confused

[unlucky2014]

Hi

I have been diagnosed through 2 different NHS hospitals / trusts that I have an enlarged pelvic blood vessel and was diagnosed with Pelvic Congestion syndrome.

To cut the story short, I have been backwards and forwards seeing different consultants and tests, and a failed attempt at an embolization as they couldn't find an access point after 3 hours (by interventional radiologist) !

Now today, I had a transvaginal and ultrasound (done by a interventional radiologist) where it was mentioned that there is no reflux so being referred to gynae.... now this is where I am completely lost, no one has EVER mentioned anything with reflux and have always said how big my pelvic blood vessels are and that the left side is a lot bigger than normal.

What the hell do I have? and what do I do about it?

I just feel so very confused on the situation, and emotionally and physically don't know what to do / go or anything.

[PPSN_JudyB Pelvic Pain Support Netwo]

Have you thought about writing a few questions down to take with you as well as taking someone with you to make notes so that you can revisit the responses afterwards ? I'm sure some ladies on here will help you with questions to ask.

[Hidden]

Hi, please be patient, you are on the right track. A gynaecologist is the right person to be able to explain everything and what your plan of care will be. Try to take things easy

and try not to worry too much. Good Luck and let us know how you get on.

[unlucky2014 in reply to Hidden]

Hi

I understand but because I have larger blood vessels they referred me to interventional radiology to get them reduced etc. Now I'm being referred back because my blood vessels are large. It just makes no sense

[Hidden]

Did you ask them at the time, why? You said you had been referred to Gynae. I think perhaps you could phone the department to ask why? as you are so confused. It is better than worrying.

[25clai]

I too have been diagnosed with pelvic congestion syndrome. I totally understand how frustrating, stressful and even getting to a diagnosis , took me about 3 years. I have been having problems for years with a chronic bladder disorder, which has the effect of sensitised inflamed lining. Symptons increased during menopause , (I am 2 years post menopause now). As chronic pain in my right side increased in spite of cystoscopies and various therapeutic bladder treatments. I had a laproscopy via my local gynaecologist, who diagnosed pelvic congestion syndrome and referred me to intervention radiologists, which took 2 years to get to due to NHS funding issue . I had intervention radiology treatment on my varicose veins leading to my ovaries . I was told the op would take 30-40 mins if they could locate veins. It took nearly 1.5 hours just to embolise the left side (where I had no symptons). They then looked at the right. After 1.5 hours of digging around and not finding the veins on the right side, they deemed the veins "competent" ie no reflux. The valves in veins should function to blood flowing back and effective "pooling" creating pressure and pain. I am not a medic, but that's the impression I have. I left hospital in June this year with multiple metal coils in my left side to shut off veins and prevent problems. The recovery took about 3 weeks of debilitating pain. Then felt much better, managed to cut down pain meds, went on holiday for 2 weeks. In August, started to feel terrible. I assumed it was bladder related , as did GP. Took 3 courses of antibiotics. During 3 course, acute pain in lower right abdomen sent me back to GP. I was sent straight to A and E with suspected appendicitis . After 2 days of test etc , I was told there couldn't see anything suspect re appendix, but needed an urgent colonoscopy , as there was a possibility of bowel disorder, due to digestive system affected. Hospital sent me home. 2 days later felt worse, went back to A and E. Could hardly walk by this time, no sleep etc. Rushed through a and e , put under gynae and surgical teams as they were unsure. Spent 4 days in hospital during which time ,went through gynae tests. The urgent colonoscopy typically didn't happen. Nothing showed. Local hospital knew nothing about treatment I had down in London hospital and totally freaked when they saw metal coils. Refused to do any more tests until I had a post op consultation for the embolism. Booked an outpatient appointment and got myself discharged, rather annoyed as by now on major amount of pain killer to function.Radiology department very kindly saw me 4 days later, due to the mess I was in. Realised by now that travelling by car increased pain to a level not experienced since being in late labour with a natural birth / fractured ribs. booked an ambulance on this basis , as sitting upright in cars seemed to not help. Went on stretcher. I arrived at outpatients for consultation still in great pain. Tried to get up off stretcher, nearly passed out with the pain. Admitted to hospital under gynae via a and e . Decided to run same tests as per local hospital. Nothing showed. Gynae consultant and intervention consultant came to see me and suggested that I should consider total pelvic clear out due the severity of symptons ASAP . Ie hysterectomy and appendix. (From my experience the gynae department is interlinked to intervention radiology. ) there was no guarentee even after surgery that it would work. I wanted second opinion, went back to local hospital (via stretcher, took 20 mins to recover from extreme pain from journey before I could even talk). There was a constant query from the consultant as why the right side was not embolised, during vein treatment. The suggestion was to have another laproscopy to analyse veins and likely removal of right ovary and Fallopian tube , as this may help. I thought that this could reduce blood build up in right veins and also potentially relieve some of the pressure / pain I feel all the time in varying degrees. Colonoscopy came back clear so ,Had the op just over a week ago under gynae. I had bladder problems post op, and bigger incision to remove ovary etc. Advised 4 -6 weeks recovery. I am just over 1 week post op. Too early to say if op has worked. I cannot walk far, haven't dared to go in a car anywhere. Cannot face idea of normal life. Lost my job now due to no work since mid August. (self employed contract) .However, typically NHS the consultant who saw me, did not communicate with team who operated. Post op, they said it was impossible to even see varicosed veins underlaproscopy, so I have no indication on state of veins . ( irritated as were originally diagnosed that way). At one stage it was suggested that I go to a vein specialist, referred by the embolisation consultant to see overall vein function and access solution to symptons that way. I may seek this out if my surgery doesn't work. From my experience , it is clear that gynae is a route to diagnosis (if you have a savvy one) , but also gynae seems to step in when more invasive surgery is advised. There seems to be little knowledge of intervention radiology in my local area, it is still quite "new" in UK. My recent laproscopy saw nothing wrong , so I feel relieved to have had a second opinion before jumping at hysterectomy. I think that this a traditional "solution" offered to post menopausal women, when there is a massive query on a diagnosis. Even though I am postmenopausal , the removal of my ovary has pinged me back to night sweats and other nasty menopause symptons which I thought I had gone through. I am hoping for light at the end of a very long tunnel, but now a referral to chronic pain management team suggests otherwise . I hope you can get some positive solution / outcome. I understand how debilitating this condition can be, it does not help being unable to drive with teenage children, seems to spend a lot of time now organising family logistics to try to run a family in this state.