Any advice please: Could I possibly have ... - Endometriosis UK

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Any advice please: Could I possibly have endo?

BlueRoses profile image
11 Replies

Hi, I haven't been getting anywhere with this so thought it might be a good idea to ask some people that have experience first hand themselves. I have pains in my left side, I've been getting them for so long, they increase towards my period where I am in so much pain I can hardly move, I couldn't stand up to get off the train on my way to uni one time, when I have told my doctor about his pain she rolled her eyes, I'm assuming because she is a woman who has maybe not experienced that she must think I am over playing it, but I'm definitely not. Anyway here are my symptoms:

Pain in left side

Have and painful periods

Irregular periods (can be 2 or 3 months apart)

I get tired easily when the pain is there

I feel as though there is something heavy in my pelvis

Slight bleeding (usually brown) between periods

I feel like I am banging my head against a wall trying to see doctors about what could be the cause, I feel like because I'm young and quite shy talking to me them that I just get passed off. I'm currently in the process of changing doctor surgeries as I have had enough.

I did get an ultrasound a few months ago where they didn't see anything and this is the furthest they have gone to investigate what could be the problem, but as far as I am aware, endometriosis would not show up in an ultrasound unless it had caused cysts, is this right?

I also wanted to ask: in the results from my last smear test I got told I have group b strep, I had to look it up online as the doctor didn't explain to me what it meant, I just wondered if this could maybe be tied in with these problems at all, does anyone else have that?

Any opinions and advice would be greatly appreciated, I am hoping this new doctor will take me more seriously.

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11 Replies
curly1980 profile image
curly1980

Hi there I Am new to the group too and have identical symptoms too yours.

I also was told I have group b strep 4 years ago when I was pregnant, I had to have antibiotics through a drip during Labour which passed through to my baby to ensure she didn't catch it, although apparently its not harmful to the carrier but can be very dangerous to a baby.

I also had abnormal cells from results of smears and had to have a colonoscopy where they laser bad cells away, anyone else the same?

Just thinking whether all these things are related x

Nat18 profile image
Nat18

Hi,

I'm not well up on strep b unfortunately but your symptoms sound very much like it could be endometriosis.

I had suffered for 10 years with painful periods constant pain in my right side,spotting or brown discharge in between periods, a heavy feeling in my pelvic area,extreme tiredness,recurring water infections and fertility problems.

I got fobbed off for too long with doctors saying i had IBS or we cannot find why you are getting pain.

It actually felt like nobody was believing me. The pain got so bad that earlier this year i had to literally beg the doctor to refer me to a gynecologist.

After diagnostic laparoscopy in April this year they found i had quite a substantial amount of endometriosis and a subserosal fibroid growing out from my uterus.

Over the years i had countless ultra sound scans which showed nothing as endometriosis can be hard to see and is best diagnosed through laparoscopy. If i was you i would go to your GP and say you want referring to a gynae consultant as this is the best way of getting it diagnosed.

I hope this helps a little and i hope you get sorted soon.

Take care Nat :-)

Hi,

My husband and I have been trying to have a any for over 2 years. The only reason I found out is after coming off the pill 2 years ago. 6 months after coming off the pill I had these symptoms:

Irregular periods about 42 days apart

Spotting a week prior to my period

Tired all the time

Really harendous period pains first 2 days of my period where I could walk

Lastly not conceiving after 2 years

So off I went to the doctors and they said its "womens troubles" and you've started ovulating here is some naproxen. Then still no pregnancy I went back. They did fertility tests and all were fine. I pushed to be referred as something wasn't right. Then I had my ultra sound and that's when they said "there is something that doesn't look quite right" and I had 2 cysts on either ovary. I had a lap and this is what showed them it was endo and that it was severe!

I would advise for you to go back to another doctor and do not take no for an answer! If you know something's not right trust your instinct.

Good luck

curly1980 profile image
curly1980

Hi Nat sounds exactly the same as me, I don't understand how doctors can get diagnosis so wrong when its obvious just by listening to the symptoms women are getting that it is Endo!

X

Nat18 profile image
Nat18

Hi,

I know it's really frustrating isn't it!! I can't believe it takes so long for doctors to recognise the symptoms of endo!! I am still suffering with it after surgery in Apri, but at least I know what it is now after so long .

Xx

curly1980 profile image
curly1980

I would be more than happy to go in once or twice a year to have the cysts drained which last time it was done left me pain free for a good 5 months! X

BlueRoses profile image
BlueRoses

Thanks for the help everyone, think I might take someone in with me to the doctor since I get fed up and take what they say and leave, so tired of not knowing what the pain is and almost being ignored by doctors.

And your right I can't understand either why it's so difficult for doctors to consider endo when all of the symptoms are there, I've had all the IBS stuff too, and took the tablets for that and changed my diet if just to prove to them that's not what it was, you can tell yourself that the pain is nothing to do with that but doctors don't seem to want to listen to their patients .

Xx

curly1980 profile image
curly1980

Same here was given ibs meds so took them just to prove it wasn't that!

I reckon they say ibs cos there is no surgery or treatment for that so will therefore cost the nhs nothing! X

BlueRoses profile image
BlueRoses

Yep I agree, they don't want to spend the money if they can get away with it and hope people will give up going to them, I ended up starting to feel a bit silly for going back all of the time until I spoke to other people with the same problems. Xx

Hollibob profile image
Hollibob

Definitely look to speaking with another GP in the view to being referred. I was diagnosed in 2010 with stage 3 endo. Go armed with a list of what you suffer with and maybe even a list from the web that outlines the symptoms and tick the ones off that you have!!

Looking back at my history, I'm sure that I had it since puberty, but a lot of women do put it down to the time of the month as we don't know any different!!

Sadly, everyone seems to have had a battle with the drs at some stage knowing your body is not right, but getting someone to take you seriously!!

Good luck x

curly1980 profile image
curly1980

Thats very true hayles

It's a battle to get drs to listen, I had melanoma 2 years ago and was misdiagnosed by 3 Dr! So I find it hard to trust what they say x

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