Undiagnosed chronic pelvic/abdo pain

Hi everyone. I recently joined the forum and this is my first post. I'm 32 and have been suffering with undiagnosed abdominal and pelvic pain for 6 months. It came on fairly suddenly, my bowels seem fine and the pain is largely affected by movement or positioning - particularly sitting down upright, laying on my side or walking for more than a few minutes. I've had a pelvic MRI, an ultrasound and seen the gynae and pain teams. They gave me steroid/anaesthetic injections into my lower rectus sheath (6-pack) as they thought it was ACNE syndrome but no joy. Been doing physio for 6 weeks and have started acupuncture and using TENS. It's so hard not knowing what's wrong and I've been off work the whole time it's been a difficult time and everyone has different ideas. I don't feel any better and it's very depressing. The gynae and pain specialists felt it's musculoskeletal but the physio doesn't... I'm waiting for a hydrotherapy referral and a CT scan by the colorectal team. Does anyone have a similar experience?

[carlysky]

Hey, sorry to hear about you.

I really do know how u feel, it as absolutely horrible not knowing what is going on and why you are in so much pain.

Where is your pain exactly? I have pain on groin, vagina (mons pubis), tummy.

I have been suffering for 2 years and it is ruining my life. I have had internal, external scans and nothing showed. Mri on hip because they thought it was my hip. I had a groin scan which showed lympnodes inflamed. I am having another groin scan in 4 months to see if still inflamed. Gynie wants me to be on yasmin pill for 6 months to see if pain goes away, if does then she will put it down to endometriosis.

Did your gynie mention endometriosis to you? Or put you on the pill?

[Hidden in reply to carlysky]

Sorry to hear about your suffering too. 2 years is a long time for you.

Yes I was put on the pill after coming off it last march (my partner had a vasectomy) as they suspected endometriosis, but I had a laparoscopy a number of years ago which found no evidence of it and I've been back on the pill for 5 months and no improvement. So they don't feel it's that - plus there is no link to my cycle which I was told was a key symptom. Not sure if you have found that..?

My pain is on both sides from my belly button down to my mons pubis too.

If I'm laying down flat in bed the pain subsides so I am able to have some relief that way until I lay on my side in the night. I'm on gabapentin at the moment - been trying everything from diclofenic and cocodamol to OxyContin and morphine but nothing seems to help. Have you found any medication helps your pain?

[carlysky in reply to Hidden]

Was your laproscopy via a general gynie?

What pill r u on?

When I was not on the pill I felt it was worse around period times. But I still had flare ups not around my period. So I am not sure. I am obviously not having a period now and I am still in pain.

If you go on to the endometriosis page on here. Quite a few people have a diagnosis of endometriosis and they have pain all the time and the pill didn't work for them.

I am on gabapentin too, how long have u been on it for. I've been on it about a month and I'm sure it is giving me even more stomach pains and as soon as I eat my body wants to poo it straight out and if I can't get it out It is a struggle and I feel uncomfortable. Have u experienced anything like this on it?

How did the pain start for you? What does your pain feel like? Mine feels like a barb wire feeling when the vagina,groin, stomach flares. But pubic bone area (which I was told was my distal insertion) is more of a ache/ sting feeling when don't have a flare up.

I find walking helps a little, as long as I don't go too far. And sitting down aggravates it. And standing for too long puts pressure on my legs too, almost feels like my legs, vagina want to give way.

[KaseyKat]

Meg,

My name is Peggy Rogers. I've had chronic pelvic pain for 20 years. It was due to a vaginal cuff abscess after a hysterectomy. It started out as pain while sitting, walking, & lying on my left side. Is your pain burning, throbbing, aching, constant? Describe your pain. Have you had a nerve block? Did you have a laparoscopy ?My MRI & ultrasound were normal. I tried medications, nerve blocks, neurostimulators, cryosurgery, radio frequency, and surgery. The only thing that has relieved my pain is stem cells. You can email me for information of my stem cell doctor. I recently received a stem cell paste injection into my damaged pudendal nerve area on 1/18/2017. I haven't had pelvic nerve pain since then. Take care.

[costagran in reply to KaseyKat]

i realise this is an old post but i,ve just read it.

how are you now?

if your still ok i'm over the moon for you.i dont know how old you are but its time for you to get on with your life after all these years of suffering.

well done.

i'm 5 years undiagnosed.

i thought i'd found my answer to my pain recently.

lemon juice in hot water with a little honey and olive oil first thing in the mornng did the trick.

but after 2 months i found my arthriticky joints were playing up.

back to the drawing board.

do let me know how you are.

[cdee]

Hi Meg, I wouldn't say my experience was super similar but some of the same issues. I'm 33, had a cesarean 2 years ago the sensation of the wound healing never went away. The pain shot up to a 10/10 6 months ago and I've been basically bed bound ever since. The site of the pain is about two inches above the skin incision. I have had lots of imaging done and there is a nonechoic area between the rectus muscles where they connect to the pubis. I hadn't heard of ACNE till you mentioned it. Wikipedia seems to say the pain is not central but unilateral. Is that your experience? I have had an MRN which I think rules out nerve entrapment...

My "diagnosis" is Chronic post operative abdopelvic pain. Changing position doesn't ease my pain and any activity whatsoever increases the pain. I am now really weak from staying in bed, as 6 months ago I thought I must have some internal issue that would result in emergency surgery any day! I'm using a rollator and a walking stick so at least I can leave the house for hospital appointments. I had an ilioinguinal injection which didn't help. The injection was a month before my pain became 10 so they aren't super happy recommending more injections. I haven't had any pain physio, waiting to do the pain management programme at the National Hospital of Neurology and Neurosugery. This is delivered by pain physios and psychologists. The founder of the clinic Dr Baranowski said my pain was not just nerve damage (​hypoesthesia and allodynia confirms there is some) "the pain she is living with is above and beyond neuropathic pain and probably represents central sensitisation and a muscle component". Three of the doctors at the appointment were late so I was unable to ask what he meant by that. TENS increases my pain. I have a list of things to try and swimming would be one of them if I could get on top of the pain. I had a CT scan that found bilateral calcification, which I'm told is an incidental finding but does lie where I get random stabbing pains (on top of the central pain). I am interested in shockwave therapy (similar to that you get for kidney stones) if anyone has experience of this...

I am sorry you've been having a tough time, I know exactly how you feel, it's exhausting trying to explain something you don't even understand to friends and family! Happy to talk over PM if you'd rather.

[Normie-Orms]

Hi there I see you posted a long time ago so how are you now? Anything work better than others? Norma