I have endometriosis

[Franco12345]

Hi I have endometriosis on my lungs which is very rare ,I'm on a nebulizer to help me with my breathing

Do,s any one else have this as it would be good to hear from some one that has this

Thank youn

[Hidden]

I don't have endometriotis but just wanted to wish you well. I am sure others will be more helpful.

[Franco12345 in reply to Hidden]

Thank you so much for your kind words

[Hidden]

Hi Franco

I had this many years ago I'm now 63,

We had trouble trying for a baby, after many tablets and operations they found I had endometriosis on my ovarys and behind the womb, this was thirty odd years ago the only treatment then was laser to burn them and Danazol for nine months, (growing facial hair was not a good look) I don't know if they can give you hormone treatment to stop the cycle. You might find some help on endometrios-org/ I had a very early menopause and that finally stopped the pain, but could not have children We went on to adopt a boy of nine months with special needs he is now thirty, with mild cerebral palsy and Marian syndrome doing ok.

Sorry I can't help you more but understand your pain.

Best wishes. B.x

[Franco12345 in reply to Hidden]

Hi yes I am 50 years old and I had to have a a early menopause as had to have every thing taken a way that was when I was 30 years old due to endometriosis

But the endometriosis has spread I have it on my lungs kidneys bowel bladder and because of the way I have it doctors can not do any thing to help me so it's just time so I'm dying and life can he hard my breathing is bad I'm on a nebulizer every day I cough up blood and very tried all the time

I am with the endometriosis group but it dos not have the answers I'm looking for or help as they are not sure about the lungs and kidneys only women trying to get pregnet etc as its so rare the way I have it ,there is only about 50 people which have it the way I have it world wild

I no northing can't be done but with being with the British lung some one out there could have the same as me and I could get the help I need

I'm on morphine Tylex as my pain is so bad ,they say that the pain is wrose then when you have a baby well I don't no about that as never had a child

I would like to thank you for getting back to me and to read your story which is wonderful in the end that you had a son and that you have given him a wonderful life

That's wonderful good on you

Once again thank you for your help and good luck

[Hidden]

If you contact the BLF I am sure they can give you advice and knowledge on this.

Best wishes. xx

[Franco12345 in reply to Hidden]

I have contact BLF but they do not no any thing about the endometriosis on the lungs because it is so rare

But thank you for your help

[Hidden]

I am stunned that you can't get the help that you need and feel so sad about your situation. Take care. xx

[Franco12345 in reply to Hidden]

Thank you for your kindness

[Hidden]

Dear Franco - Understanding Endometriosis is a good book, it gave me the understanding with the treatments available, the drug treatment as in danazol (fake menopause) ie the endometrium no longer swells and bleeds as it would within and outside the womb during the woman's normal monthly cycle. Because this bleed does not happen the endometrium cells outside the womb shrivel and die (accordinly to what the medical profession believed at that time) For women that came off the drug after 9 months to try for a baby often the endometriosis would return. I understood after the actual physical menopause, endometriosis was no longer a problem because the bleed was not happening. It certainly was the case in my own experience.

If you are no longer having the normal female monthly cycle bleed I would ask for referral back to a specialist for this problem to be further investigated, something else may be going on that you are not aware of.

Hope you get somethe relief real soon.

[Hidden in reply to Hidden]

I meant to add:

Things that will help your body cope is to refrain from smoking and drinking alcohol, eating a good diet and exercise, the same things help with breathing difficulties even though a little tipple or indulge now and then can be tolerated but nothing in excess as this will have a knock on affect.

Good wishes

[Franco12345 in reply to Hidden]

Hi thank you for your kind ness I have been to the hospital but they can not do any thing for me ,there is two sides to endometriosis the side that you are on about and then there is another side which you die from a lot of people do not no about this side and it really needs to be brought to the front

I do not smoke drink and eat all right

And my doctor is very good I'm going down hill because of blood loss and breathing and it's just time but I get on with my life

I look after my husband who had a car accident in 1983 and this has left him handy caped so I look after him as well as trying to look after my self

My mother is 81 years old she lives with us so I have my hands full

I'm on strong meds which help with the pain and I'm on oxagen as well

It's nice to see if any one out there can help me

I enjoyed reading your email ,but not the answer I am looking for but thank you for your kind ness

Hope that you are well

Take care

[Hidden in reply to Franco12345]

Hope you find some useful information on this, perhaps the endometriosis society in london can help you further, they of all people should know what is available. All good wishes.

endometriosis-uk.org/?gclid...

[Franco12345]

I have been in contact with them in London , but tey can not help at the moment because it is so rare

What I have

Thank you for your kind ness

[Hidden in reply to Franco12345]

google search on 'endometriosis of the lung' brings lots of information up and other webs, there are several people on the patient uk site. One lady is referring to it as 'pulmonary endometriosis' so that may be another helpful search for you to try. Hope you find what you are looking for. Good luck

[Franco12345]

Thank you so much for giving me that infection

[Hidden in reply to Franco12345]

I don't have an infection so it wasn't me you got it from

[Franco12345]

Hi I'm sorry I meant to say information been painting all day and I'm tried

Sorry

[Hidden in reply to Franco12345]

Glad you are getting more info and help.

Do mean decorating painting or watercolour/oil painting I have a go at watercolour and pastels, not been able to get to my classes for a couple of months. If it is decorating then remember to pace yourself take care. B.xx

[Franco12345]

Hi yes I mean decoration ,I have done good this week but I'm getting tried but I only have one more wall to paint then I can put the boarder up etc

I do pace my self

Water colour how wonderful my husband used to do that before his car accident he was so good at drawing etc

He dos not do that at the moment ,

Water colour can be so relaxing hope you enjoy doing that

Thank you for emailing me its so nice to hear from you as I don't have many friends so it's lovely to hear from you

Hope that you are well and that you have a lovely day

Take care

Maryann xxxxx