Endometriosis Issues

[hippiemama]

Just a rant and opportunity to share endo stories as I'm struggling to cope with it!

So I have stage 4 endo which for me includes sharp constant pain in left side, numb legs, dull, firey ache around stomach and lower back, fatigue, mood swings, pain with anything toilet related, pain during sex, nausea, light headedness and of course the dreaded heavy, irregular periods.

Been suffering since the age of 12 (started period at 9), diagnosis at 16 with intention to remove some, but found was too deep in the bowel. Laparoscopy number two removed a cyst, but again (different doctor) couldn't remove due to severity in bowel and didn't listen when I said a specialist was needed! And now due lap number 3 for excision of whatever is there.

Someone tell me there's light at the end of this!

There will be.

But the slowness of diagnosis is still appalling.

Hi,

I have tried to start my own thread but I can’t! I hope you don’t mind me jumping on this. I get the exact same symptoms apart from the numbness in the legs! Please read below, I just don’t need some info please!

I am 20, almost 21 years old. I started my periods at 12 and had a period for an entire year (yes no break whatsoever). I was too embarrassed to tell anyone as I didn’t know if it was actually normal or not, it was only when my mum questioned why I was going through so many pads that I told her. The doctor blamed it on my *underactive thyroid and passed me off with some hormone tablets - these didn’t work. I then went on multiple different pills and with different lengths of time - these didn’t work, I bled through them. I used to have very heavy periods and clots, leading me to become quite anaemic. I had a coil put in and so far so good, but have recently been getting clots again randomly.

Shortly after a few scans, they told me I had polycystic ovaries ( now if you have this you know the doctor will say there’s to different types there’s polycystic ovaries and Polycystic ovarian syndrome... one comes with symptoms, one without ). I have been told different by different doctors some say I have PCOS, some say I just have PO and shouldn’t worry - but obviously I am.

I have spent my last few months in agony with pains, constantly having problems below... not only with ovary issues, I suffer from cystitis and bowel movements and have been chucked away from the doctors multiple times with blame to *IBS however that doesn’t explain the half of it. I also can’t have sex with my boyfriend, it is sooo painful. I’m 20 years old... I feel like my ‘young days’ have been slightly taken from me.

The doctors have said multiple things to me and one said it could be endometriosis. So this is why I have my scan. They told me that I don’t have endometriosis- this is good but it isn’t, I was kinda hoping it would be only so I could put a blame to it all. They said I definitely have polycystic ovaries and that I should also check out my descending bowel? I have no idea what this is but back to square 1 I go.

I just need help, everyone keeps telling me to push for answers but I get turned away a lot for my age. Health issues do run in my family including cancer, diabetes and blood problems and I try to be as active as I can by going to the gym almost every day and eating a good healthy diet but nothing seems to work and it’s starting to ruin my daily life.

It never used to be this bad, only as I have got older. I feel like this is now the end of the road for me with this investigation and I feel like the doctors were right by saying it’s my bowels and it makes me feel stupid but it just doesn’t add up with all my problems! You know when you just know something doesn’t add up within your body? And I’m defo not questioning a doctors knowledge! I know they are clever people, I just don’t know what to do.

I also asked the doctor after my laparoscopy (which was today) why I bleed so heavy so much and all the other problems then and she said that it would be my age and that the other symptoms aren’t related - but they really are! I don’t understand where to go from here.

Paitay

Do not think it is the end of the road for you. No no and no again. Keep going.

You have been well and truly messed around and worse still fobbed off due to your age. You were given more duff info from a frankly uninformed person post laparoscopy as well. As you have all too clearly seen some of the medical profession are well behind when it comes to such issues. Do not think of these people as being all clever; they truly are not and they make mistakes too.

Endometriosis can indeed involve the bowels and many women get misdiagnosed with IBS. I realise now that all my problems with endo (and PCOS) started upon onset of menses at 14; I was only diagnosed with both of these in my early 30s when I tried to conceive and could not do so.

