coping with mutilation

[bonnalys]

hello all. I know some of you must have had similar experiences, so I was curious if you have any words of wisdom or advise for coping, dealing with and living as the victim of unwanted genital surgery.

[Kailana]

as I am still dealing or fighting against what was done. I will try however to provide some perhaps usefull information.

1. Get bloody Angry and wait tell your alone and safe inside your house and just Yell, Shout, Scream, Curse like a filthy Pirate, a Drunken Sailor, the worst Gangbanger wannebe you can think of and let out some pent up frustration.

2. Grab a hold of yourself, ie give yourself a hug and just relax. Crappy things happen to the best people in the world. Remember your not alone, a lot of us have some crappy experiences, and while at times we might get depressed there still are the good moments that make life bearable.

3. Let people know, seriously especially doctors that you are not happy with what has been done to you. Many people have compassion and do understand that somethings we have had to endure they would never want to have happened to them or the people they care about. Often the shame stigma attached with cosmetic alteration is cause for embarrassment, so fight against it, the embarrassment the shame just whittles down your psyche. So don't let shame or embarrassment eat you up. None of us need to feel ashamed because of what doctors or parents have done to so call make us appear normal.

4. Advocate for yourself and for others. Share your own experiences and listen as best you can to others. Often our experiences will not be exactly identical, but they will be close enough to help understand one another.

5. Relax, this is my calming down solution after the anger. Take a long hot soak in a tub, or a sauna, hottub, jacuzzi or whatever else its called where you happen to be at. just reflect and contemplate a nice open meadow where it is just you and the butterflies.

6. Therapuetic massage, seriously a nice massage can work out all the kinks and just put ya in a state of bliss. All worries dissapear for a time and sometimes that little glimpse of perfection can provide tons of support that some might just need to cope a little better.

7. Exercise, get those endorphins working for you. A good workout, run, cycling, swim or whatever else can help burn off some frustration. A nice walk works for me, but then I have some limitations on exercise. So find a way that works for you.

8. Listen to yourself. Often we can provide great insight and or inspiration for others but we forget to listen to our own advice. I have that problem most of the time just to let you know. Still though talking to friends and family that do understand you can help alleviate any issues. Socailise with people you are comfortable being around.

And most importantly:

10. Fight the powers that be and give voice to your rage, frustration and whatever else. this is sort of a repeat of number 1. Let the people know who hurt you understand they messed up your life. They do need to know that you are not happy with what they have chosen for you. I so swear some people just don't get how much damage is done to a person when that person feels horrendously violated. Write a letter, record your thoughts and stuff them in a box with a lock and key. Or mail them to those responsible. Your call. I actually like the Box method, just one more way to get rid of some frustration. Write down what troubles you, stuff those words in a box, and bury them, or burn them.
P.S.
Works well as a way to temporarily get rid of some crappy thoughts. I really don't want people to know that there are a few people I would love to pound the crap out of them for their idiocy.

best wishes always.

[The Female Eunuch]

Hi Bonallys,

I'm sorry I don't have the answers, but I do face similar issues myself. For me there are two issues - the psychological effect of experiencing all the medical treatment and getting used to the idea that that part of my body doesn't measure up and is in need of correction, and the physical effects of scar tissue.

I'm hoping to find some sort of psychological treatment to deal with the former. My counsellor found me some exercises to do, but they were exercises you have to do with a partner, and she found them just as the woman I was going out with lost interest in me.

For the latter, I'm wondering if there's any surgery I can have to remove scar tissue. I'm particularly thinking of what seems to be scar tissue transferring pain from my intestine to my genitals, though I may be misinterpreting what's in there.

Caroline

[skolapper]

Hi All,

My 1st summer period with my Nano, set up in October.

Currently at 29 degrees. Everything looking OK, mixture of soft & LPS but getting nervous.

How is everyone else coping?

Know stability is key but whats the real upper danger zone temp wise??

[Laura Robison]

I'm having trouble with the anger and resentment about what was done to me, and the secrecy by which it was kept hidden from me, and I know I dwell on it more than I should.

I think Kailana has some good ideas, especially the ones about being an advocate, and fighting the powers that be, to voice our rage, resentment and frustration.

