No one is listening to me!!: Need help... - Endometriosis UK

Endometriosis UK

69,898 members • 51,852 posts

No one is listening to me!!

laurademi profile image
laurademi
•11 Replies

Need help!!

been back to the doctors again as having symptoms of a water infection but no infection doctors have said they don't no what to do with me. Sick of going round in circles 😞 they said they might refer me to gynaecologist again but last time I went I was made to feel like shit. The doctor was awful and he said periods are suppose to hurt!! And just take paracetamol. Last time I posted someone told me to write all my symptoms down to inform the gynaecologist when they occur and for how long, I did this and he wasn't interested in talking about my urine and he signed me off!!

I just feel like no one believe me!!

I'm going to the toilet every hour which isn't normal for a 23 year old and its embarrassing as I work with children so can't just leave the room.

please help!!

Written by
laurademi profile image
laurademi
To view profiles and participate in discussions please or .
Read more about...
11 Replies
•
Summer143 profile image
Summer143

Look up Interstitial Cystitis, it can seem like an uphill struggle to get an actual diagnosis so you need to be stubborn and stand your ground. My GP told me only people in their 70s get it and that's after I had an actual diagnosis from a specialist!! Also to bear in mind that if you have endo you are at a higher risk of having IC. I too went through the daily sttruggle of having to go to the toilet all the time and its miserable. I was diagnosed quite quickly as I am fortunate enough to have private cover through work. Its a nasty condition which is not curable but can be managed with meds and regular bladder installations. I have also had a lap and stage 2 endo diagnosed and removed but it has come back and after another diagnostic lap has come back and is now on everything.

laurademi profile image
laurademi in reply to Summer143

thank you for your reply one of my doctors mentioned ic to me but didn't really say how I can cope with living with it. When I asked my gp if I could have Endo she said yes I could have it but the treatment is being on the pill and tablets for period pain as I asked if I could have a lap she said she wouldn't put me through it but I could have it on the bladder. Its hard as I work on supply so I can be all over with people I don't no.

sorry to hear that it cant be easy.

AndreaClare profile image
AndreaClare in reply to Summer143

Hi, do you know if IC shows up on urine dip tests? Ive been struggling with regualr water infection symptoms for years. Ive recently had endo on my bowel removed and was told that the endo would have been pushing into/irritating my bladder wall and this is what caused my pain. I struggle to believe this as much of my pain and symptoms of water infections is very low down, almost in my urethra, Ive had many urine dip tests done and they have also been negative!

laurademi profile image
laurademi in reply to AndreaClare

not sure they have never said, I do really bad it burns like inside like it hard to explain. Its so frustrating knowing there is something not right, hope your op has help!

Summer143 profile image
Summer143 in reply to AndreaClare

No it does not show up on a dip test. All results always come back as negative, that's why antibiotics don't work. IC is a chronic inflammation of the inside of the bladder and can only be diagnosed by cystoscopy and bladder distension. Google COB foundation website, there is a lot of useful information on there. Don't whatever you do assume you have a urinary tract infection and take cranberry juice as this just aggravates the bladder even more.

AndreaClare profile image
AndreaClare in reply to Summer143

Thank you Summer, I have had a cystoscopy however this was carried out at time when I had no symptoms / pain, I will look up IC and see if it can only be seen when it is aggravated! I have been told time and time again that my pain isn't coming from my bladder and it is so frustrating because it's my body and I know that it is! :(

Summer143 profile image
Summer143

You need to ask your GP for a referral to a urogolist or a uro gynae. I wasted so much time taking antibiotics for what they thought were UTIs, each time the urine samples came back from the lab as negative. You could also try cutting out caffeine, chocolate, alcohol, tomatoes, spicy food and citrus fruits all of these are not good for the bladder if you do have IC.

laurademi profile image
laurademi in reply to Summer143

I asked to br referred to a urologist but he said that a gynaecologist is where I would be referred as they look into the bladder. Ok thanks I'll try that.

Stellauk profile image
Stellauk in reply to laurademi

You need to see a gynaecologist with sub speciality in uro gynaecology. Not just a general one.

Carmensuga04 profile image
Carmensuga04

I would definitely keep digging until you get answers! Don't give up. I have this same problem on occasion. It feels like my insides are rusted and trying to flow but can't. I use d-mannose 500 mg on days that I'm having problems. I'm sure other sites could explain it better than me but its a sugar that grabs onto bad bacteria in bladder and urethra and then you pee it out. Also eat right and buy yourself some good probiotics in pill form take as directed. This stuff really works for me. Best of luck it can be a bear trying to figure things out.

laurademi profile image
laurademi

thanks for the reply I'll see if it help

You may also like...

No one seems to listen to me

I’m just starting to doubt myself and think maybe i need to just get on with it and it’s just me...

eventually some-one's listened... 3 years later

dream. The consultant sending a request for my doctor to refer me to himself, the consultant is...

My doctor won't listen...

Hi, I've just turned 28, and I'm suffering with symptoms that I believe could be diagnosed as...

GP still not really listening to me, what can I do?!

consultant, but she said I can't ask for a specific consultant. After going through all my symptoms...

Finally! Someone listened!

Hey everyone, I just wanted to share that I had my private appointment with the BSGE registered endo