2nd cyst yet I'm worried they still won't listen.

[ValkarieCain]

Right... lets attempt this again as I lost the first one...

Hi, I'm 20 years old and have been suffering with symptoms since my periods started at 13. I started going to the doctors and after almost two years of being heavily medicated with painkillers, being told it is IBS and having unsuccessful internal and external ultrasound scans, I was sent for an exploratory laperoscopy whereby they discovered and removed a 5cm ovarian cyst at age 15. Even though my symptoms persisted; bloating, pain during bowel movements, pain during sex, heavy and extremely irregular periods, back pain ect they refused to listen to me because in their eyes, the problem had been removed and resolved.

I since had a child and moved 120 miles away and as soon as I had my child, the problems had gotten worse. A year ago I was sent to a gynecologist at the local hospital who did a physical examination internally and externally and proceeded to tell me to "have sex in a different position" I completely lost my temper at her and she finally agreed to send me for an ultrasound which I sadly missed due to other problems in my personal life.

About 6 months ago I started my period as normal but it just didn't stop... it has been like a backwards period; bleeding all month apart from 2/3 days of being super light or not bleeding at all. The doctor prescribed Mefenamic Acid for the pain and Tranexamic Acid to prevent blood clots from breaking down too quickly and to prevent hemorrhaging. I didn't see this as a long term treatment and whenever I didn't take them for a day, I would start bleeding again. Also, the pain got 1000X worse whilst on this medication, as if my body was punishing me for not letting it bleed. I ended up in hospital with severe pain, and by severe pain I mean as bad as 6cm dilated labor pain, and my son was a back to back labor. Sadly, they just dosed me up on pain pills and told me to go back to my doctor for a referral.

My doctor begrudgingly referred me for an ultrasound after I refused to carry on taking the medication that he wanted to prescribe me with yet again despite the affect they had. I had the scan two days ago and I had a gut feeling that he had found something when scanned above my pubic bone for about 5 minutes before saying the scan was done with out checking anywhere else. He also didn't tell me to do the usual "call the doctor in a week for your results", I got advised to "make and appointment to DISCUSS my results with the doctor in a week". After that, I naturally took a peek at the doctors screen to see the word "cyst" and the number "4.2" on the screen.

So I have another cyst... which being my second problematic cyst at my age is a red flag in itself, but my mother and my aunt both suffer with endometriosis too, which means that it runs in my family. I'm worried that the cyst may rupture and cause further complications, I'm worried that yet again they will laugh away my suggestion of endometriosis... I don't know whether to ask the doctor at my appointment next week to refer me to an endometriosis specialist center which I have found that isn't too far away or to wait to see what a standard gynecologist is going to suggest....

Sorry for the essay but thank you to anybody that has taken the time to read it, and further thanks to anybody that takes the extra time to offer support and/or advice. I really need and appreciate it.

[Down]

I hope your ok lovely.

I no how ur feeling i didnt sleep at all last night i was in agony. Defo defo ask i think we have to be so pushy wer r health is concerned. Just tell them u cant cope anymore and you need help xxx

[ValkarieCain in reply to Down]

Well I'm finding it difficult lately, coping with the pain whilst looking after my son, the home and college... I'm not very good at being pushy with my doctors unless they have done/said something to really upset me.

[Down in reply to ValkarieCain]

You cant go on like this tho and why should you. The drs r there to help us xxx

[ValkarieCain in reply to Down]

I'm constantly worried that I might be wrong, and it gets me so down, the idea that I just wont be listened to and that is a trigger for my mental health too...

[ValkarieCain]

Just called the specialist center... woman wasn't exactly nice... she was quite sharp and said "Well what are your symptoms? A cyst doesn't mean endometriosis. What is it that makes you think it's endometriosis" I started to explain with "Well there is a family history of it..." she cut me off with "a family history doesn't mean you've got it"...

That was a great start that. Anyway, I listed some of my symptoms and then she told me to tell my doctor specifically who it is I should be referred to and hopefully I will get a referal x

Oh yeah, she also said you generally need a diagnosis BEFORE you get referred there... what about us lot with out a diagnosis that NEED one?

[Kirstyjane]

Hopefully she didnt mean you need an actual diagnosis as your gp cant do that! I think she probably just meant that you need to get your gp to believe that your symptoms are enough like endo in order for him to refer you to them. Thats how it worked for me any way. My gp referred me to a consultant on my request and that consultant then referred me to an endo specialist.

Its really frustrating but just keep plugging away and you will get there! Unfortunately these things just dont happen overnight. Wishing you all the best xxx

[ValkarieCain in reply to Kirstyjane]

I know things don't happen over night, I've been waiting 7 years so far... Yeah I'm hoping that she doesn't mean that either because they are the only specialist in my area and due to other life commitments and my inability to drive, I don't think II could go any further out. He's a specialist in late stage endo see, that's why I'm concerned, he may not have as much experience in diagnosis as he does treatment. x

[Down]

Ur joking thats ridiculous.

I no the feeling if no1 listening to u and believing u. Im pretty sure my mum thinks im a massive hypocondriac. In honesty shes a big reason iv cancelled so many laps i feel like if they dnt find anythb shes gunna b like i told u. Tbh the pain is so bad now tho that i no im right i obv cant guarentee rndo bt theres sunthn wrong xxx

[Kirstyjane]

Oh dear thats an awfully long time........ I hope you can now finally make some progress xxx