The next time I go to a doctor, when my condition comes up, believe me they are going to get an earful about how I feel and what should be done differently. My problem is I tend to get emotional and break down into tears.

I am also working on a letter to my congressmen. Do any of you have any suggestions about what I should say and how I should say it. Maybe a "human or civil rights" type approach would work. I could say something like intersex children should be given the right to self determination over their bodies, which would include banning cosmetic or normalization surgeries during infancy, full disclosure of their intersex condition, complete access to their medical records, and that they be given all of their options, and counseling so they can understand the consequences and limitations of their choices. They should also have the right to have their documentation changed if they desire sex reassignment.

Or is this a bad Idea? I would have to be careful about what I say, because my ideas are still forming and not very mature, and wouldn't want to get it wrong. I wish I were better at writing. Words don't come easily to me.

Laura

[Kailana]

Laura, becarefull ok, Doctors are not so good at listening and your choice of providing an earfull can actually hurt your own treatment.

Many doctors are easily offended when they can not or will not provide answers even when they know them.

[Aseras]

Ah yes, nothing like getting the pleasure of educating your doctor and getting to be the labrat they learn on.

They don't like to be wrong, and they certainly don't like to be reminded that they are not all powerful. Most likely you'll just get referals to "specialist" who are equally inept about your issues. That's been my case.

[Kailana]

or you will be completely ignored as I have experienced for a great many years and even when they have all the screwy hormone levels to look at, and the recommendations for additional testing they often will ignore evidence because they do not understand the importance we place on knowing facts rather then there assumptions.

example with my karyotype 3 1/2 years old now.
of 20 cells analyzed:
5 Complete 4 of which were karyotyped as being normal 46XY
10 Partial unidentified <----that is all it says
which leaves 5 of the 20 completely unaccounted for.

reccommendation : PCR to test the stability of the Y Chromosome.

what happened with the recommendation: absolutely nothing.

that is a small example of when doctors can easily see there is evidence something isnt right and the karyotype is incomplete and they chose to not due the additional testing to find exactly how my previous Kayotype in 1993 is XY/XO or 45XO/46XY however you would prefer to label it.

See doctors may go to school for years and may have a whole lot of knowledge but they can make assumptions off of incomplete information and for myself, all I really see from them is the concentration/awknowledgement of the normal cells only and i could care less about the normal cells, I would seriously appreciate better understanding by them of the partials, and how they affected my developement.

[Laura Robison]

Sometimes I just feel like I want to vent to someone. :evil: I may be going to a doctor soon because I have some symptoms of low thyroid. I sent in a blood test to ZRT laboratory which was recommended to me and should have the results back in a week or so. If it is low I will have to go and then the inevitable questions about my medical history will come up. I'm wondering how to handle that. The doctor won't understand why I take so much estrogen at my age. I don't even know if my body still produces any estrogen on it's own as I have never had any hormone levels done. It's been a long time since I have seen a doctor because of insurance issues. I don't know if I should even mention anything about being intersexed. :mouth_clo

[Laura Robison]

that is a small example of when doctors can easily see there is evidence something isnt right and the karyotype is incomplete and they chose to not due the additional testing to find exactly how my previous Kayotype in 1993 is XY/XO or 45XO/46XY however you would prefer to label it.

See doctors may go to school for years and may have a whole lot of knowledge but they can make assumptions off of incomplete information and for myself, all I really see from them is the concentration/awknowledgement of the normal cells only and i could care less about the normal cells, I would seriously appreciate better understanding by them of the partials, and how they affected my developement.

With so little information on the partials, they could have been 45XO for all we know. What a mess!

[Aseras]

Sometimes I just feel like I want to vent to someone. :evil: I may be going to a doctor soon because I have some symptoms of low thyroid. I sent in a blood test to ZRT laboratory which was recommended to me and should have the results back in a week or so. If it is low I will have to go and then the inevitable questions about my medical history will come up. I'm wondering how to handle that. The doctor won't understand why I take so much estrogen at my age. I don't even know if my body still produces any estrogen on it's own as I have never had any hormone levels done. It's been a long time since I have seen a doctor because of insurance issues. I don't know if I should even mention anything about being intersexed. :mouth_clo

If you've been on HRT there's a good chance your natural hormone levels are toast. Testicular Testosterone production plummets and will stay suppressed or non existent for a long time. Estradiol production from ovaries appears to be able to resume much easier provided you still have some follicles that can mature.

