Autism-friendly gynaecology service - is there such a thing?

I realise this may not be the classiest way to introduce myself, but I could really use some advice.

I'm in my forties, and have a long history of depression. I've long suspected that I may have other issues. Despite my history, I suffered in silence for many years, and only sought help in 2010, and saw my first psychiatrist in 2013. I asked if she thought I could have Asperger's Syndrome, and she was very dismissive. Four years ago, I was diagnosed with ADHD by a different psychiatrist. I asked if he thought I could have Asperger's Syndrome, and he didn't even acknowledge the question. I didn't push it. Because of the manner in which my questions were handled, I never pushed my other suspicion - that I might be suffering some degree of PTSD.

Over the last year or two, I've been suffering gynaecology-related health issues. Last year, I went for minor sugery. I had been told what to expect, and was handling things okay. I knew that I would be seeing a different consultant, but when it was clear that they were not going to follow the agreed plan, I lost it. I felt completely ambushed, and I am still suffering the psychological after effects, and I still have not had the treatment that I need. When I complained, they made up lies about me (complaints process is ongoing, and at least I can absolutely prove some of their lies).

This year, my psychiatrist has come around to the idea that I may be on the autism spectrum. He's given me questionnaires, and phrased my clinic letters in terms of "probable ASD". I'm struggling to access the healthcare that I need. My local hospital is not the one where I had the awful previous experience, but they are struggling to deal with me. I'm the first to admit that I'm a pain in the preverbial backside, but no-one there seems to be capable of taking any initiative to provide extra help to me. The consultant there wrote a letter to my psychiatrist, who wrote back stating something along the lines of "Ms ... thinks she might have ASD, but is aggrieved that no assessment has been carried out". Nothing about the questionnaires, and nothing of the "probably ASD" of the clinic letters, and nothing of the effective "care instructions" that he had put in a letter to my GP. (He'd made a comment along the lines of the need for me to be handled with patience and kindess, or words to that effect). I have repeatedly described symptoms of PTSD, and told several doctors there about the probable ASD. (I have been in for semi-emergency assessment a couple of times, but keep cancelling appointments because I cannot deal with things).

The hospital cannot or will not make an effort to understand the problems I have. They cannot or will not provide any help or support. They cannot or will not make any accomodations.

I really feel as though I've had enough and I don't know what to do. My Hb is down to 58 g/L (again). I need surgery, but they cannot support me, or listen or do anything to ensure that I'm not put in the same position again. The lies that I've been told, and that have been told about me have made it almost impossible for me to trust healthcare professionals. The place where I had the first bad experience knew how much I was struggling with the after effects of what they did. They knew that I was struggling with trust issues because of what they did. So they made up lies about me. I don't know what kind of people could do that? (Registered nurses, apparently...)

Does anyone know if there is any way to access an autism-friendly/PTSD-friendly gynaecology service? Does such a thing exist? Anywhere in England would be considered. (I would include Wales, but I don't know if I could be referred there).

Oh, and I'm female. Just in case you didn't get that from the title. Hi.

Parents
  • This isn’t specific help regarding gynaecology services, however I often find that the NAS ‘autism passport’ helps me to get adjustments and care appropriate given my autism when I am in hospital, no matter which department I am visiting. The link to it is on this page along with some more information about it (though you can create your own more specific to you of course):

    https://www.autism.org.uk/about/health/hospital-passport.aspx

  • Thank you very much for the link. It really does look like a good resource. I can really see that it would help to prevent many potential issues just by making people aware of an individual's sensitivities.

    I think where I'm not considered to have a full diagnosis, it wouldn't feel quite right to hand over one of the passports.  I do have an Advanced Decision that I keep with me. I guess I could print one of the passports off, fill it in and keep it with that.

Reply
  • Thank you very much for the link. It really does look like a good resource. I can really see that it would help to prevent many potential issues just by making people aware of an individual's sensitivities.

    I think where I'm not considered to have a full diagnosis, it wouldn't feel quite right to hand over one of the passports.  I do have an Advanced Decision that I keep with me. I guess I could print one of the passports off, fill it in and keep it with that.

Children
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