Pelvic and lower back pain can anyone help?

[durdledoor]

Hello I was previously on the endometriosis UK page although I had a laparoscopy two days ago to find that the surgeon found nothing wrong at all with my reproductive organs, I am now at an all time low. My GP won't see me until Thursday when I have healed from the procedure, although my physio has already referred to a back specialist.

I have already had considerable amounts of time off work, had physio, seen chiropractor and had actupuncture, had laparoscopy, internal and eternal ultrasound scans, bloods etc and nothing has been found.

I have pelvic pain, pain in legs although main concern is the painful twinging in my lower back, it aches continuously although sometimes just twinges so sharply. I am going to try and get s private MRI scan in the next week but have to wait to get a referral from the GP first.

I'm so anxious about having to go back to work, I need to speak to Octpational health and worried they will say I'm not in any better position to back at work before I had the operation which is true but I'm going to lose money and at the same time I still don't have a diagnosis.

I also had painful periods and painful intercourse which is why I was quite convinced I had endometriosis, I posted this in the pain concern forum but it was suggested to post here as well

Sorry for the long winded post, just wondered if anyone had a similar experience and could give me any insight into what could be wrong , many thanks in advance x

[janeingirona]

I've had a very similar experience to you; pelvic and back pain which then led to coccyx and rectal pain and bowel issues. All tests and lap negative, inc CT scan.

I eventually got an MRI done and was found to have adenomyosis (focal) on the back wall of my uterus, which is also severly retroverted and retroflexed and lies against my rectum (so that the adenomyoma is close to the intestines and results in inflammation in sacral region as.well).

So, to cut a long story short, I triwd POP pills (helped pain but caused nausea and constant bleeding), homeopathy (helped somewhat but hasn't been a cure), and had two private consultations with top endo docs. They all say hysterectomy, of course (they're surgeons, after all!) but since I'm reluctant to have major surgery, to try the Mirena coil. Another drug I've been offered is Esmya which is used to shrink fibroids (I have three small ones) but which my regular gynae thinks we could try as apparently it's being trialled for adeno/endo in the UK (I'm in Spain).

This week Im off to see an osteopath for back pain and will see my GP for a prescription for Esmya. Fingers crossed...

So, basically I think you shoukd push for an MRI and hopefully a skilled radiologist would pick up any adeno. However, it often doesn't show up on MRI either and then the only option left is to get an appt with an endo expert (tthere's a list on the endometropolis website).

[janeingirona in reply to janeingirona]

PS. My lap was performed by a regular ob-gyn. The specialist I saw recently said endo in the rectal-vaginal septum could easily have been missed. Was your surgeon an endo specialist?

[Mandi44 in reply to janeingirona]

Hey do you have constant pressure where your undy line is not just during your periods?

[PPSN_JudyB Pelvic Pain Support Netwo]

When I read this, I immediately thought of adenomyosis. If you are going to have an MRI try to ensure that the radiologist who reads the images is familiar with this diagnosis. You can ask for the images to be provided to you on a CD in which case you will have them to hand in case you need to seek a second opinion. The following pages on our website may be useful. What part of the country are you ? Dorset ?

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

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

[durdledoor]

Many thanks Judy really appreciate your help

[durdledoor]

I am in Poole dorset xx

[PPSN_JudyB Pelvic Pain Support Netwo in reply to durdledoor]

Same here, there are several of us near you. We were involved in all the work with our local hospital that led to the establishing of the Endometriosis centre here. Endometriosis related pain is just a part of what we do now as we broadened our work to encompass all pelvic pain conditions including nerve/neuropathic pain, pudendal neuralgia etc. I often go to Durdle Door !

Where In Dorset are you ?

[Suzysheep in reply to PPSN_JudyB]

Judy....

I also live in dorset.

Are you saying there is now a specialist pelvic team in poole hospital?

Can you give me details so I can get referred please

Thanks

[PPSN_JudyB Pelvic Pain Support Netwo in reply to Suzysheep]

No, there isn't a team unfortunately. There are a couple of people with an interest across the county but we don't have an interdisciplinary pelvic pain service. These are hardly existent with just a very few Nationally and I'm not sure these are very interdisciplinary. However I think we are making a bit of progress with people realizing that lots of hospital admissions are not good for patients or payers !

[durdledoor in reply to PPSN_JudyB]

Poole quay you? I often go to durdle door too

[PPSN_JudyB Pelvic Pain Support Netwo in reply to durdledoor]

Not sure what you mean by "Poole quay you ?"

[Pepper1977]

Painful periods and intercourse doesn't always mean endometriosis. Obgyn are not trained to look into nerves. Have your Pudendal nerve checked and genitofemrol nerve. I have genitofemerol nerve damage. Hope you feel better soon.

[durdledoor in reply to Pepper1977]

I have never heard of this pepper but I will do some research, thanks

[Pepper1977 in reply to durdledoor]

Google Dr Dellon and read is free online chapter about pelvic pain. He is a world renowned nerve surgeon

[Pepper1977]

I have no idea why they issue surgery instead of MRI first. I had this happen twice. To me it's crazy.

[sallytincan]

Hi I had similar symptoms in my low back sharp stinging sensations which felt like women's problems as had a mirena fitted some years before after having ultrasound scan and exams for womb probs all clear , had MRI scan on back to show had probs with discs and nerve irritation which is called lumbar radiculpathy I'm still having problems but know now at least it wasn't in my mind as I think they thought I was exaggerating my pain ive had sounds injections ehicj didn't eotk from the pain clinic am awaiting more appointments with pain clinic

[Hidden]

perhaps it's either interstitial cystitis, pelvic organ prolapse or pelvic floor dysfunction? see if you can get an rx for vaginal valium...it this calms the pain...it's most likely PFD (pelvic floor dysfunction) good luck!