When I was 18 I used to make just under 200 ng/dl of testosterone and around 200-300 pg/ml of estradiol. After 3 years of Testosterone and some estradiol experimenting I now make only 41ng/dl of testosterone and 100 pg/ml of estradiol. An HCG trial will push my testosterone up a little, to near 100, but makes my estradiol eventually go way up, makes my "testicles" swell up like double the size and will make me incredibly "sick" at the end of the month.

Are you self medicating or is another doctor prescribing the estrogen? I admit I self medicate, but it's only progesterone right now, Although I have quite the "stash" of leftover meds. I really don't want to take anymore hormones. I feel fine the way I am, and I feel that taking them in the first place is what has caused me the most trouble. If I had to, I would prefer to be on estradiol and not testosterone. I feel SOO much better on estrogen. However if I took estrogen unopposed I would get very sick.

[Kailana]

That is where all of this started for myself back in 1993, with all the labwork after my MRI.

1st dx. CAH or the words they used, Adrenal Genital Hyperplasia. <---older terminology not often seen anymore, but more common in older medical textbooks and literature.

Karyotype
XY/XO also commonly seen as 46XY/45XO, 45XO/46XY, and sometimes with other clinical lables like 45XO/46XY MGD, 45XO/46XY Turners Mosaic Male, 45XO/46XY Turners Mosaic Female. 45XO/46XY MPH.

Now me once again, I was told to look up Turners Mosaicism to understand what the XO meant, and that caused confusion, but to make things simple it is applicable to me, because of the development i have. That is why I use 45XO/46XY Turners Mosaic Male and for others just cause i understand how I am Turners Mosaic Male True-Hermaphrodite I am indeed a Turners Variant as that is applicable due to some Turners Features.

My biggest issue is when doctors do not have the neccessary training on intersex conditions and are then so bigoted because they think they know more then I, and I have not always had idiots for doctors.

sorry again. but i can't help it. Way too many Doctors have only caused me more problems then offered to help me understand better. Way too many doctors have been stuck in the trying to convince me that i am Male and they do use the normal cells to validate me being normal Male, which is abou the most ridiculous think i have ever heard anyone doing, especially since I do know a great deal about myself, my anatomy prior to my last surgery and also what i look like inside after my last surgery. I have had way too much imaging and with each and every single method used, there are things that dont fit so nicely with the assumptions that i am a normal male.

Aseras i understand greatly the effect of unopposed estrogen therapy, i have several doctors now who understand as well, again because my body is different and i do have things men do not have. You need to make sure your doctors understand that you know as well.

Your last imaging report is interesting in that it does mention soft tissue without clarifying what that tissue actually is. When you can get them to test that, then they will understand why you react the way you do and you will then have the medical documentation so that all of them understand what you are.

Perhaps then you like me will be treated better when they take the time to understand how all of us are put together.

[Laura Robison]

Are you self medicating or is another doctor prescribing the estrogen?

I am self medicating. I buy my Estrofem from an on-line pharmacy that doesn't require a prescription. I don't think I'll tell the doctor about that detail. I hope I don't get asked directly about it.

[Aseras]

Well I don't blame you. A small bit of advice, dump oral hormones and get on injectables. It's so much better for you and it's way cheaper. A quick 10mg shot every week or two is way better than taking a 2mg pill two or three times a day. It's much less a load on your body and liver and you will feel much better.

I think you'll find often enough if you tell the dr you are self medicating or that you ARE going to do it it seem to help often enough to get their attention that you are serious. Especially if you are well informed of the risks and you have a good grasp of why you are doing it without delusions and fantasies about what it will or will not do for you.

[Kailana]

seriously your biggest mistake you are making is infact the self medicating.

Your doctors need to know what your taking, dosage and how often and how long.

