What's normal?

[Solel73]

Hi all, and thanks to all that respond - in advance...

I was diagnosed with endometriosis, based on symptoms only, 4 years ago.

In that time I've had numerous scans that showed nothing, I've had a biopsy that, after a year, I was told wasn't no sufficient, I meet consultants who tell me they're my consultant who I never hear from again. My gp, admitting little expert knowledge, has tried me on depo-proceda and northestirone...neither worked - depot was 6 months of watery, pink blood - constant, the latter simply isn't doing anything.

Anyhoo, my current situation is that the depot has worn off and the clots are eking revenge. In one week I have flooded 70, gel based, towels. I am passing painful clots the size of tangerines - sometimes up to 5 at a time, and the minute I stand up from the toilet, the blood is flooding again. I'm working full time with children and this is now reaching the point where I just. Feel. Depressed.

I'm having to leave work and go home for showers, constantly excusing myself from meetings, I can't get from my office to the toilet and back without a return trip, I walk the corridors sometimes with blood running down my legs - but I'm not getting support and don't know how to control or manage this - I actually went into one meeting, knowing it was long, and lined myself with 5 towels, just for security.

This isn't tenable. I don't even know what my questions are because at the moment I'm just overcome

[Char411]

I’m so sorry to hear this. Has your doctor considered Adenomyosis?

[Starry]

I've read of some ladies taking tranexamic acid or GnRh hormones ( chemical menopause drugs like Zoladex) but really you need a proper diagnosis. Adeno, if it is that, is particularly tricky to diagnose I believe as a biopsy might just be taken from a health spot.

This site may be of use. m.adenomyosisadviceassociat...

You could see if your GP might refer you to a BSGE Endo centre as the problem is refractory and you have not had adequate assistance from general gynae. Alternatively you could look into paying for an initial private BSGE consult with a view to going on to their NHS wait list if they are happy to do so, you'd need to check with their secretary.

[PJ11]

This is awful it's not fair your going through this, I've had endometriosis for about 15 years and in pain now, I usually get pelvic pain and abdominal and stabbing pains but now I've recently started getting pains under my ribs that lasts a whole day and I've had it all day 😢

[Solel73 in reply to PJ11]

Is it definitely related to the endo? I've had similar since December and my doc prescribed me ibuprofen gel, which sometimes helps, but no relationship to endo was considered or explored.

Hope you find some relief x

[PJ11 in reply to Solel73]

I really don't know if it is it related, it was only when I read other people on here had had the same type of pain under the ribs I thought maybe it could be. I'm going to see my GP tomorrow to see if he knows what it could be, thanks x

[Solel73]

Thanks all,

Haven't heard of Adenomyosis before, but reading the symptoms, I don't feel like I can relate.

I had a gp once who was concerned that there may be significant scarring that is causing the clotting - and it completely made sense! We lost a baby in 2009; the loss was so sever it resulted in my being kept in hospital and undergoing 5 emergency d & c's - because of significant and dangerous clotting. It was causing me to black out and I was getting sickness, dizziness and severe sweating....I get this in reduced doses still when I clot and the clotting has been since this episode.....however, no consultant will ever entertain this outlandish proposal from a mere family doctor and so I am here....worse than ever and with no confidence in my diagnosis.

Reading the comment above, a private diagnosis might be the route (where to start?!)...at least I'll be paying someone to listen to me!

Thank you ladies x

[Ugne]

Hi Solel73,

Bleeding so much sounds really worrying, it can eventually make you anaemic; lining yourself with 5 towels isn't normal, i'd go straight to A & E if i was in such a situation.

Seeing an endo specialist from a BSGE center may help out to find the root cause of your bleeding, see which one is nearest to you, and ask your GP for a referral: bsge.org.uk/centre/

Hope this helps, take care of yourself x

Ugne

[Solel73 in reply to Ugne]

Thank you so much.

My partner has been begging me to go to a&e, but I keep thinking they'll say it's just a period - so i don't. I'm back at my doctors tomorrow...if I can make the drive.

I'm looking at bsge and will discuss with my doctor; it's not a centre I'm at all familiar with / aware off x

[3caramel7]

Do you know the results of latest blood tests? Have they done a ca125? What were the results of a scan? Lap?

[Solel73 in reply to 3caramel7]

I'm on this merry-go-round of appointments to see consultants who take notes - do internal scans - carry out scrapes - tell me they'll see me in 6 months an de never do. Then I o to my docs and he promises to write formupdates. I wait another 6 months. Then my doctor recommends he consults a different hospital, but I won't be a priority because I'm choosing to change hospitals. I had a biopsy over a year ago and it was agonising, I begged him to stop and he refused, saying he was almost done - after a year of waiting my doctor told me last week it was my fault for stopping the biopsy - but he didn't stop! There have been no blood tests and no laparoscopy.

[3caramel7 in reply to Solel73]

I'm suprised that you have had all these problems and nobody has done the basics. Mmm. Actually I'm not. Well I don't think it would be asking too much for a basic blood test with hormones and a Ca 125, Ultrasound and a Lap. This should be all done on the NHS. You shouldn't have to pay for it! Health Insurance or not! If the GP is not being helpful or is not too sure about endo, bring somebody with you the next time you go to the GP to emphasize the point!