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Disorder of development around the midline?

1 reply

gynaeissues · 07/12/2019 22:18

I’ve had gynae issues all my life - labia fusion and hypertrophy as a child, stubborn hymen well into my twenties (still now at 28), vaginismus, PCOS, small misplaced urethra (it opens into vagina wall) and a small bladder (100ml capacity) . Bladder also doesn’t contract much . I’ve had endless appointments, scans, operations and have been told I’ve got a degree of ptsd - I started having Internals at age 8 or so and have been forced before to have speculum etc . I cried yesterday when the GP didn’t force me I was so taken aback .

I’m also dyspraxic, and suspected to be very mildly autistic .

GP says they’re now going to do full genetic screening as they’re concerned I might have a condition of some sort or a syndrome, that could explain all the abnormalities. Gynae has said before it sounds like a disorder of midline development - and that if something goes wrong in development it tends to be your reproductive system/urinary system first.

I do have periods, went through puberty fine and I know I have a womb, cervix, vagina etc but I’m terrified they’re going to come back and tell me something awful . I had a relative with turners syndrome, it doesn’t seem the same at all but I’m worried .

GP and nurses had a look down below yesterday during a smear and said it’s not ‘normal’, there’s something wrong down there and might send back to gynae , I’ve got severe vaginismus and all I can think is, I’m 28, a virgin , and who’d want to have sex with me if I look that weird ... I’m gutted .

I’ve had physio before and tried psychosexual therapy but the latter was with a man, who wanted me to keep a diary of masturbation to then discuss with him ... and I couldn’t cope with that at all . If I could see a woman I’d happily try again but doubt the nhs would offer .

I can’t find anything on google that explains things well or sounds like me , and I’m just wondering if anyone else has been through similar at all and can reassure me a bit .

OP posts:
Footle · 07/12/2019 23:21

That must have been hard to write - well done. For a start you could still report that "therapist" who sounds totally out of order. I'd expect you to be offered more counselling with a well-informed woman, once you have a diagnosis.
Turner syndrome would have been diagnosed in childhood wouldn't it?
I don't know anything useful to tell you but you sound as if you're being very brave in an unclear situation. I hope you get answers soon.

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