Discussions By Condition: Sexual conditions

I was born without a vagina or reproductive organs.Had vagina made in 1994,now its healed up.HELP!!!

Posted In: Sexual conditions 0 Replies
  • Posted By: Anonymous
  • August 24, 2015
  • 02:49 PM

. I was born with many congenital abnormalities... Oesophageal atresia with fistula (repaired early on), Scoliosis (had Harrington rods put in 1997), Sprengels shoulder, Vaters syndrome, Spina Bifida with tethering of cord at L3 & L4, left renal agenisis, Klippel Feil syndrome. I was diagnosed with Rokitansky syndrome when I was 16. I had a tissue expansion vaginoplasty in 1994 at Leeds General Infirmary, my surgeons were Professor Lilford and Mr Nick Johnson. During the procedure, the right labia split making it impossible to use for the surgery so my left labia was used to make the vagina. I began experiencing problems within 2 months of having the vagina constructed. Within the second year of the vaginal construction I began experiencing severe pain in the left side of my vagina while having sex, it became so bad that I was unable to have sex. My original surgeons had moved on by this point so I was placed under the care of Mr Adam Balen. I kept explaining to him about the pain. He refused to do any investigations and told me that the pain was in my head and I was imagining it. He sent me to see a clinical psychologist who told me the Dr had explained I was imagining the pain, it was all in my head and I had to accept that. Eventually, I asked Mr Balen if he would contact my original surgeons to see if they had any ideas. Mr Balen refused. I asked my GP if he would contact my original surgeons. He contacted Mr Johnson, who said he would be happy to see me. I went to see Mr Johnson in 2004 at Bath United Hospital. Mr Johnson told me he believed me about feeling the pain and he agreed to do some investigative surgery. Mr Johnson removed a 5 inch wide, 5 inch deep heammoragic cyst inside the left side of my vagina. Mr Johnson explained to me he could not guarantee that the cyst would not recur. I began experiencing the pain again within 2 years, I have not been able to have sex since. Due to my previous experience with Mr Balen I did not want to go see him again. I finally found Professor Keith Edmonds at the Queen Charlotte and Chelsea Hospital in London who agreed to see me on 14 July 2015. Unfortunately, he explained to me after examining me that my vagina has healed up, I only have a tiny vaginal orifice and only 0.5cm of length. He refused to do any further surgery as he said with the close proximity to my bowel and anus it would be too dangerous. I am desperate to find anyone who may be able to help me. I am severly depressed and have suicidal thoughts. There is no counselling support available to me. Anybody who may have any ideas I would be eternally grateful. Thank you for your time.
Subject: HELP!!!

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