You do need to have lab work done to see what the self-medication has done and whether or not it is putting you at risk which it can do.

I hope all understand that knowone should ever self medicate without a doctors/endocrinologists supervision.

Get off the oral as well, inject or patch is alot safer for your heath.

If you have sensitive skin i would suggest injection, if you have no issues with your skin then use the patch. Or if you have issue's with injection use the patch, many find it easier then an injection. I happen to inject because I do have issues with my skin being highly sensitive to just about everything.

[Laura Robison]

About 4 years ago my doctor took me completely off of hormones as she was doing with all her HRT patients. It was something about the dangers of breast cancer. I had been on 1.25mg premarin/day which I had been taking for 30 years without ever having any lab work done.

I didn't like how I was doing without hormones, so early this year I decided to research hormones as to what types were the best and how much I should be taking. I didn't realize I could be suffering bone loss all those 4 years, and my doctor never said anything about it. I'm pretty fed up about how doctors have handled me. If I went to a doctor I would probably be put on ethynyl estradiol which would be terrible. I haven't had the best of care from doctors, and why get a prescription from someone I have to educate about what I need?

I want to be good to my liver and I am thinking of going to a skin patch. Maybe the 100mcg strength. I just don't think I could bring myself to stick a needle deep into my thigh muscle. I wish I could, but I hate needles.

Right now I am taking one 2mg tablet per day of Estrofem and a low dose aspirin every day. I think that's about right for someone post-SRS as I am.

[The Female Eunuch]

If I went to a doctor I would probably be put on ethynyl estradiol which would be terrible.

what's wrong with ethinylestradiol?

[Laura Robison]

Ethynylestradiol is very hard on the liver and causes more problems with blood clots. People who take it are more prone to the possibility of strokes etc. All the birth control pills use it because it is cheap, powerful, and stays in the body a long time (it has a long half life which is part of the reason it is so hard on the liver). Any form of estradiol is much better than ethynylestradiol.

Estradiol is the most powerful form of the estrogen produced by the ovaries, and it is much easier on the liver. The oral form causes more problems for the liver and blood clotting because of the first pass effect but it is still much better than ethynylestradiol. The first pass effect is when the digestive system sends it straight to the liver before it gets to the body. The patches and injections eliminate the first pass through the liver.

[Aseras]

My mom has been on premarin for better than 10 years. Due to severe endometreiosis she had a total hysterectomy and oophrectomy when she was in her early 40's. She has severe bone loss now, even taking 3.5mg a day of premarin.

Premarin is crap run away.

So many of the bone loss drugs now are SERM's Selective estrogen receptor modifiers. They act like estrogen in the bone, but not the breast or uterus. Why take some expensive fake estrogen with unknown side effects when you can take bioidenticals?

Oral hormones are greatly degraded by the first pass of the liver and by digestion. Much of the hormones are lost.It also alters your bloodwork as the estrogen metabolites are weaker estrogens, estrone and estiol. Anyone who takes oral hormones has an inverted amount of these, 4-5 times a higher estrone levels than estradiol. It should be the other way around.

Synthetic estrogens like ethinyl estradiol are orally active because the body has a hard time processing them. This is also why they have serious side effects such as bloodclots and cancer risks. They last a very long time and are very powerful in low dosages. They are merely prescribed for convenience.

[Dianne]

My GP took me off oral oestrogen in my late 30's because I had been on them since 18 and because of the presumed health risks. When I was referred to an endocrinologist (age 57) she immediately put me on the estradiol patch and ordered a bone density scan. Sure enough, I had bone density loss.

The endocrinologist said oral oestrogens are terribly ineffective and don't produce the required hormonal levels in the blood, plus being hard on the liver. The patch, on the other hand, completely bypasses the liver and does increase serum levels.

With three years of proper HRT, exercise, and calcium supplements my repeat bone density scan last month showed normal bone density - osteoporosis is GONE!

