u/MesoamericanMorrigan

Hi, as you all know there is virtually no information online for people with adhesions. Due to pure desperation I’ve found an absolutely life changing way to address this issue. An otoscope

Yes the ones that connect to your phone/tablet for your ears. Many have a soft silicone probe at the end, a light and the magnification necessary to examine that area close up.

I’ve been complaining to doctors about vulval pain since 2012 but about 2-3 years ago finally realised I had adhesions of the hood to the glans and the labia minora to the underside of the clitoris and also to the mucosa

I was in so much pain I applied haemorrhoid cream down there containing zinc and hydrocortisone.. all of a sudden the seams where my fused parts are sprang forth a lot of chunky smegma and began opening up.

I have a lot of skin folds due to my EDS and in between each one that was glued together was a lot more hard keratin that was like hundreds of shards of glass. No wonder I had been experiencing lighting sharp cliterodynia. I also discovered a lot of epidermoid cysts. It’s crazy, I’d find a ‘seam’, apply a little bit of pressure and this huge ‘ribbon’ of plasticky keratin would come out and then a bit of relief.

I even found several hair splinters (not ingrowns) directly in my glans!

I’ve been removing all this stuff and gently separating my adhesions using hydromol ointment twice a day and am horrified that things got so bad when I thought washing with just soap and water and looking without the scope that I was adequately cleaning away anything irritating down there, but I couldn’t see the adhesions on the underside of my glans without it.

I had several exams where I was told I was perfectly fine and normal when it’s really obvious how many adhesions I had when you look properly. I have now emailed my doctor several photos and videos of the adhesions/removing keratin from them and said I was to be evaluated for lichen sclerosus.

If anyone wants close up pics of just how clear and obvious evidence of this issue you can obtain is/how I’m able to carefully start opening up the adhesions (essentially performing lysis on myself) then I’m happy to share privately but honest to god I’d be totally up shit creek without a paddle if I hadn’t bought this, because none of the sexual health doctors I’ve seen have any familiarity with adhesions, missed obvious ones now I’m looking at comparison photos and they are dragging their feet on prescribing oestrogen cream.. getting a procedure like Lysis on the NHS would be out of the question

I have been fight to see an actual vulval pain specialist or dermatologist, even jus to get topical estrogen on my repeat prescription (I’m 33, was on long term birth control now on progesterone only pill AND have EDS, all predisposing me to chronic inflammation and fragility down there