3 months of pelvic pain and lots of tests!

Posted , 11 users are following.

Hi guys.

So the past 3 months I've been in and out of Drs / a&e with pelvic pain and ovary area pain. I've had blood tests so many! A CT scan and a pelvic ultrasound. My  CT showed ovary fluid however that has now gone on the ultrasound and my nurse said fluid can be normal and come and go in the cycle. My pelvic ultrasound was normal, my bloods are normal.. so I'm just lost.

I still have lower right back pain which goes in to my hips it goes in to my legs and the pain comes in waves and seems worse at difffent times of the day 

I see a bladder specialist down Harley st in regards to a chronic bladder infection in my bladder walls caused by untreated cystitis from the NHS. So now I have a biofilm bladder infection. That can cause pain and inflammation however the pain I feel does feel like inflammation but feels different. 

I went back to my GP and he's just scratching his head still.. they are sending me to a gyno and they don't know what else to do. My gp said he didn't want me to have a laparoscopy.

I also noticed I'm gassy, bloated too with constipation . Could this be something silly like IBS? 

I'm aware I'll be in pain with my bladder thing but I want to know it is just that. 

I've had pelvic inflammatory suggested to me too.. I've booked myself in for some swabs as well 

My anxiety is really bad right now from worrying and I swear it's making it all worse. 

0 likes, 14 replies

Report / Delete

14 Replies

  • Posted

    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. 

    Report / Delete Reply
    • Posted

      I feel worried and confused with negative bloods and ultrasound. It could be so many things or My on going bladder issue however I feel very ignored by the NHS and my gp. It could even be a bowel issue but I feel they just ignore things when I say it sad
      Report / Delete Reply
    • Posted

      My pain began in February and ended roughly a month ago. I became pregnant in June so the pain was not caused by it but seems to be doing something to stop it perhaps. To this day I still have not found out what it was. I asked my doctor could it of been due to the low levels of rubella and she said noway. It's just hard to let it go when it took away months of my life. I gave up my job from the pain and became very isolated. I was on two nerve pain tablets and found once they were built up in my system they helped. I really do feel for each and every one of you it is such a horrible thing to be in so much pain and have no answers. Thankfully I don't  experience that pain anymore just stretching pain. I hope everyone finds an answer it can be such a long lonely process. 

      Report / Delete Reply
  • Posted

    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!  
    Report / Delete Reply
  • Posted

    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).

     

    Report / Delete Reply
  • Posted

    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

    Report / Delete Reply
  • Posted

    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/

    Report / Delete Reply
  • Posted

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

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

    Report / Delete Reply
  • Posted

    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 
    Report / Delete Reply
  • Posted

    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!

    Report / Delete Reply
    • Posted

      Hi, 

      This post is old but I was diagnosed with endometriosis via a laparoscopy I ended up paying to go private and was diagnosed with stage 4 endometriosis and then went on to have 6 months worth of zolodex injections and I’m due my next surgery next week. It’s crazy how much can happen in a small amount of time, from not knowing to diagnosis to another surgery!

      My periods were never painful until June last year when it all started out and painful periods aren’t my main symptom so never rule it out.

      My a&E tests  were always inconclusive apart from the fluid on the ovary which turned out to be endometriosis. If I never had gone private I’d still be taking IBS tablets and been fobbed off. 

      The only way to truley find out is to have a laparoscopy x 

      Report / Delete Reply
  • Posted

    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!

    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up