DIE

[Endo1978]

Hi just been diagnosed with deep infiltrating endometriosis . I am really worried.

[Moon_maiden]

What did they say with diagnosis, it seems to vary on degree.

[Endo1978 in reply to Moon_maiden]

Hiya my MRI shows that I have tiny multiple cysts on uterus, deep endo uterus, colon and all around ligaments ☹. I have been going to GP for past 20 years on and off with bowel and period and pelvic pain issues but have always been told its ibs or just painful periods and robbed off with medication etc. I also get severe lower back hip and sciatic pain. I have just started the mini pill but pain is bad every day. I have to now wait for a follow up appointment with endo specialist. I feel numb and really low about the diagnosis as I know there is no cure. My anxiety is so so high with the pain. I cant live like this. I have 1 child and I am 43 so maybe a total hysterectomy may be my best option?

[Moon_maiden in reply to Endo1978]

I hope you don’t have to wait too long, have you checked on progress? Worth making sure you are in the system and on any cancellation list if you can make short notice appointments.

The pain consultant suggested amitriptyline a few weeks ago, I’m trying to work out if it’s beginning to work. Friday slept through, yesterday not so bad. Although last night not as good, clearing rubbish from car and don’t feel as though I’m dying...yet!

Have a chat with GP about pain relief.

Try not to worry until you see the specialist, easier said than done I know. Research can give too much of a wide range sometimes. If you haven’t started making notes, jot things down as you think of them. You will time to refine them. If you can afford it a private consultation could be a way to go. I still consider it money well spent.

[Endo1978 in reply to Moon_maiden]

Aww thanks so much as much as i wouldn't wish endo on anyone its nice to know im not alone. I have been on amitriptyline for 2 years for ongoing back pain..... I may increase the dose. Going to phone gynea secretary tomorrow and give them a nudge xx

[Whoisthis in reply to Endo1978]

Whilst that must of been a shock hopefully they will now take you seriously and put a plan of surgery in place, I took myself private and had my excision surgery on the 9th June, as the waiting list of endometriosis is so long at the moment.

The hysterectomy isn’t a cure for endo I’m afraid it may help with some of the symptoms, but unless they excise the endometriosis from all other areas it can still form after a hysterectomy.

I think everyone of the boards will say you really have to keep chasing hard for surgery and to be heard .

Hope you are ok

[Moon_maiden in reply to Whoisthis]

That’s one of my questions as well about afterwards and endo.

[Moon_maiden in reply to Endo1978]

I wouldn’t either, wouldn’t matter who it was.

I started on 10mg, he said I could increase to 2/3 of those if need be. Speak to GP about it, sometimes they can be helpful. Although if they’d have suggested it I’d have said no.

Let us know how you go with gynae 🙂

[Endo1978 in reply to Moon_maiden]

Yes i will keep you updated and Thanks for the support 😊

[Laura009 in reply to Endo1978]

Hi. You would like to think a total hysterectomy would solve the problem wouldn't you? But it still wouldn't cure the endo in the colon and ligaments would it? My 21 year old daughter's recent MRI scan showed traces in her womb and bowel. She has her 1st gynacologist appointment tomorrow to discuss laparoscopy and treatments. I really feel for you ladies suffering like this. It's given me a real insight of what my daughter may have to face further down the line. I guess it's just an old wive's tale that l was told...... endometriosis will go if you have a baby?? I wish you all well with less pain and suffering in the not so distant future.

Laura xx

[Whoisthis in reply to Laura009]

If you can do all of the reading for your daughter as well she will thank you so so much. It doesn’t cure endometriosis no, afraid it just removes another rather critical surface area that can have endometriosis on it and causes side effects and mental health issues in young women.

So so many wives tales all born from the word hysteria, and Victorian days, hence the name hysterectomy, the Victoria drs if a women was acting a bit strange and moaning about pain would remove her womb! Nothing much changes 🙈

Also a wives tale is that endometriosis is caused by retrograde menstruation, our wombs don’t wander about spraying out cells 😂 we are born with these cells, the create their own oestrogen, and have been found in foetuses, animals and men!

Just do some much reading and whatever happens don’t let them insert the coil (a favourite) give cancer injections to bring on menopause (second favourite) or let a untrained have a go general gynaecologist do laser (ablation) surgery.

Make sure she is seen by a specialist at a specialist endometriosis excision centre if NHS or a private wide excision surgeon.

Excision surgery is the gold standard of care for endometriosis.

And no having babies doesn’t make it go away! It’s a chronic condition, it doesn’t go away, it can just get masked with some birth control, while it’s masked it will continue to grow.

Hopefully with all the right information she won’t have to suffer like so many and can skip the nonsense and have the strength to not be dismissed by the medical profession.

Xx

[Laura009 in reply to Whoisthis]

Thankyou so much for this info. I suggested she join this forum too so she can read all the worries and info for herself, which she has. It's invaluable.

Bless you. Laura

Xxx

[Tillyfloss]

hi. Endometriosis is a rollercoaster ☹ . I had stage 4 DIE, full frozen pelvis and cysts, I had to push but the specialist was fantastic, my MRI wasn't accurate and it was even worse but the surgery made things so much better and with ivf we had our little miracle 😊. What pain killers are you taking? Have you heard of the Endo diet? Both good pain management and diet got me through to surgery. I have low level pain for a few days a month these days so having a baby has reduced it for the moment but I know people who end up even worse during pregnancy so it doesn't help everyone. Xx

[Endo1978 in reply to Tillyfloss]

Hiya Thanks for your reply. I take regular paracetamol, ibuprofen and amitriptyline and codeine if needed! Did you have excision surgery for yours? So pleased you had your little miracle. It took 3 years to fall pregnant with our daughter........ I didn't know at the time but she was our little miracle xx

[RedbudTree]

I’m so sorry to hear this. However, there is one upside: you advocated for yourself and your body even when healthcare professionals didn’t really believe you, and at last you got a diagnosis. While there is no cure, you now will have more information to try different options and see what works for you. You also may be eligible for clinical trials because you have an official diagnosis. Don’t give up! It’s really, really hard, but you’re doing the right things.

[MissFR]

Hi there , I also have endo... the anxiety is horrible the pain is worse ! I was diagnosed 6 years ago and I have had one operation, I take codyramol almost daily , I’ve just referred myself to a pain specialist so fingers crossed!