[Aseras]

It's just that orals go in fast and go out fast. You get a big peak and then they are gone and you have lower levels. Non oral, either slow release pellets, injectables or transdermal, ( patches and gels ) maintain a more stable level as they are slowly absorbed. The pellets seem to be the best, but are horribly expensive and novel, only a few places will do them. Injectables are the best balance, they are cheap and easily found or compounded. A compounding pharmacy like Stroheckers or Anazao can supply about a 6 month supply of hormones for $60 shipped to your door 2 day fedex, without insurance. Patches are effective, but you usually have to use several at a time to get an effective dose, and they are very expensive even with insurance. Here, in Florida where you sweat they just don't stick well. Gels are just plain messy mostly and again you have to bathe in the stuff every day coating an arm or your chest or some other larger area of the body.
Good hormone levels are a must.

I'm a hypocrite for saying that though as I've all but sworn off screwing with mine anymore becuase it just causes me problems. I'm sure i'll find a balance or a decent doctor eventually. I hope.

[Zaora]

The endocrinologist said oral oestrogens are terribly ineffective and don't produce the required hormonal levels in the blood, plus being hard on the liver. The patch, on the other hand, completely bypasses the liver and does increase serum levels.

oral oestrogens? Would that be or include birth control pills?

One of my major concerns right now is that I am not on the right... Hormones ... for my age/condition/situation.. The endo I saw only put me on birth control pills

[The Female Eunuch]

Zaora wrote:oral oestrogens? Would that be or include birth control pills?

Yes, the most common oral estrogen medications are birth control pills, though there are also some oral estrogens that are manufactured for use as hormone replacement therapy to treat menopause.

One of my major concerns right now is that I am not on the right... Hormones ... for my age/condition/situation.. The endo I saw only put me on birth control pills

I'm on birth control pills for estrogen too. Both my GP and my endocrinologist (who I am no longer under the care of) insist that all estrogens are created equal and that the ethinyl estradiol in the birth control pills is as good a source of estrogen as any other.

Various members of Bodies Like Ours have told me that this is not so, but I can't really try alternatives without the agreement of my doctors.

cheers,
Caroline

[Laura Robison]

Aseras is really the expert on hormones, and knows a lot more than I do.

From what I have learned, the ethynyl estradiol in birth control pills is very hard on the liver and has a greater chance of causing blood clots. Estradiol is much easier on the body than ethynyl estradiol.

What Caroline's GP and endocrinologist have told her about all estrogens being created equal is exactly the reason I self medicate. I have done research on this and I trust my knowledge on this.

Most birth control pills are "low dose" and are not adequate for HRT. the benefit is that birth control pills include a progestin for part of the monthly cycle. Anyone with an intact uterus should cycle progesterone while taking estrogen, but capsules containing micronized progesterone are available for this.

[Aseras]

Birth control pills are NOT a good form of HRT. First they are too low of a dose. Only .035mg or 35mcg of ethinyl estradiol. You would need at least 100mcg per day to have an effective dose. The low dose is only to suppress ovulation and therefore pregnancy. It is not enough to completly replace your estrogen needs.

Secondly most birth Control pills now are low dose so the levels change depending on the week of the tablets.

Thirdly birth control pills are usually a synthetic long acting estradiol and a long acting progestin. Both have serious side effects when taken long term, and especially at the levels you would need to take them.

You really need to look into bioidentical hormones. They are dirt cheap. You can get a 30 day prescription for oral estradiol valerate tablets at walmart for $4 a month or $10 for 90 days. That's still oral hormones, where you would need 2-4mg per day to get an effective dose. On injectables you only need 10mg per week or every other week of estradiol valerate or 5mg every 2-3 weeks of estradiol cypionate. Both of those are less than $10 per month.

10mg per week of injectables is much less than 14-28mg per week of orals and much better on your body as you get 100% of the estradiol into circulation without it being degraded. Transdermal, patches ( usually 100mcg to 300mcg per day ) and gels ( 1.5 mg twice per day ) are effective as well. That estradiol does not have to compete with the estrone, the metabolite of the estradiol that is made when you take it orallly. Both use the same receptor. The estrone is 12-40 times weaker. A normal woman at the peak of her cycle makes at most 500mcg of estrdiol per day. That's as much as you need total.

