On the road to a possible diagnosis?

Hello Ladies,

I am looking for anything you can provide really, support, advice, help!

I'm coming to a point where I feel like I've hit a brick wall and having a break down.

My story begins with heavy periods, excruciating pains and abnormal discharge. Lets say this started around 4 years ago...

I plucked up the courage 2 years ago to go to my Doctors to discuss my symptoms. I would have a period every month which would be painful and heavy, causing the embarrassing leaks and the expensive toiletries. When I wasn't on my period I would have brown discharge, sometimes thick and sometimes runny - This is my main problem.

I feel like I don't have a break, I will either have a lot of discharge which requires a pad or a tampon when it's excessive, a period or break through bleeding.

Within the last year I have been given at least 7 different contraceptive pills to try which in some cases have made the discharge/bleeding worse. I have put on weight and I'm recovering from depression. I have suffered with anxiety all my life and this just adds to the stress.

I was given some acids tablets for the tummy pains - Christ - this made them 100 times worse and caused horrendous constipation. I have had many days off work due to all this and no one really understands, they just think 'she's off with period pain, she's a wuss' I can't describe how draining this all is physically, emotionally and mentally.

I've been referred to multiple Geni who just test for STDS - I COULD SCREAM AT THIS POINT. I don't have a sexual transmitted disease I tell them I've done all the tests and they don't listen... they just test away again making me feel humiliated, then they just fob me off it's nothing here's some more medication and live with it.

I went to the hospital for an internal examination by a Geni as I was referred for suspect cervical cancer.... luckily I was given the all clear but again his response was 'You will just have to live with this'.

I've had ultrasound scans, external and internal and cysts were located at one point and they concluded this was the cause of my pains. I had another scan after kicking up a fuss with the Geni last week and I've been told by the receptionist at my GP.. "Normal - No Action" and down went the phone.

I've never heard of Endometriosis before and I'm trying to get as much information as possible so I can put a case towards my GP. Are your symptoms similar to mine? Does anyone's story sound like mine?

Can anyone help me. I don't want to suffer in silence anymore.

I appreciate anyone who is reading my story. Thank you so much.

Evangeline x

[Hidden]

I forgot to add my blood tests show low Iron levels due to all this and low vitamin D- in case this helps?

[Annie-P]

Hi Evangeline

It's so distressing isn't it? IS changing your GP an option? To be told you ' just have to live with this' is not acceptable.

Theres loads of information on this forum & people who have similar stories & experiences, I'm sure you'll find plenty of information and support you need. There are links on the endometriosis UK website which are helpful too such as a diary of your symptoms which you can take to the GP.

Ive not yet been diagnosed with endometriosis, but im certain I have it. Ive recently had a vaginal scan, tests & ultrasound which have all come back clear (this didn't surprise me as Ive read that endo cannot be confirmed this way). I too am in severe pain around the time of my period, fatigue, bowel pain when going to the toilet (& shooting pain through my bowel when I sit down) as well as discomfort anytime during my cycle. I too have taken time off work because I can't stand up/sit up straight/drive due to the pain. I have other symptoms too that don't present each month but I'm certain are all due to endometriosis. I've got my 2nd appointment with Consultant in November, thanks to all the info & experiences of people in this forum I'm going to tell the Consultant what I think it is & what I want/expect to happen next.

Good luck with getting the answers you need

Annie xx

[Lizziemac23]

Hi there, sorry to hear you are having a bad time... It's very frustrating when you feel doctors aren't listening to you... It sounds like your symptoms could be endometriosis and you really need to push to have a laparoscopy done it's the only definite diagnosis... I was diagnosed in 2013 by laparoscopy... Before that all mri and ultrasounds were normal... Tell your gynae doc that you want a laparoscopy... Best of luck x

[India21]

Hi Evangeline,

Sorry to hear you’ve been suffering.

It’s taken me around 7years to get a diagnosis. My doctors fobbed me off, my gynaecologist fobbed me off too. I had to become that annoying patient that nags and does loads of research and comes on these forum pages and then eventually I started to tell them their job. I couldn’t change doctors unfortunately but I could change gynaecologist which helped as my first one was horrible and he told me to just get on with it even without doing any tests. You have to be so demanding and make them do every test possible. It may not be important to them but it is to you and it’s taking over your life. I was determined to be diagnosed with Endometriosis as I had every symptom and I was certain that that is what it was to this day I’m still awaiting a laparoscopy but I have been diagnosed and I’m actually getting somewhere now. My periods are extremely heavy and painful. I have bacterial infections all the time. I have urine infections all the time. I’m lethargic and I feel flu like all the time. The list goes on... be persistent and stay strong!!

[Niamhy]

Hi Evangeline

I’m sorry to hear you are going through this I was recently diagnosed after 10 years of docs not listening to me, telling me it was in my head or it’s all for attention. I was put on loads for medication anytime I complained about the pain they just put me on more & more tablets they didn’t listen to me for years then eventually it came down to a kidney specialist & a gynae doc. The kidney specialist told me that he didn’t think it was anything to do with my kidneys & then I was referred to gynae the times I went there they had no interest in listening to me or even examining me. They just sat & starred at their computer when I was trying to tell them what was wrong the me. Then they kept blaming the kidneys doc who then decided he would make them listen by sending me to have a cat scan & MRI. The cat scan showed nothing to do with gynae but instead my right kidney had flipped upside down but I was told that it wouldn’t cause pain so nothing was done about it. My MRI came back with no results because they MRI the wrong area but never told me that so I was thinking nothing came out of it but they just didn’t want to admit they messed up. I’m low in iron, I also have POCS, under-active thyroid, I recently got diagnosed with endo after all this time. I can’t help you with the symptoms you have mentioned because I don’t have the discharge or heavy periods mine are quite light which I find really strange & irregular but that’s my PCOS. The pain your describing I can relate to as I have really excruciating pain but docs didn’t take me seriously I ended up having to go private he was my last chance because I just felt defeated at this point & when people haven’t been through this hell they can’t seem to understand why you don’t have faith in docs even though I had to fight with docs to take me seriously for 10 years. It’s just really draining how far we have to go to be heard by docs. I have gained a lot of weight which really gets to me but my problem is the pain is 24/7 it’s like a cramping/stabbing pain. Normal people have told me “just push past it” but it makes everything far worse. I don’t know if anyone else feels like this? I’m still on all my tablets they told me there not going to take me of any. The only advice I could give for the pain would be a hot water bottle even though it doesn’t get rid of all my pain it eases it a bit. I hope you get all the answer you need good luck x