Feeling nervous ...: Hi all. I'm new to... - Endometriosis UK

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Feeling nervous ...

Jane2426 profile image
7 Replies

Hi all. I'm new to this forum and can't see a lot due to being new, so nothing's on my news feed! I'm just looking for some advice and maybe some possible answers :/?

I've recently been back and forth the doctors and clinic, I've been having long periods then short periods but always irregular and nothing ever heavy.... although I loose a lot of fleshy looking clots.

I had a examination and internal examination yesterday. Doctor said she could feel something during internal and from my symptoms I've described it points in the direction off Endometriosis & Fibroids. I didn't realise they were 2 different things, 8 believed it was one thing untill I started my research. During the research of last night and today every symptom I've seen is heavy bleeding, but I'm not getting this so I'm hoping this isn't what I may have?

I was told to go back in 4 weeks for another examination and if all symptoms are the same or worse I will be referred for a scan and a laparoscopy?

In the mean time I've been given Mefenamic acid tablets, it relieves the pain but not the pressure, I feel like I'm 8.5 months pregnant when the baby's head drops down and you feel bottom heavy.

Would be greatful if anyone could help with some advice or they're past experiences with same symptoms as me?

Thanks in advance xx

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Jane2426
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7 Replies
Starry profile image
Starry

Heavy periods is a misleading definition "heavy" can include clots or spotting. I never really considered mine heavy except day 1 but get prolonged spotting and do get pain and many of the other deep endo symptoms. Post lap last week i do unfortunately definitely have endo. I thought I might have fibroids as they run in the family but not so lucky. The scan should really help but that dragging feeling is significant.

Jane2426 profile image
Jane2426 in reply toStarry

Oh I'm so sorry to hear that :( did you wait long for it? Only I've read it can take years of going back and forth the doctors?

I constantly feel pressure as if I'm 2 weeks away from giving birth when everything drops. I'm exhausted and when I sit up then I get bad pain!

Oh I thought heavy wouldnof ment heavy periods so that's really good to know, the medication they have given me stops the pain but pressure is still constant, I take 2 .. 3xs a day, I contacted doctor again this morning about pressure and was told to still wait 3 weeks before going back!

Thank you for your reply x

Starry profile image
Starry in reply toJane2426

It went quite quickly in the end as I'm insured I got a referral when bladder symptoms in September tipped my GP off who was clued up luckily. That said I had symptoms from my first period and failed to get diagnosed despite a gynae referral in my early twenties for dyspareunia and a cervix op for abnormal cells in late twenties (I am now 41). So that's a 30 year diagnosis lead time lol! Awareness is improving but you do still have to fight your corner to get referred.

Jane2426 profile image
Jane2426 in reply toStarry

Wow 30 year lead time. That's a fair bit off time, do you know if there are private doctors you could go to or have it all goto go through the GP? I am only 26 I have no clue which way to turn next x

Starry profile image
Starry in reply toJane2426

Your best bet is a gp referral to a bsge endo centre you can go private or NHS . General gynaecologists do seem to frequently lack enough expertise in diagnosis and treatment for endo which is a complex disease requiring a multi disciplinary approach.

Average diagnosis time is about 7 years I believe, but there are plenty like me. It used to be seen as only an older lady disease.

bsge.org.uk/centre/

WOMENHOOD profile image
WOMENHOOD

I've also experienced the heaviness like a baby is about to come out. Turns out I had enlarged vericos veins in the vaginal area got them taken care of and the symptoms are completely gone. The gyn is able to see those while doing the laparoscopy but not very heard of.

Gweeda profile image
Gweeda

I have been convinced for many years that I had some sort of lump down below. Difficulty passing urine and sometimes urine is scarlet with blood. Pooing is also a real difficulty. Kept being told I was constipated yet when they gave me 2x picolax and suppository to get things moving I still couldn't pass anything but was sent home. That was 6 years ago. This year a different surgeon decided to do another lap (had 4 previous) and discovered stage IV endo with multiple cysts and a mass in my pelvis. It's right down low and this has been the source of my difficulty. The mass is 99% likely to be just a large 'chocolate cyst' which is a collection of blood from when the endo bleeds internally.

I'm afraid you really have to get a referral to a specialist centre. I wish I had known that it was an NHS rule and maybe I wouldn't have had to wait 23 years! But I'm off in on 27th of this month for a big op to get everything removed.

The replies you've had suggest multiple ideas of what that pressure could be so I hope you get an answer ASAP and the appropriate care for your condition. Big hugs and good luck! Xxx

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