Feeling pretty unhappy at present. As some of you may know, I have Endo, and I've had 4 lap surgeries so far to try and deal with it. My most recent surgery was March this year.
I really don't feel I've ever been given much information (or the truth) about my Edno. All I can tell you is it took from 2002 - 2011 fighting for a diagnosis (my original Gyane was useless, and misdiagnosed me). When I finally got my first lap (April 2011), it was confirmed I had Endo, but the hospital I was under (Blackpool) simply told me afterwards they had removed it all, and discharged me with NO follow up! Not long afterwards, I ended up on several occasions in agony at A&E - literally doubled over, and could not move due to searing, ripping back and pelvic pain. The hospital refused to discuss Endo, and kept trying to say it was muscular. I ended up on crutches, and taking Oromorph!
I then did a lot of research on-line, and found an Endo specialist centre that I demanded referral to, as I was still in a lot of pain. I also have other ongoing symptoms including frequent urination or feeling of needing to urinate; diarrhoea (worst @ menstruation time); MAJOR bloating (tummy looks pregnant); bad water retention (especially in my fingers, which look like red sausages and go all clammy); back pain; nausea; gas; lower pelvic pain; fatigue... ALL these symptoms are still present today...
Anyway, I had 3 further lap surgeries at the specialist centre. Turns out that Blackpool only did laser ablation and had actually left Endo present. They had missed the fact I have deep infiltrating Endo in my utero-sacral ligaments; so more recent surgeries have included radical excision, or so I've been told. During the last 2 surgeries, I had ureteral stents (and ended up in bladder urinary retention), I also had a bowel prep. However, I was never really told fully what they expected to do. And afterwards, I've never really been sure what's been done.
Nobody has ever told me what stage of Endo I have. I don't really feel I've been told fully where it is, either. At each appointment, I've been shown different images of my Endo. All I know is it was in my Utero Sacral ligaments and Pouch of Douglas area, and somewhere near my bladder and bowel (possibly ON them). Before my last surgery my Consultant seemed anxious about doing more surgery due to risks of adhesions, and possible bowel perforation. However, none of the information I am given seems clear; and I tend to get evasive answers to questions.
After my most recent surgery, the specialist told me he thought he'd cleared all my Endo (but then he added he can't guarantee it won't be back). He was keen to discharge me, and I felt a nuisance for wanting to stay on his books, so I reluctantly accepted discharge.
However, I still had bladder and bowel symptoms, so I was referred to Gynae- Urology, who I'm still seeing. They recently did urodynamics tests, and I'm waiting for a further appointment. The Gastro consultant also did tests, but said they could find no problems inside my bowel that would be causing the diarrhoea, so they feel the issue is EXTERNAL (they have discharged me - saying they think my Endo specialist should follow up).
I have had a really bad week - getting up at night to pee. I had diarrhoea this morning with bad stomach cramping. My tummy is so bloated it feels tight and tender to the touch. When I had a shower today, the water hitting my tummy was painful and made me feel sick - it also triggered diarrhoea. I also feel nauseous, and fatigued. I have REALLY BAD water retention in my fingers (which even my Asthma nurse commented on during my check up), and a wheezy chest. My Asthma nurse, and chest specialist are concerned I may have lung Endo (as my symptoms get worse @ menstruation, and I have pleuritic pain on the right side).
I am unable to get through a day without pain killers - Ibuprofen, Paracetamol, Aspirin or Cocodamol. Today, even these are not helping. I'm also concerned that, despite my diarrhoea and loss of appetite, each time my GP has weighed me they say I am gaining weight. What confuses me about this is that I still fit into all my old clothes (no bigger than size 12) - and that is despite the bloating and water retention. If I believed the GP, I would have to be at least a size 16! To add to this, the GP thinks that because I am not losing weight, I cannot have any serious health problems!
I am at a dead loss what to do. None of my Doctors seem to communicate with each other, and none of them seem to think they can do anything to help. They all just discharged me while I still have symptoms - it's like each one thinks somebody else should be sorting things out! I've tried a Tens machine, the Endo Diet, painkillers, surgery, the Pill, the Mirena... nothing seems to be working. I've reached a point where I feel worn out by all this - AND I STILL DON'T EVEN FEEL LIKE I TRULY KNOW WHAT'S GOING ON WITH MY ENDO.
I'm usually quite a tough person, but this is really starting to frustrate me. I even cried in the shower this morning! Family and friends just DO NOT seem to understand any more. They seem to think I'm coping; and they really are NOT interested any more in hearing what is truly going on. They just keep telling me to go back to the GP. Fat lot of use that is!