3 months of pelvic pain and lots of tests!

Hey Kate, reading that is like reading about myself. Was in pretty much the same situation since February. I even had to leave my work two months ago because the pain got so bad. Since February I've been back and forth to hospital in basically an elimination process which is time consuming to say the least. To this day they still have not found the cause. I've had scans and tests done and all came fine. It can be disheartening. I am now on a waiting list for 8 months time being referred back to hospital to a doctor that diagnosed me with benign positional vertigo a year ago. They think there is a small chance that since one nerve in my ear is not functioning right that it could be affecting the rest of my nerves causing chronic pain. Anyways, I actually ended up getting pregnant in the mean time and it's so strange because my bloods were done and they found low levels of rubella. Which causes nerve pain in the pelvis. After all this time if it's something as small as that I will probably cry after everything I've gone through this year. It's so crazy. I was put on numerous nerve pain tablets and found they really helped. I had to come off them obviously and my pain is back. I hope you find an answer. It is such a long process but hang in there. 

Similar to my situation but mine has been going on for six months. It is not an intense pain in the lower left pelvis but is there pretty much every day at some point. I have had ultrasounds, ct scan, mri, pet scan ( because of history of lymphoma) and a sigmoidoscopy which could not be completed because of poor bowel prep. I have been diagnosed with diverticular disease and may be sent for a colonoscopy. During these investigations, other problems have shown up! Fracture of spine and impending osteoporosis and  kidney stones but no clear cause of continuing pain in llq. There is a tender spot on lower abdomen when standing but not when lying down. As long as it is not serious, I could live with it but would rather know what is causing it!  

Have you had kids? If so, one pain that can go into the legs can be Enterocoele. Also consider a Colonoscopy (rectum; colon scope) and Cystoscopy (bladder scope) if it is affecting your bladder. An inflamed rectum can cause terrible bladder pain. And with IC (cystitis), they can see if you have Hunners lesions (a hallmark of IC).

 

Hi kate.

Firstly let me say that I pretty much could have wrote your message! 

I had seen seven doctors for severe bladder pain. I was going to the toilet every 5 minutes and had no life. I also had a severe dragging pain in my pelvis and ovaries and bowel with major bloating! I was told I probably had interstitial cystitis which was devastating. I had a cystoscopy which proved I didn't in fact have that condition. I returned to the U.K. I saw a gyney and professor in urology at the Surrey research park who performed a laparoscopy and cystoscopy together at the same time. Still they couldn't offer any further information and endemetriosos and interstitial cystitis (again) were ruled out for definite. I was booked in for a hysterectomy to see if this could help as my pain worsened during my cycle. The 'only' thing the two doctors  saw that day was a very large vein in my ovary. I was referred to the Whiteley clinic and was seen the next day. I had an internal ultrasound and was diagnosed with Pelvic Congestion Syndrome. After two years of doctors, hospitals, tears, sleepless nights and severe pain, I had a diagnosis. I could have wept! I did weep!

I had an ovarian vein embolism and  a couple of months later I had sclerotherapy which took minutes. I was told I had to wait for at least three to six months for any improvements snd the scar tissue to die and I can tell you, nearly six months later I was pain free (I have since had treatment in the bowel too but Dr Whiteley had said I needed to get that done elsewhere). I actually left a review on the Whiteley clinics site recently as I couldn't believe how easily this condition was diagnosed and treated by just one specialist.

I think this condition is mainly in woman who have had children but males and woman without pregnancy can experience it. 

You might not have this condition but your details sound similar, especially because my bladder biopsy was inflamed with no bacteria, which meant their were no antibiotics to help. I had such a severe case and the treatment was so easy, I just wanted to share in case it helps. A simple internal ultra sound looking for varicose veins would diagnose or rule out! Please google and good luck x

This is very informative for me and also some women who have problem to their waistline. I am collecting some informative information about how to solve women waistline problem here: https://waistlab.com/

Update - I had a laparoscopy and was diagnosed with endometriosis!

I now have to start hormone injections then another laparoscopy in 6 months 

Hi Kate, do you feel like your low back locks and you get a tingle in your right? leg. You are really heavy where your undy line is and you feel like something is going to explode. My whole back squeezes and feel like my bones are going to explode 

Hi Kate! I hope you see this and able to reply. What you went through sounds exactly like me. I was wondering if you have particularly painful periods? 

I have a lot of right sided pelvic pain for the last 8 or so months, multiple trips to A&E with scans, xrays and lots other tests done but nothing ever seems wrong. The doctors always end up telling me that I must be constipated. 

I saw gynae and endometriosis was bought up but the gynae thought because my periods are irregular and not particularly painful then it probably is not endometriosis. 

Am very keen to hear about yours!

Kate, I had exactly the same symptoms as you. I was told by Kaiser Permanente it was a varicose vein by a ultrasound internally & externally. 6 months later still pain insurance changed went to a new doc she didn’t believe that was it went in for ct scan all negative. So back to Dr. but now I’m starting to believe that’s what it really is. Read up on this , I feel fine when I’m laying down. Do you? It’s a simple procedure to fix it. Not sure when I’ll do this or if I’ll do it. Some people just live with it. 

Good luck girl , it sucks but comforting to know we are not dying!