Chronic pain, no diagnosis

[mantha32]

I have suffered pelvic pain for ten years, I have had internals, pelvic exams, ultrasound scans, MRI, colposcopy and laparoscopy. All yielded nothing. I was told if the abnormal bleeding stopped I would not have the pain so they carried out endometrial ablation. That was 6 years ago. The pain never stopped but the bleeding reduced. I went back to gynae today and was back to square 1. He wants me to have another scan, he said I could have another laparoscopy but there would be a large risk of bowel perforation as it's in the same site. He then said it will probably yield the same results at which point his hands are tied. He ruled out a hysterectomy claiming it rarely resolves pelvic pain and offered to refer me to pain clinic ( or as nurses call it hypochondriac anonymous). The scumbag actually smirked as I left in tears. I literally can think of no way to carry on like this. My family is supportive but I am next to useless. Really don't know what to do.

[Fox_glove]

Why do you have an aversion to pain clinics? If it’s a pain management doctor that specializes in pelvic pain disorders, that’s a good next step because you may be dealing with nerve related issues which typically is their speciality. I’ve gotten great help from my PM doctor, and he only treats pelvic pain patients.

[kalecolbe12]

Have you been in pelvic floor physical therapy?it sounds like pelvic floor dysfunction and muscle nerve related which docs don't know much about...I strongly suggest you go do that ..insist on it...it's a much kinder gentler astmosphere and I know they will evaluate and make you fell much better ..also think about other alternatives like a naturpath and an acupuncturist....I have been in pelvic floor pt for 6 months and it has saved me

[mantha32 in reply to kalecolbe12]

I have had my pelvic function tested. It is actually great thanks to 21 years of pelvic floor exercises. I started when I was first pregnant never stopped. Tests have revealed a specific area of uterine inflammation but they blamed a fibroid. They are now saying there was no fibroid even though my notes describe its size and location 6 years ago.

[lucikam in reply to mantha32]

Please look into Dr. Sarno TMS books, you can read about it online, tms wiki. Doctors never find your answers as it shows they did not find it for 10 years.

[London80]

I would recommend the Curable app. My pain has improved so much over the past few weeks since finding the app. You will see that many people with chronic pain have become pain-free. I have also had pelvic pain with no diagnosis and was despairing that I wouldn’t be able to go back to work or have much of a life. But now I’m improving so much that I’m hoping to go back to work in January.

[Skye22]

It has taken me 30yrs and 13 surgeries to finally get a diagnosis!! I was left a complete mess inside caused by some needless surgical procedures!!

I am left with severe pelvic ,bladder, bowel and abdominal adhesions causing debilitating spasms and pain.

Like yourself after a severe haemmorage from colon consultant admitted that they were severely limited with options on the best course of action as Surgery is completley ruled out as all my insides are fused together (to risky due to complications).

Referred me to pain clinic and my view of this is that doctors refer you there when they don't have a bloody clue what to do with you.!!!!If positive thinking and breathing exercises are all that is on offer I could have cured myself years ago!!!

MY SAVIOUR IS MY SPECIALIST PELVIC FLOOR PHYSIOTHERAPIST!!!!!!

she listened and for the first time ever someone asked HOW CAN I HELP YOU!!!! After numerous new investigations and tests set up by physio apart from adhesions I have a severe bowel disorder, rectococele prolapse, dysfunctional bladder and endometriosis (didn't know it could return).

Currently on painkillers and antispasmodics and receive bladder injections and botox injections into pelvic floor.

The treatment that is most effective is vaginal trigger point therapy with physio it's not long lasting but at least you can have a little respite.

I feel much better within myself as I now know what I'm dealing with, yes I have a lot of bad days but the good days are celebrated with retail therapy and going out for lunch!!! We shouldn't have to chase doctors and demand answers but sadly it is the norm. Empower yourself and demand to be listened to!!!!! I wish you good health and don't give up the answer is out there, stay strong!!!!

[mantha32 in reply to Skye22]

Thank you so much for your reply, I have no idea if we even have this available here, I will be seeing my new consultant next month and will bring it up x

[Sheenahete51]

I went to a pain clinic and it was really good. Very interesting. Although it didn’t make the pain any better itgave me great ways to cope. I also realised after meeting some fabulous people, it could be worse.

[Spaniel28]

Completely understand how you feel. My pain started 4 years ago and I do have signs of adenomyosis on my mri but apart from that most of the many tests and procedures I’ve had done have yielded little result or a diagnosis. It is so depressing and frustrating and that is made worse when you have to deal with idiot doctors like the one you describe. I really hope things improve for you soon.

[mantha32 in reply to Spaniel28]

I plucked up the courage to complain and he has been sacked, I am now under a new consultant and she has this far been great, ordered a trans vaginal ultrasound but is thinking likely Adenomiosis. She explained diagnosis is difficult and I have already tried all other available courses of treatment it's likely to be a full hysterectomy.