Pelvic Girdle Pain/ Endometriosis/ Mystery ILlness Mess - Please advise.

[featherandblack]

I'm absolutely at the end of my tether and would be abjectly grateful it anyone could shed light on what's wrong with me and what my next step should be.

I was successfully treated for endometriosis five years ago (laparoscopy and induced menopause). During my pregnancy with DD the following year, I developed long-term, severe pelvic girdle pain. DD is now four and my mobility has really improved over the last year, though I will always be disabled now. There is mechanical instability at the pubic symphysis, remoulding of the bone and pubis osteitis.

Over the last year or two, I've been having regular periods of ill health. If I stand up for two long I become breathless and will subsequently experience a blackout the next time I try to stand up after sitting down. During these times, I have dizziness, nausea, strange bowel movements and lower abdominal cramping. The nausea can be difficult to identify because I often get bad migraines causing nausea anyway. During the flare ups, I also get tiny sores around my nose and on the backs of my hands.

I've had every test under the sun which have all been clear. Privately, I have seen a gasteroenterologist and a rheumatologist. Though neither of them made a formal diagnosis, they both carried out tests and told me what they were going to diagnose if these tests were clear, which they were: IBS and fibromyalgia/Ehlers Danlos. I understand that neither of these conditions can be cured. I gave up dairy and most wheat, which seemed to help for a while. A scan also showed small gall stones which were felt to be too small to be causing the symptoms.

Over the last six months, my periods are sometimes less regular and more painful. I occasionally have faint brown staining mid-cycle. The lower abdominal cramping is much more frequent and seems to happen at any time during the cycle. The ongoing lower abdominal tenderness is most unpleasant and I do get frightened by the painful sensation of gas making its way through the system down there.

My biggest fear is requiring a laparoscopy or other surgical intervention. I became almost suicidal during the years of dreadful pelvic girdle pain and I'm well aware that it is far from fixed now. The thought of being unable to care for my family once again is terrifying. I don't know what to do. I'm constantly ill, yet the tests ordered by the doctors are all clear - so they are not interested in doing more.

Thank you so much to anyone who has got this far.

The thing I'm most aware of is the lower abdominal

[featherandblack]

I'm sorry - I have no idea how the extra line of text got there!

[simplydivine05]

Has anyone checked your hormones? Not just a one of blood test but at different stages of your cycle.
I sympathise with pgp, I have hypermobility syndrome and will also suffer for many years to come with my pelvis. I've had prolotherapy two years ago which made a massive difference to my stability (got me out of a wheelchair and back on crutches) and I see a private physio every 2-4 weeks which is just on going.