Micronized progesterone is good as a crutch but it's crap. it lasts like 4 hours total and it is gone. You need tot take it at least twice a day, even the 200mg for it to wrok well enough to stop problems. Progesterone gets eaten WAY faster than any other hormone. The injectable progesterone only last 2-3 days, but works much better. If I have a problem one 50mg shot of progesterone will stop it cold within a few hours. The problem with that is you get to take a shot every few days. Progestins are similar in function, and they work much longer and are orally active. However, they are usually a modified testosterone molecule and have other side effects as well including masculinization and mood swings and they can interefere with hormone levels as well as they can bind to androgen recptors due to their similarity to testosterone. You just have to try and see what works for you. I suggest avoiding provera at all costs. I've had serous problems on it before.

The other issue with progesterone is that you either have to cycle it, or keep taking it forever. If you stop you get withdrawal, which is a period ( assuming you have a uterus or endometrial tissue somewhere ). Progestins taken long term can reduce the lining enough that it's not a problem usually, progesterone will not do this. There's a difficult balance to acheive.

The only reason I self medicate is that it is really hard to find a doctor who knows enough about these things to be of any use or willing to help. My last doctor was knowledgeable but an arrogant ass who was trying to push me into things and I had enough of it. I had to learn all this crap out of necessity. I consider myself a well informed patient. I suggest everyone look into the drugs their doctors prescribe and know as much as they can about them. Make your doctor tell you why you are taking it, why that dose and anything else you want to know.

[Zaora]

I had a feeling that I should have been on something more than just BC pills...

Oy! Aseras you've made my head spin!

Where you start.....

"If I have a problem"

What kind of problems are we talking about here? At this point in time, I am actually not sure why I am on birth control pills at all. I don't have an discernable "issues" that I can tell, and that's one of the reasons i am unsure why I am on BC Pills to start with

"side effects as well including masculinization and mood swings"

Bad Bad Bad! I don't want anything that's going to make me more masculine.

In fact I'm asking about these hormones to see if they will help with my feminine features.. I read somewhere that Estrogen with help with Redistribution of body fat, and breast growth. In my current stat, I have the build of a tree :rolleye11 Very straight lines... , and the distribution of fat as far as I can tell is male like...

I just don't know enough about what hormones do, and I don't want to derail this thread with my Hormone questions..

[Laura Robison]

Micronized progesterone is good as a crutch but it's crap. it lasts like 4 hours total and it is gone. You need tot take it at least twice a day, even the 200mg for it to wrok well enough to stop problems. Progesterone gets eaten WAY faster than any other hormone. The injectable progesterone only last 2-3 days, but works much better. If I have a problem one 50mg shot of progesterone will stop it cold within a few hours. The problem with that is you get to take a shot every few days. Progestins are similar in function, and they work much longer and are orally active. However, they are usually a modified testosterone molecule and have other side effects as well including masculinization and mood swings and they can interefere with hormone levels as well as they can bind to androgen recptors due to their similarity to testosterone. You just have to try and see what works for you. I suggest avoiding provera at all costs. I've had serous problems on it before.

I have read about a progestin called Dydrogesterone. The brand name is Duphaston and is manufactured by Solvay Pharmaceuticals.
It's supposed to have no masculinizing effects.
http://en.wikipedia.org/wiki/Dydrogesterone

Here is what Wikipedia has to say:

"Unlike other synthetic progestogens, dydrogesterone is not chemically related to testosterone. Its low affinity for the androgen receptor explains why it has no unwanted androgenic or anti-androgenic effects even at high doses and after prolonged treatment:

no virilisation (acne, voice changes, hirsutism) of the adult female
no virilising effects on the genital tract of the female foetus
no effect on the fertility of the offspring.

Dydrogesterone is not converted into oestrogen, and has no adverse oestrogenic effects on fertility or sexual development."

[karmanuance]

Doctors have been indoctrinated.. They are the absolute. If you raise any doubts they just look at you and call you a freak. You need to be normalized. F* U doc's. Sorry no offense, just internal voice speaking


Laura, becarefull ok, Doctors are not so good at listening and your choice of providing an earfull can actually hurt your own treatment.

Many doctors are easily offended when they can not or will not provide answers even when they know them.