Hello 😊 I’m new here but wanted to ask advice.
I’ve had problems with heavy periods since they started at age 12 ( I’m 31 now) and every month they get heavier and more painful.
I’ve been back and forth to gynae the last year because the pain has got so bad that it literally stops me living my life.
I had another scan today and aside from a cyst on my left ovary that was first seen when I was 21, nothing and I’m gutted because gynae have discharged me and I feel so fed up.
My doctors said I’m now classed as a chronic pain sufferer and that I need to be referred to the pain clinic.
I’m so lost on what to do.
I have shooting pains up my left side, my hips and pelvis constantly ache, I need to go for a wee every 40 mins and I can’t remember the last time it didn’t hurt.
Hi, so sorry to hear you are going through this as I have all the same symptoms as you and I really do feel for you! I was diagnosed with endometriosis when I was 21. I had severe heavy periods & I had scans & xray but I was lucky enough to see a gyne surgeon who said that endometriosis &/or adhesions rarely show on an ultersound scan & xray. They usually need to do a laparoscopy to have a look round to see what is going on.
Mine is a long & complicated story so I'll make it shorter for you. I had laparoscopy after laparoscopy where they devided adhesions and the removed the "chocolate cysts" and anything else that needed. I had a bowel resection as part of it had died due to deep endometriosis & bands of adhesions. I ended up having a full hysterectomy but I got no relief because the pelvic adhesions are so bad that I have had 3 large open cut surgeries ( I forget the correct name!) and I am in chronic pain constantly in my left hip & side. I'm constantly going for wees & I get stabbing pain & like electric shock pain too.
I could give you the name of the gynaecologist I saw who is just the best in his field & kind of point you in the right direction of where to go next. I know that feeling when you know there is something wrong with your own body but it feels like you are being fobbed off & you're not getting to see the right people about things. I would be happy to communicate with you further if you wish?
I feel your pain!!! It's true endo and adhesions rarely show on scans it needs to be diagnosed with a laparoscopy.
Like you mine is a long history, severe periods and pain (aged 12yr) lots of tests, finally diagnosed with endometriosis, sadly hysterectomy aged 26!! Bad decision they left my ovaries due to my age!!!!
Then came the endless cysts and surgeries before I know it 12 surgeries!!
Next came the adhesions, bladder, Bowel, abdomen and pelvis. And More surgeries to separate adhesions. Looking back I can hand on heart say I trusted those doctors, but they destroyed my insides to the point I am left with endless pain, Dysfunctional bowel/bladder, severe pelvic spasms, I could go on but it's too upsetting!!!
GOOD News!! Have accepted that this is as good as it gets for me, but I have a fantastic medical team who look after me properly with a comprehensive care plan. If I gave any advice it would be never give up on a diagnosis only took me 30 odd years!!! Research current practices, ask questions and get a second opinion!!
I was always told "your just unlucky" how I wish I was stronger then and told them where to shove their false sympathies!!
OK excuse my rant!!! I wish you good health and hope you have treatment that works for you.
Forgot final point, it is my experience when consultants refer you to the pain clinic it's because they haven't got a clue what to do!!
That’s exactly what they do you get passed from pillar to post, this is my fifth hospital I have been at before I got a proper diagnosis.
That honestly would be amazing! Thankyou! X
Sorry it's taken a few days to get back to you! I've been in excruciating pain as I suffer with fibromyalga too! & I've been in bed for most of the time feeling like I have flu & just binge watching crap on the laptop! Anyway how are you doing? I don't even know where you live but I hope not too far away from Sheffield I have been treated in both the northern general & the Royal hallamshire. The name of the gyne specialist is Mr Ted Baxter & the name of the colorectal surgeon is Mr Ian Adams. I payed to see Mr Baxter about 20yrs ago but that was when you had to find a specialist withing your own boroughs NHS. Now you can choose where you want to be treated. If you go on line you will find more info about them. They have both been present at 4 of my surgeries as all pelvic organs were involved. I hope this helps, obviously you may have to wait while things return to "normal" before they accept new patients. Keep me informed xx
Hi I am so sorry you are going through all this you know your own body and know when something is not right.Reading your post was like reading my own life with pain, i had everything that you had even the adhesions and mine were round my bowels and they were cut out when I had my hysterectomy but they grew back as quick as they grew in. I am 73 now and don’t let anybody say they can’t find anything you need to fight to be seen at hospitals now, I was told everything was in my head and at my age it’s like going back to square one so please get your GP to refer you to a hospital and don’t take NO for a answer you stand your ground
I am also getting the ‘ in your head’ wall shoved at me 😂 but I’m stubborn ha! Xx
Yes I don’t know how many times I had been told that I just wish I had the nerve to stand up to doctors when I was younger that’s why I am telling you not to give in. I had my hysterectomy when I was in my 30s I had everything taken away and had to go onto HRTi was fine after that, and now I have PN and was told it was due to all the Gynecology surgery that I had that has caused this plus when I had my hysterectomy they stitched up my urethra and I was rushed back into the hospital and they said I could lose my kidney but I was lucky that didn’t happen.So that is why I am saying to you you know your own body and you know when something isn’t right so don’t ignore what your body is telling you, especially when you have young children to look after. I hope you get everything sorted out take care