Do females suffer more than men with ... - ITP Support Assoc...

ITP Support Association

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Do females suffer more than men with ITP?

S38abcd profile image
11 Replies

Hello .I have a cousin who had ITP when she was 23.Since then it's been 12 years n she's suffered a lot.as she was given hormones to stop the periods . Its sad s she couldn't get married as her health suffered n hormones led to severe complication s although her count is mostly 30 plus.It seems females with low platelets have a miserable situation. Any views or tips on how to handle itp in young women. Is there no escape from hormones..thanks.

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S38abcd profile image
S38abcd
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11 Replies
scaryteacher profile image
scaryteacher

I've had it 20 years from when I was 29 and pregnant. I don't have any treatment, just regular blood tests to keep an eye on how things are. My count has decreased from between 60-80 to 20-40.

There are non hormonal treatments out there, or none at all, like me.

S38abcd profile image
S38abcd in reply to scaryteacher

Thanks dear but may be ur period was not heavy or life threatening. .. but my cousin was given primo lute to stop heavy bleeding n this made things worse. It's terrible to see how she's suffered . 12 years..constant pain in low abdomen n high bp n weight gain.so glad to hear u ve survived without hormones.God keep u safe.

scaryteacher profile image
scaryteacher in reply to S38abcd

Very heavy periods actually, but that was before the ITP, and hasn't changed, and the pill helped. If she has a high BP, then read the leaflet that comes with this stuff, as it says it should be monitored carefully if there is a high BP and BMI.

S38abcd profile image
S38abcd in reply to scaryteacher

Dear scary..rather friendly teacher it means u cd live with heavy bleeding ...but whst id the pill u took ?was it also for controlling the period? .. actually I want some cues to help her fight better with her state.she is too weak even to focus or search on the net..what makes it worse fore is that my own three year old is is showing signs of itp n it is a nightmare for me .the first time I dis covered it I felt it's a death sentence ...how wd my little girl survive once she starts her period. ...thanks.n pls keep in touch u give me some hope.

scaryteacher profile image
scaryteacher in reply to S38abcd

I had the pill for contraception from 17, and for heavy and painful periods. I did not have ITP until half way through my pregnancy at 29, and it didn't go when I gave birth.

You cope with your periods when you have ITP the same as if you don't have ITP. You go on the contraceptive pill or have a coil, or have contraceptive implants to address the painful/heavy periods, but mine were the same before the ITP as after. You treat the period problem, rather than the ITP.

I'm not aware that one shows signs of ITP, and if your child is 3, don't go looking for it. Kids are up and down all the time at that age.

S38abcd profile image
S38abcd in reply to scaryteacher

Hello. Thanks for ur response.doctor say that my child has congenital itp as I've a female cousin with same illness.it's alarming as twice she got hurt n was transfused as bleeding won't stop.I'm trying t to lean more about itp to be helpful to her.I cn only hope her life has minimum suffering with itp.he count is 20 only.ur reply just give me hope but on my case the child has it from birth.

scaryteacher profile image
scaryteacher in reply to S38abcd

From what I understand congenital ITP is very rare, and that a cousin has it is perhaps coincidental. I've read that it needs to be a closer relationship for it to be considered congenital.

Kids sometimes get acute ITP following immunisation or a virus, and it then goes.

The count is just a number. I can feel fine with a count of 19, and horrid when it is 40. I lead a normal life, I used to teach teenagers, and the only thing I avoid is contact sport. I don't suffer with the ITP, apart from being tired. There are far worse things to have.

S38abcd profile image
S38abcd in reply to scaryteacher

Hello.long time no communication with u.Hiw is life with u.

My 3 years old is now 9 n count is down to 7.

The nightmare goes on.

Doctor says bone narrow transplant is the only option but it has its high risks too.

Looking for a good centre in UK or elsewhere with good success rate n affordable care.

Cn u help..

sailor profile image
sailor

I have never heard of a woman being treated with hormones for ITP. Are you sure there are no other medical conditions. There are many recognised treatments for ITP. If you look at the ITP Support Association web site, there is a paper published by the leading haematologists from the USA and the UK which should be the definitive method of treatment followed by all worldwide.

S38abcd profile image
S38abcd in reply to sailor

Thanks. She was given hormones to stop heavy bleeding in periods.after 12 years of battling with itp she has now high bp n weight gain.terrible state. .I'm grateful for ur fruitful feedbacks on this forum. Since my son has itp I'm following of fear ...A nervous mom..

Lynwoodley profile image
Lynwoodley

Hi I’m not sure if you can get it where u live but The Mirena coil can stop periods altogether she may have irregular periods during the first 2–3 months. After that, most women find that their periods become lighter or stop completely. I think it lasts about 5 years so this could be an option from taking hormones

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