Pelvic pain for past 2 and half years and other symptoms

[Kel113]

Hello all,

I found this group in a desperate attempt to connect with anyone going through or anyone who would be williwilling to advise me, on my current health issues.

I am 34 years old, 2 and a half years ago (whilst pregnant with my daughter) I developed a rather painful very low to the left side, pelvic pain. At first I put it down to the pregnancy, 2 and a half years on, it continues. The pain is intense, it is almost so low it's in the bladder location and is only on the left side. It penetrates through my back like a burning throb.

Early last year I went through examinations, I had a clear MRI and after that, was basically dismissed.

They tried to perform a histeryoscopy (think i spelt wrong) and I had no sedation, and when the camera hit a point near the location of pain, a lightning bolt shot through me and down my legs and the doctor had to stop, so the investigation was not successful.

I felt comforted by the clear MRI and put it down to post baby.

However, since last year, the pain has worsened and not only am I dealing with that, I have also developed altered sensations in my hands and feet. Last year put out of knowhere, I began getting electric shock pains in my hands and feet and it has turned my world upside down ever since.

I can't say if the two are connected, as I just don't know anything at present, but all I know is it's getting worse and I'm lost.

Since a clear MRI my doctor won't hear any more of it. I have been referred to a neurology hospital but after a number of blood tests and MRI scans , my neuropathy is of unknown cause too.

So on top of the origional pelvic pain (unknown cause) I am now dealing with this awful neuropathy of unknown cause.

I am a 34 year woman with no previous medical issues, I know there is something going on in my body and I don't know how to deal with it where I don't seem like I've googled like a anxious mess, even though I know my doctors already think i am.

I am anxious because I know something's wrong, it's been a tough year because of that.

I've come across all sorts of things online but my biggest concern is that could my pelvic pain be cancer, even if my MRI was clear? If there is something wrong with my Bladder, would the MRI be a sufficient diagnostic test to rule that put?

Because I am also dealing with an unknown neuropathy, I have read that this type of neurological symptoms can present itself if there is cancer in the body (although not common)

It's all just getting me down, I don't k ow what to say to doctors anymore and I'm desperate to be taken seriously, the pain pelvic and neurological is getting me down every single day, and not knowing the cause is very hard.

Any advice would be gratefully received

[kalecolbe12]

It sounds like you most probably have nerve issues...pudental nerve pain in the lower left asbdomen and it could actually also be fibromyalgia...it is a night mare trying to get this stuff diagnosed...people say Lyrica (for nerve pain)helps....also pelvic floor therapy...you may need to see a neurologist but go to the interstitial Cystitis website ....sometimes it's an immune system issue too .so a neurologist and or pelvic floor therapist for both super knowledgeable about nerve issues related to muscular issues also I myself I'm seeing the pelvic floor physical therapist for pudendal nerve pain and rectal pain... It's more a process of eliminating things than a diagnostic thing

[kalecolbe12]

Forgot to also say it's very unlikely to be cancer it sounds like neurological pelvic floor pain neuromuscular related if you can possibly see a pelvic floor physical therapy specialists that's the best even if you have to pay a little bit more just for a consultation

[kalecolbe12]

Oh also try acupuncture

[Kel113 in reply to kalecolbe12]

Thank you So much for taking time to reply, it honestly is getting too much.

I don't even know if the 2 are connected.

All I know is the unknown pelvic pain came on first, then April last year, a neuropathic itch which quickly turned to shock pains in hands and feet.

I don't complain about my health ever, I'm too busy bringing up my kids which is why I know that this is bad and very hard to deal with.

I've always looked after my health so this is hard not knowing or having any control.

