diagnosis of endometriosis: I'm a young... - Endometriosis UK

Endometriosis UK

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diagnosis of endometriosis

channy
channy

I'm a young woman who turned 30 in may. I have been diagnosed with the condition and been told i cant have children. which is hard to deal with. i am an only child and more than anything i have always wanted to be a mum.

how do i come to terms with the diagnosis

23 Replies
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Hi, I'm very sorry to hear that, must be really difficult for you. Would you mind me asking who you were told that by, and what where the reasons they gave you? Hope that doesn't seem intrusive, only because occasionally women are incorrectly told that by uninformed doctors / gynaes - who don't truly understand endo, and the treatments that can be done to help someone.

channy
channy in reply to Arcadia-77

Gynaecology told me this I had a laraposcopy and dye test in March I was informed that I had scarred tissue also

Arcadia-77
Arcadia-77 in reply to channy

Did they say your tubes were blocked? Although either way, I think it would probably be a good idea to get a second opinion. Are you in the UK, and if so do you know if the consultant you saw was an endo specialist at one of the BSGE centres?

They say it is quite extensive on the left

Arcadia-77
Arcadia-77 in reply to channy

I really think you need a second opinion, many women even with really severe endo are able to get pregnant, some naturally, and some with help. It's difficult to know so depending on what they actually found, but there is a chance they could possibly be mistaken. Obviously I wouldn't want to get your hopes up, but equally, I would hate for you to go through the trauma of dealing with it all and coming to terms with it - if this is not the case for you. I do know several women who have been wrongly told all kinds of things about their endo and fertility by doctors.

channy
channy in reply to Arcadia-77

Thank you I will definitely do further investigation

My gynaecologist specialises in endometriosis, I was referred to him when my previous gynae put her hands up and said she couldn't help me as my endo was too severe. I was told my insides were a mess and I had a 4% chance of falling pregnant. Since he operated and cleaned me up, he is optimistic that I COULD fall pregnant naturally and that is with one tube blocked from scarring. Good luck!

channy
channy in reply to rachyb

Thank you for your message I will definitely find out more I am hoping for a positive outcome

Hi there

Firstly so sorry you have been diagnosed with this horrid disease!

I was told on 3 separate accounts that would never be able to conceive because I have endo... I now have 2 children and have been pregnant 4 times (sadly lost 2 pregnancies) but I have an 8 and 9 year old.

Please don't give up hope!

You can speak with your doctor and get beds that make you more fertile too.

Good luck with the future!

channy
channy in reply to Kforkat

Thank you for your message I do have a friend who has this horrible disease who gave up on having a child and thankfully was blessed with a little girl. Its just daunting when you are given the diagnosis and told it's quite extensive not sure how to help and along with all that you are left with emotional distress. Severely painful monthly cycles and all you can think is why me and how do I cope

don't give up hope they can't be 100% . I have blocked tube and scar tissue and I believe it will happen. you hear all them stories about it happening with people with in explained fertility issues.

go back or get referred elsewhere xxxx hugs

channy
channy in reply to Booboo08

Thank you

Hi; I'm very sorry for you, but beleive me you are not alone.. I'm form Turkey.. I have very extensively large adenomyosis. Some of doctors told me that I should find a "surrogate mother" to be a mum, because I have very well-working ovarians, but not a good uterus because of adenomyosis. However, I could be pregnant naturally.. Unfortunately, I had lost my baby in the 8th weeks. After that, I went to other doctors. They never said you could not be a mum naturally/by IVF .. I will try IVF after Esmya treatment.. Shorthly, I want to say that, please do not loose your hope and try another doctors.. I always pray for all of us.. hugs...

Hi

Just had to respond to your letter, I am 43 and was told 20 years ago just before I was due to get married that it was highly unlikely I would ever have children. Diagnosed with severe endo, ovarian cysts, policystic ovaries. I was fortunate to be referred to a fantastic specialist and after having laser treatment and one round of ivf became pregnant with my now 14 year old son. I then went on to have a daughter who is now 12 naturally, and a wonderful ' surprise ' of another daughter conceived when I was 39, naturally.

I am too an only child and the thought of being childless was horrendous. Don't ever give up hope. Push doctors for referrals, keep positive. It can be a long painful, emotional journey but I, like you, felt helpless and desperate and have come out the other end with 3 beautiful children. You are still young, don't give up hope.

channy
channy in reply to Ems3_1972

Hi there Thanks for your message wow I don't know what to say you were very determined and I feel like I gain inspiration from you

Ems3_1972
Ems3_1972 in reply to channy

No problem, I just feel like I've been in the same position as you and here I am now, a mother ( the only thing I ever really wanted to be!) , don't give up!

Hi

Sorry to hear about this. If your endo is extremely bad its preventing you from falling pregnant can you not look into ivf?

Or you could see a private endo specialist like dr ashwini trehan who will charge quite a bit but he can remove your endo no matter how complicated it is.

You should be eligble for ivf.

Don't believe them. It is always possible, have they given you a reason for the infertility or are they trying to put you on a path of IVF treatment?

They say it is extensive and my tubes are blocked also I have scarred tissue

I would suggest a second opinion by an Endometriosis specialist as gynae don't always know much about Endo.

when were you diagnosed? I`ve heard a lot of stories from women with very bad endo and have still had kids, don't give up x

bsge.org.uk have a list of specialist centres

channy
channy in reply to kyla78

I was diagnosed March this year

They will say tht as a precaution with what thy have found - thy trying to be realistic, but don't lose faith - I have extreme endro with adhesions and no dye came out any of my tubes and yet here I am with two natural births giving me gorjus babies. So don't worry

channy
channy in reply to Aahmad

Thank you for your message I appreciate your message I will try to be more positive in my way of thinking

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