New Diagnosis

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

9 Replies

  • 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

  • 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

  • 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

  • Hi - click on my username and have a look at my endo posts. Please be aware that there are endometriosis centres so depending on what they find at the lap you might need to ask for a referral rather than just being given more meds by a gynaecologist. Did you get a diagnosis for the B12 and folate deficiency such as pernicious anaemia? If so this would be linked to endo as both are autoimmune diseases. Basically, don't let the general gynaes push you from pillar to post if your pain continues after the lap and don't let them give you endless menopause injections. You would need to push to get seen in a proper endo centre x

  • 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

  • Hi - going private doesn't necessarily mean they are a specialist in endo. If you want to private message me the name and hospital I will check them out x

  • 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.

  • Hi - this consultant is a specialist in gynaecological cancers and endometriosis isn't even on the list of conditions he deals with so he shouldn't be doing a lap to look for endo as he could very likely miss it. As you have been messed around it is likely to be due to you not yet being seen by the right people. As it is now suspected that you might have endo you need a referral to the endo centre in the same city. Have a look at my post on finding a specialist and either ask him to refer you or go back to your GP. Are you privately insured or are you paying to see him?

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

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