I'm currently on Lyrical, been on it a year, on a low dose as I'm too scared to to up it dues to side effects. So I dont really know if it's doing much to be honest, I suppose if I knew the cause I would be more comfortable knowing I'm not masking the problem

Thank you again, much appreciated

[Merc7582 in reply to Kel113]

Sounds like me I’m 51 year old male, with similar issues, during sex one day I had a what felt like a muscle spasm, underneath. I now think it has caused me PN. It burns through to low back and left side of underneath. Sometimes feels like it goes from tip of penis underneath to low back spine area. Been on nerve tablets but not doing a lot if I’m honest, also I had lower back MRI which showed nothing and no compression. The more you worry about it the worse it feels, worse when sitting down. I know what you say about cancer etc but don’t live your life worrying because I did. Just try to accept and move on nerves can take years to repair, try and walk and enjoy the outside. You will be fine, do not let it takeover your life xx

[swarke22 in reply to Merc7582]

Hi guys and gals,

I have been on my PNE for eight years, I’ve had surgeries that didn’t work for one reason or another, seen pelvic floor physios helped a little but now believe it’s the pelvic floor muscles that are too weak to support my bladder etc. So exercising now like I’ve not done in years. I’m doing DCT which is for men but some women like myself are doing it and I am strengthening my pelvic floor. A friend cured herself of these debilitating pains with the help of DCT and strengthening work. I will post back when I can. In the last month I have had two afternoons with NO PAIN. so I know I am heading in the right direction. DONT GIVE UP. PM if you like.

[fsmith9095 in reply to Kel113]

I'm sorry to hear about your chronic pain. I have had similar symptoms for years and the series of pain was eventually given the generic name, 'Chronic Pelvic Pain Syndrome'.

I met with dozens of doctors, most of whom dismissed my pain after countless exploratory MRI's and various invasive urological tests.

Last year, a visiting doctor at the pain clinic traced the source of the pelvic pain up to an issue with damage to the T6-T7 vertebra which is pinching the spinal cord. Apparently, damage to that area radiates down to the pelvis branching to the fingers, toes etc.

The only reduction in pain has been 1200 mg of gabapentin, so far.

They have prescribed numerous other medications and physical therapy, none of which provided any relief.

But do NOT listen to doctors who dismiss your pain. Be persistent in seeking out more expertise until you meet with the doctor with the right amount of training, experience and empathy who "gets it" who will hopefully uncover the root cause of your pain and provide the correct treatment.

Good luck!

[Kel113]

Meant Lyrica, auto text

[Hidden]

It sounds like it is all related, or at least the pregnancy pain prompted the other pain, etc. I know a woman who after her 2nd child spontaneously got tremendous pelvic pain. I've been on a search for healing for 10 months or relentless nerve/neuromuscular pain post-fibroid surgery. Seen tons of doctors. I have bladder pain when I urinate, cannot exercise anymore due to pain and it's all in the left lower quadrant. I have no answers except they think it was nerve damage during surgery.

[Pelviccrusader]

The hands and the feet being affected simultaneously suggests a systemic affect. Have you been tested for heavy metals? I had some serious nerve issues from eating too much fish and this can happen very easily-please don’t underestimate it. Alternately, what is your muscle tone like? If you have very tight muscles, They can pinch the nerves and compromise their function. The hands and the feet get hurt the most since they are most peripheral. Not sure how this relates to the lower left pain . It is probably worth getting an MRI neurography to visualize the nerves in all of your symptomatic regions. In the meantime I would suggest being nice to your nerves-lipoic acid, acetyl carnitine etc-many good YouTube videos. I have similar issues with my hands and feet. I had a topical mix of the b vitamins, vitamin c, and vitamin e made and it works well in combination with a heating pad. Blood flow is key. Good luck- these are all preventable conditions-we live in a world that does not value biomedical research. Our national health plan is “just don’t get sick!”

[pizon]

I can only speak for myself I too have had the left side pain I have found acupressure and the chiropractor have done wonders for me if you can find an acupuncturist or acupressurist it may help again in my personal experience with the p/n pain was radiating from the psoas muscle once I started working on that I feel so much better ....the medical profession dose not treat the body as a whole they only treat the symptoms again I am not a dr. or a professional I can only speak as to what has worked for me and the medical profession has not helped infact they have made me worse I had a uro/gyn try to tell me it was interstitial Cystitis and wanted to blow my bladder up with water in the operating room thank God I didn't let them do that there is also a book healing pelvic nerve pain ...I wish you the best of luck

[pizon]

Also I wanted to add that all the meds that I tried ( 5 in all ) for nerve pain did nothing but give me bad reaction as well as other women I know if you can find a pelvic pain dr. who specializes in the nerves in the pelvis then you can get diagnosed