New Diagnosis: I'm 23years old, after... - Endometriosis UK

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New Diagnosis

Marr_steph1352011 profile image
6 Replies

I'm 23years old, after bleeding constantly for weeks, collapsing nearly needing blood transfusions plus the unbelievable and indescribable pain now being told could be down to adhesions or endometriosis. Due to have labroscopy ASAP, starting on hormone treatments Monday to stimulate early menopause. Anyone else is or has been in same position. Having to deal with this pretty quick and rely on 4 different lots of painkillers and 3 lots of tablets to stop the bleeding. Feel I am now relying on tablets. Plus having to teach my 3year old to ring for ambulance in case mummy collaspes again. Please anyone can talk to me bout what happens next, comig to terms and just being a friend. Much appreciated xx

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Marr_steph1352011
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Agirl89 profile image
Agirl89

Hey,

I feel your pain, I've had 2 years!

Have they checked you for bleeding disorders? Could be worth asking especially if you bruise easily?

Additionally have you tried Norethistorone? you take 3 or 4 per day and strangely it is the only thing that has helped me... X

Marr_steph1352011 profile image
Marr_steph1352011 in reply toAgirl89

Hey, yes I'm currently taking norethisterone, 4times a day with tranxemic acid. Was on mefenamic acid but took me and replaced with another. They have done lots of blood tests only thing that kept showing was folate and b12levels that were low. So taking meds for that too. During my 5 day stay at hospital internal ultrasound (only picked up a wonky womb folded back upon itself) nor a clotting agents within my bloods were done so finally when someone picked up they were nornal..

Consultant now wants me to start hormone injections to bring on early menopause and then artificially restarting up within 12-24m. Just fed up constantly in pain and whilst in hospital being treated for PID, seems everyone just guessing :(

Hope ur okay xx

Agirl89 profile image
Agirl89 in reply toMarr_steph1352011

Hey,

tranexamic acid is much better as the other can in some instances worsen bleeding due to the anti inflammatory base.

Do you have an improvement with the Norethistorone?

I feel your pain with low levels, bleeding causes so many knock of effects, which just make you feel more rotten!

I asked about bleeding disorders as I have 3 all which contribute to my ladies issues..

also on that note, most bleeding disorders such as VWD (one of mine) can only be diagnosed via a specific testing, lab and specialist...

if you want to private message me I'd be happy to talk about my experiences and try to advise where possible or just listen.

Hope you are okay xxx

Marr_steph1352011 profile image
Marr_steph1352011

Thanks for your comment, after as u say getting sick of being sent pillar to post we are now in private seeing specialist fingers crossed they will sort it. Nothing was mentioned but the. Again my G.P's aren't exactly on the ball either. The gyno at the surgery just said it was a period. Since then obv been admitted, taking that many tablets I rattle. Now waiting for procedure date and results from smear and analysis. X

Marr_steph1352011 profile image
Marr_steph1352011

In past years they have blamed it on PID, now only when seen him has he mentioned anything about smear etc. Waiting on these results, had swabs etc done millions of times. The pain is how you have described in some of your posts, pain shooting up below, pain during and after sex can only describe as a burning sort really. Pain all in abdomen, bleeding for nearly 3weeks. Loosing large clots and then to have the brown sludge like pieces. Flooding through clothes, pads etc.

The blood loss and pain making me go dizzy I actuly fainted. Heat is really only thing that helps, my bowels been affected but been put down to IBS, however have periods of where it bloats, for me going a week can be sometimes regular then other times every other day. Read where that can be a factor. Just want answers.

He said the hormone treatments will solve the bleeding etc but painwise is why he wants to do the labroscopy so quickly. he obv mentioned adhesions and endo maybe a cause Nd obv mentioned 'c'word bit feels this is very unlikely with my age.

Marr_steph1352011 profile image
Marr_steph1352011

He found it, severe endometrisos with small deposits leading to adhesions. Hopefully on road to recovery x

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