloves donned, etc.

Best of all, I didn't need a biopsy because the ultrasound clearly showed that the lump is just a fluid-filled cyst. They offered to drain it with a needle, but I wimped out of that. I'm just going to leave it.

Thanks again to the people who responded the other day with supportive comments Smile

OP posts:
Wolfiefan · 05/06/2018 19:50

That's awesome! Well done you. That's fantastic news.

SparklySeashell · 05/06/2018 19:55

Oh well done OP, I've just come across this thread and it sounds like you've done brilliantly Thanks

dinomum13 · 05/06/2018 20:08

Hi I'm glad things were ok and well done for being so brave. My father has OCD so I grew up with it and can sympathise with what you have to go through each day. If you haven't already please discuss going on beta blockers (propanalol etc) with your GP. Nearly all your symptoms are caused by excess adrenalin and this can block it. I'm not a doctor but have seen the benefits myself. I hope this helps.

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