Excruciating pain on lower left side, whole pelvis and that general area.

[Imo_678]

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.

Any ideas?

[Belle46]

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?

[Skye22 in reply to Belle46]

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!!

,

[Janebee in reply to Skye22]

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.

[Imo_678 in reply to Belle46]

That honestly would be amazing! Thankyou! X

[Belle46 in reply to Imo_678]

Hey sweetie,

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

[Janebee in reply to Belle46]

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

[Imo_678 in reply to Janebee]

I am also getting the ‘ in your head’ wall shoved at me 😂 but I’m stubborn ha! Xx

[Janebee in reply to Imo_678]

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

[Imo_678]

Thank you 😊 that does definitely give me some hope because it sounds so similar to me!

I hope your relatively pain free, happy and well currently xx

[Gab63]

Please immediately DEMAND a PET SCAN for kidney and surrounding area. In the very least DEMAND an MRI of kidney and surrounding area.

I suffered torturous pain in this area for over 5years. Screaming pain. All specialists and MD's ignorned my plea's for MRI or PET scan and (as you) was put in the "chronic pain" box.

Finally I found a doctor who immediately sent me to hospital for MRI who immediately sent me for PET scan... only to find a sarcoma that had (by this time) entangled itself with veins and my left kidney. I then had NO CHOICE but to have my entire kidney removed BECAUSE OF THE IGNORANCE OF MEDICAL DOCTORS AND SOECUALISTS WHO IGNORED ME FOR YEARS.

Please... this is not meant to scare you... but I just felt I had to send this note just in case .. I would not wish the pain I felt for many years on the devil himself. And I'm devastated that a perfectly good kidney has now been removed because I WAS IGNORNED and CLASSIFIED AS "CHRONIC PAIN" patient. There is no such thing as "chronic pain". It's a term that doctors use when they are too lazy or too ignorant to investigate physical problems.

I hope you take FIRM ACTION REGARDLESS OF WHAT DOCTORS MAY TELL YOU. INSIST.

I hope your pain relieves itself ... and the tests show nothing and your life is free fro pain or any illness. In the Name of Jesus Christ our Lord and Savior. God bless you. Stay strong and resilient.

Sent with sincere love and healing .

PS. I am totally free from pain since the removal of sarcoma and kidney.. praise God for this.

[Skye22 in reply to Gab63]

There are so many of us out there who put our whole trust in doctors believing wholeheartedly what they recommend and diagnose/misdiagnose.

Our stories are not meant to scare as you say, but to empathise and give support, but more importantly to empower fellow sufferers to ask questions, seek out alternative therapies and get the proper health care that we all have a right to!!!

It is also fair to mention that there are fantastic health care professionals out there who are diligent and provide best practice available, however they are few in numbers!!

Took me 30 odd years to find my care team I knew things were different when they asked "how can we help".

It did take me a long time to put my trust in doctors again but I'm glad I did. I got the proper tests I was listened to and I was consulted by a health care team who put together a programme of care that helps me to manage my condition.

For all my fellow sufferers never give up asking, or lose hope there is a life out there worth living!!!!

[Imo_678 in reply to Skye22]

Thank you 😊 it’s all so new to me.

The support on here has honestly lifted my mood slightly, I’ve been so grumpy because I felt like I’d just been tossed aside.

I don’t think my dr was meaning to side step me, she obviously can’t help if he hospital have discharged me- I just took it personally.

I hope your still doing well x

[Imo_678 in reply to Gab63]

Thank you 😊 that’s something that I’ll definitely look into because on a few occasions now I have wondered, that if they can’t find the problem that maybe this might be a fail safe almost?

I hope your still pain free and well x

[Gab63 in reply to Imo_678]

Thank you. Please stand your ground. I was too weak and alone . I did DEMAND but doctors had already dermedcme "chronic". It was too late till my friend dragged me to see her family doctor who immediately got things started for me. Yes, the physical torture is over and won't come back.. thank God. But the internal pain of being silenced for so many years can still break me. Inonly got it resolved last November. Praying I forgive myself and all others. Good bless and take you by the hand to the right doctors. This inpray for you. 🌺

You don't have to accept this as your fate. It's not. You will be pain free. I know you will. I just know it. Peace 🙏🏻

[Janebee]

Hi have they not mentioned about removing the cyst, when I first had my periods I was like you the pain got that bad every month I was in bed for the first day. I was back and forward going to my GP and hospitals and it was discovered I had a cyst in my ovarie and went into hospital to have it removed and it did help the pain immensely, I am surprised they haven’t mentioned to you about removing it.

[Imo_678 in reply to Janebee]

Hello. They haven’t actually and I have no idea why I haven’t asked ha! Maybe that might be a good next step since my pain is from my left side. Today I’ve taken in a urine sample as they want to rule out infection so I’m hoping after that’s ruled out it doesn’t leave them many corners to go to. Thank you 😊

[NoRegret]

Your symptoms sound like they really interrupt your life. I'm compassionate for you. Are you able to get a 2nd opinion?

I have pelvic disorder after a hysterectomy, resection and full wall prolapse and bladder prolapse surgeries. I have had many tests and now the only diagnosis is ani levator disorder, there is nothing that can be done, I'm in chronic pain and I do see a pain manger.

Don"t give up, there are many more tests that can be done and maybe even surgery.

[Imo_678 in reply to NoRegret]

Thank you . And yeah I have two small kids so I think I’m more worried to keep on going for them, rather than me.

I think I might end up getting a second opinion as it can’t be normal to be inconstant pain and there be no reason

I’m so sorry you still in pain. It’s so debilitating. I hope today was one of the better days? 😊 x

[dingbatqueen]

I'm so sorry that you have been suffering like this for so many years. My story is similar - bad period pain right from the offset and getting worse every year. The only time that I had my pain nearly go away was when I was on birth control pills. But alas, when I hit 32 they refused to give me BC pills any longer and the symptoms came back in full force. Finally I was diagnosed when I was in my late 40s via laparoscopy (they didn't see it on the first lap so don't give up). Endo literally stole 7 years of my life from me. I was in so much pain that it was like being in labor for 25 days of each month. I could only work 5 days at the most every month. I lost everything - my job, my house, my fiance. Finally after menopause I saw the symptoms gradually disappear (it took over 2 years). So don't wait to get treatment because it can become unmanageable. I feel your pain and so can the rest of us. Also the adhesions that develop over the years will complicate matters - just another reason not to wait. If your doc thinks you're a drug-seeker, RUN for the nearest exit and never look back!!! Best of luck to you....<<<HUGS>>>