Feeling scared

[AngelaPyke]

Hi I'm Angie from the UK, I've been suffering with endo for 10 years. This year has been a bit of a weird one with sudden pain spreading across my pelvic floor and affecting my mobility. The bleeding started to last upto 3 weeks so I went to my doctor and asked for a ablation. I've been to the gyno who took samples, I had an ultrasound on Tuesday and this morning they've sent through a pelvic floor xray appointment for next Friday.

[Starry]

Could you have developed Adenomyosis?

[AngelaPyke in reply to Starry]

I've not heard of Adenomyosis?

[NH88 in reply to AngelaPyke]

I think its the medical term for extreemly painful periods

[Starry in reply to AngelaPyke]

It's the medical name for when Endometriosis is growing in the muscle layer of the uterus and often characterised by heavy bleeding AngelaPyke andNH88

centerforendo.com/adenomyos...

[NH88 in reply to Starry]

Ahhh then thats another term my gp is seemingly useless at using. Never mind.

Thankyou for the info starry. X

[NH88]

Take a deep breath. And release it slow. You are here. You have done the right thing and sort medical help and they are there to give you answers.

It could be a number of things but as i am not medically trained i cannot give you any ideas as to what it could be and its easy for me to tell you to not be scared. Its not happening to me its happening to you and it sounds frightening. Just remember panicing does not help you, feeling scared is natural but keep breathing in and out. Dont think about what it could be...wait and find out what it is. Then face it head on and say to it "Right. How can we sort it."

Your strong. Youve prooved it by coming here and wanting to talk.

You are not alone.

Head up. Good luck and let us know how your appt goes. X

[AngelaPyke in reply to NH88]

Well I got another letter from the hospital which should of come before my x-ray appointment!! Apparently they couldn't find my Mirena coil when I had the ultrasound!! I hope it's just fallen out :/

[NH88 in reply to AngelaPyke]

I had a friend that was fitted with the coil. It fell out a number of times.

It couldnt have gone anywhere else, i dont think there's anywhere it could have gone but down and out.

An ultra sound doesnt show up everything and it depends on who is reading it as to what they can find sometimes.

Was it an internal ultra or external? Im going on the assumption that it was external.

Is the coil you have the one with a hormone in it? Sometimes it can be the hormone that can cause you to be unwell. My friend had the injection and bexame rather unwell on it and was bleeding continuously untill she went to the gp and had to get something to reverse the efdwcts of the hormonal injection. Shes fine on the pill though.

Did the hospital want you to go in to check the coil? Maybe you should ask them to to give you piece of mind.

[AngelaPyke in reply to NH88]

Well no sign of the Mirena coil after the x-ray today and yes its the one with the hormone. So I'm thankful it must have fallen out! I got referred to the gyno as I wanted to have an ablation so I've had an internal and external ultrasound alongside the x-ray. Now it's back to waiting to see what the gyno says and if I am able to have the ablation. Failing that I'll go for a hysterectomy as I'm 46 now and do not want anymore children.

[NH88 in reply to AngelaPyke]

I wish you luck if you are going for a hysterectomy, especially if its on the nhs. The waiting list for this proceedure is really long. And they may take issue still with your age. (Personally i dont think this should be the primary refusal reason)

Let us know how it goes.

[Starry]

The xray will find it if it's anywhere it shouldn't be, though that's extremely rare. An other possibility might be Endo or surgical adhesions tightening up as they age and pulling on internal organs which they can do over time.

[AngelaPyke in reply to Starry]

Yeah no sign on the 3 x-rays they did phew!!

[NH88 in reply to Starry]

You are very knowledgeable. Are you in the medical profession? Or just really up on gynaecological information?

[Starry]

Not at all and I'd always recommend that you do your own research about your own circumstances rather than take anything as a given.

I'm a business analyst by career. I've just been very sick for 18 months laid up with a fairly complex severe endo case and had 2 surgeries now so have just experienced quite a lot of the things that Endo subjects you to. Though there are plenty of ladies with worse cases, whom I have the utmost admiration for.

I was misdiagnosed in general gynae with Adeno ( after my GP had found a bowel nodule) and told a hysterectomy was a cure by a private Consultant with dubious ethics. Thank heavens I was put right by people here and found my local BSGE centre (just up the road from the first guy). Otherwise I'd have had an unnecessary major op and still had my endo plus all my bowel and other symptoms!

It made me not blindly trust what I was told and as I've gone on my personal Endo journey I did my own research looking for whatever actual evidence I could find so that I was as empowered, as in control as I could be and making informed decisions as a patient together with my Consultant, rather than being told what to do. I've been very lucky with him as at times it's probably made me a rather frustrating "customer".

Having had my skin saved thanks to this group it's nice to give back and try to help others to do the same, to get the best treatment they can and escape potential pitfalls with Endo being so poorly understood still.

[AngelaPyke in reply to Starry]

Sorry to hear its had you laid up for 18 months, that can't not be much fun! I'm glad I work for myself and can take time of as and when I need to.

[Starry in reply to AngelaPyke]

Thanks Angela. It's not been an easy ride and may yet have to ditch corporate jobs at some point.

Take care of yourself xx

[AngelaPyke in reply to Starry]

Can your partner support you if you didn't work?

[Starry in reply to AngelaPyke]

Yes if it came to it, though retirement might be a struggle. But it's good to work for my own self esteem so I am really hoping it doesn't come to that.

[NH88 in reply to Starry]

You are a very brave lady.

I admire you. Its good to know people like you are here looking out for others. Thats also what i would like to do. Help others with this problem if i can through just sharing my own experiences.

I never advise. Just listen and reply. Always stating that although the experiences i have had and the process i had worked for me...that its a personal thing and people shoukd always see a professional. But that it doesnt mean you cant look at researh yourself and no matter how small or silly you think a question is. Ask it.

Xx

[babykaren]

Don't have a ablation I had it was. Great for 15 months than was hell I've recently had hystrcomty an feel brilliant x

[AngelaPyke in reply to babykaren]

I'm not quite mentally ready for a hysterectomy so that's why I'm having the ablation.

[NH88 in reply to AngelaPyke]

If you ever want to talk about it then let me know.

Not just about a hysterectomy either. X

[babykaren]

I wasn't either Hun but ablation left me in severe pain I was in out of hsp with reapeated pelvic infection so had no choice good luck Hun x