24/7 Pelvic pain - feels like I'm in labour but tests show nothing!!!

[janeingirona]

Hello. Im 48 and resident in Spain. For the past month I've had increasing pelvic discomfort and pain. Cervix and rectum were very painful during pelvic exam. I have a constant feeling of pressure and when I m standing up, feel as though my uterus is fallling out. Rectal pressure is constant as is lower abdominal pain. I cannot sit properly on a chair for more than a few minutes.

in the past month I've had several ultrasounds which revealed small fibroids, a negative CAT scan and laparoscopy.

Prior to this I have had increasingly heavy periods. I have a history of spotting and prolonged periods and am APS positive (recurrent miscarriages)

I'm so sure there is something inside my uterus but have been told it's not a gynaecological problem.

I'm pretty depressed and don't know where to turn. Can anyone please advise me where to go next? I can't carry on like this - I have a young family, a job and play the cello (am even beginning to wonder if it could be related to prolonged playing)

[Hidden]

Sounds like it could be Adenomyosis. Have a look at this great website:

m.adenomyosisadviceassociat...

I have adenomyosis which was diagnosed via an MRI

Scan. Adenomyosis is almost impossible to detect by laparoscopy

I have heavy and prolonged periods and a feeling of "heaviness"

Best of luck.

Barbara x

[janeingirona]

Thanks Barbara. I've had a look at the website but don't think this is my problem. The pain isn't related to menstruation - it's a constant pain.

Heavy, prolonged bleeding and irregular cycles have been worsening over the last few years but the pain is more recent (about 5 weeks), and came on after a particularly heavy period.

[sharelle]

Hi would it be your bowel as the pains are the same? Do you go regularly? Try writing a diary of when it's worse and when it's not so bad and see if theres is a link

[trishj46]

You might want to try looking up pudentel neuralgia site. You seem to have many of the symptoms, especially unable to sit. and pelvic discomfort, pain, along with pressure and rectal distress. I have entrapped nerve in rectal anal site with great pressure. I have PN. Many Doctors know nothing about it in US. Check out google!

Hope this helps!

trishj46

[PPSN_JudyB Pelvic Pain Support Netwo]

Hi Jane,

This sounds as though this is related to the uterus, there are several things it could be : endometriosis : recto-vaginal which is a particularly nasty type of the disease, adenomyosis, fibroids which you say you have but they may have been mistaken for adenomyosis: have you read our evidence based certified information on this and on deep endometriosis ?

pelvicpain.org.uk/index.php...

pelvicpain.org.uk/index.php...

Another possibility is rectal prolapse but this can co-exist with other conditions including the above. It may be useful to see a colo-rectal and a pain specialist.

Let us know how you get on

[juliansmom]

Pn sounds like, overlapping condition, generalized vulvodynia, oversensitive nerves if nothing shows on an MRI with contrast to look for inflammation. Check out pelvic inflammatory disease and pelvic congestion syndrome as well. Don't drink anything except water in the meantime and if your in the u.s message me and I can recommend a doctor.

[janeingirona in reply to juliansmom]

Thanks. I've been looking stuff up and had wondered about PN too or pelvic congestion syndrome. I also thought IC was a possibility. Dics here in Spain don't seem to know what I'm on about.

They want to do a colonoscopy to check it's not bowel related but am worried it could make the pain worse. I had an enema before the lap and it was excruciatingly painful. I read that it can make IC worse (just kn case that's what I have)

I had a contrast with the CAT scan so they won't do MRI with contrast so soon after

I really don't know where to turn for help.

[juliansmom in reply to janeingirona]

Seek out a pelvic pain specialist or a urogynocologist. Just to be safe go on the ic diet eliminating any foods or drinks with citric acid. The med I'm on that saved my life after months of horror and near death is nortriptyline. Mention this to your next doctor. If your condition is nerve related this may help you. Some people also are helped by gabapentin, baclofen, diazapam suppository. There are topical creams. I also take a muscle relaxer for pelvic floor dysfunction. There's so much info but its hard to get a correct diagnosis. Even if you do finding pain relief is trial and error. Don't give up. Keep searching for answers. If something doesn't seem right to you trust your instinct.

[xcht in reply to juliansmom]

sorry can I just ask what you mean by over sensitive nerves and with contrast look for inflammation? I'm in the same situation as above. nothing showing on tests and been seen for laparascopy

[juliansmom in reply to xcht]

The contrast is a dye put in through iv during the MRI to detect inflammation which can be be treated with antinflamatories

[juliansmom in reply to juliansmom]

Nerves send signals to the brain that there is a trauma in the body sometimes long after your body is healed and all tests are clear.like phantom limb pain almost. Your brain continues to believe its in pain and the nerves become hypersensitive. Google nerve hypersensitivity and see if it sounds like you then discuss it with your doc. There are meds and alternative treatments for this kind of pain.

[janeingirona]

I meant docs!!

[kiwi1]

I know this is old but you sound very similar to me and I just discovered something called pelvic congestion syndrome. Please look it up - I had a lightbulb moment and I truly believe you will to, I hope this reaches you

[missyw23]

I have exactly the same and I have pid they couldn't detect it until I had a laparoscopy I have always said my pains are like govobg birth without the pushing out bit I feel for you sweet and it is really hard thoughts are with you xx

[Pelvic18]

Its def gyne or nerve. If nerve u need someone who understands pelvic pain i to feel like labor 16 months of pushing but nothing to push this for me happened after hysterectomy. My Dr was Aaron Filler in Santa. Monica, Ca google nerve med he travels abroad as well.

Feel free to PM

Keep me posted

[Nicknicks58]

hi, I feel your pain, I've been diagnosed with nerve damage and put up with inadequate medication for over ten years I'm thinking that it's actually pelvic floor disfunction, I also get muscle spasms and numbness in my vagina hope this helps