Only just diagnosed at 48.

[Shell1967]

Hello I'm Michelle and have suffered with heavy prolonged periods for many years and was only ever prescribed tranexamic acid tablets.my pelvic area is always sore,sex hurts in some positions (sorry)I go constipated to ok.my main symptom is I wee very frequently.i never put anything together and plodded on.i eventually had a uttasound but it showed nothing up except complex cysts on right ovary.after closely following the cyst gyno suggested Mri which I have the results on Wednesday.showing right ovary covered in endometrioma,my sacro ligaments both have endo and what worries me there is a lesion on my bladder ? Please can anyone reassure me if This has anything to do with endo as well? My gyno is sending me for a cystoscopy to check bladder and a hysteroscopy as my womb lining is 11mm thick.i am so new to this and dont t know anything else.could my constant weeing be caused by endo and what is a lesion ? What are the sacro ligaments is this common ? Could anyone else who is taking norethesterone which I have been prescribed for prolonged heavy clotting periods do they help ? Last month they stopped a 21 day period but Dr only told me to take it for ten days and now I'm back bleeding.i just don't know where to start please reassurance needed no scares please many thanks Michelle xx

[JeanOsborne]

Hi the lesion on bladder could very well be endo and could cause the symptoms you describe. The ligaments are what supports the uterus. The thickened lining could indicate adenomyosis which is where endometriosis grows within the muscle wall of the uterus and this could explain the prolonged heavy bleeding.did they say how big the endometrioma is? And are you being seen at a BSGE centre?  I know how overwhelming it can all be so if you need any advice or just want talk I'm here.

[Shell1967 in reply to JeanOsborne]

Hello tHankyou 😊I am only with my local hospital as only got told Wednesday.what is a lesion on bladder could it mean a endometrioma sitting on bladder ? My womb lining was only 7 mm in feb scan so was fine then but I've been taking norethesteone to stop bleeding so not sure if this caused my womb lining to thicken but I started a period the day after so womb lining is shedding.no suggestion of adenomysis on mri.but my uterus is enlarged at 10.4cm.my endomterioma is only 20mm X 13mm and 2 smaller ones next to it.my periods have been regular up until feb and March spotting and heavy period but I'm a worrier and Dr said stress alone could have done this.thankyou xxx

[JeanOsborne in reply to Shell1967]

Hi Michelle endometrioma are generally on/in ovary. A lesion is like scarring caused by endo. If there is endo on or near both bladder and bowel it can effect them. I had a 11cm endometrioma on/in left ovary which was putting pressure on bladder. Had hysterectomy (due to adenomyosis) with removal of both tubes and ovaries along with excision on 3rd of March. Have they suggested what will happen next? My best advise would be excision by a specialist rather than a general gynaecologist, as you would have a higher chance of remaining endo free.

[Shell1967 in reply to JeanOsborne]

Thanks I have to have cystoscopy and hysteroscopy to check bladder and womb lining and follow up with gyn.i don't have much pain at all just heavy periods and frequent weeing 😊me I said both sacro ligaments right ovary and lesion on bladder so if it's not endonetrioma on bladder what can lesion mean ? I'm confused lol x 

[JeanOsborne in reply to Shell1967]

The lesion on bladder is scar tissue caused by endo.

[Shell1967 in reply to JeanOsborne]

So there may be scar tissue on my bladder that Mri saw? But there must have been something on my bladder first to them get scar tissue  ? I'm sorry I'm so new to this and trying to find out through all of you who have the experience of it thankyou so much xx

[JeanOsborne in reply to Shell1967]

It's endo Hun . Basically in lay mens terms when you have your period endo cells become inflamed which can cause very small blood vessels to burst and bleed. This then spreads the endo to other places Ie bladder. It can then form lesions(scarring) and adhesions which are like a film or cobweb and can stick organs together. It takes a while to get your head around it Hun . So don't worry I remember what it's like . I was only diagnosed last July.

[JeanOsborne in reply to JeanOsborne]

Hi Michelle , Lindle explains so much better than I ever could. Please listen to her as she really does know her stuff. We'd all be lost without her help.

[Shell1967 in reply to JeanOsborne]

Thank you so much xx

[Shell1967]

Thats great thank you but could I have cancer of bladder as it's said cystoscopy to check lesion on bladder ?! it is not clear of its endo just said lesion ? I'm Scared now but it did say sacro ligaments and right ovary endo so I'm

Hoping this is what it will be too in bladder ?! I wee frequently especially at night xxx

[Shell1967]

Thank you and yes I took norethesterone for ten days and stopped Sunday and started a period or withdrawal bleed Wednesday and I was very heavy but it's lightening up now but first two days just like a normal period heavy heavy with clots !!! My womb lining was thick at 11 mm on mri Monday so hopefully it's shed a bit lol thank you xx

[Hidden]

Hi Lindle   

Sorry to gate crash this chat but I saw the word adenymosis and you seem to know a lot . I'm new to site and have been told by lady doing scan that I have it . Which would make sense with symptoms I had for years . Heavy flooding periods , pain , pain and leg pain just to make it worse .

I have been given the mini pill to take tried cerezette but spotted constantly with pain on my left side . They changed me to micrnor which I've just taken for two weeks less spotting but a tummy ache that I hope goes .  I also think I have ibs that is getting worse due to the stress of all of this . I suffer from really bad anxiety and have a hospital phobia . Every website I've looked at says hysterectomy is the only answer to get rid of pain . Do you or anyone know if mini pill can work for this ? Or have any tips at all ? 

Xxxxxx

 

[Shell1967]

Yes I'm not concerned it was 11 mm and that was the day after I stopped notethesterine after ten days x

[Hidden]

Yes I live in London .