Are you in the UK?. If so you really need to insist to your GP that you are now referred to an accredited Endometriosis Centre rather than a general NHS hospital. Insist this happens. I would also be contacting PALS re your treatment to date in hospital as well because it seems well short of what should be happening here.

Please keep going and seek proper answers; I would also suggest you contact Endometriosis UK; the link is here endometriosis-uk.org/ and they also run a phone helpline.
The link for the BSGE centres of excellence is here www.bsge.org.uk/centre/

What scans did you have done?. Scans do not detect endometriosis if it is present. I have had numerous internal ultrasound scans done and none of them ever detected the vast amount of endometriosis that is located in my uterine cavity. It took a skilled surgeon (endo does not always present typically) and a lap operation to find the endo that had been there all along.

Thank you for the info, I am definitely going to take that on board and get on with that. I have a follow up appointment at my GP next week.
It is just annoying as I am not sure they will refer me to anywhere now after I pushed hard for this Lap and Gynaecology appointment and they’ve come back, as specialists, saying there’s nothing to explain any pain other than my bowels.

Do you think they will refer me to an endo centre if they have said there is no sign? I’m defo going to contact some people because I can’t keep living like this.

I’ve had ultrasounds, internally and externally and have just had a laparoscopy.

I was just wondering also (sorry if this is too much info) I get little bits come out in my wee when I’m getting my pains. They’re like white-ish and not like a discharge I don’t really know what they are but it’s weird. I’ve always thought this might’ve been linked but I’m not sure? When I ask at the doctors they tell me that they’re all different issues and that they don’t have the time to do it all in once sitting but it seems linked. I just wanted to see if you had similar issues with this?

The doctors think it’s in my head. I honestly don’t know why they think I enjoy this so much and want to spend my life at the doctors!

@paitayhill

Endo can absolutely affect the bowels. I am only 22 myself and been through everything you'd mentioned!
For years I was fobbed off because of my age, and you are absolutely within your rights to question their knowledge, because I have found they really don't know it all.

Only stage 1 and 2 endo can be treated through the pill and other forms of contraceptive. I am stage 4 and of course before full diagnosis, they too tried treating me through various types of contraceptive. This lead to a constant bleed for a year. I was eventually put on a pill which wasn't a contraceptive which had the ability to stop the bleeding, I can't actually remember what it was called unfortunately.

I am due excision surgery at some point, this could be months and months due to waiting lists but prior to this on NYE I had an MRI scan. This diagnosed me fully with rectovaginal endometriosis where the intestines, ovaries, bowel, and everything 'downstairs' is completely covered. That was without actual surgery so God knows what the real current state is! - read up on this as it seems our symptoms have been v similar.

Also check out adenomyosis, this is similar to endometriosis and usually again diagnosed through MRI or surgery.

Abdominal and internal scans are usually a waste of time.

Please push, push and push for a diagnosis and treatment as it is a real shitty way to live! I hope you get sorted sooner rather than later ! X

Thank you so much for your support. I honestly am at my wits-end with it all. I even feel like my family are starting to think I am all in my head.

I am glad I am not the only one! I am going to push for something more... it might be difficult but hopefully I will eventually get there.@AttilaTheMeerkat

I hope your excision goes okay for you and all the best @hippiemama

someone else has mentioned about an MRI to me before. I've even started to doubt myself now, and that is the most disappointing part of it all! But we will fight.

Thank you all for your help. I will keep you updated, even if it takes ages! Hopefully this helps someone else too!

Paitay

Keep pushing for answers indeed.

White particles in urine should be checked out medically because this may indicate a UTI.

And no this is not in your head at all!!!. I have suffered not all that dissimilarly either and in my case endometriosis was the root cause.
Do not doubt your own self here; keep being your own advocate here and seek proper based answers. Do look at the websites I have recommended to you.