I cant take the incompetance anymore

[damaralenoire]

HI guys

I am new to the forum and even though i have tred reading a few threads, i feel that it would be easier for me to just ask for the information i am in very much desperate need for.


I am 28 years old, and back in 2004 I was diagnosed with CAIS


It was a total shocker and made me wonder why i was not tested for it sooner. My doctors never allowed me to pursue the reason to why i did not have periods etc. And not ever being a relationship i did not realise there was to be problems with intercourse etc.


Anyway. as i said, I was diagnosed 6 years ago. The hospital discovered i had XY chromosones. They established that i had an extremely high percentage of testosterome. It explained the reason why i did not grow any body hair. A scan revealed i had internal testes and the depth of my uterus is only a couple of centimetres.

Thats it.......

I am struggling to get medical treatment. The hospital in wales admitted they know nothing of the conidition and wants to keep referring me to London, Who are not wiling to treat me because I am from Wales and a part of a different NHS.

I am unemployed and claiming sickness benefit because over the last couple of years I have suffered with a lot of groin pain, I also have several small herbias,as well as being diagnosed with Degenerative discs of the spine. I suffer with nerve pain in my leg, My chest is constantly causin me pain, i have a lot of abdoman pain and the doctors just think it is all down to stress. I am seriously struggling to get by every day cos i am feeling so unwell. Feeling sick, struggling to breath back aching badly.

Testicular cancer runs in the family, and i was told when i was first diagnosed that the testes need to be removed to eliminate the risk of cancer.,
I cant keep on trying to diagnose myself. I just want the surgery

I really need some infmoration

Does having AIS untreated cause any more symptoms

Is there anyone here with untreated AIS

Are these symptoms results of the hormone problems or the high level of testosterone.

Can not having the testes removed cause cancer

Has anyone else struggled to find a doctor with the knowledge of this condition



PLease help


I will lok forward to reading you replies or if you want to email me your replies my email address is miss_pj@<hidden>

[foofee-22]

Dear I would like to ask you about
1 - Are you male or female, in terms of physiological?
2 - what doctors describe you? What suggested to you?

I will try to help you
9 months ago I underwent surgery to remove the testicles and I am currently famale
I can give you some advice
Good luck
Wait for your reply

[Aseras]

She has CAIS, she's completely female, it's not possible to masuclinize at all for a CAIS woman.

The only real issues are infertility and a risk of cancer if the testicles remain inside.

I had a friend growing up who had CAIS. She found out in her early teens when she didn't start having periods. That's how most find out, with their first visit to a gyno or a dr to find out why things aren't "working". The hardest things to overcome is that realization that you won't have kids and that you are quite different. Not what you expected.

There are many UK AIS women here who have experience with NHS and the shenanigans they pull. The care may be free, but it doesn't sound very good. Then again finding decent care for any intersex condition is nigh impossible. The biggest issue is the worry about testicular cancer, however if it does develop is it very slow growing and very treatable. Usually they just decide to remove them to avoid the risk and put you on HRT. They will usually do a CT or MRI to evaluate the testes and any hypertrophy or growth. If things look suspicious, they take them out.

Once you get past that, the rest of your issues are psychological. Good friends and family will help you the most. Here there are plenty of others who know how you really feel and know what you have been through.

Best wishes and good luck.

[notodd]

Hello damaralenoire.

Firstly, nice to see you here.

The reason that you cannot get treatment in London, is because the Welsh NHS has it's own funding and rules and is separate from the rest of the UK. Unless the hospital unit you have been refered to is a specialist unit and is paid for by the government and the NHS Trusts using it, (in other words pay as they use it) it will be almost impossible for you to be treated by them.

However, there may be a way, but it will involve getting special permission for you to be treated (various forms etc) so that the Welsh NHS will pay for the treatment by the English NHS. Best to see your doctor and find out the rules.

Complicated I know. But it's the only way, unless you move into England.

[Kailana]

damaralenoire

I had sent you a PM and email a few weeks ago asking if you had gotten any information and have yet to recieve any response from you. I hope someone provided you some answers that were helpfull if not just let me know ok. At the time I chose not to respond ie post an open comment since another member had chosen to suggest I need to stop posting in all threads.

Honestly I care most about helping people who come to BLO, and don't care what others think of why I post I do so because I know and have experienced the good and the bad sides of BLO.

If you still have questions then ask away. I can help you find relevant information if you are unable to do so.

[imysworld]

S

The only real issues are infertility and a risk of cancer if the testicles remain inside.



Sorry but i totally have to disagree there, thats not the only issues, it also about all the stuff that goes on inside of your head, being told it is awful

i have CAIS

[Aseras]

Sorry but i totally have to disagree there, thats not the only issues, it also about all the stuff that goes on inside of your head, being told it is awful

i have CAIS

Right, I know. I covered it, keep reading :)

Once you get past that, the rest of your issues are psychological

That's the biggest issue most of us face is the psychological damage of being different and the scarring it causes. I've gotten the whole can't have kids this that and the other talk myself. Sucks.

[lucidwinds]

Your testes if not removed can also become herniated. I have PAIS.

Jessi

[uriela]

Hi D,
Yes, the established wisdom is that undescended testicles in a CAIS woman should be removed @<hidden> the threat of cancer.

The sex hormones have quite a bit to do with bone health. I no longer produce any except for some from the adrenals, so I am on an estradiol patch. Still I have lost an inch and a half in height in the last two years, probably from cartillage loss. In CAIS the body is not reacting to the testosterone--please correct me if I am wrong!--so that your producing it is of no or little effect and you therefore have cartillage deterioration. An endo would probably get you on estrogen to slow it down.

An orchie is no big thing if the testes are in the usual place in the scrotum. If internal you would think they might be able to coax them out and the surgery would not be so invasive. However, even so, why would it should be any big deal to them eludes me: Similar things are done all the time, ovariectomy, hysterectomy, etc. to other women.

Even the endocrinology should not be beyond them: You would be treated just like a post-menopausal woman.

When I came back from having a so-called sex change operation, I was having a bit of trouble healing properly. Yeah, I sent pictures back to the surgeon's office. Advice: hang in there. I asked for an appointment with my doctor and the person I had to go through asked the reason. She told me I should go back to the surgeon who had done the operation (a thousand plus miles away). I immediately said that a wound was a wound! and had no further fuss about getting the appointment. I finally solved the problem myself but I don't think that would have happened without her and yet another doctor.--But--small minds cannot unwrap themselves from centering on its unusualness and a strange idolatry of the sexual organs.

[uriela]

Hey, D,
Sorry if my last post was off-base or irrelevant.t you t

You have lived for 28 years and I am supposing they didn't find and cancer - or did they even check? Did they do any tests or take a biopsy. Who knows for sure if you ARE going to develop any?

Don't you think you should take care of your more pressing medical needs first?

All the best!

U