I am so sorry to have to write this post - I had hoped that, by now, there might be an end to my troubles. Unfortunately, I have gained no relief. I am SOOOO confused!
I was diagnosed with Endo in late 2010, and a lap surgery confirmed it in early 2011. This was after more than 9 years of incorrectly diagnosed symptoms - and the associated suffering! During this first surgery, I had laser ablation, and afterwards, I was told that ALL my Endo was gone.
Not long after the surgery (less than 3 months) I ended up in A&E in complete agony - unable to walk properly, unable to move from sitting to standing, my body twisted with pain and cramping so that I could not stand straight... This happened on a further couple of occasions, and each time I was fobbed off with a defensive response from the Doctor I saw, and a suggestion that it was "muscular". I was given painkillers, and on one occasion, physio - but nothing helped. So, I sought a second opinion from an Endo specialist (the original surgery was done by a "bog-standard" Gynae). I had to fight SO hard for this second opinion, and it caused SO much trouble with my G.P. and Gynae... It left me feeling like they saw me as a nuisance, and resented me for asking questions...
Still, a further lap confirmed that the original surgery had left some Endo in situ - it had been missed. I also had Deep Infiltrating Endo in my uterosacral ligaments that had been missed. So, I had a THIRD lap, that included radical excision of Endo. Still, I continued to have pain following this, and I ended up having a fourth lap, in which I had a peritoneal biopsy, and had adhesions cut away.
During the third and fourth laps, my ureters were stented and I had a bladder and bowel prep because it was suspected that I had Endo on, or near, bladder and bowel. After the surgeries, I was REALLY unwell, and my bladder shut down for a while - I ended up with a catheter! I was NEVER fully told what stage my Endo was, NOR was I told properly where all my Endo was - or where the adhesions were. My new Endo specialist told me after surgery four that he did not want to risk further surgery if I had pain or future symptoms, because of potential damage to my bladder or bowel. Also, because I suffer from adhesions. However, he told me he thought he had removed all my Endo.
For a while, I was pain free. However, over the last year (lap four was in 2014) I have seen a recurrence of symptoms. I still have VERY painful periods, in which I pass huge blood clots, and suffer a lot of cramping. I also suffer from flooding, especially if I am warm, or exert myself physically. I experience bloating and water retention around the time of my periods, accompanied by frontal pelvic pain (near my pubic bone and the site of my lap scars). Added to this, I get intense pressure in my bladder and a feeling of needing to pee. And I get diarrhoea, too, for up to a week after the period has ended. Finally, I suffer from constant lower back pain, worst on the left side, which can also radiate to my buttock. It is aggravated by sitting, walking, leaning forwards, or by lying on my back.
I have sought a further opinion from a new Endo specialist, and recently had an MRI scan. Following this scan, I was told that no Deep Infiltrating Endo showed on the image. Other types of Endo were NOT discussed. I was also told that I had damage/deterioration to two vertebrae at the base of my spine, and damage to my sacroiliac joint. The specialist suggested that this could lead to some of my pain and symptoms, as there may be pressure on nerves connecting to my bladder and bowel, as well as inflammation. I was NOT told how the damage could have occurred, or how severe it is. I was told I could be referred to a pain specialist (this was over 2 months ago) but I am still waiting to hear. I was also told that I could have another lap, if I wanted one, as the specialist felt I had adhesions. He said he could trim the adhesions back, but they might regrow.
I am now SO confused, because I still have symptoms but am not clear as to what is causing them. I am concerned about the joint and nerve damage I have sustained, and want to know how it occurred - also how it may be treated. I am also baffled, because I still feel as though I have Endo symptoms. I still have problems with my periods, which CANNOT be caused by joint damage. If Endo is not causing my period problems, what is? Could it just be adhesions? Should I have them removed, or is this too risky, and pointless? Will they simply regrow? Might the MRI not have shown up some Endo which could still be there? Is this why I have been offered another lap? And what about the nerve damage?
I am hoping somebody could offer their thoughts on my situation, because I feel at a loss to know what is the best way forwards. I am also afraid to go back to the doctors, because they have made me feel like such a nuisance. I have had to fight, and fight so hard to get anyone to take my symptoms seriously, and to get the correct diagnosis. This whole issue has become a real pain! I jus want to make some sense of it.
Apologies for the long post... I just needed to explain what is going on. I would very much appreciate anyone's advice. Thank you in advance.